Emory was in the NICU for a month and came home on June 6th. Once home, we were instructed to follow up with a GI specialist, an endocrinologist, his pediatrician, his cardiologist, an immunologist, and when the time came, a craniofacial doctor (when he gets his first tooth). Just before he left the hospital, they removed his NG tube (feeding tube) and he was eating good on his own. Well, within a week of us being home, he began refluxing severely. We visited a GI specialist and he wasn't much help. Between June 6 and July 22, we were back and forth to doctors, had an upper GI, the reflux was getting worse, Emory was not gaining any weight, etc. We had gone to TN to see my parents on July 16 and when Emory continued to get worse we were able to get an appointment with another GI specialist (our second opinion) on Thursday morning July 22nd. Thankfully, he admitted Emory into the hospital for observation. They concluded that he had severe reflux, needed a different formula, and sent him home on July 26th on the feeding tube. That helped some, but not completely.
Later that week on July 29th, we had our usual appointment with the cariologist (we were seeing him every 2 weeks). After hearing us voice our concern, doing an echocardiogram, and examining Emory, he sent us straight to the hospital to prepare for open heart surgery. Needless to say, we weren't expecting to hear that on that day. After arriving at the hospital, we were kind of in a holding pattern waiting to get a spot on the surgeon's schedule. On August 3rd, Emory had his open heart surgery just before he turned 3 months old. Although that was an exhausting time for us, Emory was such a trooper and I'm so glad he had that done at such a young age. During the surgery they fixed the ASD and VSD and the surgeon said that the hole in the VSD was "huge".
Following that visit to the hospital, we came home on the feeding tube but within 6 weeks were showing some improvement with bottle feeds. From August until October, the doctor appointments have been many, we've had one other hospital stay, several medicines to be given daily, etc. But, on October 29th, we saw the cardiologist and he told us that we didn't have to come back for 6 months! That was such good news to hear!
For now, Emory is off all medications. He sees a physical therapist every two weeks and is doing well with that. Developmentally and physically, he is behind about 2 months. However, he is eating great, keeping his food down, holding his bottle, grabbing his feet, etc. Our two goals right now are to get him to gain weight and to get him to sit on his own. We continually follow up with all of his various doctors and they do bloodwork often. His latest bloodwork came back great! To look at Emory, you would never know anything was wrong with him or even suspect what he has already experienced in such a short time. We are often asked what his prognosis is for the future and we really don't know. The immunologist told us that she has never seen any case of "22q" the same and that all children are different. So, the months and years will be able to tell. Thankfully, the more we learn about his diagnosis, the more we can understand the "root of the problem" when we notice any abnormality or delay in Emory. One thing I have learned is that if we have to make a run to the emergency room, I should just take an overnight bag and prepare to stay.
Things I am thankful for......
- If Emory had not been born so early, we would not have received his diagnosis of the DiGeorge Syndrome so early; therefore, not knowing "the root of the problem".
- Emory was taken care of by some of the most qualified neonatologists in this area as well as some of the most caring nurses in the NICU.
- God placed us in an area where the children's hospital is in the top 3 in the nation regarding cardiac care.
- The surgeon that performed Emory's open heart surgery is the chief of surgery at that hospital and took great care of us on that long day. On one of our return hospital stays for something else, he saw me in the hallway and remembered us....quite impressive!
- The Emory Children's Clinic (our "22q" doctors) is one of only 5 in the nation that deals specifically with DiGeorge Syndrome and God allowed us to live close enough to it for our appointments.
- Our church family, Pastor Al, Dr. Steve Odeh, and our Sunday school class....we could not have gotten through all of this without the help of everyone there (you know who you are)
- Prayers of pastors, churches, friends, etc. all around the world....literally!
- The support of our family....all of them, but especially my parents.....my mom has come in and taken over care of Emmitt and Eli, house cleaning, laundry, cooking, etc. several times and we couldn't have done it without the help of her and my dad
Emory is holding his bottle on his own most of the time
Emory is grabbing at toys
Emory is eating jar baby food
Emory smiles at us
Emory knows us and responds to us
Emmitt and Eli have adapted so well to everything through all of this
Our prayer now, and you can join with us, is for protection against illness for Emory, for Emory to gain weight, and for him to reach the growth milestones in a timely manner.
Obviously, I wrote this letter/blog post at two different times. And, at this point in our Christmas newsletter, I would update you on Claude and I and what we are into these days. However, you've read enough for now and I've taken up enough of your time, so that will come later in "Part Two". Claude wants to submit a blog as well, so we'll let that be "Part Three" so to speak. We would love to hear from you throughout the year. Feel free to contact us through email or facebook. Should you want our home address or phone number, you can request it then. I realize that this is getting out after Christmas - I had surgery on the 17th of December and everything has been delayed this Christmas season.....all the baking, the Christmas cards, some of the activities, etc. I guess it's better late than never.
We are thankful that things have slowed down just a bit regarding all of our doctor appointments. We are very thankful that God has taken us on this journey together as a married couple, as parents, and as a family. We may not understand it all, but we are thankful. God has truly blessed us beyond what we deserve or would have even thought of. We pray God's blessings on you and your family in the coming year.
Claude, Twila, and the "3E boys"