This is something that Sunny wrote tonight. It’s a chronicle of our journey with Joshua these past 4 years. Tomorrow a new chapter in that journey begins as we start administering HGH shots to him. We wanted to record it here for our own private viewing.
I consider Joshua to be my miracle baby. I went into preterm labor at 20 weeks and was ordered to stop teaching. I had to take Brethine to stop the contractions and was placed on bedrest. When I was 32 weeks pregnant with the twins, my doctor noticed a considerable weight difference between Baby A and Baby B. They were already closely monitoring my pregnancy and ordered me to return the following week for another ultrasound and non-stress test. Jason and I went up to the hospital that night and the next for me to be injected with a drug that would release the surfactant in our babies lungs. A baby’s lungs are not fully developed until around 34 weeks into your pregnancy.
I was determined to grow our babies during that week. I ate everything in sight and was sure that things would be fine at our next ultrasound appointment. Jason and I went in and we immediately knew that something was not right when the ultrasound technician stepped out into the hallway to find the doctor. She had done this exact same thing the week prior and we knew that chances were that we would be having our babies soon. When my doctor came in, he informed us that the weight discrepancy was much more dramatic. He said that Joshua was not growing like he should and that his placenta was actually aged to that of a 41 week placenta. We were told that we would be delivering our babies that day!
Jason and I were in total shock, but we hurried home and gathered our belongings before heading up to the hospital. At 11:45 pm, Abby Kate was born and Joshua followed at 11:46 pm. Joshua only weighed 2 pounds, 5 ounces and he was only 14 inches long. When they wheeled me into the critical care NICU, I quickly noticed that Joshua was the smallest baby in that tiny room. The nurses were in awe of our little guy. Joshua spent the better part of his first night wide awake. He was tiny. For being born prematurely, he was considered to have a very low birth weight. For a 33 weeker, he was extremely small. Most 29 week singleton babies weigh 2 pounds. Joshua was small, but he was strong. The NICU nurses nicknamed him “Mighty Mouse”; even though he was the smallest baby in their care, the nurses could tell that our Joshua had a strong, determined spirit about him. I’m proud that even though he was small, Joshua NEVER had to have the first bit of help breathing. He didn’t even have to go under the “hood”, which is extremely rare for a preemie his size.
Those first few days were very difficult. We were not allowed to hold or feed our babies. They each had IVs and feeding tubes and we learned that infants expend energy simply by being held. As hard as it was to not be able to hold them those first few days, it was even more difficult to have to leave the hospital without them. I was discharged after a few days and both Joshua and Abby Kate had to stay in the NICU.
Joshua grew and grew while in the NICU. The nurses loved all over him and could not get over how tough the little guy was. We were supposed to take Joshua home on his 30th day in the NICU. He only weighed 3 lbs, 8 ozs. He was going to be the smallest baby ever dismissed from the NICU. We anxiously rushed to the hospital in anticipation of finally bringing our little guy home. When we arrived at the hospital, though, bad news awaited us. For some reason, after already signing off on his release, our neonatologist changed her mind that morning and decided he needed to get up to 3 lbs, 12 ozs before coming home. Apparently that is considered the “going home” weight. At that point, Joshua had been gaining about an ounce per day, so we figured he’d be in the NICU another 4 or 5 days at least. What happened next simply blew us away. Our nurse called us that night after they weighed him and she could not believe that he weighed exactly 3 #, 12 oz. It was unheard of and our nurse called every NICU nurse in the unit over to the weighing station just to have the “proof” that he had actually gained 4 ounces in a day!
On August 7, 2004, Jason and I brought Joshua home from the hospital. And ever since then, Jason and I feel so blessed by our son. God truly blessed us and we are so thankful for our children.
Well, Joshua started out small, and to this day, he is still on the small side. He has never been on the height and weight charts. He has never had a percentile on those charts. Even for his “corrected age”, he falls around the 5th percentile (if even that). A little over a year ago, we started our journey with a pediatric endocrinologist at The Children’s Hospital in Birmingham. The endocrine system is very complex and Jason and I have had our fair share of questions. At our first visit, they took x-rays of his bones to determine the “age” of his bones. They also drew several vials of blood for testing. They noted that his Human Growth Hormone was on the lower side of normal. His bone age was actually a year behind his actual age. We followed up 6 months later and they noted that he had not grown. Our endocrinologist ordered a 3 hour Human Growth Hormone IV test. This test measured his HGH and found that he is Growth Hormone Deficient. He will not grow if he is not given HGH.
The process has been long. We started down this road a little over a year ago. He has had countless blood works, several IVs, an MRI, and x-rays. Our insurance company had to approve the usage of HGH. Throughout it all, he has been so brave and so strong.
Today, we will begin giving him his injections. Jason and I will have to administer his injections 6 days a week. We will do this for the next 10 plus years. He is growth hormone deficient, if he doesn’t get the HGH, he will face health problems later on in his life.
I know that Joshua will continue being brave and strong. Every time we talk about it with him, he tells us that he’s not afraid. He told Jason the other day, “It’s OK, Daddy. I’m going to be strong and courageous and never afraid, just like we pray every night.” He is my 2 pound miracle baby. He will always be my giant!