A Scary Journey To (mostly) Healthy

In the Hospital

Right after birth

They second Bradyn was born he was crying. He also had a lot better color than his brother, Corbin, did when he was born. I got to hold Bradyn for about 5 minutes. Then the pediatrician decided that his apgar score was low enough that they needed a better evaluation with him in a medical bassinet. They then decided he was having some difficulties, so they needed to take him to the NICU. Garret went with him, which left me alone but I would rather be alone than Bradyn be alone right after being born.

About 10 minutes passed until Garret came back. He said that having a difficulty breathing and having difficulty keeping his temperature up. The pediatrician decided to put Bradyn on a CPAP, on the lowest level, for his breathing and under a radiant warmer to keep his temp up. Bradyn was on the CPAP (Continuous Positive Airway Pressure) for about 1 hour and then was put on Nasal Prong Oxygen.

Disclosure this is not Bradyn

Garret would go back and forth from the NICU to the birthing room and back for 2 hours giving me up dates. At 2 hours I was able to got to the recovery room I was also able to go visit Bradyn. Along with the oxygen tube he had a lot of wires on him. They included his heart monitor, oxygen monitor, temperature monitor, an IV which he was getting antibiotics through. They were not sure if he had been born early because of an infection so they were giving him a very low dose of antibiotics until they got his labs back.
Bradyn was on oxygen for 1 day.Most of that time he was only on 30% oxygen. Air normally is 28% oxygen but every time they would drop the oxygen to 28% he would have issues with his body's oxygen levels. We were both surprised how fast he was getting off of oxygen. Even though he was off of oxygen they still needed to keep him in there because he would have "episodes." These episodes would be where he would have difficulty breathing and then catch his breath. He still sometimes does this but he has learned how to catch his breath himself.

Feeding

Another issue was that Bradyn's feeding. He had to be finger fed because his oxygen level would drop when he was breast feeding. Finger feeding is done by putting pumped milk into a syringe, connect a tube, have the tube sit on your finger, put your finger in the babies mouth and while the suck you lightly push on the syringe. It is a lot more work then just being able to breast feed.

Tube and syringe for finger feeding

I remember, after learning how to finger feed Bradyn, I would pump then bring the milk to the NICU, then I would get a syringe and tube from the nurse, fill the syringe and slowly feed Bradyn, then wash the pumping instruments and start again.Because of having "episodes" and feeding issues he was kept in the NICU for 3 days and we could only briefly hold him.

A tiny heart

While in the NICU Bradyn had a Echocardiogram done when he 2 days old. This was used to look at his heart. Of course the Echocardiogy Tech could not tell me anything and we had to wait until we got to talk to the pediatrician. The pediatrician told us that Bradyn has a heart murmur, a congenital heart defect, a mitral valve cleft, and still had ductus arteriosus (a connection between the pulmonary artery and the aorta which usually disappears before a baby is born). We would have to see a Pediatric Cardiologist to see if he needed surgery.

Jaundice

He finally was able to come into our room and stay with us through the night. At that time I was released and we were given a parent room. But they still wanted to keep Brady in the hospital until his weight was up and to keep watching his Bilirubin levels (aka Jaundice levels) which usually peak at 5 or 6 days old. Bradyn's levels peaked at 4 days old at 16 total serum Bilirubin level in the blood. So he had to be put on Phototherapy for 24 hours which meant that he could not be picked up, again.
After the Phototherapy was finished we had to wait to make sure Bradyn's Bilirubin levels were where decreasing, he did not have anymore "episodes," and he was gaining weight until he could go home.

Going home

To the pediatrician and the nurses surprise he was doing very well. Bradyn was released from the hospital the day he turned 1 week old. Most babies do not do so well being born so early and have to stay in the hospital until they reach their due date. I was extremely happy that we got to go home with our amazing little guy. Finally all 4 of us were home together.

Since being home

Since we came home Bradyn has been very healthy.

Pediatric Cardiologist

We went to our appointment with the Pediatric Cardiologist when Bradyn turned 1 month old. We got great news! The hole between the bottom two chambers in Bradyn's heart, which the pediatrician called a congenital heart defect, had completely closed by its self! Also the ductus arteriosus had disappeared. The Cardiologist saw the mitral valve cleft was still there (In drawing: #1). He found that there was extra tissue growth under a different mitral valve (#2) and a patent foramen ovale (#3) (a small opening between the left and right upper chambers). The patent foramen ovale does not usually need any type of treatment. In the future the mitral valve cleft may cause leaking of blood going through one chamber of the heart to another. Also the extra tissue growth in the future may cause blood not to be able to efficiently pass through the valve. Both of these issues are going to be watched and may need surgical corrections in the future. Bradyn's next check up with the Pediatric Cardiologist will be when he is 7 months old. If he does not need a surgery at that time then they will have us come back every six months to make sure it is not a problem.

Reflux

The only on going medical issue is Bradyn's Refux. Reflux is caused by the Lower Esophageal Sphincter does not close all the way or opens often which lets stomach acid to go up his Esophagus. For Bradyn he does not spit this up but instead chokes on it. This causes him to gauge, cough, and have a hard time catching his breath. I think this is what was causing his "episodes" while he was in the hospital. He is now on medication called Ranitidine which he takes 0.3ml twice a day. It makes me sad to give such a little baby a prescription already but it has seemed to help him a lot! Since stating the medicine he now sleeps through the night. By sleep through the night I mean 7:30/8pm-6/7am!!

We are very blessed to have gotten such a healthy baby. Many babies with Down Syndrome have many health complications and often they need heart surgery right after being born. God has blessed us in many ways!!!