Birth - First Month

Grant Michael born December 26, 2011 at 1:39 am.

Weight: 5 pounds 4 ounces Height: 18 inches

I created this blog to keep up on Grant's progress and allow others to stay apprised through it all. This post will contain a lot of info since this is the start of it all. Going forward, I will just update as we go. 

For starters, I had been experiencing many problems during my pregnancy and had the "instinct" that something wasn't right. On Christmas day we went to the hospital due to complications and they ended up keeping me since his heart rate was decelerating...they said the cord is probably wrapped around his neck. They induced me and had me on oxygen. I came close to c-section because as my contractions got stronger his heart rate dropped substantially.

Finally, he decided to come...and fast! Knowing how it felt to push an 8 lb 8.1 oz baby out, I knew something wasn't right. I was nearly 38 weeks and he popped out like it was nothing. He was blue and very small. He wouldn't cry so the neonatal staff rushed in. After 35 minutes, he finally took his first breath. It was so terrifying. The umbilical cord was, in fact, wrapped around his neck...twice around neck and also around his should then under his arm. The cord was skinny and short. The doc said if we had not come in, Grant probably wouldn't have made it in there any longer. Doc also said he was concerned about the size of umbilical cord and our baby so he wanted to test the placenta and cord to see if that could give insight. 

Meanwhile, Grant struggled with breathing and had a hard time nursing. He spit up often...only it was through his nose. He had a few odd things that didn't add up about him so they took him back to Special Care (their version of NICU) to do some thorough testing. They found a murmur and had Children's come to do EKG...found VSD (hole in heart) and noticed his left nostril was clogged. So, the Neonatal Doc decided to send him to Childrens NICU for further testing including genetic testing. He thought he may have had a syndrome called CHARGE (a very rare disorder...1 in 10,000) 

At Children's, they ran many tests and asked thousands of questions. Had an MRI of brain (thought it was Encephalocele) and {Thank GOD} it was not...although, it is a choanal atresia (which means his bone in one nostril never opened) so they will have to do surgery at some point on it. They also did a MRI of spine because they saw a dimple in his lower back...nothing came up on that. They did ultrasound on Kidneys and found a medically insignificant cyst.  They ran blood work daily. His platelets were very low and he had a hard time stabilizing his temperature. 

After 4 long days in NICU (which happened to be New Year's Eve!), we were discharged and we celebrated happily! A few days later, we received a call from genetics...He has 22Q11.2 Deletion Syndrome (otherwise known as DiGeorge or VCFS. ~ We were thankful it wasn't CHARGE and that he didn't have Encephalocele. ~  On the other hand though, we were very distraught. We felt a ton of different emotions... "why us...we're good people...why is God punishing us...it isn't fair".  Then we sucked it up and realized he has been given to us for a reason. There is a purpose for him to be in our lives. Rather than focusing on his disabilities, we are focusing on his abilities and strengths. This "diagnosis" won't be the final word. We will overcome and fight with him every step of the way. We will focus on his God-given talents rather than defend his rights and focus on what he CAN do rather than what he CAN'T do. 


He will begin a journey of many doctor appointments and surgeries. He will be poked and pronged at. And it all begins now. Thankfully, most the appointments will take place in Children's Hospital. So far, here are the ones we have scheduled:

• He has a "skin tag" on his rectum and will determine if surgery is needed. 
• He has been experiencing tremor like convulsions and had an EEG. They saw "abnormal brain-wave activity" and the neurologists want to see him to evaluate, assess and possibly run more tests. 
• Children's has a clinic that specializes in 22Q. Here, they will evaluate, assess and run tests. He will see a Craniofacial Specialist to determine if he has cleft palate or any other facial features regarding this disorder. This clinic is available on Tuesdays and they offer nearly every type of medical specialist available to help minimize running to too many places. It makes it more convenient under the circumstances. 
• Help Me Grow will come to us to assess and evaluate our home and life-style; give us pointers on how to help him grow and develop.
• ENT will follow up on his choanal atresia. We will be inquiring about the nasal mucous that is seeping out of his "closed" nostril and out of his eyes. 
• Cardiology will run an EKG to check his heart. 
• Eye Clinic for further testing

Along with these visits, he will be getting weighed often. His pediatrician weighed him and he hasn't gained much. He was weighed on January 9th at 5 lbs 7.5 oz's and again on the 18th at 5 lbs 7 oz's. He lost half an ounce. His doctor is very worried about weight and that he really needs to gain. He is going down in percentile. So we were asked to supplement with high calorie formula. Originally we were alternating at breast then formula but he really disliked formula. We came up with a concoction (approved by docs) that consists of formula, breast milk and "Thick-It"...all mixed up and he seems to like it. This should hopefully create more fat and calories per feeding. If he continues to lose weight or not gain any, they will most likely put him on a feeding tube.

We are constantly praying for God to give us strength and courage. Praying for the doctors to not over-look anything and be on top (as they have been). Praying for Juliana (our oldest child) to understand and know we still love her even though all our attention is not focused on her all the time. Praying for Grant that he can continue to thrive and develop. 


We have had an over abundant amount of support and prayers from friends and family...even from people we haven't spoke to in ages. Its amazing how any people come together and help during extremely rough times. We truly appreciate everyone's continuous support, love, and prayer. 


Here are websites that they provided us regarding 22Q11.2 Deletion Syndrome:


http://ghr.nlm.nih.gov/condition/22q112-deletion-syndrome


http://www.22q.org/newly_diagnosed.php

http://www.chop.edu/service/22q-and-you-center/about-chromosome-22q112-deletion/