Progress Progress Progress

I have been a little bit of a slacker with doing an update with all of the GREAT things going on right now.

Towards the end of April Hannah had a swallow study done and did great.  We were told we could start with tastes of baby food and after one day of tastes she was ready to really eat.  She didn’t do the best at first with taking bites, but in less than a month she is eating a least 2oz of baby food a day and is getting better with the process and coordination required for eating.  So far we have tried sweet potatoes, carrots, squash, bananas, apples, green beans and peaches.  She absolutely DOES NOT like peaches for some reason.  Everything else she will eat, though I think sweet potatoes are her favorite at the moment.  Right before taking her first bite, she looked very excited.

She is progressing so well with Early Intervention and Physical Therapy.  They say each week how she is doing great and seems to be so much stronger than the week before.  She has gotten to where she really loves to stand, supported of course.  Her rainforest jumper and her exersaucer are two of her favorite things to do and are helping to really strengthen her legs.  Her rolling over is getting better, but that is the biggest thing really holding her back to being right there with where typical children are at her age.  We know those delays will increase as she continues to age, but we look at this as a positive in our book that she is doing so well and is so high functioning.

Here are a few videos of her at therapy or playing/working at home:

Trying bananas part 1
Trying bananas part 2
PT on 4/17


Welcome to Nothing Down About Hannah! Here we will talk about the wonderful life of our daughter Hannah.We are Allen and Jessica. Due to infertility we were led to the path of adoption and felt called to adopt a child with Down syndrome. We aren’t super heros, as many seem to tell us how “proud they are of us” when at the end of the day we wanted to be parents and just happen to be the parents of a child with Down syndrome.
We got the call in early October 2016 from the National Down Syndrome Adoption Network, a non-profit organization that helps link birth families, adoptive families, and adoption agencies together through their registry, about a baby girl born in September. A week later we found out that we were matched and the following week got to meet Hannah for the first time. We were absolutely in love from day one. The end of October she was officially placed with us and our home has been filled with so much love since then.

Early on in the pregnancy it was diagnosed that she had duodenal atresia, a blockage in her intestines that would require surgery shortly after birth. Around 31 weeks it was discovered she had a complete AV canal defect, a large hole in her heart that would require surgery to repair. Once the #CHD, congenital heart defect, was diagnosed they told birth mom there was a possibility that Hannah would have Down syndrome due to 50% of individuals with DS having a heart condition. Doctors offered multiple times from 31-34 weeks for birth mom to have an abortion, but she said no, choosing life and fighting for Hannah.

Hannah was born and immediately lifeflighted to Cincinnati Children’s Hospital. After birth she started having respiratory problems. At one day old she had surgery to repair the blockage in her intestines. She received the official diagnosis of Trisomy 21 when she was around three weeks old after having genetic testing done. It is called Trisomy 21 because there are three pairs of the 21st chromosome instead of two, though it is commonly referred to as Down syndrome after John Langdon Down.  

At five weeks old she had a g tube put in, a feeding tube surgically inserted into her stomach. Individuals with DS usually have lower muscle tone, which makes feeding in babies much harder due to the low tone in their mouths. This can also put extra stress on a baby’s heart from overworking trying to feed while having a heart condition.  

At eight weeks old she had a ML&B, a scope done to check out her airway and lungs to try to determine why she was having so many breathing issues. Surgery showed that she had choanal stenosis, narrowing of the nasal passage on one side of her nose, and tracheomalacia, referred to as a floppy airway where the trachea partially collapses during breathing. The scope put too much stress on her putting her in full blown heart failure, where she went from 3 liters of oxygen to a c-pap of 8 and was closely monitored with frequent mentions of being intubated, using a breathing tube hooked up to a ventilator.  
The hope of waiting for her to get bigger and being around six months old to repair her heart was no longer an option, she needed heart surgery and needed it fast, but was so tiny. For two weeks she stayed sedated because we could not risk her having any extra stress on her heart and they wanted her to gain as much weight as possible prior to surgery. We were able to pick our surgeon, so we selected Dr. Tweddell, head of cardiac surgery at Cincinnati Children’s. At 10 weeks old she had surgery to repair the large hole in her heart, which ended up being worse once they got in there including finding out she had a double orifice of the mitral valve.  

Heart surgery created a completely new baby, where he color instantly started to change from fair skinned to having some color. She was able to come off the ventilator later that night because she was doing so well. The next day she was able to start reducing the amount of oxygen from 8 liters down to 5, the following day she reduced even more. We got to come home to Nashville less than two weeks after heart surgery and she was off of oxygen for the first time in her life.

Now we have been home a few months and are active in our local Down syndrome community and hope to educate and spread as much awareness as possible about the extraordinary lives of those that have a little something extra.

We hope you enjoy going through this journey called life with us!