Four Years Post-Op

Wow, my little boy is four years old!  Unbelievable!  Just a quick post to say we went in for his annual chest x-ray and surgical post-op appointment and they say all looks good.  His lungs are growing as expected and they're happy with his scar and chest.  They will keep an eye on his spine to watch for signs of scoliosis but right now it looks completely normal and we have NO more checkups for two years!  Wow!  He's 43lbs which makes him big for his age but he's also quite tall for his age so we're looking at potentially well over 6 foot tall when he grows up (not that I always believe their growth will continue on the same curve forever).

A little bit of good CDH news, one of the studies we participate in had a really impressive year in terms of finding out a lot about what causes CDH and I thought I'd share.  http://www.cdhgenetics.com/results.cfm  They do a good job about writing in readable language.  It talks about the gene they found that caused CDH in several cases and are examining the correlation it has with severity.  As many are aware, CDH is especially difficult to figure out as most times no other family members have it, sometimes comes with other birth defects and is sometimes isolated and while it's fatal in 50% of cases in other cases like Jonah it's the only birth defect, is surgically corrected and does not cause any future problems.  They are also researching how NICU practices improve outcomes after the child is born.  In case you're finding this post quite a while after I've written it, it's under the Winter 2012 heading.

Here's a few photos of Jonah over the past year, he's loving being a big brother and it's amazing how much he's grown up over the last year.  He starts 4 year old kindergarten half day in September but right now is enjoying spending 2 days a week with his grandparents for the summer, they get into lots of mischief!

Jonah is a big brother!

Jonah is a big brother!!!  To beautiful, happy and HEALTHY baby Julia!  Who was born at the local hospital, came home 31 hours later, and is doing fantastic!  Jonah is sooo proud of being a big brother, he is enamored with her and loves to "help" with holding and feeding. 

And here's a professional photo taken by the talented Heather Beach Photography, the same lady who took Jonah's one year photos as well as our family photos last year. 

Three Year Appointment

Another whole year has passed and things continue to get better and better! No more developmental appointments since he rocked those for final time last summer, however, we still had our annual chest x-ray and surgical follow-up. X-ray went relatively smoothly. I couldn't stay in the room as I'm currently expecting (more on that later :) but Jonah was calm when I came back in and he was excited about getting stickers, so he was a bit dazed but relatively OK with the process. Surgeon said not only do the x-rays look great, but based on how things are going, no need to come in next year if we're feeling comfortable. We can still make the appointment and come if anything changes but otherwise he'll see us in two years!!! Yea!!!

As for Jonah's life, he started at an actual daycare center last spring (before this he had been in small in-homes) and I won't pretend we didn't have more illnesses. Seems like he caught every cold in the place and pink eye as well. However, no hospitalizations and no "scary" sicknesses, just the normal kid stuff with the exception of needing an inhaler a few times. We spoke with his pediatrician about it as he was on/off it for about 4 months this winter, seemingly when he would get sick it would just be hard to shake without a bit of help. We agreed to wean him off it in the spring and he hasn't needed it since April so about 5 months and counting now. We'll see how this upcoming winter goes, he hasn't been diagnosed with asthma but it's a possibility.

OK, on to the other exciting news, Jonah is going to be a big brother! I am due in two weeks and was being followed by high-risk perinatology with ultrasounds every month. Every one showed no evidence of anything amiss and as of 32 weeks, I've been given the all-clear to follow a normal pregnancy schedule from here forward.  I took progesterone shots weekly to help prevent preterm labor (Jonah was born at 34 weeks) however, my perinatologist thinks there's a good chance Jonah's prematurity was due to his birth defect and since I'm 38 weeks now, I would tend to agree.  I'm loving this "normal" pregnancy stuff, no complaints from me!

A few photos from this summer, Jonah is just an absolute joy and getting sooo big!!!

Two Year Appointment

In some ways I can't believe it's been two years and yet at the same time it feels literally a lifetime ago we were in the NICU. We're blessed beyond reason for how well Jonah has done and I feel guilty to admit that most days I don't even think about CDH, or his rough start, or anything other than enjoying him growing up faster and faster each day. He now loves to play on the playset out in the backyard, run after our friend's dog, and talk up a storm. We're even taking a few tentative steps towards planning for a sibling for Jonah.

But, since this is a CDH blog, I'd better get on with the update for that. For the first time I booked both our standing appointments for the same day. Remember Jonah goes to the surgical clinic once a year and the developmental clinic twice a year. This June, I set both up for a Friday and hoped he would stay in a good mood. Developmental first just in case things turned south.

The developmental appointment went well last time and I anticipated the same thing time around. I had even asked if we could be done after this appointment though I suspected we'd be asked to come again at 2.5 years and 3 years of age. But seeing as he was scoring at and above his age equivalent in everything and seeming to learn faster each day, it seemed a bit unnecessary. And, as it turns out, this was his graduation day, no more developmental appointments! They said he was as advanced as a three year old on most things (wow!), particularly comprehensive language. All the therapists were honestly just thrilled and so impressed! They even told me to have a discussion with his daycare center next week about how they'd need to keep him challenged so he doesn't get bored because he's so smart. Yeah, sure that would be popular and forever mark me as "that mom".

Then it was on to the surgical appointment. He got chest x-rays first thing and did fantastic! He sat in this little chair up high and got all strapped in. He was so calm and good they didn't need to do the head and arm straps which helped a lot. Then by the time he got upset it was nearly over. The surgeon looked at the x-rays and said everything looked good, took a quick peak at the scars and said they were A-OK and listened to his chest. It was over very fast and AJ even joked that it was pretty quick considering how big the bill would be. But of course we're delighted that things are going so well. They want to see us back again next year and after that we'll consider stretching out the surgical appointments a bit. There's no hard and fast rules, someone with CDH can reherniate at any time, but we'll stay optimistic but also remain cautious. Being more used to these appointments now, we know better than to ask if this or that will happen in the future, there's just no guarantees. We'll continue to monitor things and take it one day at a time. But, all in all, I just can't think of a single thing I'd want different. And what a wonderful blessing that is!

I may not update this blog anymore, I find I've run out of a whole lot of CDH things to specifically write about. If there's every anything more, I'll pop in...or maybe just to brag on my boy a bit more...but otherwise, enjoy a few more photos.

Those darn grandparents like to feed him way too much chocolate!

Mom prefers the natural sugar! Strawberry picking fun!

1.5 Year Checkup

Merry Belated Christmas!!! We had a fantastic Christmas here with lots of visiting with family and friends, a beautiful Christmas service and lots of very noisy toys...thanks grandparents! :)

Wow, amazing to think that another 6 months have passed. Jonah just completed his 1.5 year developmental follow up. We again had occupational, physical, and speech therapists there, along with a nurse and a neonatologist. All said Jonah is doing fantastic! We're definitely going back at the 2 year mark but then may be done or may be asked to go back at 2.5 and 3 years. I'm hoping we're done, I'm confident Jonah is hitting all his milestones somewhere between his adjusted and actual age and in some cases is far ahead of of his goal. Here are the results. Keep in mind we're shooting for between 18 months adjusted or almost 20 months actual.

Cognitive (play skills) = 22 months
Fine motor Skills = 25 months
Gross Motor Skills = 20 months
Receptive Language (understanding) = 21 months
Expressive Language (talking) = 19 months

It's funny how much things change in 6 months. After the 2.5 hour appointment we went out to the Cheesecake Factory for lunch just the three of us then visited dad's work on the way back to our house. We wouldn't have dreamed of doing this the first time we went at 6 months or probably not even at a year due to napping schedules and germs. Things are so much fun!

I forgot last time to write about his surgical follow-up, which we'll do annually for a while. He had a chest x-ray and the surgeon said things look good. The fact that he made it through is first winter without any breathing treatments or rehospitalization means we're probably in a good spot as far as his lung function and we just have to watch to make sure he doesn't reherniat. We scheduled the next one for the same day as the developmental assessment, so that will be a long day but then we're potentially done for a whole year, yea!

As for other doctors, Jonah's regular pediatrician is delighted with how he's doing and we'll just be seeing him for regular well visits. He actually said at his 18 month checkup that you'd just never know he was a preemie. He weighs 28lbs now and weighs more than 70% of babies his age and is taller than 90% of them! Jonah's pulmonologist says no need for any more appointments unless I want one and he recommended no RSV shots this winter. Wow, who would have thought we'd be so blessed!

Just a few more photos, he's just a wonderfully happy and healthy little boy.

First time in the snow, have to love winter!

Last year might have been his "first" Christmas, but this one was a ton more fun with Jonah opening gifts and actually getting excited about the toys!

One year developmental checkup

We had Jonah's 1 year developmental appointment yesterday at Children's Hospital. He was due June 2nd so they schedule it close to that rather than his actual birthday in April. They again measured him on the Bayley scoring, asking him to perform certain tasks (in a fun way) and seeing what he could do. He enjoyed it overall as the physical and occupational therapists bring toys with them :) Speech just mostly observes and asks us questions. It took only 2 hours this time (as opposed to 3 hours for the first apt).

His measurements are:
Gross Motor: 12 months
Fine Motor: 13 months
Receptive Language (understanding): 14 months

Expressive Language (talking): 13 months

Cognitive (Play skills): 15 months

Excellent considering we were shooting for 12 months! He's actually just under 14 months based on his real birthday so we're happy he's at that level for some of the skills. We'll go back in December for another round of testing and then I think only one more when he's 2 years old.

While we were there we also got everyone's blood drawn for two research studies on CDH. One is called DHREAMS http://www.cdhgenetics.com/ and the other is called CDH Study at Children's Hospital in Boston. Both will be studying our DNA to help them identify the cause of CDH and potentially find a better way of treating it in the future. A bit of a pain and it took over an hour to get it sorted out but in the end we did walk out with the vials of blood that I'll send FedEx to the researchers.

Jonah is so much fun! He started walking about a month ago and now toddles around everywhere. We've moved our childproofing up to the three foot tall level (and learned to be on the lookout at anyone else's house :) He babbles all the time and loves to play catch and be tossed around by dad. Mom is good for cuddles when he's not feeling well, which he's not right now. He has a cold (or something) and coughs constantly. We've been assured its nothing to worry about, it just isn't any fun for him, especially since he's also cutting three teeth, two of which are molars.

On another note, my husband and I are celebrating our 5 year anniversary today. Looking forward to another 75 years or so! :)

Here are just a few recent photos, we sure are loving the summer months! Jonah isn't too sure about the grass some days but he loves being outside! Other days, he eats everything in site, grass, dandalions, flowers, bark and more :)

Our water table is another big hit, and we can hide in the shade during the hot and sunny part of the day.

And yea, no more baby food for Jonah! He loves eating big boy food, from spaghetti to just about anything else (except vegetables, which he's boycotting right now). We're not quite done with bottles yet but he does like a sippy cup of water.

Birthday Boy!

Jonah is one year old! Who would have thought a year ago that we would be able to celebrate without any tubes, wires, or worries! (well, aside from the fact that grandpa is going to feed him chocolate non-stop). He's into everything now, crawling lightning fast and cruising around furniture or using a push toy to get around the house walking too.

We went in to visit a pulmonologist at Children's back in February since our new insurance company denied RSV shots after the first of the year. We got all our documentation laid out and the insurance company decided he was elligible, score one for our team! I highly recommend appealing a decision if you don't believe it's the right call, we've only had to appeal two things but both we eventually won with persistance and documentation. Of course, we missed one month of the shots while I was arguing with the insurance company, but luckily Jonah didn't get sick. We've been really lucky this winter, two colds and an ear infection and that was it. Praise God!

Jonah had his one year checkup and since RSV season seems to be over he had a completely normal little boy schedule of shots. Four shots along with all the regular measurements, etc. He's gaining nicely on the growth chart, up to 42% for weight and 73% for length, and that's based on his actual age, his adjusted age will look even better!

We'll go in for another developmental assessment at Children's in June to measure his one year skills by occupational, physical and speech therapy. We'll also get another surgical follow up to see how his diaphram and lungs look. Wish us luck! Until then, I'll share some of Jonah's one year photos taken by the very talented Heather Beach Photography.

Can you see his abdominal scar? Yeah, barely!

6 Month Checkup says he's good at "everything"

Last Friday Jonah went for his 6 month developmental assessment at Children's Hospital. They schedule based on when he should have been born, he's actually 7.5 months old now (can you believe it?!?). He had basic height/weight/head circumfrence checks by the nurse and a physical by the doctor. But, new this time, he met with Physical Therapy, Occupational Therapy, and Speech Therapy. He was assessed on the Bayley score, where they try to have him do basic skills and give points based on that, ultimately giving us an "age equivalent". It was a looong appointment at nearly 3 hours long (have you ever tried to keep a 7 month old happy/awake/not hungry for 3 hours? not easy!). But, in the end, they gave us Jonah's very first report card, pronouncing him good at "everything!!". His motor skills are at 7 months for gross muscles and 8 months for fine muscles, great since we were aiming for 6 months! His mental scale is at 7 months and his expressive (talking) score is 7 months as well.

The only place he ended up being below his adjusted age was receptive (understanding) at 5 months 10 days. I wasn't aware but many babies "recognize" several words by this point. The speech therapist tried to yell "no" at Jonah and he didn't respond. Not surprising since I don't tell him no, until he learns to crawl, what can he really do that's naughty? She called his name and he responded, but only when there wasn't other distractions like a toy. She tried "up" and "bye"...no response. So, we'll start working on that, but she said she wasn't really concerned since he did so well everywhere else, she knows he'll catch up and doesn't recommend any additional help or therapy. They told us to make an appointment for when he's one year old and just keep doing what we're doing.

Other than that, we're just enjoying life. I'm off work this week of Christmas but will be back working full time in January. My mother-in-law is super-sweet and continued to watch Jonah 2x of week all the way through last week but will be taking the rest of the winter off, its a long cold drive out here each day and the roads are not always the best.

Jonah continues to be an absolutely amazing baby. I absolutely love this age! I started saying that about three months ago, he is alert and likes to play peek-a-boo, he sits up and giggles uncontrolably when I tickle him. He sleeps through the night :) He's amazing...now if only he napped for longer than a half hour at a time....gotta run! Here's a photo I snapped the day after our six month developmental appointment, he's ready for Christmas!

Normal Life

It's so wonderful being a normal family and doing all of the normal things families do!

I go back to work this week, which I embrace for its utter normal-ness and the fact that Jonah is well enough for us to feel comfortable with him away from us, but of course have mixed emotions as any mom will. I planned to return to work on a Wednesday so that my first week back would be short. My mom and my mother-in-law will watch Jonah for the next month and he'll start at daycare in September. He'll only go twice a week and I'll stay home one day a week with my mother-in-law taking the other two days. We'll do that for a while and see how it goes, probably transitioning to full 5-day weeks at daycare sometime near the end of the year.

We also went and took Jonah's 3 month professional photographs. We just went to JCPenney's and on a weekday so there would be less kids around. So far I haven't had to worry about too much sickness but I know it will be a paranoid winter for me. They've told me its critical that Jonah not get sick in the first six months and it would be better if he didn't have any sickness that touched his lungs in the first year. It's promising to be a crazy flu season with H1N1 going around but we will try our hardest!

Here are a few photos of us enjoying the last bit of summer.

Daddy and Jonah out on the hammock on the deck.

Jonah in shorts and a T-Shirt, enjoying the last of the summer warmth.

Daddy and Jonah chilling along the edge of Lake Geneva where we went to take our first destination stroller walk.

We are so blessed!

Well, that's it. Or rather, I hope that's it. Jonah will still go in annually for surgical follow-up, get chest x-rays and make sure that diaphragm of his is behaving. We'll still need to go every few months for NICU followups for his prematurity. And we'll need to watch him carefully if he ever shows signs of malrotated bowels (vomiting bile) or difficulty breathing. We need to protect his lungs as much as possible while the left one grows and matures, shielding him from sickness during this awful flu season and taking him for RSV shots this first winter. We have increased risk for asthma and a few other long term things that we'll deal with in the future. But, by and large, we're done with the really hard part (praying its so, fingers crossed, hoping, knock on wood, anything else I can do)!

Thank you, thank you, THANK YOU to all of the people who have been praying for him! Certainly don't stop, we'll always need your prayers! Thank you to our family and friends for supporting us and loving us and thank you to our church family for helping and supporting us as well!

Thank you, thank you, THANK YOU to the wonderful nurses and doctors at Children's Hospital of Wisconsin! Thank God that we were in the right place at the right time to get the best care for Jonah!

Thank you, thank you, THANK YOU to the people on the CHERUB boards for their support. I wasn't around much as I didn't join until we were already in the hospital and I was obsessed with being with Jonah nearly every possible minute, but when I did have a question, you guys were right there. Fantastic website for information about CDH!

And last but not least, thank you, thank you, THANK YOU to Giles and Janel, another family who's son was born with CDH just two weeks after Jonah in the same hospital, who we were able to talk with and spend time together, and who showed us what unbelievable faith and peace we should have as Christians. You guys are amazing and we hope Elijiah comes home really soon!

Surgical Follow-Up

Today was Jonah's surgical follow-up. We'll have these once a year to make sure his diaphragm is intact and everything looks good. My mom went with me and I'm glad of it. My husband is still trying to build up vacation time but it was helpful to have another set of hands (and ears).

We arrived and went right to radiology to get a chest x-ray done. It was pretty awful watching them sandbag Jonah to the table, twisting his arms above his head and use masking tape to make sure he held still. He cried! I tried to soothe him from behind the table 4 foot away but the radiologist techs told me to let him scream...it made for a better picture. Cruel! But they were mercifully quick. Not looking forward to when Jonah gets older, how to you convince a 2 year old to stay there?

On to the appointment. We met with Dr. Lal as Dr. Aiken was out of the office. He looked at the x-ray and told us everything appeared good but had no answers for the questions I had. He finally just let me look at the x-ray myself (not that I knew what I was looking at) and said there really wasn't any way to predict how Jonah would do long-term but that the indications looked good. Wait and see...that's all we can do.

1st Week Home - It feels good!

I love being at home with my baby boy! We've had a very busy week, it's so much different being the only one home with him. I don't want to leave him, but I still have to do some things, not much, everything that can wait will, but some things, like bathroom breaks and pumping, have to happen sometime!

But it's wonderful! We had our first two visits from the visiting nurse and we also went to see Jonah's regular pediatrician. All agree that Jonah's doing wonderfully! The pediatrician is completely supportive of me trying Jonah on straight breastmilk (rather than fortifying it) as long as he continues to gain weight and although the visiting nurse doesn't particularly like it, I get to be in charge now :) Jonah starts off with slow but steady weight gain and quickly ramps it up to where we only have an occassional raised eye from the nurse. We combined my first visit with the pediatrician with Jonah's 2 month immunizations and well baby visit so we don't have to go back for 2 months. Other than our visiting nurse, that means no doctor's for two whole weeks!

The first two nights we're home we decide to wake up Jonah at the four hour mark in the middle of the night if he doesn't wake up at his regular 3 hour mark for feeding. Then we are told in no uncertain terms by experienced parents that we're crazy! Granted, they didn't have the situation we had, but we decide to see. Jonah sleeps 6 hours at a crack and still gains weight, yea! He doesn't surrender to sleep at night very easily, as AJ will attest, but once he's out we usually only have to get up once with him to eat.

AJ attends a close friend's wedding that he RSVP'd to long ago. I had RSVP'd no since I was supposed to have a two week old, but that's OK, it's too soon anyways. My mom comes to visit

2nd Day Home

My husband had to go off to work already today, no extra vacation time to spare since he took off when Jonah was born and again for the second surgery. Sure was glad when he came back home from work. This staying at home stuff is wonderful but intimidating too! Jonah got his first bath at home today too, fun fun! It's also our four year wedding anniversary today!

The Visiting Nurse came today for the first time too. She comes to the house and does weight checks, listens to Jonah's breathing and does an overall assessment like taking his temperature and measuring his length and head circumfrence. Her first visit was longer than most as she was taking a history and getting familiar with Jonah. She'll be coming twice a week for a while then once a week after that. To tell the truth though, I was a bit disappointed by the experience. I expected her to come with a POx (Pulse Oximeter) to check his oxygen saturations since that was my main worry while in the NICU. Instead she asked me what she should be looking for and it seemed focused mostly on his weight. He lost a little weight but seeing as scales can measure differently, I wasn't too concerned, I was glad she wasn't either. She didn't like the fact that I wanted to get off the fortified breastmilk as soon as possible. It made Jonah irritable as he didn't digest it well and I was convinced he was gaining weight fine before they put him on it but didn't want to argue in the NICU for fear of it taking longer for us to get home. Now that we were home, I wanted off the stuff, fast! I told her I'd talk to my pediatrician about it Monday but that I'd prefer to check his weight gain on that. Overall I appreciated her coming, it made me feel good that someone was looking at him regularly, but I think I could have done most of it myself if we bought a baby scale.

On another note, Jonah looks soooo tiny in his big boy crib! I thought moving from the NICU warmer to a crib was a big change but holy smokes he looks tiny in his regular crib. It feels so weird to put him in it, he only takes up 1% of the bed! I should have gotten a picture but of course, when the baby is sleeping, don't do anything to jeopordize that!

Day 53 - We're HOME!

My email to all friends and family, which I didn't send out till after we got home just so I wouldn't jinx us
~~~~~~~~~~~~~
Soooo happy to send this email, we're home!!! Jonah was given the A-OK this morning to come home. No monitors, no tubes, no wires, no oxygen, just Jonah, yea! He just had his first diaper change and bottle at home and now he's upstairs sleeping in his own crib.

Thank you to everyone for all the prayers and kind thoughts! Keep them coming as mom and dad spend their first full night with the little one tonight and mom tries to relax knowing we have no monitors around to beep at us, we might be hearing them in our sleep anyways :)

Cheryl
~~~~~~~~~~~~~
We had quite the day, my husband took off of work and checked us out of the Ronald McDonald House once we were SURE we were going home that morning. I stuck around doing the discharge stuff and filling Jonah's reflux medication prescription (which we'll give every morning) and his vitamin supplement (also every morning). We brought a huge cooler to lug all the extra breastmilk home in and packed up our stuff and made a bee-line for the exit before anyone could tell us otherwise. Just kidding of course, it actually took most of the day but we were OK with that as long as we got out of Milwaukee before rush hour traffic started. We had two cars there since my husband had been driving to work daily and I went to the hospital so we followed each other home. I'd like to say we basked in being home but with my husband only off work one day we more ran around getting everything accomplished because starting tomorrow I'm all on my own, ahhh!


Making our getaway in the parking structure at Children's Hospital.


Jonah slept the whole way home.


And we couldn't help putting him in his swing at home, he hadn't ever been in one and loved it immediately, so cozy he slept in there for most of his naps that first month home.

Day 52 - Home tomorrow!

Today at rounds I listened very carefully, I knew we were probably headed home soon but will tomorrow be the day? And...they say tomorrow! Yea!!!!!!!!! He's gaining weight well on the 24 calorie breastmilk and hasn't had a serious (non-self-resolving) desat in a bit.

I decide to feed Jonah his medication, the nurses normally do it during their assessments in the morning but didn't today for some reason so they just asked me to when I got a chance. Well, I'm going to need to do it at home, so why not. They take a small syringe and just squirt it in the corner of his mouth a little bit at a time. So I try it, and manage to choke Jonah. Because he's choking and not breathing normally he desats and goes Bradys. Bradycardia is when the heart beats slower than normal and is very common in preemies but Jonah's never had a problem with that, his heart monitor was always one I didn't have to worry about. So three nurses rush in and ask what's happened. I tell them and two of them want to wait for him to self-correct but the other starts getting the oxygen ready. Noooooooo! I know if we go to oxygen we will definitely not be going home tomorrow. Just give him a chance to catch his breath like any other baby! While she's getting the oxygen ready the other two are looking at Jonah in my arms and my favorite 7th floor nurse blows in his face a bit and rubs his chest. He stops Brady'ing and his saturation levels start to pop back up. Ahhhh, no oxygen needed! Now I just have to find out if that was enough to make it so we can't go home. I'm so stupid for choking him, ahhh!

But no, when I speak with the medical student who's coordinating our release :) she says that's fine, he self corrected and didn't need oxygen so we should still be OK to leave tomorrow. She is the one that explains it to the doctor and although the doctor seems a bit more concerned she says to explain the situation in the chart that he was in my arms and only mild stimulation was used. He says normally this is a show stopper but given how it happened it should be OK. Whew!

They tell me that they're sending us home with no monitors or oxygen. I knew there wouldn't be oxygen but I am surprised there won't be any monitors. I'm happy and scared at the same time. So nice to be "tube free" and like a normal kid, but so odd that one day you have to be monitored all the time and the next you don't need them at all. I ask about signs and symptoms I should watch for and the medical student looks at me quizically, "you know what to look for" she says, color of the baby (pink not blue), no retractions (where he breathes hard and sucks in his ribs), temperment. OK, I said, we're ready. She sets up our follow-up appointments, we're to see surgery in a month, the NICU follow-up for developmental delays in 2 months and Jonah's regular pediatrician in a few days. She would prefer I went the day after we get out but Dr. Boettcher says that Monday is fine (we're being released Thursday). We also cover the fact that we'll have an at-home nurse visit a few times a week for a while. OK, OK, OK, as long as we get to go home!

So I call my husband and tell him to take tomorrow off of work, we're headed home! Finally!!!

Day 51 - Another "crazy mom" moment

OK, I've now done it, I've decided there's a nurse I don't want assigned to my son. Its so hard, because I don't want to be that mom. But she's had Jonah twice since he's been up on the 7th floor this second time and both times she's felt the need to put him on oxygen, even though no one else does...ever. So what's the deal? She admits she's not used to working with NICU babies, so is it just that she gets worried about the alarming? I've been told that if Jonah's saturation levels drop below 90% but then he "self corrects" (meaning they come back up without the nurses needing to intervene) then that is fine, many "regular" full term babies do that we just don't know it because they're not hooked up to a freaking monitor 24 hours a day. So this nurse just feels that he wasn't self-correcting fast enough so it was better to put him on oxygen so we didn't tire him out. If we are ever going to get home he's got to prove he can do it on his own! I won't have a monitor at home so I need to know that he'll be OK! Grrrr. I really don't want to ask that she be assigned elsewhere so I'm just going to see who's assigned overnight going forward and hope it's not her. She's not a regular anyways.

Other than that everything is good. He gained weight 2 out of 3 days over the weekend. They are using the "H word" (home) more and more often. Please please please let us go home soon!

Day 49 - The feeding tube comes out

Every day during rounds they talk about how much of Jonah's food he took PO (by mouth) the day before. I know that's our main hurdle since the oxygen saturation has been going so well, so it's become the first thing I ask when I come in in the morning (when I manage to flag down a nurse). Today they announced that yesterday he took 82% of his feedings by mouth so they decided to take out his feeding tube and see how it goes. They'll now feed him whenever he gets hungry and just keep a shift minimum. I have taken to bribing Jonah, "please eat, momma needs out of this hospital!".

I also asked to speak with the doctor. I know they don't like to give "going home" estimates as it's heartbreaking when the babies don't make it home by then, but I need to have a serious conversation with her. I've been out on maternity leave for almost 7 weeks now and I only get 12, if it's going to take too much longer I might need to consider going back now so I have some time left when Jonah does come home. She says that she really thinks Jonah will be coming home next week. I really almost cried right then and there. I know it's not for sure yet, but I want it to be true so badly!

Day 48 -

So a few days ago we went to an ad-hoc feeding schedule. This was great news to me, I knew from talking to one of the doctor's that this is one of the last steps, if they can gain weight on this feeding schedule, they are deemed ready to go home (of course, this is feeding only, we've also got oxygen to deal with).

So, the doctor explained it to me and it seemed pretty straight-forward. They would go to feeding Jonah whenever he was hungry and see if he gained weight. Simple, right? As it turns out, no. Every nurse interpretted this differently, and one actually had the doctor clarify her orders and then still interpretted it differently than me. Notice I didn't say "wrong", I said "different than me". See, I'm trying to be reasonable. But I'm having to struggle to be reasonable as the rules seem to change every 8-12 hour shift. Different ideas:

1. Feed him by mouth and whatever he doesn't take give him in the tube (wait, how is this different than what we've been doing?).
2. Feed him by mouth and if he doesn't eat X amount in an 8 hour shift, feed it to him via tube (better, but 8 hours could only be two feedings, so one bad feeding and we're sunk).
3. Feed him by mouth and if he doesn't eat X amount in an TWELVE hour shift, feed it to him via tube (now we're getting to what I thought I understood from the doctor).
4. Then there's the misunderstanding of whether they should offer food every 3 hours, or every time he seems hungry, or just let him sleep. Since I'm not there at night, who he has for a night nurse makes how much he took in volume really vary.

The first day we went to this, we were still on regular breastmilk. After a day, they upped it to 22 kcalorie fortified breastmilk (take my milk and add some extra powdered formula to it to make it more calories in the same volume). He gained on that, but they wanted to take it to 24 calorie the next day. He definitely had a harder time digesting this and I didn't like it, but I differed to the doctors, plus I knew he only had to gain weight for a few days and we could go home, where it would be much easier to bring him back down to regular breastmilk. In the meantime, I could still breastfeed once a day, but since every last mL counted and he took less when he nursed, I gave it up in hopes of moving us home a bit sooner.

Day 45 - Up to the 7th floor again

Up we go to the 7th floor again. Jonah was moved in the middle of the night since an emergency came in and they needed his bed. Since the last few days have been relatively quiet and he's been doing well, I'm (relatively) OK with it. I honestly am a rational person that knows there are sicker babies in the NICU, however, I'm also a mother who's primary concern is getting the best care for MY baby.

Anyways, we're in, quite honestly, the tiniest/darkest room on the 7th floor. It has a window that looks out on a bend of brick wall that is only 2 feet away, I guess when they build the addition they put another wing right next to it. I joke that it's probably because now I'm that trouble-making mom. The nurses are nice and we're going to pick up one of our favorite regulars again, yea! He was 8lbs 7oz two nights ago and we're in the home stretch on eating, just a little more Jonah and we can go home!

Day 44 - Nursing Again

So we're back to nursing once a day, tonight was our first try and it didn't go well. I know it's early yet, he was only supposed to be born this week and he's been through a lot since then, so we'll be patient. In fact, if it doesn't work we can bottle feed too, I just want out of here!!!