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
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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
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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!!!

Day 41 - Another low on the NICU Roller-coaster

Well, it seems that the moment you get excited and think you're almost done...something has to bring you back down. They've cut Jonah's feeding increases in half as they don't think he's tolerating it well. And they're concerned about his respiration rate. They even did another chest x-ray as this is eerily reminiscent to when we found out he had reherniated. But it came back clean. Now they're giving me completely different messages about our progress and it's such a different story than yesterday. I wrote a friend today and said that any time I email out good news it ends up jinxing us, so I just give up! She took that to mean I was really giving up, which of course wasn't the case, but I was pretty sad and frustrated today.

Day 40 - Finally, some food in this joint!

Jonah gets to eat his first real meal after surgery today. We're starting slow but will ramp up the volume depending on how he takes it. We started with about a tablespoon, went up every 6 hours and were at an ounce by the second day and it'll take several days to make it up to the amount he should be taking (and therefore get rid of the IV fluid for nutrition, TPN).

More pressure to move to the 7th floor but so far we're still here! They've started talking about possibly going home next week, could it be?!?

Day 39 - Jonah's Due Date

Holy smokes Jonah, you were supposed to be born today! Can you believe we've already been here over a month and so much has happened? Wow!

No new news, just working on climbing up the next hill in this NICU ride. Sure wish we could feed him...

Day 38 - PICC Line goes in

The dreaded PICC line, that I've been fighting, gets put in today. I'm concerned that it'll introduce another possible site for infection, on top of the risks of the line itself. Plus, I just hate seeing more lines going in, we're supposed to be taking them out! But without the oxygen, I'm in such a good mood that it's hard to really be upset since I know this is only temporary.

I guess there were very few sites left on Jonah to poke though, so I know it's best they do this before they run out of sites, that's a dangerous situation. And yes, I know that more complete TPN is a good thing, but we didn't even need this last time, and isn't he supposed to be so much stronger this time around as a non-newborn? They had to have two different people try it and they ended up finally getting it on the last try, but it was in his head! Here's a photo from a few days later, I usually tried to get the angle just right to not show the PICC line, so I had to hunt for one that actually showed it well.