Wednesday, June 25, 2008

Week 2

Max yesterday as Mommy with the shirt, socks and shoes to prove it.

Week 2 Nora
Week 2 Ray

Week 2 Kangaroo Care with Ray first time

I finally got around to emailing my bosses and our admin. and update. Here it is only slightly modified to remove any direct identifiable references.

Hi - Just thought I would send a quick email to let you know how things are going here. It has been an emotional roller coaster of a ride with a fair amount of stress added in, but the babes are starting to stabilize and my cousin came on Sunday which is helping from a logistics standpoint tremendously.

Ray, who was the instigator of the early delivery and whose water broke, has consistently done better in most areas and is more like the super star of 29 week preemies. He lost his IV line yesterday and is what the doctor called "a preemie growing to go home" and what the nurses call a "feeder and grower". He is still weighing slightly less than his sister and was at 2 lbs 14 oz today even though he has been eating more for longer. He currently gets 23 ml of breast milk every 3 hours. I've been able to hold him most days this last week for about 30 minutes. I was able to Kangaroo Cuddle him for a few minutes today, but he liked it so much and got so comfy and relaxed that he kept forgetting to breath so that didn't last long.

Nora is more like a normal 29 weeker who has been less stable and has struggled a bit more. Nothing too serious as far as I know, but just "more". For example, she had an artery in her heart that didn't close after birth and needed medication for that did close it; she wasn't digesting the breast milk consistently and was moved to a low lactose preemie formula for a week or two until her digestive track is more mature; she needs a bit more oxygen support; things like that. Nora was weighing 3 lbs 1 oz today. Both have been off the bili lights for jaundice about a week now which is nice because you can actually see their faces. I've only been able to hold Nora once for about 10 minutes a few days ago, not nearly long enough.

It sure is a counter intuitive way to parent because what you want to do isn't usually the best thing for them. Their main doctor hasn't mentioned a potential go home date, but another doc said that he thought they were doing well and would likely go home in 5 - 6 weeks which is about the earliest go home date I had in my mind. We will see how things progress. I would bet that Ray will be home before Nora which will add a whole other layer of complexity to the situation.

I talked to my disability claims manager about the leave situation last week and she approved my leave through August 5 with an August 6th return to work date. There is just no way I can return then if the babies are just home from the hospital. I asked and they denied my request to go back to work now and save the remaining 6 weeks until the babies are home. With my cousin here over the summer, that would be the more ideal situation, but they wouldn't budge on that. My cousin will not be able to stay past early August because she needs to get her oldest off to college, get her youngest started and adjusted to middle school, and get back to her own life. I explained the situation again and the claims manager on my case suggested pursuing a stress leave following the maternity leave, which apparently isn't really a maternity leave and doesn't account for child bonding, only recuperation from the c-section. So, I'm going to pursue the stress leave. If that doesn't get approved, I'm hoping something can be worked out because there is just no way I can bring these guys home and be back working full time especially if they come home on oxygen or apnea monitors when they are still going to need to eat every few hours. Personally, I think it is pretty crappy that I have to worry about this when I know full well that I am eligible for 26 weeks at full pay and they only want to approve 8 of it. It has only added to the stress level especially when I have barely even taken a sick day since I started with the company. If I have to, I'll look into taking the remaining FMLA time without pay, which would only give me another month off which isn't really enough then use my vacation time. I won't be happy about that and can't really afford to take the time off without pay after two hospital stays in two weeks for myself and 2 babies in the NICU for 2 months, but really feel like I'm being put between a rock and a hard place on this one at an already difficult time.

Anyway, this got longer than I planned. I've been meaning to check in since last week, but the schedule is pretty brutal and I barely have a spare minute so only the most basic of things are typically getting done, although it is a bit better now with my cousin and her 11 year old daughter here now. I'm including a few pictures from today. I'm taking pictures each week they are in the NICU to show progress and help me count down the time until they are home which still seems so far off. Plus, a picture of Max from yesterday wearing his mommy's shirt, socks, and shoes. Hope things are going well on the work front. While I'm not worried about the day to day work stuff at all, I do think of it more than one would think.

And, that's today. Two weeks down, countless more to go. I talked to a new mom (and her mom) of twins today with one still in room A, the more critical room, and the other next to Nora in room B who were born at 32 weeks after a month of hospital bed rest who are all wired up and on bili lights and probably feeling as overwhelmed as I was and as sad as I was about going home without her babes. The mom's mom came over and thanked me and said talking to me who has so recently BTDT helped. If so, I'm glad. The whole situation just sucks and so much more in the beginning.


calliope said...

how great that you were able to help another woman out. and the photo of you with Ray is so sweet.

Jess said...

Just wanted to de-lurk (not sure if I've posted before) and say that I am amazed and inspired by your strength...and I wish you and your beautiful kids all the best on this journey. I hope the babies get to come home safe and sound with you and Max very soon.