Deacon went through all of the normal tests that any other new born would endure, and thankfully everything was normal. He passed his newborn screening which included hearing and vision. This was all great news. :) Our pediatrician checked Deacon every day and while checking his heart he told us that everything sounded good. He did not hear a murmur, which was encouraging. Nearly half of all babies born with Down Syndrome have heart defects. Before we could leave the hospital Deacon had an echo-cardiogram with a pediatric cardiologist. Julie and I were there the whole time and it was pretty much an ultrasound of his heart. It was tense for few moments, but the doctor quickly assured us that he thought everything was A ok. We were extremely thankful!! :) The fact that his heart was just as it was supposed to be was one reason why it was not obvious during the pre birth ultrasounds that Deacon had Down Syndrome.
With Deacon's heart being cleared we were ready to go home!!! We were headed home on Sunday just two days after Deacon's birth. The same as all three of our other children. Believe me, I was super pumped. The birth of my children is something that I will never ever forget and it is joyed with extreme joy in general, but one part of the whole process that I despise is sleeping in the hospital. The rooms have these chairs that fold down into "beds", but most of the time I end up sleeping on the tile floor. Let me describe these chairs for you: They have stiff vinyl; almost no padding; they are divided into three sections so you always have a crack that meets up with some crucial comfort point on your body when you lay down; the three sections shift and move if you move; to put it lightly, the suck! I was looking forward to a good night's sleep in my own bed.
Before we went home the only other two things that needed to be done were Deacon's circumcision (ouch!), and then we had to wait for the home medical equipment company to come by. Deacon's biliruben count was mildly high so we needed to take a "Bilibed". Basically, this is a lighted bed for him to lay on with lights to help lower the count in his blood. After everything was loaded in the van we waited for about two hours for the equipment to be brought to us......GRRRRRRR at this point I was pretty impatient, I was ready to be home.
As I drove home I couldn't help but think about, and wonder what the future would hold for us. I was certain that there would be many challenges ahead. I also was certain that there would be many joyful things ahead, but in situations like this I think it is easier to dwell on the negative. So, I had this sort of somber feeling fall around me. It was nothing specific that I was feeling, it was almost like I knew I had a list of 500,000 things to do and I was on number 7.
So, Julie has breast fed all of our children much to my great pleasure. It is something that I highly recommend and encourage couples to consider. The science is there for anyone to read, it is just better for the babies. Lets be serious, how could something man made be better for babies than something created naturally through a mother. So, while Deacon was in the hospital he breast fed pretty good. Our lactation nurse and the doctors seemed surprised by this. At times it was almost like they did not believe us at all that he was breast feeding. The reason that they were surprised is that many Down Syndrome children have misshaped mouths/tongues and can lack the sucking reflex that most babies are born with. Most babies lose weight right after they are born, and Deacon went down to 6lbs 14oz from 7lbs 6oz when we checked out of the hospital (which is within normal range). We knew that the day we came home that Deacon would be sleepy and possibly upset, (remember he was just circumcised that morning) The day we came home he did not eat very well. We hoped the next day would be better.... Unfortunately, the next day was not better, in fact Deacon was not eating at all. Julie was forced to pump milk (which she hates doing) and we had to feed Deacon from a medicine dropper. He wouldn't even take a bottle. Feeding a newborn infant from a dropper is a tough process. To be honest, it was down right discouraging. :( Julie was miserable pumping and it was hard to know if Deacon was getting enough milk. We called the lactation nurse and basically the only thing she could do was encourage us and tell Julie to not give up. Thankfully, Julie is one of the most stubborn, strong headed, determined people I have ever met and she would not be deterred. We fed Deacon from a medicine dropper for three full days, and then........he started taking a bottle. After about a week he would take a bottle and occasionally breast feed. When we took Deacon in for his one week check up he weighed 7lbs 6oz so he had gained all the weight back that he had initially lost when we left the hospital.
Of course I am not surprised, Julie would not allow failure and Deacon was already exceeding expectations.
More to come..... :)
