When people hear that my son was born at 24 weeks the first thing they always say is, "you'd never know". Most of the time, I smile and say how remarkably well he has done considering how early he was born, but sometimes I feel like banging my head against a wall! Unfortunately, once a preemie is discharged from the hospital that does not mean they are magically transformed into healthy, full-term children. In fact, most preemies live with side effects of their prematurity for the rest of their lives. Unless you live with a premature baby (or child) every day you don't get to experience the frustrations that come with being the parent of a premature baby.
For example, Jacob has problems with his vision due to ROP, a condition he suffered from when he was a few months old and subsequently had laser eye surgery to fix. He wears glasses or I should say is SUPPOSED to wear glasses, but you try keeping glasses on the face of a two year old. It isn't easy and more often than not he rips them off his face where they hang around his neck or he finds a convenient spot to hide them so I have to spend 20 minutes searching the house high and low for them. Every time we go to his follow up eye appointment, the Ophthalmologist comments on how Jacob's eyes are not getting any better and he can't believe that Jacob will not wear his glasses because "clearly he can see better with them on".
One of our bigger struggles with Jacob has been weight gain. He gained considerably for the first 15-18 months of his life and I figured we would be one of the lucky few who avoided the label of "Failure to Thrive" which happens quite often when a baby is premature.
In September, at Jacob's 18 month appointment, he weighed 21 pounds and 1 ounce. Not bad for an 18 month old former 24 weeker. It would have been nice if we continued this trend of gaining, but sadly when we had him weighed at his Cardiologist appointment in November he had only gained 3 ounces....in almost two months. I felt somewhat prepared for this seeing as most of the preemie moms on my message board had dealt with this at one time or another. I had been paying attention to their blog posts about high calorie foods and pumping calories in their underweight toddlers so I tackled this next chapter of Jacob's life with sheer determination. He WOULD gain weight.
I met with a Nutritionist who weighed Jacob and we discussed a normal day for him calorie wise and his eating habits. The next few weeks were spent trying to sneak in as many calories into his diet as possible. I started pureeing an avocado and adding it to his oatmeal. When he was sick of that I would add half a banana and a tablespoon of peanut butter. I started adding whipping cream to his whole milk, I added an extra meal of a smoothie made with whole milk yogurt, whole milk, pureed fruits and veggies and sometimes even a packet of Carnation Instant Breakfast if his appetite was big enough.
When the Nutritionist came to check on him a month later he was a full pound heavier. I thought to myself, "Could it really be this easy?". She followed up with him six weeks later and though it was only a few ounces he was still gaining weight. As of his 2 year appointment in March, his Pediatrician had recorded his weight at 23 pounds and 9 ounces. Not bad, but it could be better. I told myself, "At least he is gaining weight. We are heading in the right direction."
At Grace's 9 month appointment in April, the Pediatrician asked me to bring Jacob in for Grace's appointment just so we could weigh him and see how he has been doing. He put him on the scale and I was so excited expecting he'd register at least 24 pounds. He had to be! I had noticed his 12-18 month clothes getting tight. His shirts were hardly covering his belly and his pant legs were inches too short. He sat Jacob on the scale and I watched the numbers tick up and stop.....23 pounds 5 ounces. He had lost 4 ounces. The first time since he was born that he actually lost weight. I begged the Pediatrician to weigh him one more time and I willed the scale to climb higher to no avail. My heart sank. I figured it must be because he is taller. Nope. His height had stayed exactly the same.
After discussing all the possibilities with our Pediatrician we decided to start by having some blood work done to make sure there are no underlying conditions causing this weight loss (thyroid, etc.). This just recently came back negative so that is good news. Our next step will probably be consulting with the Cardiologist in Boston again and having them take another look at Jacob's VSD. We discovered this at his 20w ultrasound and so we knew Jacob had this prior to him being born premature. The last time we were in Boston for an EKG they said everything looked okay. He has nice pink cheeks, his breathing is normal and he is very active, but they want to follow up on it in November when Jacob is able to sit still for the 45 minutes they need to get a really good look. The concern now is that if the VSD is any bigger and Jacob's heart is having to work harder to pump the blood through than he could quite possibly be burning up his calories faster than I can feed them to him.
Jacob has been doing pretty good with his eating habits lately. He is actually starting to listen more so when I say, "no more milk until you have another bite" he takes another bite. I'm sure his interest in eating will increase as he watches Grace. They seem to be getting in competition mode so I am hoping to ride that wave for awhile and hope it pushes him a little more to catch up with his baby sister.
In the meantime, please keep Jacob in your prayers. We're hoping his weight gain trend starts up again. His next appointment is on July 26th for a weight check at the same time as Grace's one year well visit. I am assuming at this point she has passed him or is really close because at her last appointment they were only separated by 3 pounds!
I guess in conclusion I can say that the grass is always greener. When Jacob was born, I thanked God every day that passed that we avoided an IVH or NEC which are very serious, life threatening issues for a premature baby. I always counted myself lucky when he didn't require any major surgeries at just days old or come home requiring to be tube-fed or on oxygen. I am definitely thankful for the gift of life because I do realize there are many Moms who are unable to hold their preemie babies who were born a couple of weeks too soon. I pray for those people as often as I pray for my own son because only the Mom of a preemie understands what another preemie Mom is going through.
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