Tuesday, April 17, 2012

Take Home and NICU- Two Different Worlds

Take Home and NICU – Two Different Worlds

I'm borrowing this from another preemie blog. www.coxquads.blogspot.com She wrote it much better than I ever could have.

Bringing a new baby into this world is often a long awaited, very exciting time. Most women, from my personal observation at least, are sick of being pregnant towards the end and the last few weeks/days seem like an eternity as they anxiously wait the big “D-day”. The house has been ready, family and friends are on call, and a quiet nursery sits waiting to welcome a new sweet baby into their home. Finally, the day comes. Their water breaks or in many cases nowadays it’s their day and specific time to finally be induced. After a long labor and delivery or a quick cesarean, their sweet baby is here. Visitors come, flowers and endless gifts are delivered and within a few days mom and baby leave for home to start their new life together.
That’s what you think of when you think of the birth of a new baby, right? Somewhere near those lines anyway. For so many families the above scenario is a dream that fell short. Their deliveries were unplanned, unexpected and down right terrifying. One second everything is fine and the next they find themselves being told delivery is necessary for whatever reason regardless of how far along they are in their pregnancy. The complete opposite of something you would look forward to. Ready or not, here he/she comes and prematurity is suddenly on your doorstep.

Everyday thousands of babies are born too early. There are mothers who deliver and don’t hear a cry from their baby due to severely underdeveloped lungs. Rather than the new infant being placed in mom’s arms or on her chest after delivery, many are whisked away by a team of doctors while having breathing machines pushed down their throats in order to keep them alive before the mother even lays eyes on her baby. Their umbilical cords are not cut by their daddies but immediately taken out and replaced with arterial lines. There are new moms and dads who go days/weeks/months without getting to hold their new baby for the first time. Even worse, some never get to at all.

The parents of premature babies don’t get to experience a lot of what the parents of “take home babies” get to experience. While most go home and get to know and bond this new little life in the privacy of their own home, those parents of NICU babies long for the day they finally get one on one time with theirs. Many spend days/weeks/months asking nurses for permission to hold or even touch their baby. They must learn to know their baby and bond with their baby through the windows of incubators, over machines, wires and tubes. Many NICU parents wait weeks just to see their baby’s sweet face, bare, with no feeding or breathing tubes…which often is a sight of bruised, red and irritated skin due to the tape and equipment used on their delicate skin 24 hours a day 7 days a week.

Parents of preemies walk away from the hospital hundreds of times without their babies. The long drive to the NICU becomes a part of a daily routine. Eat, sleep, work, NICU. Eat, sleep, work, NICU. Forget to eat, sleep, work, NICU. The cycle continues day after day after day. A preemie parent’s medical vocabulary increases just as fast as their baby came into this world. You quickly learn more abbreviations than the average teenager on any social network… TPN, IVH, BPD, PDA, and ROP are just a few that are now in your everyday lingo. Parents of full term babies are at home celebrating milestones like the first smile, rolling over, and sleeping through the night. In the NICU we celebrate the fact that our baby urinated, that they made it almost a whole 3 hours with their vent settings lowered and that they were able to go from one tubed feeding to the next with little residual.

Mark and I are some of the lucky ones who left the NICU with all of our baby. Some parents are not so fortunate. One thing is the same for all parents who spent any significant amount of time in the NICU and that is that it doesn’t end once you and baby come home. I think that’s the biggest misconception about prematurity, actually. Many seem to believe that once a premature baby is discharged, they are a “normal” healthy kid ready to get on with their life. The NICU was a time in the past, something we parents who were there should get over, forget about and move on. It just doesn’t work that way. Many of us see the long term effects that prematurity has on our children daily. I see multiple scars on their bodies each time I change or bathe my babies that remind me of that long NICU journey we were once on. Although I am confident my precious baby will grow up to be happy, healthy, adult, I expect that he will have struggles to face specifically linked to being born nearly 4 months early.

I’ve written this post to hopefully give everyone a (small) glimpse into the life of someone who delivered their baby(ies) early. Together we can help make a difference. Each dollar donated to the March of Dimes will help babies have a healthier start and a better chance at beating the odds stacked against them if they are born prematurely. People marched and supported the March for Babies walk long before mine was born which is part of the reason he is here today. I encourage you to give, even if just a few bucks, in honor of the children in your life whether born healthy or premature. This is not about meeting our team goal and has nothing to do with “how much money can Team Nicholas raise”. It’s about every dollar going to support these babies and helping mothers carry to term in their pregnancies. It’s about every person across the US who walks in the March for Babies walk each year to help raise awareness. It’s about making a difference and giving babies a chance to fight who are unable to fight for themselves.

To donate click on the link on the upper right of the blog or go to www.marchforbabies.org/teamnicholas

Wednesday, February 29, 2012

Wow, an Update!

Using lefty to hold his AFO.

Sitting up in a squash.

Car from Aunt Heather and Uncle John.

EdVenture Children's Museum field trip.

I have a love/hate relationship with this blog. I love it because it is a record of Nick's life but I hate it because it never works right. I can either write and not post pictures or post pictures but not load what I wrote. Anyway, I feel like we have been busy, busy, busy. Nick is enjoying school and his teacher and therapists have all seen improvement in him physically and mentally. He is paying attention for longer periods of time and seems to really enjoy his time at school. He is also a little stud and likes to hold hands with the girls in class. Unfortunately he has been sick once a month since he started. When he is sick I usually get sick too. We have both had fevers and I can't even remember the last time I was sick with a fever. He currently has an ear infection and a sinus infection. He has been out of school all week but is on the mend.

He has had his normal check ups with his specialists. GI and surgery are still watching the cyst that was found during his gallbladder removal. He was actually supposed to have an MRCP which is an MRI of the pancreas but we had to cancel it because of his cochlear implant. They didn't' have that in his records so I called after I looked up what an MRCP is and we found out he can't have an MRI. They could do it if they turn the magnet way down in the MRI machine and wrap his head in padding but it could still cause burns where his implant is. We aren't going to do that so plan B is to do and ERCP which is an upper GI with x-rays. His GI doctor is on vacation so when he is back the two doctors will discuss if this test will give the results they need to see the cyst and form a plan of action with it.

He had appointments with his neurosurgeon and eye doctor. Both of those appointments were fine. His last head CT looked good and his eyes have not changed. He still won't keep his glasses on but his eyes aren't really bad so we aren't forcing them on him. He is still going to the dentist once a month. He has a wonderful dentist who is doing his cleanings pro bono since insurance will only pay every six months. His teeth look so much better than when we started going to the dentist and they were almost black from medications. We also went to a new doctor who is a developmental pediatrician and specializes in CP. It wasn't anything special but it's good to be a patient there since he is so hard to get an appointment with. Nick goes back in six months. He still receives PT and speech outside of school. He has been really bad with his cochlear implant but has been better the past month or so. He definitely isn't at the 1.5 year post implantation stage like he should be. He is more like a 6-8 month old with communication. He has learned that he is supposed to wear it and will keep it on if someone is standing right next to him. As soon as we turn away he takes it off though.