3/10 Update

It was another light day for our Madeline. She's still intubated but they are steadily decreasing her treatments. She's taking to her feedings well and they've increased it up to a whopping 1.5 ml per hour. Our hope is that as the feedings increase, we'll be able to get some weight on her and fingers crossed, maybe she'll cross over to 1 kilogram today.

Because she's been so stable over the past few days, Kristen got to kangaroo with her again. Both of them love it so much it darn near takes a crowbar to separate them when it's time to go. They snuggle up together and can sit there for hours chilling out and for Madeline, snoozin'.

Madeline was super active yesterday kicking up a storm. Her legs and arms were flying all over the place and it was hilarious! Sometimes it looks like she has a purpose for all of the movement and other times she looks like she just wants to go crazy with it. Either way, it tickles us every time.

Status quo days are great and here's hoping today goes as well as the weekend.

3/9 Update

Madeline had another good day yesterday. All of her test results showed improvement and we're getting closer to her being extubated and no more tubing down her throat. She's definitely a fighter and whatever it is that caused this hiccup appears to have run its course thankfully. She started feeding again last night so I'm hoping we can get to growing uninterrupted this time.

When I stopped in last night, the nurses had changed her position and for the first time, she was laying on her belly which she loves. All of her squirming around stopped and she finally looked like she was getting some good rest.

Madeline on her belly.

I'd been avoiding it for awhile now but the nurse got me to man up yesterday and I changed her diaper for the first time (which means I have about 3 to go before I'll top my Dad's final diaper changing total). I'm happy to say I didn't screw it up and the nurse approved my work so test passed! 

Hopefully we'll be able to hold her again today and get to do some kangaroo care. 

3/8 Update

And back up we go. Miraculously, Madeline fully recovered yesterday. After all of those tests, the doctors determined that she didn't have a pneumo or an infection. The doctors basically told us that the root cause appears to be that she's a premature baby and sometimes her body just isn't functioning correctly yet. They've treated her with antibiotics and they are treating her low pH with bicarbonate. She's still intubated but today should be the day to get the tube back out again. She was peaceful yesterday and we're getting very anxious to get back to being able to hold her. All of our prayers continue to be answered!

Down the Roller Coaster

Down the roller coaster we go as Madeline had a pretty awful day yesterday. We got a call from the doctor in the morning (we're getting conditioned to seriously dread her phone ringing in case it's the NICU) saying that she had to be intubated again. The cause was that her lungs had desaturated multiple times and she wasn't breathing correctly causing the re-intubation. The doctors are thinking it could be either another pneumothorax or a respiratory infection. Either way, it's not good news and we're praying for another pneumo. Infection is scarier to us even if she's been on antibiotics the whole time and is getting even more now. Putting the icing on this terrible cake for all three of us was the battery of tests she had to go through in the morning. Watching her getting visibly upset with all of the pricks and prods might have been the hardest thing we've gone through to date. Obviously all of the testing is mandatory but it just sucked watching her struggle in pain and not be able to meaningfully comfort her.

By the evening, she was back to being stable and we left praying that the worst of the day was over. The results of the blood work will indicate if she has an infection and we should see those results today or tomorrow. She was resting easy and looked like a different baby from morning to night which probably helps us more than her. I can tell she's still fighting because even with all of the tubes and wires, we can see her little smile when she realizes we're there. All that's left is to pray and hope she fights through this and gets back to where she was on Wednesday as soon as possible.

Today will be better than yesterday!

Here's a few pictures we took yesterday:

Mom comforting Madeline.

Madeline @ 9 days.

3/7 Update

Madeline had a very quiet day yesterday that was filled with great news. One of our biggest early hurdles for her was brain hemorrhaging and that typically manifests itself in the week one ultrasound. The ultrasound taken on her birthday was to rule out any immediate issues but the doctors have let us know that we wouldn't be out of the woods until the second one is completed. I'm unbelievably happy to report that they found no issues and she's been given an all clear for now. There are all kinds of scary complications with brain development in a premature baby and it's such a relief to have gotten through this hurdle.

Breathing wise, she graduated again! They switched her from the ram cannula to the Humidifed High Flow (HHF) oxygen and it's another step towards her breathing on her own. It's looking like it could be possible that she'll be breathing completely on her own in the next week. That would be a super aggressive goal but in the big picture, she's ahead of where we were expecting her to be and we aren't stressing too much about when the support goes away. If she has to switch back to the ram for a little more support, it's really not a big deal and the tubes themselves look about the same to me. Her feeding were upped again and she's up to 1 ML per hour and has shown no signs of any stomach issues. Steady as she goes!

She wasn't as active yesterday when we were visiting her so there aren't any crazy stories but she does love to kangaroo with us. We've been able to hold her between the two of us for about 3 hours straight and I personally think it helps all three of us. It's starting to feel like there's a light at the end of the tunnel and we'll have her home causing a ruckus with her best friend to be Baxter in no time.

The Poop Hits My Hand

Madeline had another easy day celebrating her one week birthday. The pneumo is now officially, all doctors are in consensus, really really this time, resolved. This means back to upping the feedings and she's currently on 1/2 ML per hour every hour. Her oxygen settings were also reduced once again and she's doing so well she might be graduating off the ram cannula to high flow oxygen in the next few days. In talking with the nurses, they probably won't take her off of everything completely because her young body can forget to breathe. Leaving her with that helper will only reduce the stress on her body and ideally help her focus on growing.

Yesterday's fun story was Madeline showing her feisty personality once again. When I came to visit after finishing my work day, Kristen was doing kangaroo care with her and we decided to switch off to give me a chance to hold her. Once she got placed onto me, she squawked louder than any of us had heard so far and did not stop until we finally got her wires more comfortable for her. Her little cry is really cute at the moment but man am I starting to think that her cry is going to wake up every living being in a 50 foot radius. According to our parents, Kristen was pretty quiet as a baby and in the words of my mom, 'Will, you were a terror and not the easiest baby.' We've been hoping all along that she would be taking after Kristen but it's looking like our angel may be taking after dear old Dad but I digress.

So as I was holding her, all of a sudden I felt this huge amount of pressure come out of her butt and here's how the next 20 seconds played out.

Dad: Woah, Madeline, did you just poop on your Dad????
Nurse: Yeah, she's started pooping now.
Kristen: Hahahhahahahha - that's my girl.
Dad: Poop just happened and I'm going to write about this tomorrow.

Lo and behold, before we left Kristen changed her diaper (being the awesome Mom that she is) and I'll leave out the gory details but yeah, that's exactly what happened and that's the story of how Madeline pooped on her Dad for the first time.

Madeline @ 1 week.

3/4 Update

Madeline had a very ho-hum day yesterday. Because she's so stable at the moment, there aren't very many tests and the few tests that she does have (still doing a blood gas every 12 hours), she nails 'em. The only update on her status that we have is that there was some disagreement among the doctors regarding the size of her pneumo and if it had resolved yet. Her weekend doctor thought it was completely resolved and started upping her feeding amounts. Unfortunately, her primary doctor was back yesterday and indicated that he still barely saw it on one of the scans. There's a tiny chance that the feedings can exacerbate the pneumo and cause complications. With him being the most conservative of the three doctors, she had her feedings brought down a little bit and she'll be delayed getting her to the full feeding amount by a few days. This is in no way bad news and while Kristen and I are both extraordinarily impatient, a few extra days for our little one to finish recovering is fine by us. She graduated from her light that helps prevent jaundice and her respiratory treatments continue to be decreased. Next steps are for her to completely resolve the pneumo and get to the feeding.

For Kristen and I, yesterday's treat was that our nurse swaddled her up enabling us to hold her in our arms rather than going skin to skin letting us see her eyes and all of her tiny facial expressions. A completely different experience than the kangaroo care and in my opinion, a little better. It was the first time that she started feeling like a normal baby for me and that I was getting a normal Dad experience. With all of the chaos over the past week and a half, it was a nice, quiet relief to relax and hold my daughter for a few hours while she slept in my arms.