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

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.

Gait Trainer

Nick in his gait trainer at school. I hope we can get one of these for home soon.

I have been such a horrible blogger recently. We are all doing well. Nick had his 3rd birthday on Nov. 8 and started school the next day. He is in a special needs preschool in our local school district. He is receiving PT, OT, and Speech once a week and a teacher for the deaf and hard of hearing sees him once a month. He seems to enjoy school and his attention span has already increased. He is still getting PT and Speech once a week each outside of school too.

Long Overdue Post

Before surgery

After surgery

Poor belly

Ready to go home.

It has been a few months since my last post. For the most part we have been following our routine of PT twice a week, OT once, AVT once and Feeding therapy once a week. We switched back to Nick's old AVT therapist. She had gone on maternity leave so we had to take him to the USC clinic. Well then she decided to start her own company and work a few days a week. So he is receiving his AVT, hearing therapy, at home again. I'm glad she came back because the USC clinic followed the school's schedule and had breaks between semesters so he would go about a month without therapy. Nick has really made great progress in PT the few months he has been seeing his new therapist. He is almost sitting unsupported. He can do it if he has his hands just right on the floor in front of him or a toy to hold on to. Then he gets excited or tries to play with something and he loses his balance. He is also doing better with eating. He is doing more chunky stage 3 baby foods and not gagging. He also ate a scrambled egg last week.

The big news with him is he had his gallbladder and port removed in September. The port removal was no problem the the gallbladder was more complicated than expected. The surgeon had to do an open surgery rather than laproscopically because of his previous stomach surgeries. There was a possibility of scar tissue and adhesions connecting the gallbladder to the liver and when the doctor got inside he found this was the case. Once the gallbladder was removed he did a dye study to make sure everything was connected and and flowing properly and he discovered a cyst. He couldn't physically see the cyst, only saw it from the dye study. He is pretty sure it is in the pancreas and said removing it will be very invasive. So right now the surgeon and the GI doctor are going to watch it. It can cause infection but isn't causing any problems right now so we aren't jumping into another surgery.

We are transitioning from early intervention to the school system. The state's EI program ends at age three so he will start a special needs preschool. We have a PT evaluation with the school this week and his general evaluation next week. The school district has a different preschool program at each school. We don't know where he will go until after his evaluations.

Playing Catch Up

My last real post was so long ago there is a lot to catch up on. Nick had an appointment with his GI doctor in early June and he wanted an ultrasound of his gallbadder to check on the stone. The ultrasound showed that the duct connecting the gallbladder to the intestines is dilated now. That probably indicated that he is passing small stones and they are getting stuck. If the duct gets fully blocked the gallbladder could rupture. So he referred us to the surgeons. The surgeon looked at the ultrasound and said he wants to talk to the GI doctor about it before he decides if he wants to operate now or wait. We haven't heard back from them yet. The surgeon also said he will remove his port either with the gallbladder or by itself if the doctors decide to continue to wait and watch the gallstones. His port hasn't been giving blood return for months so it is really useless right now.

He had a mapping appointment at MUSC for his cochlear implant. The levels are the same as they were before. That is normal. The level is increased a lot in the beginning but then usually stays the same. He didn't cooperate in the sound booth so we couldn't get a good indication of what he really hears. The audiologist can connect to the implant and test what his brain is responding to so that is how they have been doing his maps. He goes back in six months.

He was fitted for AFO's and now has braces for his ankles/feet to help him bear weight. He also got a hand brace to keep his thumb open on his bad hand, an arm brace to keep his bad arm straight, and a Spio. The Spio is similar to his Theratogs but a lot easier to put on.

He spent a few days in the hospital in the beginning of July. His appetite had been decreasing for about a week and then on the 4th he didn't want to eat anything all day. He woke up that night with the shunt malfunction screaming. We took him to the ER the next day. The CT and xrays all came back fine. We waited about eight hours for the neurosurgeon to see him. He said that the fourth ventricle shunt looked like it was too short now. He said he was going to reprogram the shunts to drain faster and maybe do surgery the next day. They admitted him and reprogrammed the shunt that night. They had him scheduled for surgery the next day but he seemed to feel better. The neurosurgery department did rounds in the early afternoon and said he was bumped from surgery because of traumas. He was finally able to eat after that. Then that night they made him NPO for surgery the next day again. I didn't sign the permission slip because I wanted to talk to his actual doctor beforehand because he was acting normal again. The doctor agreed he shouldn't go through with surgery at that time because Nick has improved. That was at 7am. They didn't discharge him until 7pm when neurosurgery did rounds. We were so aggravated. I called the office twice before we went to the ER to see if we could make an office appointment. They said no and that we had to go to the ER. He spent three days in the hospital for a shunt reprogram which takes two minutes and can be done in the office. So annoying!

We had his transition meeting with the school district last week. The preschool special services director, a special ed teacher, a speech therapist, and an audiologist were all at the meeting. They have a different preschool program at each school tailored to the different needs of the kids. We will go back closer to his birthday and he will be evaluated and placed in the program that best fits his needs. It seems like it is going to be really good for him.

Nick did this all on his own. We are so proud of him. Time to move down the mattress.

Hippotherapy

Nicholas got to try Hippotherapy on July 2. There is a horse farm nearby that works with his physical therapist to offer this therapy to her patients. Hippotherapy helps with muscle tone, posture, coordintation and other things. He rode twice and did alright. The first time he seemed to enjoy it, sat up very well and was very vocal. The second time he rode he complained. He took a nap as soon as we got home. They will offer this a few times a month unless the horse farm is booked with horse shows.

Pictures

Finally, An Update

A big boy bumbo that I made.

PT. Electrodes to stimulate his weak muscles.

Trying out a power chair. It is good for head and trunk control.

Using a stander at PT.

OT. He is on a skateboard type thing and has to use his arms to move around.

I have been so bad with the blog lately. I just don't time for anything anymore and loading pictures onto this takes forever so I procrastinate with it. Anyways, since the last time I updated Nicholas started with a new physical therapist. We are taking him to a clinic now. She is wonderful! She is very aggressive and has a lot of new ideas and tools we can use since she has everything in the clinic. She also does water therapy and hippotherapy. Hippotherapy is therapy on a horse. It is good for kids with CP because it can work the trunk muscles in a way that you can't do in regular therapy. She will ride with him when we do this. I'm very excited about both the water and hippotherapy. I've read about both of them and wanted to try them but didn't have a therapist that did them. She is seeing him twice a week and already sees an improvement in his trunk and head control. She had a different equipment company come out and look at his stander, which we've had for months but couldn't use because he didn't fit it yet. These guys had the stander fitted to him in no time. He is still a little small for it but it works. She also tapes his bad hand and it stays open! Three pieces of tape is all it takes. It is amazing. She also had him fitted for AFO's. They are ankle, foot, orthotics- braces for his legs.

We applied for extended therapy visits with Medicaid back in March. We still haven't gotten approval for it. His pediatrician's office said she has four patients that haven't been approved yet and Nicholas is one of them. She thinks it might be because we asked for speech twice a week. Both feeding therapy and AVT-his hearing therapy, are both considered speech. So we checked with insurance about therapy. Mark's company said he has 30 visits of PT, OT, and Speech each for the year. Mine covers 60 of each. Mark's company said no to OT with the diagnosis of developmentally delayed so we got a Cerebral Palsy diagnosis. They still said no. We missed a few weeks of OT because of this. Once we get the approval for extended Medicaid visits they will pay retroactively back to April 1st. It is really frustrating because he has five therapies a week. If we don't have Medicaid or insurance coverage that is about $500 out of pocket a week. We can't afford that. The Medicaid cuts are really hurting him right now.

Feeding therapy is going alright. He still isn't eating table food but we've started to mince up fruits and veggies and mix them in with his food. He is doing ok with it. Some days are better than others but it is progress. His therapist has seen improvement in his mouth muscles so that is good. He has a swallow study on Wednesday. They are looking for aspiration. We don't think he is aspirating but we need to have the study done so the therapist can renew him and see him for another 9 weeks.

He has a well visit at the pediatrician, a dentist appointment, a check up with the GI doctor, and a check up with the audiologist coming up.