Struggles of Having a Preemie with Special Needs

I knew before Little Bear was born that there would be several things we’d have to deal on top of typical newborn adjustments. But when we had to add him being a preemie into the mix, that further complicated things.

A typical preemie (without complications) will be roughly behind developmentally according to what their “corrected” age is. Preemies have two “ages;” actual and corrected. Actual age means the age they are according to how many days/months/years from their day of birth. Corrected age means taking the number of weeks they were born early and subtracting that from their actual age. Example: Little Bear was born at 34 weeks old, so he was 6 weeks early. He is two days shy of 5 months old, but he is only 3 1/2 months old via corrected age. All of that complicated jargon means his developmental abilities should line up with being 3 1/2 months old. BUT, Little Bear is not a typical preemie. We have to add in his spina bifida and how that affects his development.

The added complications of his SB include a bigger (and heavier) head than an average baby, not having a much strength in his core, and while his legs are strong, he doesn’t have a lot of toe/ankle movement. Just today he has started being able to push himself up in a “baby pushup” position when on his stomach. He is getting better/stronger at holding his head steady when he’s upright, but he still wobbles a lot. I’m noticing that he’s a lot more attentive than Little Monkey was. Little Monkey never missed a beat but he also acted like he couldn’t care less what was going on around him. Little Bear on the other hand can’t wait to see what’s going to happen and is quite involved in what’s going on around him.

It is hard at times to see other mamas share pictures of their babies who are the same age as Little Bear and know they’re able to do things he can’t. Although, I love my Little Bear just where he is, and every day he does something new that surprises and delights us. He’s a lot more grabby than Little Monkey was. Little Bear LOVES putting things in his mouth and is constantly sucking and gnawing on his hands and fingers. He has almost rolled completely over from back to stomach multiple times and has rolled over from stomach to full back once.

These are the only additional complications Little Bear’s SB brings to the picture. He was finally cleared by Urology a few weeks ago to stop cathing. We have been cathing him since he was born as neurogenic bowels and bladder are basically a guarantee with spina bifida babies. The reason we cath is to make sure that his bladder is emptying fully and there isn’t any urine going back up into the kidneys. For now, we are cleared to stop the cathing because any urine his bladder collects, he pees right out. That will become an issue when he’s old enough to potty train and then we’ll have to consider thing for “social cathing” so he can wear underwear. Bowels on the other hand have been the big issue the past week and a half. About a week ago I found blood in his stool and ended up taking him in to his pediatrician. We decided that the most likely culprit was a probiotic I tried for him. I haven’t seen any obvious blood since last Friday, but when I took him in yesterday, the swab test of his diaper showed positive still for blood. This is frustrating because now it’s just anyone’s best guess. He hasn’t been acting off, nor has he been acting like his stomach is bothering him, nor have I changed my diet at all. (*PLEASE DO NOT give me suggestions as to what you think it could be…that is not helpful to me right now*)

I’m also in the process of switching pediatricians as well. I want Little Bear to see a ped at Children’s. This is a dual purpose action; all of his records will be in one place, and that pediatrician will have more experience with the extra needs that come along with Little Bear. So all of this bowel stuff is happening as a difficult time as I can’t get him in to see specialists at Children’s for this until we’re a part of the child health clinic, which won’t happen for at least another week and a half.

I am grateful to be making mama friends whose kids have spina bifida as well and I can ping them for advice or simply moan and groan and they get it as they’re dealing or have dealt with similar things. I’m slowly gathering my “tribe” of people around me and it helps to not feel so alone and overwhelmed. We are two months out today from his last surgery, and things are still looking really good. His surgeon wants to get Little Bear past 6 months old before he’s willing to declare this a success. It’s a really comforting thing to know that our neurosurgeon is the chief investigator ¬†at our local Children’s for a major (major – includes surgeons from all around the country and in Canada) hydrocephalus study. So he really does know what he’s talking about. And Little Bear is known by name by all of the other surgeons in that study because of the surgery he had being the first our surgeon had done of its kind at our Children’s. A lot of experts are pulling for Little Bear, as well as many people all over the country.

The good that’s happened recently is how much Little Bear is noticing his big brother. He immediately looks for Little Monkey and just watches and smiles at him. I can’t wait for Little Bear and Little Monkey to get into trouble together. Both of them have the same mischievous grin. Little Bear is pretty much sleeping through the night now. Which means I actually am getting sleep. Little Bear loves his sleep quite a bit more than his older brother. I actually have to wake Little Bear up in the mornings most days. I’m learning to let the mornings go and just do what I can with getting breakfast for myself and Little Monkey. But I have noticed that Little Bear has pretty much put himself on a napping schedule much like Little Monkey did when he was that age. So yay! Our life does have a little bit of order among all of the chaos.