LATEST NEWS

March 01, 2005
Our last visit to Boston was on 2/2/05. We had a repeat MRI at Children's which basically told us that nothing has gotten any worse with the CDH. Apparently, Gabriella's total lung volume for both lungs at the first MRI was 19% and this time is was 21%. We'll take any improvement, even if it's 2%! We also had an ultrasound which showed Gabriella's growth is right where it should be.

We toured the neonatal ICU at Children's and met with the neonatologist at Brigham & Woemn's where we will be delivering. Even though seeing the ICU and hearing some of what we will be going through was terrifying, I am glad we have an idea of what to expect.




March 01, 2005
I have been going for biweekly non-stress tests here in Connecticut so they can keep an eye on Gabriella's vitals and my fluid level. Sometimes mom's who are pregnant with babies with CDH develop a condition called polihydramnios, which is too much amniotic fluid. This happens because the baby isn't able to swallow the amniotic fluid as she is supposed to and the condition can be serious for both mother and baby. Thankfully, my fluid level has been perfect each time they have checked it. The nurses keep commenting on how wonderful Gabriella's non-stress tests are and how strong she is. We are holding on to that and praying she is a little fighter.

When I spoke with the nurse in Boston last, she said the doctor wants me to have an amniocentesis here in CT to check the baby's lung maturity, which is different from the issue with her lung volume from the CDH. If her lungs are mature, then the plan is to induce me at 38 weeks. My amnio is scheduled for 3/11/05.




March 04, 2005
Yesterday I went for one of my biweekly non-stress tests, which was once again excellent and then I had a follow up ultrasound. Apparently, Gabriella's growth has significantly declined since our last ultrasound. Last time she was 44th percentile and this time she dropped to 10th percentile. She weighs about 5 lbs 2 oz. The doctor expalined that this could be from the diaphragmatic hernia as it is difficult to accurately measure the stomach because the contents are in her chest. They also found some increased amniotic fluid, which is normal with CDH babies because they aren't able to swallow the fluid because of their compromised lungs, but can also become dangerous so they need to keep a close eye on the fluid levels.

Basically I was told that they can no longer care for me here in Connecticut and that I need to be seen in Boston for the rest of the pregnancy. The doctor explained to me that this is now an urgent situation as I need to be monitored closely and may need to be delivered at any time. So, we were told to be in Boston by Monday. We aren't sure at this point if I will need to be hospitalized or even what tests they want done or how often. We are waiting to hear back on that. We also aren't sure where we will be staying as our reservation for The Devon Nicole House isn't until 3/17/05 and right now they are full. I spoke with the social worker at Children's who is working on seeing what they can do for housing for us until something opens up at The Devon Nicole House. So, we are off to Boston two weeks earlier than expected and I guess we will be winging it.

I went for some Doppler tests today in which they measure the blood flow from the placenta to the baby and they were good. I also had another non-stress test which I was told was "stellar." So those are good signs. The doctor said there is a possibility that Gabriella will not grow anymore and may end up being a small baby. They will need to closely monitor this as well because it will come down to which is more important at the time- waiting for her lungs to mature or getting her delivered because she isn't growing.

I am waiting to hear back from Children's as I write this, so when I know more, I will update some more.




March 07, 2005
Well, it looks like plans have changed. When I spoke to the folks in Boston on Friday, they informed me that they aren't as concerned about the situation at this point and that it isn't necessary for us to rush off to Boston today. The OB wants to see us on Wednesday for an ultrasound and possibly some other tests. If Gabriella looks good, she hopes to send us home for another week. That would get us to 38 weeks and then they would most likely do the induction. We need to go to Boston on Wednesday prepared to stay in case things do not look good or have gotten any worse. We were told that the fact that Gabriella's non-stress tests are still good and her doppler tests were good are positive signs and that the decrease in her growth may be because of the CDH and not accurately being able to measure her stomach. They will check her growth again on Wednesday. If it's still declining, then they will need to determine if it's more important to wait for her lungs to mature or to deliver her. I will have more info today, so I will be sure to update later.




March 08, 2005
We have had yet another change in plans. I went to my OB appointment here in CT yesterday. It seems I am now 2-3cm dilated and she said I really need to be in Boston. I spoke with the nurse in Boston and she agreed, so we are off today. Wednesday we are scheduled for a non-stress test, an appointment with the OB and an appointment with the pediatric surgeon in Boston. We should have a better idea of where we stand as far as Gabriella's status and we should also have a date for the induction, which I think will be sometime next week. That is if Gabriella doesn't decide to make her grand entrance on her own sooner.

We are taking Alyssa with us to Boston until Friday and then Rob's parents are going to come and take her back to CT. Then they will come back when we have the baby. We figure maybe we can enjoy a few days in Boston as a family before everything begins.

We will be staying in a hotel Tuesday through Thursday night and then we will be going to The Devon Nicole House for Friday and Saturday night as they had an opening. Unfortunately, they don't have a room for us Sunday night, so we may need to go back to a hotel. Then, we can check back into The Devon Nicole House for our reservation beginning on Monday.

I will do my best to update this site as we get more details. I have given my email distribution list to my aunt and asked that she correspond to everyone when the baby is born in case we aren't able to update right away.

Thank you to everyone for all of your prayers. The situation is in God's hands now and we are praying that our sweet Gabriella makes it through her difficult entrance into this world.




March 09, 2005
Well, we made it to Boston! We actually attempted a drive up yesterday and had to turn around due to the weather. We have Alyssa with us and hope to keep her here with us through the weekend. That way she can spend some time with mommy and daddy before all the craziness starts.

We had a non-stress test at Brigham today and Gabriella was reactive and things looked good. We also met with the OB who said she hopes to schedule the induction for the end of next week or possibly the beginning of the following week. We are really hoping it is for next week. We have an ultrasound scheduled for this Friday and they will check out Gabriella's growth again and see how things are progressing. If her growth has decreased further, then they may need to schedule the induction sooner.

We also met with the pediatric surgeon who said Gabriella's condition is still classified as moderate, and we won't really know how bad things are until she is born. He said she may or may not need ECMO, but they will have it on standby in case. He told us he would like to see the induction scheduled for next week because it's always better to have to whole team ready than risk me going into labor on my own. Rest assured, if that happens, there is always a surgeon on the floor. But we'd all like to see a daytime induction scheduled for when everyone is available.

We will continue to keep everyone updated as we get more info.

Love to all!




March 11, 2005
On Thursday, we didn't have any appointments scheduled so we decided to take Alyssa to Boston Children's Museum. What an awesome place. You can spend all day there, which I think we practically did. Alyssa had so much fun! It was nice to spend the day together as a family doing something enjoyable. If any of you are ever in Boston with your kids, definitely take them there. It has 4 floors filled with activities and exhibits. There's water play and bubble play and dress up rooms and arts and crafts and science exhibits. I could go on and on. By the time we finished, Alyssa was ready to keep going and mommy felt like I was going into labor!

I started feeling crampy and like I was having contractions. When we got back to the hotel room, I was sure I was going to go into labor that night. I must have just overdone it because this morning I felt much better.

Today we checked out of the hotel and went for an ultrasound at Brigham. There wasn't much difference from the one I had in Connecticut last week. This one showed Gabriella's growth at 12%, as opposed to 10% they got in CT. She weighs about 5 pounds, 5 ounces, which is theor best estimate because the belly cannot be accurately measured with the stomach contents in the chest. As far as the biophysical part of the ultrasound, she got an 8 out of 8, so otherwise she looks good. They saw good movement and practice breathing (which I guess all babies do in utero and Gabriella is no different because she doesn't know she is sick).

I tried to call the surgeon, but he had already left for the day. I will call him on Monday and hope he can coordinate an induction date for next week.

We checked into The Devon Nicole House this afternoon. We are all settled in our room and the house seems really nice. Alyssa is having a blast because there are other kids here at the house and all sorts of toys. The friends that we know who are also staying here have been wonderful. They met us at the house and helped us get all our stuff up to the room. They even watched Alyssa for us while we got our things unpacked. Their son is three, so he and Alyssa have become fast friends. All of us may try to take the kids to the aquarium this weekend. Their daughter was born three weeks ago also with Congenital Diaphragmatic Hernia and seems to be doing well. We are hoping Gabriella is a little fighter as well.

Hopefully it will be a quiet weekend and we will have more information on Monday about an induction date.

Good night and lots of love!




March 11, 2005
One other little thing I forgot to mention about our ultrasound today. The sonographer commented on how much hair Gabriella has and that she has cute little chubby arms. I think it's pretty cool how they can see hair on the ultrasound. That old wives tale about heartburn and your baby having a lot of hair must be true because I have it bad!




March 15, 2005
Well, it was an uneventful weekend so there wasn't much to update. We checked into The Devon Nicole House on Friday and then there was a snowstorm on Saturday, so we didn't go anywhere. Sunday I was finally able to get out to a grocery store to stock up on some food for us to have here in the house. Our friends that are here had some family visiting and they drove us to the grocery store.

Alyssa is having a blast with the other kids here at the house. She has become fast friends with the son of the couple we know here. She came down with a cold our first day here, so she hasn't been feeling too well, but is still being a little trooper.

Today we went for a non-stress test and again, Gabriella passed with flying colors. She had excellent activity and the nurses kept laughing about how she moves so much and they have to chase her around to keep her on the monitors.

We also had an appointment with the nurse practioner in Maternal Fetal Medicine. The first thing I asked her was if they had an induction date for us. She told me that the doctor wanted to let me go into labor spontaneously on my own. I asked her why we weren't going to do an induced labor anymore and she said the doctor thought it was just best to let me go on my own. I asked if there was anyway we could schedule a date because we are already here in Boston just waiting and also because we want to make sure Dr. Wilson (the pediatric surgeon) is available when I do go into labor. The nurse practioner said she would check to see how dilated I was and then call the OB. Well, Gabriella's head is so low, she couldn't even get to my cervix to see how dilated I am. I already knew how low her head is- I can feel it when I walk!! Anyway, she spoke with the OB and finally we have a date! Next Tuesday, March 22nd at 9:30am I will be induced. But they still think I may go on my own before then. As much as we want to meet this little spitfire in my belly, it would be easier if the whole thing is planned. But, if I do go sooner, I guess we will figure everything out.

We have been here almost a week and we are very homesick already. We know we have to be here to be close to the hospital and we are lucky to have The Devon Nicole House to stay at, but it's tough because it's not home. It's also difficult because we don't know how long Gabriella will need to stay in the hospital and how long we will need to be here. It definitely keeps us going knowing how supportive all of our friends and family have been. We are even getting some visitors tonight. Rob's parents and sister and brother-in-law are coming, so it'll be nice to see some familiar faces.

We want to thank everyone for all of their thoughts and prayers and hard work with the fundraiser. We also want to thank everyone who has donated to the fundraiser. We have heard that friends of friends and people's coworkers have been donating and we can't even begin to thank all of you for that. Please know how much we appreciate everything everyone is doing for our family. Most of all, please, please, please keep praying that Gabriella makes it through this.

We love and miss you all-
Krista, Rob and Alyssa




March 16, 2005
Not a whole lot to update today except that I received a voice mail from one of the nurses at Brigham who wanted to let us know they changed our induction. It's still scheduled for March 22nd, but they want it at 6:00am instead of the 9:30am slot we had. That's going to be a bit challenging with Alyssa here with us, but they want to start as early as possible in case of any complications. Hopefully, there won't be any, but they figure the earlier they begin, the better.

Alyssa and Mommy did some exploring around Boston today. We took our car and didn't even get lost! It was nice to get out but poor Alyssa is still fighting this cold. She seemed ok while we were out, but then she went downhill as the night wore on. If she isn't any better tomorrow, we may take her to Children's to make sure it isn't anything worse than a cold. She's not usually sick, so this is a doozy for her.

Every night I go to bed I think it will be the night I go into labor. Gabriella is so low and I swear she gets lower everyday. I keep joking that I have done so much walking since we have been in Boston that the poor thing is going to fall right out. But she seems happy to stay where she is for the time being. I think she knows she is going to be sick, so she has decided to stay put as long as she can. :)




March 17, 2005
Happy St. Patrick's Day! We ended up taking Alyssa to the emergency room at Children's today because we were very concerned about the cough she developed. Thankfully, it's an Upper Respiratory Infection and nothing more. We were worried about possible bronchitis or pneumonia. The doc said her ears are a little red, but no ear infection, which is good because she is 2 and has never had one. He also said he can hear the congestion in her lungs, but at this point what she has is viral and will have to just run its course. He told us to keep an eye on her and watch for any changes in the cough. It she has any respiratory distress or spikes a high fever, they want us to bring her back.

They were wonderful there. We were seen right away, the doctors were very gentle and even gave our little patient a popcicle, which despite her loss of appetite, she gobbled right up. There was a tv in her room and she watched Dora while we waited. She thought her little hospital gown with the elephants and clowns on it was so cool and she didn't even put up a fuss when the doctor examined her. I hope our experience next week when we have Gabriella goes just as well. I am sure it will as everyone at Children's is wonderful. They truly are a special group of people.

Tomorrow is Friday so we are almost there. Tuesday will be here before we know it and we will finally get to meet Gabriella. We were joking saying we were going to see if we could request the bed in the NICU next to our friend's daughter so Gabriella can take her cues from her on getting better, as she is doing as well as can be expected.

I was talking with my aunt today about the striking similarities between our situtation and our friends who are also here. Not only do I know her from high school, but her husband umpired Rob's softball games, their baby has the same condition as Gabriella, they are staying at The Devon Nicole House at the same time, they have a 3 year old and they even live right around the corner from where we just moved to. She even left her job recently to be a stay-at-home mom like me. My aunt told me she believes my dad (who passed away 13 years ago) has a hand in this. I have to believe it because it's just so amazing. The way I look at it is he can't physically be here with his grandchildren, so he is giving us some help in another way. Thanks Dad! I love you and miss you so much.

Good night.




March 18, 2005
Today I had to call the Maternal Fetal Medicine department at Brigham & Women's. I was a little concerned because Gabriella wasn't moving as much as she normally does. I began noticing it last night but I thought maybe she was just having a quiet night. I got up this morning and had some orange juice and breakfast, which usually does the trick to get babies moving and she was still really quiet. I could feel her moving, but it was very subtle and not like her at all. When I spoke with the nurse, she booked me right away for a non-stress test at 1:00pm.

Well, being the little fighter that she is, Gabriella showed wonderful activity and accelerations on the monitors. It could have just been the further along I get and the bigger I get, the less room there is for her to move around. But, it was reassuring to know her vitals are good and that should get us through the weekend and then before we know it, Tuesday will be here.

Alyssa still isn't feeling very well. We had to call the ER again today because she vomited twice and had a fever of 100.5. The doctor said it was good to call and that we are doing everything we can for her. He said a lot of times when little kids have such a bad cough, they will often vomit. He said to give her some Tylenol for the fever and to watch her closely. If she starts vomiting excessively or we can't get the fever down with Tylenol, or the cough gets worse, then we should bring her back. She feel alseep around 8:15pm, so I am hoping she will be able to get a good night's sleep and will feel better in the morning.

Rob went home tonight for a few days to check on the cat and the house. I think he was getting a little stir crazy just sitting here waiting, so I told him he should go home. He's only an hour and a half away if I happen to go into labor before Tuesday. Alyssa stayed here with me and if she is feeling better, I am going to take her to a free story and craft hour I found at a local bookstore. I think she will enjoy that. One of her little friends that she made here got to go home today. We were very happy for her and her family, but Alyssa was looking for her to play with tonight. Alyssa's other friend (the son of the couple we know) went home for a few days to be with his grandma, but he will be back tomorrow, so Alyssa will at least have one of her playmates back.

Thank you to everyone who has been calling and emailing and sending gifts. Your support means the world to us and it always gives us a well needed boost to hear your voices.

Here's hoping it's a quiet and uneventful weekend. Shall we call it the calm before the storm? :)

Good night.




March 21, 2005
Well, let's just say it the weekend wasn't quiet and it certainly wasn't unevenful. Rob left here Fridat evening around 7:30pm to go home for a few days and check on the cat and the house. He got home somewhere close to 9:30pm and had gone to sleep around midnight. He thought he would get a good night sleep in our king sized bed with the cat all curled up at his feet. He did- for about one hour.

Alyssa was here in Boston with me. She went to sleep around 8:15pm and I enjoyed some quiet time to myself before going to sleep around 10:30pm. I was exhausted and hoping Alyssa would sleep all night and I would as well. I was out like a light and awoke suddenly- my water broke! I looked at the clock and it was 1:05am. The first thing I did was jump out of bed (well, I did the closest thing a woman who is 9 months pregnant can do to jumping) and go change my clothes. I told myself to remain calm and looked up to the ceiling as if to say to God, "You're kidding me, right?" He wasn't kidding and I was in Boston with my two year old in labor and my husband was home fast asleep in Connecticut. So, I calmly packed my bag and then called Rob. Now, since his pregnant wife was in Boston, you would think he might sleep with the phone by his ear, just in case. I tried to call him three times before giving up realizing there was no way he was going to hear the phone.

Calmly, (yes, believe it or not, I was still calm) I then called Rob's parents at 1:30am. They then drove to our house and let themselves in with their key and had to wake Rob up. Then they all hightailed it to Boston.

At this point, I have my bag packed and am making phone calls. The light was on, but amazingly enough, Alyssa didn't wake up. I then called Kristen and Kyle in their room. They are the friends we know whose daughter also has CDH and are staying here at The Devon Nicole House. Kristen had offered to watch Alyssa if I went into labor early. Kristen came to the hospital with me and Kyle stayed in the room with Alyssa. Kristen was awesome and I don't know what I would have done without her. She came in the shuttle with me to the hospital and even stayed and held my hands through my epidural. Rob and his parents made it to Boston in an hour and fifteen minutes. Alyssa never woke up, never even knew Kyle was in thr room and when she did wake up in the morning, Grandma and Grandpa were there.

When the doctors checked me, I was 4-5 cm and 90% effaced. My contractions started immediately after my water broke, so I knew this was going to be a quick labor. I got my epidural and the doctor said he would check me again in a few hours. At ten minutes to seven, he said he was going to grab a nurse and check to see how dilated I was. While we were waiting for him to come back, i said to Rob that I felt funny and I think I needed to push. I called the nurse and the doctor came right in. I was fully dilated plus two and they were getting everyone ready in the operating room. There were so many people who needed to be present in the room that I wasn't able to stay in the delivery room. Then the doctor told me something that made me laugh. He said not to push. I was fully dilated plus two and her head felt like it was going to fall right out and they were telling me not to push. We got in the OR and I pushed for all of 5 minutes- two pushes and Gabriella made her grand entrance. She was 6 pounds, 4 ounces and 19 inches long. She has a head of dark hair and is just absolutely beautiful.

They cut the cord and whisked her to the corner of the room. We heard her cry once and then it was silent. It was pure torture knowing they were working on her, but not knowing what was going on. After what seemed like hours, the surgeon who was watching the neonatal team work on her, gave is the thumbs up. Apparently she had a very rough start. She was blue and they even had to give her some chest compressions. But once they put in the breathing tube, she came around. They called Rob over to take a few quick pictures then they swaddled her up tight and let me hold her for a few seconds. I was so grateful for those few seconds, but then they took her away. They told Rob to go with them. He followed them to the NICU while they stabilized her for transport and then to Children's. I was sent back to the delivery room to wait to be moved to a postpartum room. I waited anxiously for Rob to come back and give me a report.

It seemed like hours before he came back, but when he did he said she was stable. The doctor said the first 6-12 hours were the most critical to see whether or not she would need the ECMO (which is basically a heart and lung bypass machine). Rob was feeling a little lightheaded and nauseous and he said it was because it was really difficult to watch the doctors trying to stabilize his daughter and save her life.

I was finally able to see Gabriella at 3:30pm- 7 and a half hours after she was born. When I got there they told me she was doing really well and that so far, she hadn't needed the ECMO. She was breathing with the help of a ventillator, but was initiating the breaths on her own. Over the course of the day, they were able to lower her vent settings and decrease the amount of oxygen she needed. She started out at 100% oxygen and eventually made it down to 35%! Basically she is initiating those breaths on her own and getting the 35% oxygen to help her breathe. They said her color is excellent and that she is a little fighter.

Today is Monday and she is still doing very well. On Sunday we were able to talk with the surgeon who said she is doing better than they expected. When I was pregnant, they anticipated that she would be one of the sicker babies and that her CDH was moderately severe. She is scheduled to have her surgery tomorrow at 12:30pm to repair the diaphragmatic hernia and take the stomach organs out of her chest and back down into her stomach. Once they take those organs off of her lungs, then her lungs should be able to start growing. There are still complications that can arise from the surgery and once she comes out of it, she will need to be weaned slowly off the oxygen again. If they can get her vents back down to 35%, the next step would be to get her off the ventillator and breathing on her own. They will also then began feeding her breast milk through a feeding tube.

We are certainly not out of the woods by any means, but the doctor told us he is very optimistic. We can't ask for any better than that right now.

We have taken a ton of pictures and I hope to be able to send those on soon and even post some to this website. I ask that you all continue to pray as Gabriella now needs to get through the surgery and the recovery. I truly believe that she is doing as well as she is because she is a fighter, because Mommy and Daddy kept such a positive attitude, because of all of the prayers from all of you, and also because my father is watching over her and protecting her. She knows she has so many people pulling for her and she is anxious to meet them all!

One last thing that I would like to share. The nurse told me today that if we get through the surgery with no complications and little Gabriella behaves herself, we may get to hold her on Saturday. It has been so hard not to be able to hold her, but I now have Saturday to look forward to.

Alyssa went home with Grandma and Grandpa for a few days so we can adjust to all of this and get through the surgery. We miss her terribly already, but she will be coming back up to see us midweek. She got to see her little sister and kept pointing and smiling. We asked her if she was going to share her toys with her baby sister and she said yes. Daddy said, "Yeah, right!" :)

I will definitely let you all know how the surgery goes tomorrow. Wish us luck and keep praying.

Love,
Krista, Rob, Alyssa and Gabriella




March 22, 2005
Gabriella had her surgery today at 12:30pm. We got to the hospital around 11:45am to talk with the doctor before she went in. They had her pretty sedated because she kept waking up when her sedation got low and the nurse said she was getting angry and moving her head and arms around. They didn't want her to be agitated for surgery, so they kept her pretty medicated. But, we gave her lots of kisses and talked to her and gave her explicit instructions to behave herself in the OR. Sister Carlotta from Children's came in just before they wheeled her to the OR and blessed her. Mommy and Daddy were pretty emotional at that point.

We got hourly updates that she was stable and things were progressing well with her surgery. At 4:30pm, the surgeon told us that the surgery had gone very well and she was stable through the entire thing. He said she had a pretty significant hole when they went in to repair it. Some babies with CDH don't have any diaphragm at all, but Gabriella did have some. Because the hole was so large, they used a piece of Gortex and sewed it to the existing portion of her diaphragm to create a whole diaphragm. He said that although her defect was large, and her lungs are small, her lungs look good. He also said that tonight could be dicey since she just had major surgery, but that he is optimistic because she has been so stable.

We finally got to see her again around 6:00pm. Her face was a little puffy from the anesthesia, but not too bad. She had an epidural and some other sedation so she was pretty out of it, but I believe she knew we were there. They are going to see how the night goes and they want to try to take her off the ventilator in the next few days so she would be breathing on her own. They also didn't even put in a feeding tube during the surgery because the doctor is optimistic she will be eating from a bottle in a few days! They would give her my breast milk through the bottle. Hopefully we will be able to hold her and feed her very soon.

The doctor said she is a strong little girl. We are very, very proud of our little Gabby girl and how hard she is fighting to get better and see her Mommy and Daddy and big sister Alyssa. I think she has been able to feel our positive energy and thoughts and has used that to get herself this far.

We will know more tomorrow after we see how the night goes and will certainly update everyone. We truly appreciate all of the prayers, thoughts, flowers, gifts and love everyone has been sending us. Your support means more to us than you know.

Good night.




March 23, 2005
Good morning. I called to check on Gabriella at 5:30am this morning to see how her night went. The doctor had said the first night after surgery is almost the most critical, so I wanted to make sure she was ok. The nurse said she had a good night and is even starting to wake up a little as the anesthesia starts to wear off. She said Gabriella was moving her head and her hands and feet around. She said her feet are pretty dry, but that she didn't put any lotion on them because she thought Mom and Dad would really enjoy doing that. We will head over there sometime this morning and hope for an update as to what the plans are for taking out her ventilator.

Alyssa has been home with Grandma & Grandpa since Sunday afternoon and having a grand old time. They bought her a little tea set and some plastic food and she has been throwing tea parties for them. Rob will go back to CT tomorrow and check on the house and give the cat (Chloe) some well needed attention and then pick up Alyssa and bring her back. Even though we needed this time to adjust, we miss her like crazy.

Love,
Krista, Rob, Alyssa & Gabriella






March 23, 2005
We just got back from the hospital where Gabriella has had a nice quiet day. They will probably see how things go for a few days and keep her stable before they try to remove the ventilator. We noticed that each day it gets harder and harder to leave her. Today before we left I was stroking her hair and giving her kisses and rubbing her feet and she kept moving and responding to each touch. She even opened her eyes again for us for a short while. It's so difficult not to be able to hold her, but hopefully we will be able to do that sometime very soon. Daddy is going to go back later tonight and say goodnight. We'll update more tomorrow.
Love,
Krista, Rob, Alyssa & Gabriella






March 24, 2005
Daddy went back last night to check on Gabby and she was still nice and quiet. Nothing new to report, but nice and quiet is good. I called her nurse around 5:30am this morning and again was told she was still very stable and was even having moments in which she was moving around and opening her eyes. She said they were going to try her on her belly for a while to see how she tolerates it and then they may start trying to wean her off the ventilator today. We'll go over in a few hours to be with her. Thankfully we didn't get the snow here they expected. They said 4-8 inches and there's nothing out there, which makes our daily walk to Children's much nicer. We'll update when we get back later this evening. Keep praying for her that she tolerates being weaned off her ventilator.
Love,
Us






March 25, 2005
Good morning. Gabriella is still stable, although she was pretty agitated yesterday and last night. She has a condition called PDA, which is very common in babies with diaphragmatic hernias and it usually goes away on its own eventually. To better explain what it is, I found this online:

"What is patent ductus arteriosus (PDA)?
Patent ductus arteriosus (PDA) is a condition in which the connecting blood vessel between the pulmonary artery and the aorta in fetal circulation, called the ductus arteriosus, stays open in a newborn baby.
Because the placenta does the work of exchanging oxygen (O2) and carbon dioxide (CO2) through the mother's circulation, the fetal lungs are not used for breathing. Instead of blood flowing to the lungs to pick up oxygen and then flowing to the rest of the body, the fetal circulation shunts (bypasses) most of the blood away from the lungs. In the fetus, blood is shunted from the pulmonary artery to the aorta through the ductus arteriosus. However, with the first breaths of air the baby takes at birth, the fetal circulation changes. A larger amount of blood is sent to the lungs to pick up oxygen. Because the ductus arteriosus is no longer needed, it normally begins to wither and close off."

Gabriella was shunting quite a bit yesterday and last night. She is still only on 40% oxygen and is on a pressure support of 22. She needs to get to down to an oxygen level of 35% and a pressure support of 10 before they can extubate her. They had lowered her pressure support to 21 yesterday, but because of the agitation and the shunting, they upped it back to 22 during the night last night. The surgeons wanted her on her belly for a while, but the nurse told me this morning that Gabriella wasn't too happy to be on her belly and kept grimacing and seemed uncomfortable. They added another pain medication and put her on her back and she seemed much happier.

They have assured us that this is all normal and to be expected. They typically have to lower and raise pain meds as needed as well as lower and possibly raise the pressure support as needed. The nurse said it's normal to take two steps forward, only to have to take one step back. And then the next day, you may take 5 steps forward. It's all just one day at a time.

When we got there yesterday to see Gabby, we were delighted to see the nurse had put a pretty little red bow in her hair. She looks so adorable! Auntie Rachael calls her a little nugget and that's just what she is.

Daddy went home yesterday late afternoon to get Alyssa. They had dinner at Grandma & Grandpa's and then they went home to our house to sleep in their own beds and enjoy being home for a night. Rob said as soon as Alyssa got home, she went right for the playroom and had every toy out in a few minutes. They are going to have breakfast and then head back to Boston.

They are planning Easter activities for the kids here at the house and each child is getting an Easter basket that has been donated. They will be placed outside of our doors no later than 7:00am so we can tell the kids that the Easter Bunny can find them, even if they aren't at home. They are also having an Easter egg hunt, egg coloring and they will be making bunny ears and Easter chicks. They are also having an Easter dinner donated. I can't tell you enough how wonderful it is here at The Devon Nicole House. We are so lucky to have gotten in here during this most difficult time.

Love,
K, R, A, & G






March 25, 2005
Gabriella has been having a tough day again as far as being agitated. The doctor said she still has her epidural in from the surgery, so that should be taking care of any pain she might feel at the incision. They think that it's the tube down her throat that's bugging her so much and they upped her pain meds again. The nurses keep telling us how feisty Gabby is and that's a good sign because she's a fighter. You can tell when she's agitated because she makes these faces and she's actually crying, but no sound comes out because of the ventilator. It breaks Mommy's heart to watch her crying and not be able to fix it for her. She also starts moving and wiggling a lot so they had to pin her arms down to the bed because they don't want her knocking any of her tubes out.

However, despite all of her feistiness and agitation, she still looks good and the doctors are very pleased with her progress thus far. They inserted a feeding tube called an NJ tube today and started her with about 1cc of breast milk. An NJ tube goes into the jejunum (the second part of the small bowel) instead of the stomach. This is supposed to reduce vomiting associated with reflux (which Gabby has) and can help decrease aspiration. It's time for her to start getting some real food, rather than the sugar water and fats she has been getting. So, it's a big step that she starts eating.

Alyssa came back with Daddy today. It was a little challenging with her at the hospital all day, but all in all, she was very good. The nurse wheeled in a TV with a VCR and some videos along with a nice comfy recliner for her to sit in. We bought Gabby the new Fisher Price Flutter Bye, which is similar to the Ocean Wonders Aquarium Alyssa has at home, but with birds and a cool feature that plays little movies on the wall. I think Gabby might be out of luck because that's all Alyssa wanted to play with.

We had to leave the hospital earlier than we wanted to today because Mommy is now sick. Figures I would come down with something right after giving birth. We left because I feel pretty lousy and run down, but more importantly, it would be very dangerous for Gabriella if she gets sick. So when I do go back, I need to wear a mask when I am in her room. What a time to get sick!

We're hanging in there as best we can. Having so much support from our friends and family is helping us so much. Thank you all for being so wonderful.

Rob will go back and check on Gabby later when Alyssa and I go to sleep, so hopefully she will be much more calm by then.

Love,
Us




March 26, 2005
Last night they did a chest x-ray on Gabriella apparently to check for extra fluid, which she did have. They increased her medication (Lasix) which seemed to help because then she started peeing like a champ again. She also seems to be tolerating the breast milk through the feeding tube. Other than that, she was pretty quiet during the night.

I spoke with one of the doctors today who said they are very pleased with Gabby's progress thus far. They went back down on her pressure support to 21 and her blood gasses were the best they have been, so they may try again tonight to lower her pressure support to 20. She needs to get down to 10 before they can consider extubation, so the nurse said it will probably be another week or so before they can even think about it. But she remains stable and that's a good sign.

Today was an exciting day for Mommy and Gabby. I got to hold her for the first time! She was on a pillow and it was a big ordeal just to get her in my arms. It took three people to rearrange all of her equipment and tubes and Gabby didn't like it one bit. She kept crying but no sound comes out so it's so hard to watch. I had to wear double face masks because I have a cold, but it was all well worth it. Once she got settled and snuggled up in my arms, I rocked her in the rocking chair for about 15 minutes and she looked so peaceful. I didn't want to give her back. I just wanted to sit there with her all night. It's an amazing feeling when you get to hold your baby, but when it's been a whole week, it's even more amazing.

Good night my sweet baby girl. Mommy loves you.






March 27, 2005
Rob went back to the hospital last night around 9:30pm. When he still wasn't back by 12:30am, I called him to make sure everything was ok. He said that Gabby had a slight fever and they were going to take some cultures to make sure there wasn't any infection or anything going on. Also, one of her IV's came out so they were trying to get in back in. Gabby was still very agitated, which has been going on for the past three or four days.

I called to check on her at 5:30am and when I asked her nurse how she was doing, she told me Gabby was being bad. She said it in a joking manner, but basically Gabby is shunting quite a bit and they had to up her pain meds again.

I went to the hospital early this morning around 8:30am because I was concerned. When I got there, they told me she was still shunting and they were concerned maybe the PDA had gotten worse, even though it had previously gotten better. They were going to do an echocardiogram to check. I had stepped away from her bedspace for a bit and when I came back, the nurse told me they did another chest x-ray. Apparently, her ventilator tube was down too far and caused her left lung to collapse. They think that might be what's causing the shunting. They said they are going to hold off on the echocardiogram for now. They reinserted the tube and said they would do another chest x-ray in a few hours. Before I left to come back to the house, they decided to do the chest x-ray sooner because the shunting wasn't slowing down. The hope is that by reinserting the tube in the correct place, she will stop shunting and it will allow her lung to reinflate. They were doing the x-ray when I left, so I will find out more when we go back. Her pressure support is still at 21, but they did go back up to 100% oxygen until they can figure out what's causing her to shunt so much. Her temperature did go back down to normal by the time I arrived.

We are waiting for Rachael and Auntie Pat and Uncle Joe to arrive so once they get here, we will all go back to visit. Hopefully the shunting will have slowed down.

The nurse said she is starting to act like a CDH baby, meaning it's always a roller coaster ride with them. I knew it was too quiet for the past week.

I will update later tonight on the chest x-ray and how the rest of her day went.

Happy Easter,
Krista, Rob, Alyssa & Gabby






March 27, 2005
Gabby had a really bad day today. First, they found a significant amount of fluid around her left lung (which is the smaller lung to begin with). They had to insert a chest tube to drain some of the fluid. She was still very agitated and doing a lot of shunting. They found out she has pulmonary hypertension (high blood pressure) mostly on the right side of her heart. They had to start her on nitric oxide for that. She also has a fever of 100.9. The first thing I noticed when I saw her today was that her color didn't look as good as it has. She wasn't as pink and her lower extremeties looked especially pale. The doctors think she may have some sort of infection, which is not good. Hopefully the infection is not in her lungs. They think it isn't because it probably would have showed on her chest x-ray, but right now they aren't sure. They took some cultures, but those may take a few days. In the meantime, they started her on two broad spectrum antibiotics and may start a third. These are all definitely setbacks, but we are praying she will bounce back and that if it is an infection, that they caught it in time with the antibiotics. She is still on 100% oxygen and they may even have to up her pressure support by two or three points depending on how she does. The doctor said they aren't seeing the increase in her numbers they were hoping for at this point. The nurses and doctors keep telling us that it's always a roller coaster ride with CDH babies. Right now they have her stable, but the next few days are going to be touchy. No one (not even Mommy & Daddy) is allowed to touch her and we have to whisper in her room because they don't want her stimulated at all because then she gets herself all worked up and her numbers start dropping.

Please keep praying for Gabriella. She's had a very difficult day and a long road ahead of her. Her little body is fighting as hard as it can, but she needs all the love and prayers she can get.

Love,
Us






March 28, 2005
I called to check on Gabby at 1:30am and the nurse said she was stable and tolerating her diaper changes, moving her position, etc. well without getting herself worked up. Her fever had gone down and she seemed pretty comfortable. When I called again at 6:30am, the nurse said she was still tolerating things well, but that she was shunting pretty frequently again. They were giving her some fluids and hoping that would do the trick. Other than that, not much else to report from last night. Hopefully today will be a better day.
Love,
Us






March 28, 2005
I thought I would let those of you know who have been checking this website for updates that the hospital also provided us with what's called a care page. The updates will be the same, but there are more pictures and you can post messages. Just another option. If you would like to check it out, just go to www.carepages.com and the care page name is GabriellaHope.




March 29, 2005
Unfortunately, today wasn't a better day. Actually, Gabby was doing worse as far as the shunting and her numbers. They just aren't seeing the numbers they were hoping for. The biggest issue is her pulmonary hypertension. Basically, the right side of her heart is working very hard and it is getting tired. The surgeon told us that he is flabbergasted by the fact that she has taken such a turn for the worse. Usually if kids are going to act like this, they see it in the first few days following birth. There is a very good possibility that Gabby will need to go on ECMO either tonight or tomorrow. We are praying she won't need it, but her little heart can't take much more. The surgeon said that he has only ever seen one other CDH baby need to go on ECMO this late in the game. Usually it happens in the first few days and before the repair takes place. Even more frustrating, they don't know why all of a sudden the pulmonary hypertension is acting up. She has always had it, but it really didn't start affecting her until now. If she needs to go on ECMO, their hope is that she will only need it for three days or so and then they can take her off. But, like everything else, it's all a guessing game and depends on her. ECMO is a temporary heart and lung bypass machine that does the work for her so she won't have to work so hard. The one positive thing (if you can even call it that) is that the surgeon said that because this is happening now at day 9 rather than day 1, they know what Gabby's baseline is, meaning that even though her lungs are small, they are working well (as well as they can be) because she was so stable for a whole week and she was on such low levels of oxygen. If she has to go on ECMO, we were told it will be like day 1 all over again because even though it is a lifesaving measure, it will set us back to day 1 where they will then need to start trying to wean her back down off the oxygen. We asked if we might lose her tonight and the surgeon said we aren't there yet and hopefully won't be. But, the next 12 hours are very critical and they are saying she is very fragile. We had a very difficult day. It's really the first time since she was born that we are afraid she may not make it. We are by no means being pessimistic. We love her too much already and are not going to believe that she would be taken away from us. But, we are pretty scared right now. A little while before I left tonight, the doctor told me he was marginally impressed with her numbers. Normally, marginally impressed wouldn't mean much to us, but at this point we'll take it. Basically she is teetering on the edge of whether or not she will need ECMO. They won't wait too long to decide because they don't want to push her heart too far because it could give out if it gets too tired. But at the same time, if her numbers rise enough, she may be able to avoid the ECMO. We just don't know. They keep checking her blood gasses and they need those numbers to go up, even just a little. The past three tests have been about the same. The numbers are borderline and they are looking for a increase to keep her off the ECMO.

An amazing thing happened as I was getting ready to leave. Gabby was wide awake and very alert, despite all the drugs she is on. She had both eyes wide open and was following my voice and looking right at me. I was holding her hand and she kept squeezing my finger. I have to believe she was trying to tell me, "Don't worry Mommy, I'm going to make it." It was the first time I was really able to see what her eyes looked like and she is even more beautiful. Kristin said with her eyes open, she looks exactly like Alyssa. I completely agree.

Again, I ask for all of your prayers. Gabriella truly needs many prayers and lots of love. She is doing the hard part by fighting so hard to survive, but maybe the prayers are the added boost she needs to get through.

All our love,
Krista, Rob, Alyssa & Gabriella






March 29, 2005
As soon as I posted the last message, our phone rang. It was the doctor letting us know that Gabby just wasn't tolerating them trying to turn down her oxygen levels and they have decided to go ahead and put her on the ECMO. They are actually prepping the machine right now. The doctor said that it should give her the rest she needs and hopefully they can start trying to wean her off in about three days, but they really don't know for sure how long she will need to be on it. The biggest risk of ECMO is it can cause bleeding in the brain, but they are giving her a blood thinner to try to help avoid that. They will do regular head ultrasounds to make sure that isn't happening. I guess it isn't common that it happens, but it can happen. Apparently, Gabby will get very swollen from the ECMO, so she will look very different for a while, which will be hard for us because we have already seen her the way she looks now. The are going to insert canulas in her neck and then drain her blood and it will run through the heart and lung bypass machine and then back into her body. It basically works the heart and lungs for her so she doesn't have to work so hard. Obviously we were hoping she wouldn't need to go on it, but hopefully it will give her the rest she needs to start getting better.

It's going to be a very difficult couple of days. Please, please, please pray for little Gabby, she really needs it.

Love,
Us






March 29, 2005
Gabby is officially on ECMO, but is stable and her numbers look very good. They are hopeful that this is the rest her little heart needs and that they can try to wean her off of it in three days or so. But, if she needs it, they can leave her on it as long as 21 days. We are praying that she bounces back quickly and can come off soon. If any of you have done any reading about ECMO, it's sounds pretty scary and it is. But, it wasn't as bad when I saw it for the first time. The equipment for it practically takes up her whole room but doesn't seem too bad and the blood running through the tubes actually just looks like red tubing, so it wasn't as bad as I thought. She is starting to swell a little and they have said it will get a lot worse over the next few days. She looks so peaceful and perfect, despite all of her tubes and wires. We feel a little better than we did yesterday, although she is by no means out of the woods. It's just comforting to know that for now, her numbers look good and she is getting the rest she needs.

We thank all of you for your prayers and messages and emails. It's nice after a long day at the hospital to go back to the house and see someone has posted such a caring message on the message board or sent us a loving email. We're hanging in the there as best as we can. People can still visit her, so please don't think that you can't. The only thing we ask is that if you are sick at all or have been sick recently or have been around someone who is sick, that you hold off on your visit until you know you are better. Gabby is extremely fragile right now and any little virus could be life threatening for her.

Alyssa went home with Grandma and Grandpa again for a few days. Mommy and Daddy hated to see her go, but we need a few days to adjust to this latest development with Gabriella.

On another exciting note, our friend's daughter Paige was taken off her ventilator today! She looks so beautiful without all of those tubes, even though she still has a few. We even heard her let out a little hoarse cry and it was the most beautiful sound I ever heard. Kristin even got to hold her for real today without a pillow. It's been a long bumpy almost 6 weeks, but well worth it. We are so excited for them. They are not completely out of the woods yet either, but it is a huge wonderful step for the whole family.

The docs have told us Gabby will most likely be quiet and resting for the next three days, so hopefully we won't have anymore excitement. But as we have been told, CDH babies are very unpredictable and that's one of the things that is most frustrating for both the parents and the doctors.

Lots of love,
Us






March 30, 2005
I called to check on Gabby this morning and she is still stable on ECMO. She had an episode last night in which her blood pressure went up and her blood gasses weren't so great, but they made some adjustments to the ECMO settings and now she seems fine. They also did a head ultrasound to make sure there wasn't any bleeding and that was fine as well. The nurse said she keeps waking up and looking all around and moving her arms and legs, which amazes me because she is so sedated. Again they keep saying how feisty she is. We are looking at that as a good sign because it means she's a fighter. Years from now we will probably be out of our minds with that feistiness, but for now we'll take it. :)

We're heading over there in a about an hour, so we will update later.

Love,




March 30, 2005
We just got back from visitng Gabby. We were there for about 9 hours and she was stable the whole time. She has these periods where she wakes up and is very alert, even being on ECMO and all those drugs. She looks right at Mommy & Daddy and she squeezes my finger as if to tell me how happy she is that we are there. At one point we had to whisper because the nurse said Gabby knew we were there and whenever she heard our voices she started waking up and looking for us. Overstimulation gets her a little worked up, so then they medicate her again. She starts moving her little hands and feet all over the place. At one point today she got one of her tubes in her hand today and was pulling on it. She's a tough little cookie. All of her numbers and blood gasses looked good today so we are still hoping maybe they can try to do what they call cycling and wean her off the ECMO in a few days.

She has been getting transfusions and some blood products and today Daddy donated blood for her. We won't know until tomorrow if he is compatible because they need to check his blood type, but if he is, then Gabby will get Daddy's blood. If he isn't compatible, the blood will be donated anyway so some other child can benefit from it. I can't be a donor because I just gave birth and they don't let you donate then and also, Gabby and I aren't compatible. Other family members and friends can donate when they come to visit as well, but we are hoping she won't need it by the time we get more visitors.

There's no real other update. It's just a lot of waiting and praying right now, but quiet and stable is good.

Love,
Us






March 31, 2005
I called to check on Gabriella this morning and she is still doing well on ECMO. We're anxious to get to the hospital today to see if they might start cycling her today to see how she tolerates trying to come off ECMO. Her nurse told me that she keeps waking up and they keep medicating her and she looks up at them as if to say "Is that all you've got?" She's building up a tolerance for the medication and she's very strong and wants to be awake. She's afraid she's going to miss something. I think little miss Gabby is going to be a lot like her Mom.

We'll update later. Keep your fingers crossed that they cycle her and she does well.

Love,
Us






March 31, 2005
Well, Gabriella is holding her own and doing well on ECMO. All of her numbers are very positive and her last blood gas was excellent. As long as the night goes well, they are going to cycle her in the morning. What they do is they clamp off the ECMO circuit (she's still hooked up to all of the other support) and they check her blood gasses at 100% oxygen, then 80%, then 60%, then 30%. If at any of those percentages, her number aren't good, then they will stop. But, if they can get her to 30% and her blood gasses are good, then they can take her off the ECMO. At this point though, her blood gas numbers have to be excellent. They won't take her off if the numbers are average. Sometimes when babies have been on ECMO for a long period of time, they will accept average numbers. But with Gabby, she has only been on it since Monday, so if for some reason her numbers aren't excellent, they can afford to leave her on and try to cycle her again the next day. She is retaining some extra fluid and does look much more swollen than she did even this morning. But the surgeon said she still isn't nearly as puffy as most babies are and that's another good sign that she is strong. All of the doctors are pretty optimistic that she will do very well when they cycle her. We are a little nervous because they also were optimistic that she had been doing better than expected and then she took a turn for the worse. Hopefully we are past all that and we can get her off ECMO so she can begin the process of trying to be weaned off her ventilator. They had previously stopped her breast milk through the feeding tube when she went on ECMO, but were able to start her feeds again and she is tolerating them very well. She was very active today, which they don't want because she really needs to remain as calm as possible while on ECMO. She knew Rob and I were there in her room and she kept trying to look over at us and moving all around. The only thing that calmed her down was when I held her hand and rubbed her head. As soon as I would stop, she would wake up again. They had to keep medicating her and when we finally left for the night, she was pretty well sedated. Everyone keeps commenting on how strong and feisty she is. I think Gabby is definitely going to be like her Mommy.

I ask again that you say a prayer for Gabriella before you go to bed tonight. Tomorrow is a big day and hopefully we will be able to say that they were successful in getting her off ECMO.

Love,
Krista, Rob, Alyssa & Gabriella






April 01, 2005
They just got done cycling Gabriella and she did very well. They were able to cycle her down to 30% and all of her numbers and blood gasses were very good. They did an echocardiogram to check the pulmonary hypertension and PDA. The PDA is much smaller than it was, which is a good sign and the right ventricles of the heart are definitely not as enlarged and the hypertension is getting better as well. The doctors say she is definitely headed in the right direction.

During all of this and exciting thing happened. Dr. Bartlett from Michigan, who pioneered the use of ECMO, was here at Children's. Our surgeon, Dr. Jay Wilson was giving Dr. Bartlett, along with about 20 other interns, med students, etc. a tour of the surgical ICU where Gabby is. Dr. Wilson introduced us to Dr. Bartlett and briefly explained Gabby's situation. The decision was made by Dr. Bartlett himself (along with Dr. Wilson, of course) to leave Gabby on ECMO for a few more days. The rationale is that she is doing very well and a few more days of rest should only make her situation even better when she does come off. We already know her lungs will tolerate it well, so it just makes sense to allow her heart a few more days of rest. Hey, if the man who invented ECMO says leave her on a few more days, who's going to argue with that? :)

Gabriella is fighting very hard to survive and we are so proud of her strength. All of your prayers are certainly helping her and us to get through.

We will update later tonight on how the rest of the day went.

Love to all,
Us






April 02, 2005
They are getting ready to cycle Gabriella again this morning and the nurse said when I called that she may come off today. Here's hoping everything goes well and our baby girl can back to where she was before the ECMO.

Love,
Us




April 02, 2005
Well, we didn't get off ECMO today. Things were going along great. Gabby's numbers looked good, her echocardiogram looked dramatically better than before. They cycled Gabby and she did excellent and they had the ECMO circuit clamped off for almost 6 hours. Then all of a sudden her blood pressure starting dropping. It concerned the doctors enough that they didn't feel comfortable taking her off ECMO. They think she needs more rest. They aren't even going to try to cycle her at all tomorrow. They are just going to let her rest all day. Then, they will go through the whole process again on Monday and hope to get her off then. The doctor told us today that they aren't going to take her off until everything is perfect.

It was a tough day for us all around. They moved Gabby from P5 to P6, which is the cardiac ICU. We were told this is only because off staffing issues as there are 4 patients on ECMO right now and the rest of them are all in the cardiac unit. They need all of the ECMO techs close to each other. It was very stressful for Mommy having them move her. You wouldn't believe what an ordeal it is to move all that equipment. The good thing is her nurses from P5 come with her as well as the same doctors and as soon as she is off ECMO, she will go back to P5. Alyssa came back today and we were very excited to see her, but the transition back and forth is always difficult the first few days.

So, Sunday will be a day of rest for Gabriella and it should be a quiet day. I was thinking we may take Alyssa somewhere tomorrow for a few hours and do something fun. It's tough for her to have to spend so much time in the hospital and if Gabby is going to be resting and on the paralytic drugs, it may be a good day for us to get out for a few hours.

We pray that her pulmonary hypertension gets even better and she can really come off ECMO by Monday.

Lots of love,
Krista, Rob, Alyssa & Gabby






April 03, 2005
Hi. No real update today. Things were pretty quiet. Gabby is still very stable and the plan is to cycle her tomorrow with the hope of removing her from the ECMO. They will do another echocardiogram tomorrow while she is clamped off and if everything looks good and she doesn't have any shunting or issues with her blood pressure, then she should be able to come off. If she is successfully taken off ECMO, then we will be moving back to P5. I just called to check on her and her nurse said she was wide awake and checking out her new surroundings.

On another note, we finally found out that Rob is a compatible donor for Gabby so she began receiving Daddy's blood today.

Julie & Ed visited today and we were glad they got to see how beautiful Gabby is in person. She's pretty darn cute in her pictures, but she's way cuter in person. :)

Alyssa and I took some girlie time together and we went to the playground and did some painting and then played with makeup. Alyssa is quite the little lady and loves to play with Mommy's makeup brushes and put on a little blush and put her apple lip gloss on both of us. Daddy got to spend some time with Gabby, so it was nice for everyone.

We'll let you know how it goes in the morning. Keep your fingers crossed.

Love,
Us






April 04, 2005
Just a quick update because I am still at the hospital, but I know everyone is waiting to hear how it went. Gabby just came off ECMO about an hour ago! The docs said she looks great and her blood gasses and echo look wonderful. They are moving her back to P5 in about 20 mintues so I want to go get her settled and make sure she is stable, but I wanted to at least pass on that she tolerated coming off ECMO very well. Hopefully her hypertension won't flare up again. We are keeping our fingers corssed. The surgeon said that only 1% of kids ever need to go back on ECMO once coming off.

I'll update again later when I get back to the house and make sure she is settled and stable.

Love,
Us






April 05, 2005
I just called and checked on Gabby and her nurse Cathy said she has been wonderful! Her blood pressure has remained stable and they haven't had to put her back on the dopamine. Cathy said Gabby has been awake for the past hour and she was all ready to give her more medication in case she got agitated, but Gabby didn't seem like she needed it. Cathy said she may give her some Lasix because she is retaining some fluid, but it isn't too bad. We're hopeful that Gabriella got the rest she needed and is on the road to recovery. She's still got a long way to go, but this is definitely a step in the right direction.

Also, Gabby's little friend Paige was moved out of P5 and onto 8 West today! This is a big step. She now needs to learn to eat. Babies who have been intubated for so long sometimes develop oral aversions and it's difficult to get them to take a bottle. 8 West is where Gabby will go too once she is extubated and breathing on her own. If Paige is still there when Gabby moves over, we are going to request to share a room. Once the kids are moved there, the moms end up living at the hospital. Kristin will stay there M-Th and then they will reserve Devon Nicole F-Su for when her husband and son come up. You end up sharing a bathroom with whomever is sharing the room with you at the hospital, so Kristin and I figure it'll be so much better if we can share a room there.

It was a really good day all around.

Love,
Us






April 05, 2005
Yippee! Gabby had a really good night. No shunting, blood pressure looks great so far. The Lasix worked in taking off the excess fluid. The nurse gave her a nice bath and she was awake for a while this morning and seemed quite content.

We're excited, but I think the only way to get through this is to remain cautiously optimistic since anything can happen.

Love,
Us






April 05, 2005
Gabby had an awesome day today! It was really a day of rest for her being that it was her first full day off ECMO. The doctors didn't want to agitate her so they didn't make any adjustments to her vent settings and no tests were done today. She is on 41% oxygen and a pressure support of 17, which is about where she was at prior to the whole ECMO thing. Tomorrow they will start trying to wean her down on her vent settings. The next step is extubation, another big step. But they don't want to push her too hard too fast, which is why they gave her a day of rest. Her blood pressure has been excellent and she had periods today in which she was very alert and looking all around at her surroundings. At 5 o'clock she was awake for an hour and a half and Mommy just stayed by her bedside and held her hand and talked to her, which really seemed to make her happy. Everyone keeps commenting on how good she looks and how well she is doing. We joke with them and say how we are cautiously optimistic because they were all so thrilled with how well she was doing before and then she pulled a fast one on us. But they all really think she is doing extremely well.

If any of you would like to come visit, just let us know when. We can't wait for all of you to see how beautiful and strong Gabriella is!

All our love,
Krista, Rob, Alyssa & Gabriella






April 06, 2005
Gabriella had another excellent day today. She was scheduled for an echocardiogram, but they got busy and still hadn't come by the time I left tonight. Daddy is there now and when I called, Gabby was wide awake. The nurse was commenting today on how well she is doing when she has her awake periods. She is very alert and checking everyone and everything out, but she isn't getting agitated, which is good. Her nurse also said she seems like a pretty mellow kid, despite the fact that she is also quite feisty. The doctor was waiting for the results of the echo before lowering any of her vent settings. Her chest x-ray showed that she was hyperinflated, meaning that she was getting more support than she really needed, so they changed the plan and were going to start weaning her tonight. They think she will do very well and may even wean her again tomorrow.

It is getting more and more difficult to leave her, especially when she is alert more often. She looks right at us as if she is wondering what the heck is going on and how come we aren't picking her up. At one point today they had to change the tape on her face that holds in her ventilator tube and I got to see her face for a brief second without all of that tape. Oh my gosh, she was even more beautiful! Wait until you see her gorgeous face without all of the tape! Hopefully it will be off soon. She got a little upset when they were doing that because the tape must have hurt when they were trying to pull it off and she starting crying. It was so heartbreaking because no sound comes out and I wanted so badly to scoop her up and make it all better, but all I could do was talk to her and rub her leg. So, Mommy started crying too.

Tomorrow should be a big day as far as the weaning goes, so hopefully she will be extubated within the next week. They are also going to try shutting off her heater and swaddling her and see if she can hold her temp. If she is able to maintain it for 24 hours, she will get to move into a big girl crib and out of the warming bed. Lots of exciting stuff!

Love,
Us






April 07, 2005
Wow! We had a busy day today. First, Gabby finally had her echo and as far as we know, things looked good. They started weaning her today and if she does well, they will wean her again sometime tonight. She's down to a pressure support of 21 and she is on 40% oxygen. They also weaned her morphine a little. She also got moved to a big girl crib today and out of her warming bed. They have her all swaddled up and she is holding her temp well. Next, they took out her chest tube since she no longer needs it, and she tolerated that very well. Also, Mommy and Daddy got to hold Gabby today-for real! There was no pillow under her this time. It felt so good to get to hold our baby and snuggle her all up. They also put her on her belly for a while today and although she wasn't too sure about it, she was getting great title volumes (bigger breaths)and the nurse was pleased.

In addition to all this excitement, we decided to take Alyssa out for a few hours of fun with Mom and Dad. We took her to Quincy Market & Fanueil Hall. We had a really nice time.

All in all it was a great day, hopefully the first of many.

As long a things continue along this path and Gabby is stable, we are planning on coming to the fundraiser on Saturday. We will drive back to Boston the same night, but we should be ok being away for a few hours. We are really looking forward to seeing everyone and I am sure it will be quite emotional for us.

Lots of love,
Krista, Rob, Alyssa & Gabby






April 08, 2005
Gabriella had yet another good day today. They weaned her pressure support down to 20 at 7:00am and she did very well so they weaned her down to 19 this evening. She had a physical therapist come today and do some chest pt and some range of motion exercises. Mommy got to hold her again today and it felt so good. She finally got to put some clothes on today. Actually, just onesies, but the really cute ones that have snaps down the front so the nurses can get her in and out easily and around all of her tubes. Mommy had gotten her some cute ones at Careter's so they are coming in quite handy. The nurse said the little gowns work well too, so we need to get her some of those. Her nurse put a cute little pink bow in her hair today.

When she is awake, Gabby is very alert and looks right at whomever is talking to her. She has the most beautiful dark eyes. She especially likes the Flutterbye birdies we got her. It plays music and the birdies move all around and she just loves looking at it.

They increased the amount of breast milk she is getting through her feeding tube. Last I knew they had upped it to 8cc per hour, but the nurse said they were going to go up to 10cc an hour.

Things are going along very well. We are hopeful that she will be able to be extubated sometime next week. Keep your fingers crossed.

Love,
Us






April 08, 2005
Just to clarify, on April 5th's update, I said Gabby was on a pressure support of 17. I think that she was on the pressure support of 17 while on ECMO and coming off, but then once she no longer had the ECMO support, her pressure support was raised back up to 22. Since then, they have been able to wean her down to 21, 20 and now 19. I reread the update and realized it probably sounded confusing, so I wanted to make sure it made sense!






April 10, 2005
Saturday was another good day for Gabby. Her pressure support is down to 18. I asked where it needs to be as to when they would start thinking about extubation and I was told around 8. Every baby is different, so they can't say for sure, but she's getting there. We're hoping to be extubated next week sometime. Mommy & Daddy got to hold Gabby again today and Alyssa really likes holding her hand and rubbing her hair. Alyssa thought it was cool for all of us to hold hands together. She thinks her little sister is pretty neat!

We had a wonderful time at the fundraiser. Thank you so much to everyone who worked so hard to put it together and also to everyone who attended and/or donated. We were overwhelmed by the love and support from everyone. It was so nice to see all of you! We love and miss you all so much.

Well, it's 2:00am and we just got back into Boston and checked on Gabby (who was wide awake for our middle of the night visit) and now we are going to collapse into bed.

Love,
Us






April 10, 2005
Hi all. Gabriella is doing wonderful. No real changes other than they weaned her again this morning. Bear with me on this, I am trying to comprehend all of this myself. Apparently they weaned her pressure support to 17 today. There are two numbers (not sure exactly what each one means) that they look at. Her numbers are 17 over 5, which actually means she is at a pressure support of 12. The nurse told me today she was incorrect in telling us Gabby would need to get down to 8. She needs to get down to 10. So, in other words, right now she is at a pressure support of 12 and needs to get to 10 before they can extubate. They are saying they will now do it once every 24 hours so she could be extubated by Tuesday! Can you believe it? This is exciting stuff!!

Also, once they extubate, we will be able to take a more active role in her care- changing her diapers (which I got to do for the first time yesterday!), bathing her, etc. If all continues to go well, we could be moving to 8 West pretty soon. Keep your fingers crossed!

Love,
Us






April 11, 2005
We had another good day today. I held Gabby two separate times today for a total of about 3 1/2 hours. It was so nice to just sit with my baby and rock her in the rocking chair. At one point we were so comfortable that I was even dozing off!

They weaned Gabriella again today to 16 over 5, which is a pressure support of 11. They also weaned her morphine again. The plan now for the week is to wean her again tomorrow morning to 15 over 5, which would get her to the pressure support of 10. Then on Wednesday, the plan is to wean her nitic oxide from 20 ppm to 10 ppm (the nitric is for her pulmonary hypertension). Then on Thursday, they want to turn off the nitric and get an echocardiogram to see how her heart is doing with the nitric turned off. Then, if all goes well, she may be extubated on Friday. Depending on how the echo looks, they may turn her nitric back on. She can still get extubated, but if she still needs the nitric, they can administer it through nasal cannulas. It's going to be an exciting week!

Rob left to go home yesterday and went back to work today. Alyssa is with Grandma and Grandpa during the day and home with Daddy at night and they will come back on the weekends. It's difficult being here alone. I miss them already.

Lots of love,
Krista






April 12, 2005
Today they weaned Gabby's pressure support down to 15 over 5. She seems to be doing very well with that. The plan is still to wean her nitric oxide down to 10 ppm tomorrow and then shut it off on Thursday and get an echocardiogram. If all that goes well, the plan is still to extubate on Friday.

When I was holding her today, she started to gag and then she choked up some yellow-green bile. It was pretty scary. I had to yell for someone to come help me and about 5 people came running over. They suctioned her and said it was normal and not to be alarmed. Her hematocrit (a measure of both the number of red blood cells and the size of red blood cells)was a little on the low side so they gave her some more of Daddy's blood today. When they give her the blood, they shut off the morphine and the versed. Because her meds were off and she started waking up a bit, she could feel the tube in her throat a bit more and started gagging, which in turn made the bile come up. She did it a second time and then they had to put her back in her bed and give her some morphine. Mommy got a little upset watching her choke up that stuff, but apparently she is fine.

Love,
Us






April 13, 2005
Gabby is going along like a trooper! Her pressure support is steady at 15 over 5 and they weaned her nitric oxide down to 10ppm and she seemed to be doing well with that- no shunting or anything. They also weaned her off of her Morphine today so she is just on the Versed. Probably over the next few days they will wean her off of her Versed and switch her to Ativan. Tomorrow they are still planning to shut of the nitric oxide and get the echocardiogram, so hopefully that will look good.

She was gagging a lot today and had another episode where she choked up the yellow-green bile. The nurse said because Gabby is now off her Morphine, she is awake more often and probably feeling the tube in her throat, causing her to gag. Sometimes when they choke up the bile it means they are having withdrawal, but her nurse said there are also other things they watch for like fever, excessive stools, jitteriness; which Gabby isn't exhibiting. They also gave me a little purple pacifier to start trying to get her ready for feeding. I put in in her mouth and she just kind of sticks her tongue out and pushes it out of her mouth.

On another note, The Hartford Courant got wind of our interesting story with Kyle and Kristin and the reporter is going to come to Boston to do a story on all of us and the amazing similarities in our situation. We should be over on 8 West by then, which will be good because the reporter wants a picture of all of us (including the babies) together. Isn't that exciting?

Love,
Us






April 14, 2005
Well, plans have changed. Apparently the doctors want to make sure they aren't weaning Gabby too quickly. They weaned her nitirc oxide down to 5ppm and then will wean it to 2ppm tomorrow and then 1ppm on Saturday. They may leave her at 1ppm for a few days to see how she does before turning it off. So, she may get extubated Monday or Tuesday now. We are comfortable with the decision since we want to make sure her pulmonary hypertension is under control.

Mommy got to give her a bath for the first time today! It felt so strange to feel like such a novice giving my daughter a bath. But it's so different with all of the tubes.

The nurse weighed her again today. Previously Gabby had gotten up to 6 lbs 8 oz, but now she is back down to her birth weight of 6 lbs 4 oz. The nurse said it's probably because she is more awake and moving around more. She's such a little peanut!

Daddy & Alyssa will be back tomorrow and I can't wait. I miss them so much!!!

Love,
Us






April 15, 2005
There's a possible change of plans yet again. They may extubate Gabby tomorrow. Reason being, since they have weaned her completely off her Morphone and Versed and are weaning her off of the Ativan, she is feeling the tube in her throat more and is more uncomfortable. She is gagging a lot and is also exhibiting some signs of withdrawal from the drugs; gagging, hiccups, sneezing, jitteriness. The nurses are really trying to convince the doctors to extubate her tomorrow since she is so uncomfortable. The doctors are being very cautious with weaning the nitric oxide, which is treating the pulmonary hypertension, because they still don't know the cause of why Gabby had to end up going on ECMO. Gabby's nurse Cathy jokes that this pretty little girl has all the big male doctors shaking in their boots because she is so unpredictable.

So, the plan (for right now anyway) is to wean the nitric oxide to 1ppm tomorrow (currently it is at 2.5ppm) and then get an echocardiogram. If she still needs some nitirc oxide, it can be administered through nasal cannulas, so if the echo looks good, we might be extubating tomorrow.

Daddy and Alyssa came back tonight and Mommy and Gabby were SO happy to see them! When Alyssa saw me she pointed and said "Momma" all excited. Momma started to cry. We went back to the house and let Daddy spend some time with Gabby while Mommy spent some time with Alyssa. It's so difficult being seperated from our girls and from each other.

Tomorrow could be the big day so say an extra prayer and keep your fingers crossed that all goes well with the extubation!

Love,
Us






April 16, 2005
Today they weaned Gabby's nitric oxide to 1ppm and did an echocardiogram, which showed that the pressure looked good and better than it had looked previously. They decided to wait until tomorrow to extubate, just to be on the safe side. No other real excitement. Mommy spent a lot of time with Alyssa and Daddy with Gabby. Auntie Rachael is coming to visit tomorrow and afterward Daddy & Alyssa will be heading back to Connecticut again.

It sounds like tomorrow is the big day for real this time. Hopefully, all goes well and we will be on 8 West in no time!

Love,
Us






April 17, 2005
Today was the big day! Gabby finally got extubated and is doing very well so far!! Yippee!!! She looks so beautiful. It was so nice that they were able to do it while Daddy was here so he didn't miss it. She's on 1/2 liter of oxygen through a nasal cannula and they will slowly start to wean that. They will also continue to wean the rest of her drugs and we should be moving to 8 West either Monday or Tuesday. Mommy, Daddy and Auntie Rachael all got to hold her and it was so nice not having to worry about the ventilator. Once we move to 8 West it will be a matter of getting Gabby to learn to eat. Hopefully she will take to it like a champ and we won't be there long, but it all depends on her.

It was a wonderful, glorious day and we are all so happy!!

Love,
Us






April 18, 2005
Wow! We had an awesome day! Gabby and I snuggled pretty much all day. It's so nice because whenever she is crying or I just want to hold her, I can just lower the bedrail and scoop her up all by myself. She still has her feeding tube and some other wires connected to her, but it's much easier to get her in and out of her crib.

The doctors are a little concerned because Gabby still hasn't been able to cry with any sound and told me there is a possibility she may have some paralysis to her vocal chords. They think it's probably just swelling from the ventilator, but to be safe, they may have an ENT look at her tomorrow. Finally around 5:00pm today, she let out some very soft, very hoarse little cries. So hopefully she is just swollen and it is taking a while for her to be able to make some sound.

Also, I noticed a few times today that she was trying to suck on her fingers. I put her pacifier in her mouth and she went to town sucking on it! I was so excited because sometimes babies who are intubated for long periods of time develop oral aversions, making feeding a long process. The nurse asked the doctor if we could try some breast milk in a bottle and Gabby sucked on it just like she did the pacifier! The nurse put 15cc's of breast milk in the bottle and Gabby took 10cc's!! We didn't let her have the other 5cc's because the nurse didn't want her to spit it all back up, but she would have taken it if we had given it to her. Then, the doc gave us the ok to try breastfeeding. That was a little more difficult as far as positioning because of the tubes and wires. Gabby didn't really eat anything, but she did suck. The doctor said he was very impressed with her progress being that it was her first day after extubation. I also gave her a bath and changed her diaper everytime she was wet all on my own. Exciting stuff!

The nurse weighed her again today and she is down to 6 lbs. She said Gabby is more awake now that they are weaning her meds and therefore is burning more calories, so they increased the amount of calories they are adding to her breastmilk. She's such a little peanut, but she is starting to develop a little personality and is SO cute!

Love,
Krista






April 19, 2005
We had another good day today. Lots of snuggling involved! Gabby took another 6cc's from a bottle today. She probably would have taken more but she fell asleep in Mommy's arms. I gave her a nice bath today where the nurse turned on the heat lamps so we could enjoy it and Gabby wouldn't get cold. She sure needed the bath after the mess she had waiting in her diaper when Mommy got there this morning!!

The ENT hadn't come to see her when I left tonight, but they are definitely going to have a look at her vocal chords. Depending on what they see, they may go in and check things out with a scope. If that happens, Gabby would need to be sedated so we probably won't move to 8 West until at least Thursday or Friday. Other than that, Gabriella looks wonderful and is doing great!

The physical therapist said we need to get Gabby some developmentally appropriate toys for her age so that we can work on her grasping objects and following objects with her eyes; things with primary colors or black & white like Lamaze or Baby Einstein type stuff. I already asked Daddy to check out some things to bring when he comes back this weekend. It's all part of Gabby's therapy.

She really likes her pacifier and is desperately trying to suck her fingers and/or thumb. I don't think she has any oral aversions whatsoever, which is awesome!

Love,
Us






April 21, 2005
4/20/05
We are officially residents of 8 West! We moved today around 5:00pm and are all settled (as settled as one can be when living at the hospital). It's a big adjustment. Mommy had an emotional day. Thank goodness for Kristin and her shoulder that I always seem to cry on. :)

Gabby was seen by the Otolaryngologist today regarding her vocal chords. They had to do a laryngoscopy, which was pretty unpleasant for Gabby. At one point Gabby was so upset, she had tears streaming down her face, which caused Mommy to shed some of my own. However, the good news is that the doctor said we had best case scenario. From what he saw, Gabby's vocal chords are just extremely swollen and she should get her voice back in about a week or so. He was concerned about the possiblity of the vocal chords being severed from the ECMO cannulas that had been placed in her neck. Thankfully that's not the case and Gabby should be crying up a storm in no time.

We are getting ready to try Gabby with some more breastmilk in a bottle and then Mommy is going to attempt sleep in this chair they call a bed. I have a feeling it's going to take some getting used to.

Love to all,
Krista






April 21, 2005
Well, last night was good for Gabby, not so good for Mommy. We ended up sharing a room and let's just say our roommate was not the greatest. Mommy had some weepy moments adjusting to living in the hospital. Gabby took more breast milk from a bottle; 16 cc's around 11:00pm and then 10 cc's around 2:00am. After the 2:00am feeding, I couldn't get Gabby to burp and about a half an hour later, she spit up everything she ate. So, we had to clean her all up and change her bedding at 3:00am. It didn't seem to bother her and the doctors aren't concerned as they think it was probably normal baby spit up since she didn't burp. She was up most of the night and Mommy only got one hour of sleep.

However, tonight a private room opened up and they moved us. Yeah!! We are even closer to Kristin and Paige, who also have a private room. Gabby took another 15 cc's today and then later took another 6 but then drifted off to sleep. The good thing is she was very fussy and I thought maybe it was time for her Ativan, but Gabby just wanted to eat. She still has her feeding tube so it's a good sign because it means she's getting hungrier. The doctors gave the ok to give her bottle feedings whenever she wants them. I also found out we don't even need to meet with the feeding team because she is taking to feeding so well. Woo hoo!

The reporter from The Hartford Courant is coming tomorrow morning to do our story with The Aitkens. Rob and Alyssa are driving up in the morning to be here for the story and the pictures and are staying for the weekend. It feels like forever since I have seen them!

Wish us more good days so we can get out of here!!

Love,
Krista






April 22, 2005
Just a quick update because we had a really bad day and Mommy is going on 4 hours sleep in two days. Gabby has a collapsed lung, her left one (which is the smaller lung) and we had to move back to the ICU. She had a very long day of trying to cough up lots of secretions from the back of her throat and the nurses pounding on her to do chest PT (physical therapy). She wasn't having the greatest morning and they ordered a chest x-ray. While we were meeting with the reporter from The Hartford Courant, Gabby's nurse said she was having a tough time bringing up the secretions and breathing and at one point turned blue and they had to bag her. They are hoping she doesn't have any infection and that our stay in the ICU will only be for a few days and that we can back to 8 West. The had to put in a CPAP, which is kind of like a breathing tube that goes down her nose and into her throat and administers puffs of oxygen. We are praying they won't have to reintubate her and that the CPAP can reinflate her lung. They will do aggressive chest PT every 4 hours and keep the CPAP in 24 hours or longer depending on how her stats are. We were told that this is pretty common among CDH babies and hopefully it is just a minor setback. Please say an extra prayer for Gabby.

Love,
Us






April 22, 2005
CPAP stands for "continuous positive airway pressure." CPAP is an airway treatment using slight positive pressure during inhalation to increase the volume of inspired air and to decrease the work of breathing. CPAP can be used by mouth, by nose, or through ventilation tubes.




April 23, 2005
Gabby is bouncing back quickly! The CPAP is doing it's job and her lung had already reinflated by this morning. The doctor showed Rob & I the pictures of her before and after chest x-rays on the computer and the difference was amazing. They think they will be able to take her off the CPAP for a trial period tomorrow and if all goes well, she can come off completely. They are going to continue the chest PT and it already seems to be helping. We also found out Gabby has an infection from her central line. They may take it out tomorrow so we don't run the risk of anymore infections from that site. She is already on antibiotics and that should help clear things up. The doctor told us the infection may have been the cause of starting her on the downward spiral and eventually she ended up with the collapsed lung. They are hoping we can get back to 8 West in a few days. They actually had to move us from P5 to P6, which is the cardiac ICU because they needed the bedspace for another child on P5. We are becoming quite the travelers around the hospital.

The doctor told us this is a minor setback and Gabby is doing well. She's showing us yet again what a little fighter she is!

Love,
Us






April 24, 2005
Gabby's x-ray looked even better this morning and they were able to remove the CPAP. The additonal cultures they were growing came back positive so she definitely has an infection, but she's on antiobiotics and should be feeling better soon. She basically slept all day Saturday and Sunday. Between the infection, the collapsed lung, the CPAP, and the agressive chest PT, poor Gabby is completely wiped out. If she continues to do well overnight, then we will be moving back to 8 West in the morning and she can resume bottle feeding. Hopefully she will pick up right where we left off with that.

Love to all,
Krista






April 25, 2005
I called to check on Gabby just now and for whatever reason now her x-ray doesn't look so good. They are thinking about putting her back on the CPAP and then "sprinting" her where they give her trial periods on and off and do x-rays to see how things look. Even the nurse said it seemed odd because Gabby was so comfortable and peaceful all night and they were even able to skip her 6:00pm Ativan dose and then wean her midnight one to 1.2 mg. So, we may not be moving back to 8 West just yet. I need to get over there so I can get a better handle as to what is going on with her and I will update later.

Love,
Krista






April 25, 2005
Apparently Gabby's lung has totally collapsed again. They think it's probably from the infection she has, which is in her bloodstream and her lungs. They had to put her back on CPAP, but this time they put her on a different one that goes in her nostrils and is more aggravating for Gabby but less invasive if they have to "sprint" her. She is very unhappy today and doesn't look herself. I can't just pick her up anytime I want to because of the CPAP so I am sure she is feeling some of that. She is also looking for a bottle and can't have one while on CPAP. The plan right now is to leave her on the CPAP overnight and then get another x-ray in the morning and possibly take her off then if things look better. Hopefully the antiobiotics will continue to do the trick and she will start to feel better. Now it looks as though if all goes well we may get back to 8 West on Wednesday. I'll give another update tonight when I leave the hospital.

Love,
Krista






April 25, 2005
Nothing really new to report. They are going to keep Gabby on CPAP overnight and see how she does in the morning once they get the chest x-ray. I'll update tomorrow.

Love,
Krista






April 26, 2005
If you can even believe it, we have been moved again. We are now on 7 North, which is the regular NICU. They needed the bedspace on P6 so when I got here this morning, they informed me we were being moved again. This is the 10th time Gabby has been moved and honestly, it is starting to wear on me. Hopefully it will be the last move until she gets moved back to 8 West.

When I got here this morning, Gabby was all worked up and very upset. She does not like this CPAP that goes up her nostrils at all. She cries and cries and nothing will soothe her. Plus, she is looking for a bottle and can't have one while on CPAP, so that is upsetting her as well. It took a whole hour to calm her down and I was getting really upset watching her so upset. I kept telling them that she was really uncomfortable. They decided to "sprint" her off the CPAP during the transfer to 7 North and as soon as they took it off she was so happy. When we got to the NICU, her nurse was just as upset as I was about how agitated Gabby was. She was tachycardic because she was so worked up and crying so much. The nurse finally convinced the doctors to switch Gabby off the CPAP and onto something called Vapotherm. "Vapotherm allows patients to get the relief they need without trading off comfort and mobility. The system heats and humidifies breathing gases to allow for higher flows-up to 40LPM without discomfort." It is administered through regular nasal cannulas like the regular oxygen she was on previously.

She is so happy and peaceful now. Hopefully she can start taking a bottle again in a day or two. Her last x-ray looked good and they will get another one tomorrow. Rather than "sprinting" her off the Vapotherm, they wean it so they have already starting doing that.

Hopefully it will be a much better, quieter night for Gabby and for Mommy.

Love,
Krista






April 27, 2005
Today has been a pretty quiet day. Gabby remains on the Vapotherm and loves it so much better than the CPAP. Her x-ray today looks better and they are weaning the Vapotherm. Her oxygen is down to 30% and they just weaned the pressure from 6 liters to 4. I asked the doctor today when Gabby could start taking a bottle again because she is constantly looking for one and I feel terrible as a mother because she is hungry and I can't feed her. The doctor explained that because the Vapotherm is administering pressure support, it could put a lot of air in her belly and eating could cause her to throw up. Once she is off the Vapotherm, they should be able to resume bottle feeds. We snuggled for 2 hours when I got here this morning, but then it was time for her chest PT and her x-ray. She discovered that she likes sucking on Mommy's thumb so by the time she was finished, my thumb was all pruny. :)

The reporter called today and said she thinks our story will be running in tomorrow's (Thursday's) Hartford Courant, so watch for that. She said she thinks it will be on the front page of the Connecticut section, but she is really hoping it will be on the front page of the paper! If anyone can get a few copies, we would appreciate it because we want some to keep and some to send to family and friends out of state. I am wondering if it might also be on the online version of The Hartford Courant, so check that too.

It should be a quiet night since Gabby is much more comfortable. The antibiotic also seems to be making her feel better, but she will remain on that for another 8 days. I think we should be back on 8 West in a few days.

Love,
Krista






April 27, 2005
I just called to check on Gabby and her nurse said she is doing very well. They may wean the pressure on her Vapotherm again tonight. I posted three new pictures in the photo gallery so you can see what poor Gabby has been through during her recent stay in the ICU since Friday- the nasalpharyngeal CPAP, the nasal CPAP and the Vapotherm. You will be able to tell by the pictures why she prefers the Vapotherm the best!

I know I keep asking for all of you to pray, but I am going to ask again. Rob's mother is in the hospital and will be having some tests tomorrow. Hopefully it's nothing serious, but we could use the extra prayers tonight.

Thanks,
Krista






April 28, 2005
Gabby had a great day today. They weaned the pressure on her Vapotherm down to 2 liters and they will take her completely off of it tonight. She will then be back on nasal cannulas of oxygen like she was prior to the collapsed lung. She was so comfortable and peaceful today. The doctor said she can even try taking a bottle again tomorrow. She will be so happy! I'm not sure when we will get back to 8 West. It will be soon, but they are taking things slow to ensure her lung is back up to speed and so we can get to 8 West and stay there this time.

Love,
Krista






April 28, 2005
At the last minute, I decided to ride back to CT with Kristin tonight. Gabby is still in the ICU, but doing better, so I know she has 24 hour nursing care. With Rob's mom in the hospital and Alyssa having a cold and us not wanting her to be around Gabby with a cold, I just couldn't risk not seeing her for another week. So yes, believe it or not, I am sitting in my house writing this update. I am a nervous wreck, but I just called to check on Gabby and she is doing great. They switched her to the nasal cannulas of oxygen and have already starting weaning it down from 2 liters to 1 1/2 liters. I may only stay until tomorrow afternoon and drive back up with Rob when he gets out of work, but I had to at least come spend the day with Alyssa on Friday. She needs to be with her Mommy and her Mommy needs her. Plus, Gabby told me it would be ok. :) I'm going now to sleep in my own bed for the first time in almost 8 weeks....

Love,
Krista






April 29, 2005
Gabby has been on the nasal cannulas of oxygen since last night and is doing very well. They started her 2 liters and she is now at 1 liter. They will probably wean her to 1/2 liter tonight. When she was on 8 West last week she was on 1/4 liter so she's almost back to where she was before the lung collapse. She also got to have a bottle again today- finally! They tried her with 30cc's, which is 1 ounce, and she inhaled it. She had another bottle three hours later and took about 20 of the 30 cc's. So far she is keeping it all down, which is good. I decided to stay another night at home after much struggling and crying, but Alyssa really needed me and Rob is in Boston with Gabby. Alyssa was so thrilled to see me when she woke up this morning and was attached to me all day. She also kept saying Gabby's name and would then make a sad face and say "Momma." She knows that when we talk about Gabby being in the hospital, that it also means Mommy goes away for a while. It broke my heart. Plus she has a cold and isn't feeling well so I decided it was best for me to stay with her. Kristin's mother is being wonderful and picking me up on her way to visit Paige tomorrow and then Alyssa will stay with Rob's sister for the rest of the weekend. If she wasn't sick, we would be bringing her with us to Boston but Gabby cannot catch it and Alyssa would be misreable up there if she doesn't feel well. Hopefully Gabby will be all settled on 8 West by next weekend and I can come home for the weekend and Rob can stay with Gabby.
Love,
Krista






May 01, 2005
Sorry I didn't update yesterday. When I got back from CT Gabby got moved to 8 West. She is doing very well. She's on 3/4 liter of oxygen through the nasal cannulas and they will continue to wean that a little at a time until hopefully, eventually she won't need the oxygen anymore. She's also taking all of her feeds by mouth during the day- 38 cc's every three hours. The doctor poked his head in this morning to say he is going to increase that amount. She has been taking the whole bottle each time but if for some reason she doesn't finish it, then they will just give her the rest through her NJ feeding tube. At night they turn the feeding tube back on and we don't give her any bottles. If she continues to do well with taking her feeds by mouth, they may get rid of the feeding tube altogether, rather than switching to an NG tube, which feeds directly into her stomach (the NJ bypasses the stomach and goes into her jejunum).

She's got her days and nights all mixed up right now and slept all day yesterday and then kept Mommy up all night. I think I slept maybe 1 1/2 hours. The nurse said they will try to help me get her on some sort of regular schedule now that she is here on 8 West.

Love,
Us






May 01, 2005
Gabby had a good day today and is up to 50 cc's by mouth 4 times per day. They are still shutting her NJ tube off during the day and then turning it back on at 8:00pm and leaving it on all night. She only had one episode today after her noon bottle where she spit up half of the bottle. Otherwise she seems to be doing ok keeping it down. We're nervous because CDH babies tend to have reflux and since she is doing so well eating, we are hoping she can keep it down. She's snoozing right now, but I am hoping she will wake up soon so she isn't awake all night again.

Daddy went back home for the week and we will switch on Friday and I will go home for the weekend.

Love,
Krista






May 03, 2005
5/2/05
Well, Gabby definitely has her days & nights all mixed up. She was up most of the night again last night, so Mommy got a whopping three hours of sleep (if you can call it sleep with all the monitors going off and sleeping on a vinyl chair). But the good news is she did well with her bottles again today. A couple of times she didn't finish the whole 50 cc's, but it was because I couldn't wake her up. And, so far so good, she hasn't spit any of it up (knock on wood). They have weaned her Ativan down to .2 and she doesn't seem to be showing any significant signs of withdrawal.

On a very sad note, there was a third family here whose baby had CDH and was staying at The Devon Nicole House as well. We had spoken with them numerous times and had gotten pretty friendly with them. Their son was about three weeks younger than Gabby and was pretty sick. When I spoke with his mom on Thursday morning, she had said he wasn't doing well. I went over to check on them Thursday during the day, but mom wasn't at the bedisde so I didn't get to talk with her. I didn't see them all weekend because I ended up going home and then Gabby got moved to 8 West and they were still on P5. Kristin and I went over to P5 today to drop off a copy of the article from The Hartford Courant and we found out that their son passed away late Thursday night. Kristin & I were floored. It made us want to run back up to 8 West and hold onto the girls and never let them go. It's also a cruel reminder of just how serious CDH really is. We found out the funeral arrangements and sent flowers to the church. Please say a prayer for the family during this very difficult time.

Love,
Krista






May 03, 2005
Gabby had a really good day today. She is still taking 50 cc's (almost 2oz) of formula 4 times per day and then getting continuous feeds through her NJ tube from 8:00pm through 6:00am. She took all of her bottles today, except her noon bottle in which she took 44 cc's and only 6 cc's had to be put into her NJ tube. And she is keeping it all down as well, which is awesome. I did my best to keep her entertained and awake today. I put her on her belly for a while to try to strenghten her neck muscles, I read her some books, and we worked on her grasping some rattles. Oh yeah, and lots of snuggles. I decided to switch her bath to 7:30pm to try to keep her awake longer. Last night she slept 6:00pm until 1:00am, so I was able to sleep from 9:00pm until 1:00am. Tonight she feel asleep at 8:00pm after her bath, so hopefully she will sleep later. Tomorrow they will wean her oxygen a bit. I thought they had already weaned her to 3/4 of a liter, but she is still on 1 liter. She's a very mellow baby and is soothed very easily by her pacifier or mobile. Her Auntie Brenda bought her this awesome mobile but when we went to put it together, it was broken, so it has to be exchanged. In the meantime, the Child Life Specialist gave us a brand new one with plush animals on it. She is mesmerized by it, so she will love the cool one her Auntie bought when we get it exchanged. She is 6 lbs 13oz and 21 3/4 inches long and getting cuter everyday.
Lots of love,
Krista






May 04, 2005
Gabby is doing well. The doctors gave the ok to bottle feed her every three hours around the clock. The lowered the amounbt from 50 cc's to 45 cc's because she will be getting it all right into her stomach and only want her to have a specific amount over the 24 hour period. They will leave the NJ tube in for now, but leave it off. If she does well with the bottle feeds around the clock, then they may take out the NJ tube and not even have to put in an NG tube. She slept 7 hours last night from 8:00pm to 3:00am, which was great but it should be interesting to see if I can even wake her up for her bottle feeds tonight. They weaned her oxygen down to 3/4 liter and may wean again tomorrow to 1/2 liter. Looks like we are heading in the right direction.
Love,
Krista






May 05, 2005
Gabby did really well with her nighttime feedings and took all 45 cc's every three hours. They deicded to up the amount to 55 cc's, but she only really needs to eat 45 cc's. If she doesn't eat the extra 10 cc's, it doesn't have to be put into her NJ tube. It's just there if she wants it.

Gabby had to have a chest x-ray today. We were a little concerned because she was acting a bit funny today, not at all like herself. The chest x-ray showed her lungs looked good and just a little wet. They were going to order an extra dose of Lasix, but decided to hold off. She was gagging a bit and was kind of fussy. She also had a tough time with some of her bottles today. She was crying while eating and I think she has some gas. She also fell asleep and didn't finish her 9:00am and 12:00pm bottles and we had to put it in the NJ tube. Her respiratory rate was up a bit and she looked a little pale. We think she was exhausted from eating around the clock. She did much better with her 3:00pm and 6:00pm feedings. She took 42 cc's and 55 cc's. We are going to see how she does tonight and tomorrow. If she is getting too tired to eat, they may have to back off a little and turn her NJ tube back on at night. I am hoping she just needed some time to adjust because it would be nice to not have to go home with a feeding tube. They think the gagging may be from the last Ativan wean so they decided not to wean any further today and see how she does. The gagging could also be from the reflux, though thankfully she hasn't spit up anything since the one time on Sunday. She's got so much going on at once, poor baby. They started talking about the "CDH protocol" with us which is basically a list of things that need to happen before we can be discharged. We still have a ways to go, but it's a good sign they are starting to at least talk about it.

Gabby is starting to gain some weight. She is up to 7 lbs 4 oz! Tomorrow I will go home for the weekend and Rob will come be with Gabby. I can't wait to see Alyssa!!
Love,
Krista






May 06, 2005
Another good day today for little Miss Gabby. They weaned her oxygen down to 1/2 liter and she did so well that they weaned her again to 1/4 liter. The next step would be to change to a low flow meter.

She continues to do well with her bottle feeding. She had a couple of episodes today in which she spit up after feeding so they increased one of her meds called Reglan, which is supposed to help with relfux and improve GI motility.

Gabby was seen by the opthamologist today as part of the CDH protocol. The doctor noticed one of her eyes deviates a little and said it is commonly called strabismus. There are tests to determine what type of strabismus and what, if any, treatment would be needed or if it is something that would correct on its own. She will need to see him in his office sometime next week. Hopefully it isn't anything serious or that would require anything invasive to her. Poor thing has been through enough.

Daddy is there with Gabby and remain there for the weekend, while Mommy is home wih Alyssa. We will do this every weekend and hopefully it will help to pass the remainder of the time we have to be there.

Love,
Us






May 07, 2005
Gabby had yet another good day today. Hopefully the increase in the dosage of the Reglan is working. Gabby took her bottles like a champ for Daddy- all 55 cc's and no throwing up.

They weaned her oxygen again. She is on the low flow meter and down to 50 ml. Obviously they are the experts, but we're a little nervous that they are weaning so fast all of a sudden. But I suppose if she doesn't need it, there's no reason to keep it. It's like a security blanket for the parents. We want her to be able to come home without oxygen, but you almost become dependent on it.

The Child Life Specialist let us borrow video phones so we have one here and Daddy has one in Gabby's room. We were able to use it tonight and Alyssa could see Daddy and Gabby and they could see us while we talked. It was a neat way to connect, especially for Alyssa.

Alyssa and I are enjoying our time together. I've noticed that when I come home for the weekend, she gets very clingy and nervous and stays very close to me, almost as if she is worried I am going to leave again. I feel so bad that she has to go through this. Hopefully it won't be too much longer.

When all of this started I had hoped we might all be home by Mother's Day. That's not going to happen, but my new goal is I hope we will be home by Father's Day. Happy Mother's Day to all the Mommies out there!!

Love,
Krista






May 08, 2005
Gabby had a great weekend. When I got back today she was off her oxygen! She had it off most of the day and was doing very well. Tonight they had to turn it back on at 25 ml, which is just a whiff. She gets into such a deep sleep at night that her breathing gets very shallow. By morning they should be able to try her back off it again.

She's eating great and they are hoping to be able to take the NJ tube out soon if she continues to do well and gain weight. I noticed that she looks different in just a few days since I last saw her. Her face is definitely filling out. She is having some episodes of throwing up, but it's not every time so they don't seem too concerned.

I brought her stroller back with me and they said I can start taking her for walks around the hospital. It will be nice because if she is fussing and I don't want to leave her, I can just take her to lunch with me.

Alyssa and I had a wonderful time together this weekend and I look forward to next weekend already!

Love,
Krista






May 09, 2005
Gabby started out the day throwing up again. She did it a few times after her 6:00am bottle and then starting throwing up bile. We got really nervous and the nurse practitioner ordered an x-ray of Gabby's belly. They were checking to make sure her NJ tube was still in the right place or to see if she had some sort of obstruction. Thankfully it was neither of those things. So, they think now the vomiting may be from her latest Ativan wean. She starting throwing up on Friday, which was the same day the weaned her Ativan to every twelve hours, rather than every eight. They gave her a rescue dose of Ativan this morning and she can get another tonight if needed, in addition to her dose every twelve hours. Knock on wood, she hasn't thrown up since this morning.

She had her oxygen off all day and did great! But just now she fell into that deep sleep and her saturations were down to 92-93% and the nurse turned her oxygen back on to 25 ml. They will watch her and probably turn it off again later tonight or tomorrow morning.

I got to take Gabby for a ride in her stroller today with a portable monitor. It was great to get out of the room and take her with me. She seemed to really like it. Kristin and I were able to go to dinner tonight with both the babies with us and it felt good not to have to worry that they were upstairs crying or throwing up and no one was with them. We also took them over to P5 to show them off. :)

Love,
Krista






May 10, 2005
It was a busy day for Gabby today. She started out the day throwing up again this morning after her 6:00am bottle. She was really gassy and crying through some of her feeds and the nurse practitioner thought she was maybe having a difficult time going to the bathroom so they gave her a suppository. She seemed a little better after that until her 9:00pm bottle. She literally screamed everytime she tried to eat. She ended up only taking 20cc's out of the 45 and we had to run the rest through her NJ tube. But thankfully, she didn't have any more episodes of throwing up.

She also had a head CT today, which they do as part of the CDH protocol. When we got back to the room from that, the physical therapist was here to do some PT with her. She was beat from all the excitement.

I also saw her surgeon today who said Gabby looks really good and he is pleased with her progress. He would like to see her take a little more by mouth and then we can get rid of the NJ tube. He also doesn't think she will need to go home with oxygen, although if she continues a pattern of low numbers at night, she may just need a whiff of oxygen when she is sleeping. I asked him when he thought we might be able to go home and he said MAYBE another week. I stress maybe because he said it rather loosely. Kristin and I joke that in hospital time, a week probably means two.

Kristin and I took the girls out for a walk in the garden today. It was the first time both girls were able to actually breathe some fresh air.

We're hanging in there but very anxious to go home!

Love,
Us






May 11, 2005
Today was a tough day. Gaaby's belly istill bugging her. She's gassy and fussy and needed another suppository today. She threw up once in the middle of the night, but so far, no throwing up today. She has been gagging and sneezing more than usual, so they are back to thinking it may have something to do with the Ativan wean. So they upped her dose back to .25 every twelve hours, which is where it was on Friday when she started the throwing up. They are going to try that for a few days and see if it makes any difference. If not, they are going to then try upping her dose of Prilosec, which is for her reflux.

Gabby also had to go back on 25ml of oxygen around 3:00pm today because her numbers were lower than they like. We are going to try taking her back off in a little while.

She's also been pretty clingy since she doesn't feel well, so Mommy has been holding her a lot. Hopefully she will sleep soon so I can try to get some dinner.

Love,
Krista






May 12, 2005
We had a rough night. Gabby was very fussy and up pretty much most of the night with gas and an upset tummy. She was really clingy again and wanted Mommy to hold her all day. She didn't have a bowel movement today (the past two days she needed a suppository to go) and they decided to start her on Colace, which is a stool softener. They didn't give her another suppository because they don't want her becoming dependent on them. She had one episode of throwing up today, of course right after I gave her a bath! So today, she had two baths.

We had a nice day as far as getting out of the room and exploring. We went out to the garden again for a while today. Gabby slept and Mommy sat in the sun and read a magazine. I thought my body might go into shock from actually getting some sun. :)

We were able to take Gabby off her oxygen again and she is doing great. Hopefully she won't have to go home on oxygen, but it's a possibility.

Gabby's friend Paige had her surgery today to place her G tube. Everything went well and she didn't even need a night's stay in the ICU and is already back here on 8 West. Hopefully they will be able to go home sometime soon as well.

Love,
Krista






May 14, 2005
Well, the Colace worked today. Gabby was finally able to go to the bathroom. Problem is, while she pooping and Mommy was cleaning her up, she also decided to puke at the same time. How pleasant that was-for her and for me! :) They decided to also add prune juice to her meds (funny that prune juice has to be ordered as a med) and also decided to up her Prilosec for her reflux to twice per day. Hopefully those changes will help her GI system and help her to get back to the volume of feeding she was at last week. We will probably not be discharged until she is able to take a little more by mouth because the alterative is to go home with a feeding tube. At this point it may make more sense to wait it out since she is so close to where the docs want her.

Gabby had her follow up with the opthamologist today. He said she has exotopia and that it is very common among babies, especially babies who have been through such medical trauma. She has a follow up visit in two months. The doc said most of the time these things resolve on their own. If for some reason hers doesn't, he said they would the