No more Chest Tube : )

Yesterday Aili had her chest tube taken out : ) They did an x-ray a while later to check and see how everything looked and it was great!! She did great all day! I don't think she even spit up. She is on a higher calorie formula and had 14cc's an hour through her NG tube. On Friday we started dipping her paci in the formula and then giving it to her. She seems to be getting better at it and tries to suck. The nurse thought that since she has gotten better and seems so interested that she will be ready for the binky trainer or even a bottle today! So we will see when we go in. It seems like she is getting better everyday. We are hoping to go home soon. I think all Aili has to do is get off of her morphine and get feeding down then we are home free. They will do another x-ray today to check for fluid to make sure she is doing good without the chest tube. That is all for now and I will update more later :)

Lots of pictures!!!

I promised more pictures, so here are lots!!!

Sledding...

Some video of us sledding!

Connor

Clay

Clay & Taryn

Kiersten

YAY, YAY, YAY!!!!!

So yesterday on Christmas they took Aili off of the ventilator, changed her diuretic to a non-continuous one, and also changed one of her heart medicines to a non-continuous one too. So that was a great Christmas present! Well they just paged us to tell us that they are moving her out of the CICU and to the regular floor!!! YAY!!! She is healing and improving : )

Aili is doing good as usual. Her stats are good :). The only thing that has changed is they had started her on breast milk. Well then the fluid that is in her chest turned a milky color, indicating that her lymph nodes were leaking this other fluid. I guess that means that the pressure in her chest is causing extra pressure on one of her veins. Because of that pressure she can't process the fat in breast milk. (Or something like that...we don't understand it fully). So they started her on some kind of special formula that doesn't have that kind of fat in it. I was pretty upset about that at first and it does still bug me, but I can't do anything about it. She will be able to have breast milk in time, but for now the formula is better for her.

They have been slowly lowering some of her things. Like they lowered her morphine today by a little. And every couple of days they have lowered her ventilator a little.

Tonight she did throw up twice within a few minutes. They think it may have been because they had just finished moving her around, which may have upset her or it could be because they changed her from breast milk to formula to another formula within the last 2 days. So they are just watching her to see what caused it, so they can change it. One of her stats did go down after it. It was one that indicates how deep her breathes are...they went from a 4-6 to a 1-3. But after a little while to calm down and a little suctioning she went right back to normal and she is doing fine.

So overall everything is going good and we are still making progress. I will post some pictures later like I already promised!

A video for a laugh!

I will update a little later...but today we went sledding with the kids. I will post more pictures and videos, but this one is too funny....

and now I leave you with my Mom...

Improvement!

Friday (12/19)

Aili is doing really great!! We went in and saw her and then we went down to Fort Lewis to get the kids and my Mom. They will be up here until at least Christmas Day...then we will all go back down to open presents. Anyways, once we finally got back and got to go to the hospital, Aili was doing great. They took out here drainage tubes, which means she doesn't have too much fluid in there. She still needs to get some off, but she is doing great. Also they started feedings yesterday!!!!!!!!! YEA!! She is only getting 1 cc an hour in a continuous feed through her nose (a feeding tube). Also ALL of her stats were great...her heart rate was in the 150's : ). So she is doing great.

We are about to go to the hospital now, so I will update later today!

Aili's Chest is CLOSED!

So yesterday (12/17/08) they closed Aili's chest. They had originally told us at 9 am they might, but of course they didn't do it then. So when we showed up the nurse let us know that it looked like they would do it at 1 pm. So we hung out for a bit, asked the nurse questions, and went and ate some food. The nurse told us that all of Aili's levels were great, which was one reason they wanted to close her up. You could also see that the patch over her chest was getting close to leaking, which wouldn't be good because then bacteria could get in...so it was good they were going to close her up. The nurse did say that on her x-ray from that morning it showed the upper left part of the lung was partially collapsed. They said it was probably from extra fluid in there and once they went in, cleaned up, closed her and cleaned out her drainage tube she should be good. So after eating we went back to talk to anesthesia and then they took her back. As soon as they started getting all of her cords and stuff ready to roll her away she just started crying and crying. Since she is on the ventilator, you can't hear her cry, but you can see her trying her hardest. She was bright red and looked just like she was crying. We walked back with her as far as we could. She was only gone a little over an hour. She came back and was doing great. We stayed with her for a few minutes to make sure she was settled and doing well. Then we went to do some Christmas shopping with our friend Corrin, that we met at the hospital. She works there and we usually go talk to her every night before we leave. So we did some Christmas shopping and got something to eat. We went back later and she was still doing pretty good. Her heart rate had been pretty high though...like 170's-low 180's. So they were giving her extra fluid to help with that. They also gave her some extra morphine to see if that would help. I was tired so I fell asleep on the little couch thing and Clay played on the computer. I guess while I was sleeping her stats started beeping. The nurse jumped up and went over to her. Clay said that her O2 stat was really low...like 18%. So two of the nurses suctioned out some 'secretions' from her breathing tube/lungs. The nurse told Clay it was from the extra fluid. She was doing fine after that though. And the nurse kept frequently listening to her lungs to make sure it wasn't happening again.

Here are some pictures of her....the first are before she had her chest closed (12/16)...she was so awake and looking around : ). Then there are some after they closed it up (12/17).

Aili is doing great today. She is off of the NO. She is still producing good urine, which is bringing down the swelling. They are looking at closing her chest tomorrow. All of her levels were good today. One of her levels that could indicate kidney problems, even went down!! So everything is looking great. Also the geneticist called me today to tell us that all of her tests came back normal...meaning that all of Aili's problems shouldn't be connected to anything genetic. She did say that we would probably go see them or someone at Madigan in about 6 months to check and see how she is growing.

Here is a picture of a Christmas Stocking that I made for the kids. I am starting the second one now and Clay is making one too!

Getting closer to chest closure!

Clay & are I feeling a little under the weather today, so we didn't get to visit Aili. We think we ate something bad yesterday, but are waiting it out to make sure. Anyways, I did go in for about an hour, because I had to get more bottles. Aili was doing good. They put in one more tube to help drain some extra fluid. They found some extra fluid in her right side of the chest. After they put the tube in and checked it later, all of the fluid was gone. She is peeing out about twice what they are giving her, which is helping the extra fluid in her body get out. There had been NO blood in her urine today, which we are VERY happy about, since there had been some yesterday. All of her levels were great today. So everything is looking good. The nurse said they may close her chest tomorrow and one of the cardiac doctors told me in a day or two....so maybe Wednesday.

Yesterday we came in and saw Aili for a little bit. She was doing good. Then we went home and saw Taryn, Connor & my Mom. We decorated the Christmas tree and ate dinner together. I hadn't seen the kids in 2 weeks, because they had been sick. Clay had gone down there a few times though. Anyways, we had a nice time and the kids enjoyed seeing us. Here are some pictures!

Aili is doing well today. She is a little more swollen today than yesterday. She also had some blood in her urine today. So they are watching those things. They want her to get the extra fluid off, but they also can't give her too much lasix (a med. to make her urinate more), because that can hurt her kidneys. So it's a fine line of what they can give her. So for now they are working on that. Otherwise she is doing great. They are weaning her off of Nitric Oxide and she is doing well with that.

Aili's off ECMO!!!

OK I will start from yesterday (12/11/08). They did a trial off of ECMO in the morning. She did really well. It was about a 30 minute trial. In the middle of the day they did a second trial for about an hour, which wasn't as good. They weren't sure why, so they got an x-ray, to make sure she didn't have a collapsed lung, since her O2 stats weren't as good. The x-ray came back fine. So they did a third trial which was in between the two. Her stats for that one were in the 70's. Since it had been so back and forth that day they decided to keep her on the ECMO for the rest of the day and do another heart cath. today.

So today they did the heart cath. and found that her sano tube was a little narrowed at the end closest to the heart. So they fixed that and then did another trial. She did great so they took her off ECMO. She just got back to her room and her stats are in the 80's!!! We are really happy with the progress.

Here is Aili off of ECMO!!

Updates for 12/9 &12/10

Update 12/9
They are going to try and wean her off the ECMO tonight/tomorrow. They are going to start at midnight and slowly work off of it. They will be doing an Echocardiogram in the morning. And depending on how she does when coming off of the ECMO they will do a Heart Catheterization. I will update when I know how that goes. Let's hope and pray that we can continue to move forward and get closer to coming home.

12/10
They slowly weaned her off of the ECMO this morning. She did pretty good and she stayed off of it for an hour. Her stats went down some, but with some medicines they went back to where they wanted them. They decided to leave her on ECMO for the rest of today and will most likely take her off of it tomorrow morning. They will wean her again tonight and then do a trial again in the morning.

Otherwise she did great today and we are just waiting for tomorrow...one day at a time!

Aili is out of surgery!

Aili is out of surgery. She is doing pretty well. She had a little complication. I'm not sure if I will explain this right, because I'm not even sure if I understand it right. Her oxygen levels were too low after they finished with the main part of the surgery. Also her blood pressure wasn't where they wanted it to be. So they put her on a ECMO machine (http://en.wikipedia.org/wiki/Extracorporeal_membrane_oxygenation). They think her levels were too low because her lungs had too much oxygen before her surgery which resulted in her vessels constricting and causing low levels. So they have her on this machine to help increase her oxygen levels. She is doing really well on it and in general right now though. They have actually turned it down a lot and turned down her ventilator too. Hopefully she will only be on it a few days and her lungs will be fine. If she doesn't get better there may be another cause, and they will have to do other stuff to figure out what it is.
The doctor said that her heart is good and there was no problems there. So we are just waiting and seeing. Thanks for all of the prayers & positive thoughts!
If anyone wants to see pictures of her I can email them to you. But they are pretty scary, which is why they aren't posted for everyone to see.

Stuff from before Surgery

Aili was on the CPAP for a day or two. I think they lowered the PGE again during that time and her stats improved a lot. She came off of the CPAP. Then her stats got too good, so she had to be put in what they call the 'dog house'. Which is like a plastic tent and they pump Nitrogen into it to lower the oxygen. By doing that they can keep her stats between 75-85%.

On the night she came in they did an x-ray. I'm not sure for what...I think it is just a normal thing. Anyways, on that they noticed that she is missing a set of ribs. It is her floating ones. We found out about this a few days later though, when the nurses were trading off and exchanging information. We also found out that she has a heart murmur, but that is normal for any baby with this heart problem. On the x-ray it also showed that she has a slight curve in her spine. It is right about where her heart is and from the looks of the x-ray it is caused by one of her vertebraes. That vertebrae is sort of shaped like a wedge that would hold a door open...so it causes her spine to curve. They told us that usually they just watch it as a child grows and they can either do nothing, if it isn't too bad/doesn't cause problems, they can put her in a brace or even surgery if it is bad enough.

Since they had done a few echocardiograms after her birth, they saw that the left side was larger than they originally thought. It was still small, but not as small as they thought. Because of this they weren't sure if they should do the single open heart surgery, where she would have two working ventricles or go the route of the three open heart surgeries that results in a single ventricle heart. To help them determine which would be better for Aili, they did a procedure called a Heart Catheterization. (http://en.wikipedia.org/wiki/Cardiac_catheterization). While they did this they accidentally poked a hole in one of her atriums. This really upset Clay and I. The doctors assured us that they kept her back there for longer and watched on ultrasound to make sure she wasn't bleeding and causing a fluid build up around the heart. They also did another echo about 4 hours later to double check for fluid around the heart. Everything checked out OK!

They used the information from that procedure to determine that it would still be best to go ahead with the three open heart surgeries. So we were scheduled for Monday December 8th in the morning. On Sunday the surgeon came in and explained what he planned to do, the benefits, risks, what to expect, etc. He was really thorough.

Aili's Birth Story

We left our house at about 10 am on Monday morning (Nov. 24th) , so we could get to UW by noon. We stopped and got some burgers and then went on in. They checked us in at 12 and brought us back to our room. They must have had a lot of patients because things moved very slow!! I don't think I even got an IV until 2 or 3. So they got us in there and got my IV in and checked me to see what I was. I was only about a fingertip dilated and still pretty high. So they decided to give me misoprostol to ripen my cervix. They gave me my first dose at around 4, then checked me at 8-ish, almost 9 I think, and gave me a second dose. They couldn't give me a third dose because I was having too many contractions. That was at around 1 am, so I just tried to sleep. Some of the contractions were a little painful, but mostly like period cramping. In the morning Clay (my husband) left to go back home to get my Mom. They checked me in the morning at maybe 10-ish and I was at 4 cms with about a cm of cervix left (I'm guessing that is the thickness). I asked them around then if there was a wait for the anesthesiologist, because there was with Taryn and I wanted to make sure and get one...lol. With Taryn I got my epidural at about 6 cms and then they broke my water. So my nurse went to check. My contractions were becoming more painful, but I didn't think they were too bad. I mean I was breathing and focusing through them, but they weren't to the point of when I got my epi last time. The anesthesiologist came in and talked to me (he must have been a student, because he had to have another lady in the room for when they would actually do it). So they start getting things set up. By now my contractions are REALLY painful!!!! I was squirming and breathing really hard, etc. They get the lady in there so she can supervise him. He gives me some numbing medication where he will stick me and then begins to try and get the needle in the right spot. I'm telling them where I feel pain from the needle and they are adjusting it. Then the lady gets a call and just walks out...so he has to stop. None of us knew why she just walked out. By now Clay & my Mom have showed up. The nurse tried to go get her, but wasn't sure where she had gone. I was really having a hard time and even crying...although the crying was both from physical and mental pain. I was upset that Clay & my Mom had taken sooo long, plus I was starting to worry about Aili (nothing was wrong, just for the future). I think the anesthesiologist thought I was being a baby about it. He was still really nice, but last they had heard I was at 4 cms, and here I am moaning and crying through contractions. Clay told me to breath through them and I snapped at him like "I AM!!" My mom said right then she knew I had to be between 8-10 cms, because that's when women start yelling, etc. During a contraction I felt a little gush, but wasn't sure if it may have just been discharge. I told my nurse but she said it wasn't that wet down there. (I was sitting this whole time waiting for that lady to come back). A contraction or two later I felt some more. Finally the anesthesiologist went to look for her. When he left Clay asked if I wanted him to go yell at someone. I told him no and the nurse said she already did! LOL...she said it was inappropriate for that lady to just walk out. I had another contraction with LOTS more water and I felt like I needed to have a BM SOOOO bad!!! I told them that I either needed that or the baby was coming. Then all of a sudden I just started yelling, "She's coming!! I can't NOT push!!!!" SO they laid me down and called/pushed every emergency button they could. One because there was only my Mom, Clay, my nurse and now the two anesthesiologist in the room, so no doctors for me, but also none of the doctors for Aili!!! I think I freaked EVERYONE out! They rushed everyone in right away and I pushed Aili out in two contractions...with out any pain meds. I was of course screaming and yelling and crying and telling everyone I CAN'T do this. But turns out you have no choice!! LOL. Clay barely got to cut the cord...they were in such a rush I was saying let him cut it let him cut it...and he jumped in real fast to cut it. Aili cried when she came out, but was a little purple and didn't breath as much as she should have (no oxygen needed though), so her APGARS were 7 & 9. They cleaned her up and checked her out, then let me have a minute with her, then she was brought to the NICU.

She weighed 5 lbs 14 ozs and was 18.5 inches long.

She was later transported to Seattle Childrens and I was released 6 hours after delivery. I guess if you have no pain meds and because of our situation, they find it better for the whole family to be together ASAP.

Aili is doing pretty good. She was doing REALLY good at first with her O2 stats...like high 80's even in the low 90's at times. When a baby has a heart defect like this they look for it to be between 75 & 85%. She had one episode where it got lower on the transport over though. One of the medicines she is taking is called Prostaglandin, which keeps her PDA open in her heart to allow more mixture of the red and blue blood. There are some side effects though, like low O2 stats and crankiness. The nurse and doctors had said it feels like having the flu. So her O2 stats have been falling quite a bit. She had a nose canula yesterday, with room air. Her stats keep going down pretty often, so they lowered that medicine and it helped for a while. Then since she started doing it again...like shallow breathing and apnea...they have put her on a CPAP machine. The doctors did another Eco on her heart to check something (I'm not sure what it's called though). But if it is too narrow then they will go in through a vein in her leg and use like a balloon to make it bigger. So we are waiting on that to know what their plan is. Her first real surgery should be next week.

Sorry this is SO long and probably doesn't make much sense. SO i went from like 4 cms to 10 cms in an hour or two and we are both doing pretty good : )!

Aili's Story - The Beginning

I found out I was pregnant on March 31st, 2008. Both my husband and I were very excited. We were also pretty nervous because I had a miscarriage in February. Things went great, we had our first appts. and had an early ultrasound to confirm that everything looked good. Everything progressed great and we were getting ready for our 20 week ultrasound. We went to it and got to see our beautiful baby moving around. We found out it was a girl. The ultrasound tech told us he was having trouble getting pictures of the left side of the heart. He did most of the pictures and then went and asked the doctor if he needed more. We tried again to get some more pictures and then we were allowed to leave. We never thought anything was wrong. We just thought she was in an awkward position and the tech had trouble getting the pictures he needed. I guess I should have figured out that 2 hours was a really long time for an ultrasound. Well the next day I got a phone call from my doctor telling me that they needed a more in depth ultrasound because they still didn't get the pictures they needed. He hadn't personally seen the report so he wasn't sure exactly why they wanted us to come in. We got an appt. pretty quickly. We were scheduled for an ultrasound and an echocardiogram (a more detailed ultrasound of the heart). At this appt. we found out that our new daughter had 3 problems with her heart. We were told she had Transposition of the Greater Arteries, Hypoplastic Left Heart Syndrome, and a Ventricle Septal Defect.

http://www.webdeb.com/lauren/tga.htm
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/transposition.htm
http://en.wikipedia.org/wiki/Ventricular_septal_defect
http://en.wikipedia.org/wiki/Hypoplastic_left_heart_syndrome

We were very upset about this, of course. We talked with a lot of doctors that day, who helped explain what it all meant and what would probably happen. At first they told us that yes the left side of the heart was small, but they didn't think it was 'too' small and that hopefully they would just be able to switch the arteries and fix the hole in her heart. This would mean most likely only one open heart surgery. The hospital that we go to doesn't have doctors that do open heart surgeries though, so we started having some of our care at Seattle Children's Hospital. We went there for an echocardiogram, so that they could see the anatomy for themselves. While at that appt. we were told that the left side was in fact too small. This meant that instead of one open heart surgery should would now have 3. The first one occurs when the baby is around a week old, the second is done at 3-6 months of age and the last one is done around 3-5 years old. The first one is called the Norwood procedure, the second one if called the Glenn and the last one is called the Fontan.

We continued on with my pregnancy just like any normal one for the most part. I wasn't restricted or anything. We just had more appts. I had to go in for a growth ultrasound every 4 weeks. Near the end of my pregnancy I started having NST's (Non-stress tests), which is basically where they monitor you and the baby to make sure they baby isn't under stress. Lots of women have these and for lots of different reasons...some for the mother and some for the baby. In the beginning of November we met with one of the surgeons at Children's, and he explained what they would do and how they would do it. I also saw an OBGYN at The University of Washington Medical Center. We decided that I would deliver there, by being induced so that they baby would be closer to the Children's Hospital. Everything went great for the rest of my pregnancy and I was scheduled to be induced on November 24th.