Jack is 5 weeks old today. I have not held him yet and that makes me pretty sad. I see pictures all the time of people "kangarooing" their preemies and often those babies are smaller than Jack. I really want to hold him this time and let him know that his Mommy loves him.
Jack is still off the ventilator but he continues to have periods of apnea (not breathing) and heart rate drops. When he has these "spells" as they like to call them in the NICU, he responds to stimulation and starts to breathe and that cause his heart rate to rise again. It is a little scary to me. He seems to have a number of them each shift.
He had another head ultrasound on 12/31 to check if he has any bleeding into his brain. It came back as "within normal limits" which means he has no bleeding into his brain. Obviously I am really happy about that.
He is going to have an eye exam this week to see if he has retinopothy of prematurity (ROP). In the worst cases ROP can cause blindness. They now do laser surgery for this and it has varying degrees of success. I will have the laser surgery done as soon as possible if he does have this. They can do it right in the NICU. Jack is at extremely high risk for this since he was so early, so small, on a ventilator for so long, anemic, on oxygen (still) and having periods of apnea. Here is a link if you want to know more about ROP.
http://www.retinopathy-of-prematurity.com/rop/
I am going to see Jack tomorrow. I have to fly into Memphis and drive over to Little Rock. It is about 100 miles and is a straight interstate ride. It is not too bad and I did it once before when I went down for a sonogram.
I want to find out more about the possibility about getting him transferred closer to home. I know they told me it was virtually impossible when he was first born I really want to find out if there is ANY way to do it. It is extremely difficult for me to go back and forth to see him. If I could get him closer to home I could go every day and feel like I am a lot more involved in his care.
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8 year metsterversary
5 years ago
Thanks for your comment on my blog. My heart goes out to you as I know much of what you are going through... I was always thankful that I didn't have other children at home to have to split my time between NICU and admire all of the parents that can balance that additional hurdle.
ReplyDeleteIf you caught up on my story you know that I was out of town (only 2 hours from home, compared to your situation) when Ella was born. We were given approval through the doctors & insurance to transport her home when she was a month old - but then she got ill with NEC the very next day. Thankfully she recovered and we were able to transfer her home at 9 weeks.
My insurance provided a Case Manager which was extremely helpful for many reasons, but really instrumental in getting all of the approvals in place (along with the NICU social worker) for transport. The doctors should be open to transport as long as he is stable... of course, we only had a 2 hour ambulance ride, I imagine you will need a plane ride.
I never got connected with March of Dimes, but perhaps they could assist with transport if insurance wont clear it?
I look forward to following your progress and catching up on your story. Please reach out if you need anything! You are experienced at NICU but a micropreemie is a whole other component to it.
I'm so glad you too got connected.
DeleteMaryEllen, I really hope you get some kangaroo time this visit!