A bit of a downer post but just need to get it out somewhere. Mark doesn't read my blog and I don't want to really let on to him how concerned I am because I know he is VERY concerned and he trusts my judgment, intuition and all that when it comes to the kids so if he knew just how worried I was too it would make him even more upset about it.
Preston has us so worried that something is wrong with him, mentally. The day we checked out of the NICU the dr doing his discharge paperwork and going over everything with me she told me he needed to see a developmental pediatrician "because you know he was deprived of oxygen". Well no, we didn't realize that, it had never been put like that to us. But apparently that 1.5hrs that he was with us after birth before the breathing problems were caught deprived him of oxygen. I guess had I really thought about it I would have realized that but 1.5hrs of his brain not getting the oxygen it needed. Yeah, I'm going to bitch here, but dammit had our wishes been respected this could have been caught sooner. First, it's not all on us, he came out blue and not breathing right he got a 5 apgar at 1min then they claim he was a 9 at 10min. That is bull because I have pics from that entire time before he was put in my arms and he was blue the whole time, he did pink up a tiny bit but his hands and mouth were always blue, it should have been caught then. Not him given to us and everyone walk out to leave us to it. Second, I got to hold my baby all of 5min before the boys came in to meet him, which was the plan, they all held him a minute. Then he was passed all around for the next hour without me getting him back. There were only supposed to be certain people there and that wasn't respected. THIS was our fear, this is why we asked for that to happen. Once I got my baby back I saw how blue he was and everyone left at that same time and the nurse walked in right behind them and she noticed and he was taken to the NICU and from there y'all know the story.
Both Mark and I have incredible guilt at the stress we put him through. There are a thousand what ifs, what if we said something as soon as the nurse handed him to us, we should have known, he was our 4th. What if we had noticed earlier. But now here we are in a wait and see game to see what kind of damage (if any) our baby has from this.
It's not all from that first 1.5hrs though. His sats were very low for days. Even once on the vent his oxygen saturation was much lower than it should have been. His lungs weren't functioning correctly, it wasn't able to keep enough oxygen going. It wasn't until about the 4th-5th day when the nitric oxide started working that his sats stayed stable. During that time more damage may have been done.
So now here we are, almost 8wks out, still waiting on first smiles, still waiting on signs to show us he's developing normally. At this point they aren't there. He rarely looks AT us, he almost always looks past us, he looks right through us. We know he can see, lights will catch his eye, the tv will catch his eye, there are times he looks at us. But he avoids eye contact most of the time. He shows no emotion. There are times he seems to be seeing us but his eyes aren't looking right at us, they are usually looking up but it seems like he sees our face, it doesn't make sense. He crosses his eyes ALL the time, which I know it's normal for newborns to do...but he does it way more than any other baby I've ever seen. His eyes will go in 2 different directions, they don't always move together. He also doesn't have nearly the head control the boys did at this stage.
I've had people tell me we should adjust his age back at least 1-2wks because he was in the hospital and sedated the first week so really he'd be like an almost 6wk old baby. Some say we should adjust back 3wks since he was born at 37wks and obviously was not ready AT ALL to be born...so almost 5wk old baby. I don't know which if either we should do. But even by 5wks all 3 other boys were smiling socially all the time.
Mark is so worried that something is wrong. I have a horrible feeling that there is something wrong. I know babies, I know what is normal development and he doesn't seem to be developing normally. I've never dealt with preemie babies though so I'm praying that it's just that he's preemie and everything is fine.
Please Preston, show us something, let us know you're ok.
P.S. I don't know how long I'll keep this blog post up.
P.S. I don't know how long I'll keep this blog post up.
*hugs* pie! I hope everything is ok, I understand your concern... Hopefully he starts showing you something soon!
ReplyDeleteDon't blame yourself Beth, that's the first thing. Scarlett didn't start social smiling until 8 weeks old, some babies just take longer to show different milestones. I know it's hard, and it's a tough place to be. I hope you get answers soon. We're here for ya.
ReplyDeleteI just wanted to give you a glimmer of hope Kynleigh has just turned 3 months and she still crosses her eyes a lot and has a hard time focusing. But as far as skills go she is just now starting to do the smiling and stuff so give him a little more time before you start to worry!
ReplyDeleteThanks ladies :) It's so hard to not compare him to his older brothers though I know I shouldn't. Every baby is different but it seems like something is just wrong. I really hope I'm wrong though. I was just looking at pics tonight of a baby almost 2wks younger than him and you can see just from the pics how much more advanced that baby is. Preston doesn't even look at the camera...he barely looks at us. I remember 2 of the things they checked at each of the boys 2mo appts was that they could smile and also that they looked at you and followed you....he does neither. Granted he has a week until 2mo, maybe things will change soon
ReplyDeleteBeth, My prayers are always with you. Your little guy has had some tough hurdles,and come along way in a short time. It will take time to catch up,so try not to measure him with time, he will come around at his own pace. He has so much love, and the best family. Just keep loving him and each other. I'm sure you have expressed these concerns with his doctor, but keep telling him how you feel and don't hesitate to get a second opinion. Preston is a little fighter and God has a plan for him. Always remember you are not alone and you have a great support system. Thanks for sharing with us. *Love* Sandy
ReplyDeleteI am so sorry!! I cannot imagine going through what you are. If you ever need a shoulder, let me know.
ReplyDeleteSweetheart, I can only imagine how you are feeling. What you've gone through the last couple of months is heartbreaking and you have all been so strong throughout. It's scary to think that your children aren't developing properly, I have the same fear sometimes and the only thing that helps is the time passing by and seeing small changes.
ReplyDeleteNo matter what Preston is a beautiful lovely boy and you will all handle whatever life throws at you with grace. None of it is your fault and I hope you guys can come to terms with that fact. I really hope it all turns out well for you. *hugs*