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!!!

"It Was God Who Chose Me for You!"

Proverbs 16:9 "We can make our plans, but the LORD determines our steps."

I did not realize how true this was when I decided to reference it on my cap when I graduated from Western Oregon University.

My College Career

I started my college career in the Fall of 2007 thinking I would become a nurse. In 2008 I "re-met" my now husband, Garret (Complete story here: http://ascherls.blogspot.com/). Then in 2009 I followed him to Oregon and started at George Fox University. After this I decided I wanted to get a degree in American Sign Language (ASL). I married Garret and moved to Corvallis, OR. I took a year off school and then went to Western Oregon University (WOU). 1 year before graduating WOU changed the degree requirements for graduating with a BA in ASL. The change would make me have 2 more years of school. This was not an option because of the chance of my husband possibly getting a job in another state after he graduated the next year. There for I changed my degree to a BA in Interdisciplinary Studies focusing on Special Education (main focus), Humanities, and Social Science. I graduated in June 2014 not knowing how important this change would be.

A realization!

In September the importance of this change started to come into focus. Bradyn was born. We were told he had Down Syndrome on September 21st, the day he turned 2 weeks old.
When Bradyn was almost 2 months old we went to a Play Group through Northwest Down Syndrome Association. It was there that I realized that my degree will be helpful. I realized that I had been educated in Special Education and many things that my be helpful for Bradyn.
I have been educated in Early Intervention (special education for children under 3). I have been educated in Early Childhood Development. I have been educated in ASL, which is helpful for children who have Down Syndrome to learn to communicate.

I am BLESSED to be Bradyn's Mom!

Over the last few weeks I have realized that it was not chance that I am Bradyn's Mom. God chose me! He designed my education to help Bradyn throughout his life. God gave me resources to be able to advocate for my little guy.

Why is this blog called "extra hanDSome"?

During Pregnancy

When I was pregnant with Bradyn everything felt good. I love being pregnant and having that little one move inside of me. We decided not to find out the gender of our baby and decided it would be a great surprise for in the delivery room.

Ultrasound(s)

The first ultrasound

The first ultrasound was great. When I was 11 weeks and 5 days along I had a Transvaginal Ultrasound. Both my son Corbin and my Husband got to be there. I was a normal ultrasound and the baby was healthy.

The second ultrasound

The second ultrasound was at 21 weeks and 3 days. The ultrasound tech was very quiet and Garret was falling asleep, he says the rooms are too quiet and warm lol. At the time I thought that the ultrasound tech was just a quiet person but looking back on it I dont think that was it. Later that day one of the OBGYN's from the OBYN/Midwife group called me. She said on the ultrasound saw the baby had 2 Echogenic Intracardiac Focus (EIF) (calcium spot on the heart), a Nuchal Fold (NF) (extra skin on the back of neck), and extra fluid around the heart; they are all possible markers of Down Syndrome. She also said that we needed to see a Maternal Fetal Medicine and Genetic Councilor.

Maternal Fetal Medicine and Genetic Councilor

On June 12, I went to the Maternal Fetal Medicine and Genetic Councilor. We had seen them twice during my pregnancy with Corbin. The Councilor said, even with the three markers, because of our age and no history of Down Syndrome in our family there was only a 4% (or was it 6%?) chance of our baby having Down Syndrome. We decided to turn down doing an amniocentesis or a Cell-free Fetal DNA Analysis (They take blood from mom where they can find baby's DNA! Really cool!).
They did an ultrasound and found that there was no fluid around the heart. But there was 2 EIFs and the NF was present. They decided that we would do an ultrasound every 5 weeks for monitoring. Bonus! Get to see the baby extra!

Because of denying the tests there was no changes in information until after Bradyn was born.

Birth and Characteristics

After Bradyn's quick entrance, which can be read here: http://extra-handsome.blogspot.com/2014/11/the-early-bird-bradyns-birth-story.html, the pediatrician thought that he had "Down Syndrome characteristics." I did not think so until they pointed out the fold between his eyes and his nose, the extra skin on his neck, and the fold across his palm. We all agreed to have a chromosomal test sent out to determine if he does have Down Syndrome.

The Results!

When Bradyn was a week and a half old I unfortunately was admitted back into the hospital. I had a temperature of 103.6! It turned out that I had Endometritis and I was in the hospital for 4 days (Friday-Monday). The worst part was not being able to have my brand new baby with me, Hospital policy.
Sunday morning Garret, Corbin, and Bradyn came for a visit. Right before they were going to leave one of the pediatricians came into my room. They had the results of Bradyn's chromosomal test!

"So we have the results of the chromosomal test. It looks like Bradyn has an extra copy of chromosome 21. Bradyn has Down Syndrome."

I remember everything just slowing down, almost like slow motion. Corbin was playing quietly with a toy a nurse brought in earlier. Garret was asking about the variations (Trisomy 21, Mosaicism, Translocation). The doctor said "It is the most common type of Down Syndrome, Trisomy 21." 

There were no tears. Just acceptance. Our baby has Down Syndrome. God is holding us in his hands he has a plan.

I just looked at my family.This is the new us!

His extra chromosome makes him "extra hanDSome."

The Early Bird (Bradyn's Birth Story)

Due date: October 9

Born: September 7 (4.5 weeks early) 

The build up

On the night of September 6 I started to have contractions. They were about 10 minutes apart but I took acetaminophen and went to sleep. The next morning my husband, Garret, left for hunting Geese at 4:30 am in Eugene, OR. I woke up around 5:30 because of being uncomfortable. I tried to stay in bed for another hour and then got up. After my son, Corbin, woke up I decided to call the midwife. She said to drink 3 cups of water and take a bath. After doing what the midwife asked the contractions kept getting closer. So I called the midwife back and told her that he bath and drinking water did not slow down my contractions. She decided that I should come in to get checked. I got Corbin dressed, grabbed my purse, Corbin and his backpack and headed to the hospital, it was 8:25 am. On the way there I remember thinking "I really should have gotten someone to drive me, too late now."

At the Hospital

Corbin and I got to the hospital. I remember thinking that I was going to get checked and monitored and be sent home because of false labor. The nurses were very sweet and brought Corbin in crayons and a coloring book as I changed into the hospital gown. Around 9 am the Midwife (Katie Robins) came in to check me. She was the Midwife that had delivered Corbin. She checked me and I was at 10 cm!!!!! I was completely shocked! The pain was not as much as when I had Corbin. I thought that I was maybe at 5 cm if anything at all (I had not gotten far enough in the pregnancy to be checked). I immediately called Garret but he did not answer. So left him a message saying that I would probably be having our baby without him. He called me about a minute later saying he was on his way but would TAKE HIM AN HOUR! I decided to try to wait for him.

Waiting

While waiting for Garret, I called my friend, Nichole, to come get Corbin. Her family had just gotten home from Hawaii the night before and all had colds. Other arrangements had to be made at the last second. Nichole ended up coming to the hospital getting Corbin and bringing him over to another friend's, Michelle, house.I also called my Mom, who lives 5 hours away. At first she did not answer when I called her cell phone. I called her house phone and she left the house within minutes.

During this time I also was being talked to by the Hospital pediatrician. She was saying because of our baby being so early it was likely that the baby would probably have to go into NICU.

I then called Garret asking where he was and said "If you do not get here in the next 5 minutes I am going to have this baby without you." Luckily he was only 1 stop light away from the hospital.

Garret arrived

Finally Garret got walked into the room around 9:54. I remember getting a kiss from him and he sat down in a chair beside me. I had 1 more contraction and then asked the Midwife "Can I start pushing now?" She said "If you are ready yes!" My water had not broken so it was decided that I would try to to pop my water by pushing. After 3 pushes it did not break and we decided to her rupture it. After only 10 minutes of pushing our baby was born!!! (The pushing would have taken less time if Bradyn had not been (sunny side up" which also made it hurt more). The Midwife asked Garret "What is it Dad?" (we did not find out the gender of our baby. "Its a BOY!" he said.

Bradyn Michael Ascherl

born at 10:04

Total labor from 5:30 - 10:04 (4 hrs 34 mins (it would have been about 3.5 hrs if I didn't wait for Garret))