June 19th (Tuesday) Chanae's water broke. We were watching TV and she thought that something was off so we called the doctor and explained that she was a little wet. He said it was a possibility so we went in. They did a test and it came back negative so they decided before sending us home they would examine Chanae and during the exam her water broke so they induced labor. They told us 10 hours of dilation and two hours of pushing. We started at 11:00 pm so they estimated Noon on the 20th (Wednesday). Everything was going great and around 5 a.m. the nurse came in to check out Chanae. Then another nurse came in and then another and then a doctor. They were moving Chanae and positioning her and it was around the time that they started her pushing that they noticed that I was there and sent me to the right place so that I would be front and center to see little Leah come. 2 minutes later Leah was here. It was amazing, I cut the cord and they washed her and weighed her. 5 lb 4 oz at 17.5 inches. They explained that what had happened was that she slid down and got the cord wrapped around her neck. This caused her heart rate to drop and they needed to get her out.
She was perfect. That's what they told us the first day. We enjoyed every minute of holding her and cuddling her and seeing her do all of her magic tricks like opening her mouth and eyes and breathing and making faces and all of the things that new parents get to enjoy.
Thursday morning we met with doctor Cornish. He is a pediatrics doctor that works at the hospital. He explained that they wanted to do some tests because full term babies shouldn't be that small. They were going to makes sure that her heart was OK and draw some blood and everything like that. He also explained that one possibility for her being so small was that she could have Trisomy 21 also known as Down Syndrome. He answered questions but also said that it was possible that she was a small baby and that's that.
Leah had an Eco-cardiogram that afternoon. During the exam we asked the technician if he saw anything and he said there were a few issues. We later learned that the reason that he didn't tell us anything more was because he wasn't allowed to tell us. He took the information to Dr. Hoffman who is a heart specialist. He came and told us that Leah has a Congenital Heart Defect. He then had to leave and finish clinicals. He came back later and explained more.
Leah has 4 issues with her heart. She has 2 ASDs and 1 VSD she has a PDA and her Aorta artery is a little smaller than it should be. We will start with the ASD and VSD. Your heart is divided into 4 chambers. there is a left side, a right side, a top, and bottom. Leah has two holes in between her top right and top left chambers and one hole between her bottom right and bottom left chambers. What this is doing is making her heart work harder to pump blood throughout the body. She gets tired faster and is eating less because a baby's main form of exercise is eating. Any energy that she got while eating was being used up as she ate. She was sleepy and tired. This is a very common heart defect in babies with Tricsomy 21 (Down Syndrome). She will need surgery to fix this later on in life when she is stronger, probably around 6 months. Many have asked if these will heal on their own. It is possible but not likely. Some babies are born with this same defect where they have some small holes because the heart isn't done forming. Leah has large holes they call them canals. So they will have to be fixed with surgery. After that, problem solved, and we have a girl who will be just as energetic as her dad.
Ok now on to the PDA and Aorta. Before a baby is born they don't need to use their lungs. So no blood needs to go there to get oxygen. Your heart has a shortcut that takes blood strait from the chamber to the aorta and bypasses the lungs all together. When you are born that shortcut seals up and your blood goes to the lungs and then to the Aorta. Leah has a PDA which means that this shortcut didn't close all the way and blood is going into the Aorta before it has received oxygen. This is another reason why she is so tire. The doctors would give her some medicine and close it but there is another problem. Her Aorta artery is smaller than it should be. They are afraid that if they close the shortcut and have all the blood going strait to the lungs and then to the Aorta there will be too much stress on the artery and there will be more complications. The blood going through the PDA causes a murmur that you can hear when you listen to her heart beat. When the PDA closes the murmur will go away. They also explained that this is also a common defect in children with Trisomy 21 (are you seeing the pattern?)
If this makes no sense at all don't worry I was very confused too. Basically they don't want a traffic jam in her aorta so they are keeping the PDA open to relieve some of the stress until they know that the Aorta is strong enough.
With this information they took little Leah to the NICU (Newborn Intensive Care Unit)
Now, lets talk about Trisomy 21. Basic Anatomy. Each person has 23 pairs of chromosomes (46 total) when a baby is made it gets 23 from dad and 23 from mom making 46. This cell divides and divides and divides and keeps going until you get a baby. Each Chromosome is numbered 1-23. What can sometimes happen is the baby can somehow get 24 Chromosomes from one parent, because one of the chromosomes has already duplicated on its own, and 23 from the other making 47 instead of 46. This will cause the baby to die except for in a few specific circumstances. One of these is when the chromosome that has duplicated is Chromosome number 21. If this is the case the baby will survive but there will be some defects. That is how Down Syndrome occurs. They only sure way of testing is to draw some blood and send it to a lab and have them count how many Chromosomes are in the cell. If it's 46 the baby is normal if it's 47 then the baby is perfect because it has Down Syndrome or Trisomy 21. Once again I hope this makes sense.
The lab results are still out and we will get them back probably sometime next week. That's when we will find out if we have a normal baby or a perfect one. (Don't you just love the gospel?)
Now for the State of the Leah. Leah is currently hooked up to more wires than most computers now days. She looks more serious than she really is. They are constantly monitoring her pulse, blood oxygen levels, and respiration. They have a feeding tube going up her nose and into her stomach and an oxygen tube blowing into her nose. (See picture at bottom of page) They also had an i.v. to give her some more liquid but that is out now.
I hope you aren't freaking out because she is actually doing great. The feeding tube is so she can eat and rest at the same time. We still are feeding her 3 times a day but the rest of the time they just feed her through her tube and let her sleep (what a life!!!). The oxygen is also there to help her conserve energy. It actually isn't blowing extra oxygen, it's at the same amount as the rest of the room but just gives her a little blow up her nose. Doctors are great. They won't let you take a baby home that you can't take care of. When we take her home she will be stable. In order for her to be discharged she needs to eat enough consistently, not need the oxygen, and they will do another Eco-cardiogram to see how the PDA is doing. They said that it would be Wednesday at the earliest.
Today she ate enough every time we fed her. She is needing very little help from the oxygen and her murmur went away. Seeing as her Aorta artery didn't explode we think that this means that her PDA/Aorta problem is good. If it ever comes up again they can do a surgery to expand the Aorta artery. Tomorrow they will probably up her feeding to us feeding her 4 times a day and doing the rest by tube. So this is definite progress. Then we will go from there and eventually work our way up to her being fed by us 8 times a day. She needs to eat 33 ml every time and she is doing awesome. They said that with her heart condition eating is like running a marathon for her, so we have a very strong baby. Another great thing is that she is being upgraded from a warming bed under a heater (that they don't need to use) to a Crib. She has had 3 different beds in 4 days. Once again she's spoiled.
Being in the NICU has been an amazing blessing because we get special training from the nurses. We learn why babies sneeze and get the hiccups, around 15 ways to burp a baby, and tons of different positions for feeding. It's also nice because we get sleep at night (though we would gladly give that up if we could bring her home.) And every time we start feeling sorry for ourselves we look around and see the babies who were born 3 months early and have to be in bubbles with more tubes than Leah. It makes us feel grateful for what we have instead of focusing on what we don't have. We can visit her at any time we want and can still hold her and feed her and change her diaper (though sometimes we let the nurses do that). We celebrate together for every little bit of progress and buoy each other when things don't work out like expected.
Our little Leah is winning over the hearts of all the nurses that take care of her. She is this tiny thing (5 lbs) that loves to move. We have been blessed so much by ward and family members. We now have a better understanding of the power of prayer. With so much going on it is strange to think that Leah is only 3 days old. She has come so far in these 3 days and will continue to get better and better.
We will send out updates as they come and try to let you know as soon as her results come back for Down Syndrome.
We haven't put any of this on Facebook yet. But might in the future.
Thank you for all of your prayers on Leah's behalf. Miracles do happen.
We are excited for you all to meet Leah
David, Chanae and LEAH!!!!
UPDATE:
Leah Marie is Perfect
Since Leah has been born I have had to learn about what an ASD and VSD is, what a PDA is and where the Aorta Artery is. Plus why a baby might have Trisomy 21. Well the doctor called and it turns out that we are going to get to learn what it is like to raise a girl with Trisomy 21. Leah Marie Landeen has Down Syndrome.
I will admit that at first we were terrified. Even though we had been planning on it for the past few days it was suddenly real. We really didn't know what to think or expect. It was tough but by relying on the Lord and on Each other we were able to accept our lot and say come what may and love it.
Leah has been eating great today. The plan is that she is on a 8 hour on-demand eating schedule then tomorrow she goes to a 24 hour on-demand eating (on-demand meaning that she has to wake up and signal that she wants the food.) We will also learn about how to use the oxygen and monitors that she will come home with and then we get to bring Leah home to the most loving family (immediate and extended) in the whole world.
We understand that it will be hard but that's what being parents is all about. At least we don't have to worry about her ever coming home with her tongue pierced.
Thank you for all of your prayers on ours and Leah's behalf.
I am putting this on facebook so feel free to comment here or there.
Leah Maire, Chanae, and David.
