Sunday, March 31, 2013

Happy Easter! 3/31 Update

Happy Easter everyone! Madeline had a fun day yesterday with two visitors, Diana and Emily. With her regular doctors coming back on Monday and her remaining so stable, there weren't any changes to her feedings or ventilator and we shouldn't expect anything new until tomorrow. She continues to accept the bolus feeding and is growing like crazy! She's up to 1350 g which is over 3 pounds. 

She's definitely getting stronger every day and one of the signs is that she can keep her eyes open much longer (and they are also in sync which wasn't the case before). She was wide awake and exploring her environment for Kristen and the girls yesterday which led to lots of pictures and this video. 

Saturday, March 30, 2013

Movin' On Up

Madeline had another big day yesterday. First and foremost, she had a huge jump in her weight and she's now at 1320 g (almost 3 lbs!). Kristen and I have both noticed that she'll go slow and steady with her weight gain and then every week or so, she'll have a big jump. This is great news for lots of reasons and she's going to keep growing quickly as they are increasing or changing her feedings almost every day without any push back from her. She did have another change in the feeding and is now doing the bolus full time where she'll get about 26 mLs at a time every 3 hours. The bolus is a gravity fed tube that pushes the milk to her stomach much faster and the feeding takes about 15 minutes to complete. This is an even bigger change for her especially considering where she was just a week ago but she seems to be tolerating it OK so far. I can still see her struggling at the end a little bit but it's going to get easier in no time. Breathing wise, she's continuing to be do well and her settings were reduced yesterday back to where they were a few days ago when they got moved up a scosh.

With apologies to Madeline whenever she gets to read this a long time from now, I can report that my sweet daughter has left me aghast with the amount of poop that she creates. HOLY CRAP! Kristen had mentioned to me that it was getting ridiculous (my word not hers) what was in her diapers lately but I was in denial. Now that I've actually seen it, I'm no longer a non-believer. Prelude of things to come I'm sure.

She was wide awake when I got to hold her yesterday and very active as usual. The smallest things wear her her out (see previous paragraph) so it's really great when we get to be with her when she wants to play. Thankfully, the lights were also on too so lots of pictures were taken and I'll let them do the talking.

Friday, March 29, 2013

3/29 Update

Madeline had a big day yesterday as she's switched from continuous feeding altogether and is now doing 24 mLs an hour every 3 hours. It's the same amount of milk over the course of the day that she was on before but obviously a much larger amount per feeding. In her first two feedings, her stomach was able to tolerate it without spitting it back up. This is good news and means she'll continue to stay with this approach. I was holding her through the second feeding and could definitely tell she was wearing out by the end but that's to be expected. No changes on ventilator settings and she's still breathing without any issues. I doubt she'll have any changes there in the short term as she's going to spending a lot of her energy on feeding and digesting.

I was holding her throughout the second feeding and she is extremely wiggly when she's awake. She never sat still in the same spot and wiggled around so much she knocked her hat off requiring me to keep her head warm with my hand for last bit of my time with her. She was smiling a ton yesterday (particularly after the feeding was over) which is always a great joy for me.

We've been light on the pictures over the past few days because there are 3 other babies in the room with her and the light is always off making for crappy pictures but I'll try to get some action shots over the next few days.

Thursday, March 28, 2013

3/28 Update

Madeline had a reasonably quiet day yesterday. The nurses had to up her ventilator settings a bit because she was needing a little more help with her breathing. It's nothing too alarming and her oxygen saturation level came right back up to where they should be so if anything, it was just a reminder for us that while everything has been very stable, she's still in the NICU.

Now with the "bad" news is aside, the good news is that her bolus feeding went well this time and her stomach was able to handle 24 mLs over a 2 hour period. This is great because it's a critical step towards her feeding from a bottle and then on to breastfeeding. We still have a few weeks to go until they try the bottle but this is definitely counts as a passed milestone. Additionally, she passed another milestone with her brain ultrasound. The 4 week mark is the point where some pretty nasty complications can present themselves and I'm happy to report that the radiologist found nothing in her results. All in all, a good day for the long term prognosis, a little bumpy for the short term, and that's just fine.

After the shenanigans with the pacifier yesterday, I was excited to see what surprises she had in store for us but alas she was just a snoozy baby. She was comfortable for most of our time with her, opening her eyes a few times but she really just slept. Hopefully today, she'll be more awake for us and as always, keep growing so that she can home.

Wednesday, March 27, 2013

1 Month Birthday!

Madeline had a good day yesterday on her 1 month birthday. The nurses treated her to a birthday card, a new blanket and a bow for her hair which was very sweet. Her heart rate was about the same and continues to not really be a big concern. I'd forgotten to mention a few days her ventilator settings were dropped from 3 L to 2 L of oxygen. One step closer to breathing without any assistance for sure.

She was a real treat for us yesterday. Kristen got out her pacifier and Madeline decided it was time to be a pistol. She would suck on it for a few seconds then be done with it which was when Kristen would grab it. The funny part was that she would then open her mouth up like she wanted it back as soon as Kristen had it and then close her mouth right before Kristen would put it back in. Followed up by her sticking her tiny tongue at us. It was hilarious!

Yesterday's pictures:

Tuesday, March 26, 2013

3/26 Update

Madeline had a quiet day yesterday. They are continuing to monitor her heart rate but after talking with the doctors, it was never that far from her baseline and thus, we shouldn't be too worried about it. Her feedings went up again to 7.5 mLs per hour yesterday and her weight appears to be staying over 1200 g which is good news.

Yesterday's visit was pretty ho-hum as she just snoozed away in my arms comfortably for the most of my time there. She did start to squawk a little bit which I'm sure is a prelude of things to come. Slow news day on the Madeline front but who's complaining?

Monday, March 25, 2013

3/25 Update

Madeline had an OK day again yesterday. She did have a blood transfusion on Saturday night and that brought her heart rate down some more but it's not exactly where we want it to be. She had an EKG and it didn't show anything that needs immediate attention so it may just be a wait-and-see. Hopefully, it'll come back down where it needs to be in the next few days.

Otherwise, she had a pretty normal day with Kristen, myself, and her aunts spending a bunch of time with her and she was snoozing throughout all of my time in there. Her weight is all the way up to 1215 g but I think that has more to do with her transfusion than any actual weight gain so we'll see where it lands in the next few days.

Sunday, March 24, 2013

Pacifier Time

Madeline had an OK day yesterday. Her heart rate is a little elevated and she might need another blood transfusion but she's obviously under close observation and seemed very relaxed all day when we were with her yesterday so I'm not too worried. Otherwise, she's doing just fine with her feedings and ventilator settings with no changes (probably expect it to stay that way for today as well).

She spent her afternoon hanging out with Kristen and her crazy aunts Jenny and Wynter from Virginia. While they were in there, Kristen snapped this picture and I'm a huge fan.

Saturday, March 23, 2013

Eye Ok

Madeline had another good day yesterday. Her ventilator settings were reduced again as she's now breathing regular air and only has pressure as a booster. Her feedings are staying the same and the plan is to try the bolus again on Monday. The big news was she had her first eye exam and she checked out well. Her eyes are completely healthy but still very immature. This means that we'll have another test in 2 weeks but given how little help she is needing for her breathing, hopefully we won't run into any of the eye-related complications. The exam was pretty rough on her but she was tough as nails. When they did the exam, which took about 3 minutes to complete, she cried the loudest I've ever heard her. It was pretty crazy to hear her that loud (as a comparison, the almost full term baby next to her was crying at the same volume) but it was over quickly and she came right back into my arms for Daddy-daughter time.

Next up is to keep growing! 1125 g and counting!

Friday, March 22, 2013

All Smiles

Madeline had another good day yesterday. Her oxygen settings were reduced again and we're inching closer and closer with everyday towards no help at all. I'm thankful that she made it through another Thursday without incident as those first two weren't much fun. Her feedings are still being tolerated at 7 mLs per hour and they are trying to move that up even more. They tried switching her to a bolus tube which was at 10.5 mLs per hour but it was a little too much for her and we'll have to try again in a few days.

She was all smiles while I was visiting yesterday which was a lot of fun. I'm not entirely sure whether she was smiling at me because I was there (the naive answer) or because she was mimicking my face but either way, it was awesome. She was also kicking up a storm stretching her long legs high up in the air and then kicking like she was riding a bike. It was really funny and I was trying to get it on video but she wasn't cooperating there.

Overall, it's been a great past two weeks and I'm very thankful for all of the good news and hope that she keeps it up. Her weight went past 1100 g yesterday so she's definitely growing and I feel like we'll be at double her birth weight in no time.

Here's yesterday's action shots:

Thursday, March 21, 2013

PICC is Out

Madeline had a great day again yesterday. The PICC line is out and her arm is free to go about whatever business she wants. Her head ultrasound came back normal once again so no cause for worry there. Her feedings are all the way up to 7 mLs per hour now and that's the number we're apparently staying at for awhile. It's really great to see her without the ventilator and IVs (plus all of the associated wires and tubes) In her room, it feels like somebody did spring cleaning and freed up a bunch of space.

When we saw her yesterday, I was able to do some kangaroo and she is definitely starting to look and act even more like a regular baby. We don't know her weight reading but both Kristen and I are expecting a decent jump as all of her just looked bigger to us. She was really calm when I was holding her and snoozed the afternoon away. Here's yesterday's action shot (without the PICC line):

Wednesday, March 20, 2013

Three Weeks!

Three weeks! At 9:40 AM yesterday, Madeline turned three weeks old. She had a pretty great day graduating from the ram cannula over to the high-flow oxygen which means that she's now breathing on her own. The PICC line is still in just in case she has any feeding issues over the next few days. I definitely prefer a lot of caution on pulling that out because it's really not fun for her to have it placed (she has to be sedated). She grew another 25 g yesterday and if she stays stable, she should on average gain somewhere between 15-30 g a day. She's still a bit underweight for her gestational age but no one is worried about it given how stable she's been so far.

We both got to kangaroo with her yesterday and she was a perfect angel for Kristen. When I came in, she was snoozing peacefully and looked super comfortable. When we transferred her over to me, she was doing great for the first bit and then got super cranky and she had to go back. One thing I noticed that amazed me was while she was laying against me, she could lift her head up to look at me. Given how heavy her head is in relation to the rest of her body, I had no idea she would be able to do that.

Here's her 3 (and 1 week) pictures:

3 Weeks!
1 Week

Tuesday, March 19, 2013

3/18 Update

Madeline had another good day yesterday. There weren't any changes to her PICC line, the ram cannula, or her weight but she was very peaceful and stable. She had new nurses that were very strict about the time limit for kangaroo care but Kristen did get to hold her for a few minutes (I did not). Most importantly, she was resting easily and looks really comfortable. She's up to 6.5 mLs per hour and I'm not sure how much higher they'll be going in short term as I thought 5 was the max over the weekend.

Moral of today is no news is good news but here's a few pictures we took:
Courtesy of Grandma Esch from over the weekend.

Monday, March 18, 2013

3/17 Update

Madeline had a good day yesterday. She continues on her full feedings (6 mLs) and the upside I failed to mention yesterday is that because she's on her full amount, the IV PICC line is no longer providing any nourishment. This means that assuming today goes well, that line in her arm is coming out! One less wire for our little girl is going to be really nice for her and us. She's also graduating over to the high oxygen flow from the ram cannula today or tomorrow which is another good sign that her lungs are growing and doing so well. So much good news always makes me nervous but I'm going to enjoy today and be cautiously optimistic for tomorrow and take it from there.

When Kristen went in yesterday, our nurse for the day debunked the notion that we could no longer do kangaroo while she's in isolation. So we both got to kangaroo with her again yesterday for the time in what feels like forever. Even though I actually prefer when she's swaddled just because that lets me see her, it's totally different and awesome to hold her that close. Grandma and Grandpa Esch got their last visits with her before heading back to Cincinnati and she behaved nicely for them. It's always a treat for us to watch the joy  of being with Madeline through someone else's eyes and we were happy to share that with them.

Praying for these days to keep up and let's get her up to 2 kilograms in no time!

Sunday, March 17, 2013

3/16 Update

Happy St. Patrick's Day everyone!

Madeline had a so-so day yesterday. Her feedings got increased again to 6 mLs per hour although she's still only gained a few grams over the past few days. She got a few minutes with Grandma Esch yesterday but she wasn't a huge fan of being out of her bed so they had to move her back. Breathing wise, everything remains stable but they aren't planning any changes to her settings soon. When Grandpa and I got there, she was resting easily and peaceful so it looked like she just needed a day to rest up and sleep. In talking with her nurse, she was saying how awesome she's done with so little complications so I'm very grateful that not being able to hold her is what counts as a so-so day right now.

Kristen took a fun video on Friday and here she is:

Also, here's a few pictures of Grandma Esch with Madeline:

Saturday, March 16, 2013

3/15 Update

Madeline had another good day today as she had zero complications and continued to increase her feedings. She's up to her maximum of 5 mLs per hour and she'll stay there until she can gain more weight. The next steps on our journey are to keep reducing her help from the ram cannula (ultimately to switch her over to high-flow and then one day, she'll be breathing on her own). The fact that we've had over a week without any major complications is fantastic and a blessing. Hopefully, she'll continue to get stronger which will help allow her body to recover from any setbacks she might have.

One thing that gives me hope is that one of her roommates was born (the family had twins) at 23 weeks and had been there since October. Yesterday, they got the joy of bringing their first baby home and the second will be coming soon thereafter for them. It really helps me keep it in perspective when we feel like Madeline will be there forever and makes me excited for our special day when we'll get the same experience.

She was wide awake for Kristen yesterday and a bit snoozier for me but she's still able to tolerate being held for awhile which is great for us. We have visitors this weekend as my parents are in town and Grandpa Esch got to take a turn holding her last night which made for a huge highlight for him.

Here are yesterday's action shots:

Friday, March 15, 2013

3/14 Update

Madeline had her first good Thursday yesterday. She upped her feedings up to 4 mLs per hour and she continues to eat without any issues. All of her breathing trouble from the day before was gone as they adjusted her settings a little bit and that made a world of difference. Also, her ultrasound came back and everything was all clear (no brain bleeds!)

She was really awake for me yesterday and I was able to get in some quality time with her to make up for the last few crappy days. Her eyes are starting to focus even more and she's getting even more active.

Here's a few action shots:

Thursday, March 14, 2013

3/13 Update

Madeline didn't have a great day yesterday. She was visibly struggling and while Kristen got to hold her for a little bit, that whole time was a constant struggle to get her monitors adjusted and for Madeline to get comfy. By the time I got there after work, I was basically told we couldn't touch her anymore, let alone hold her. Totally frustrating for me but absolutely what she needed. We called a couple of times through the night and she's doing fine so there's no cause for concern. It was just one of the slightly down days on the roller coaster and this wasn't even that bad. It was her second day off the ventilator and her body is having to work harder to breathe now so this wasn't all that unexpected either. Good news is that she's still tolerating her feedings well and she finally crossed over to 1 kilogram.

Here's hoping for her first good Thursday!

Wednesday, March 13, 2013

Two Weeks!

Madeline celebrated her two week birthday yesterday. She's continuing to do well on the ram cannula and her feedings are up to 2.5 mLs per hour. The goal number is 6 mLs per hour and once she's there, she'll be off the IV nourishment altogether. Her weight is allllllmost up to one kilogram (990) and I'm betting she'll be there today.

We got to hold her again yesterday but we got the news that she's off skin to skin for a few weeks (zero cause for alarm, just the doctors being cautious). Despite our preference to do kangaroo, this really isn't the end of the world as getting to hold her swaddled up is actually more fun. Getting to see her eyes, I can tell her nervous system is starting to get a little stronger as she's tracking movement and keeping her eyes in sync without getting cross-eyed. She continues to be exceptionally feisty as we expected .

Here are yesterday's photos:


Tuesday, March 12, 2013

3/11 Update

Maddy had a big day yesterday as she finally got extubated and went back onto the ram cannula. She continues to do very well and she's up to 2 mLs per hour on her feedings. At this point, we don't have any looming tests, major imminent hurdles, or causes for concern which is a huge relief. Thursdays have been her bad days so our hope for the week is that she can make it through to the weekend without any setbacks. It's a long roller coaster and we know we have a few more down days ahead but every day is one more closer to bringing her home.

We both got to kangaroo with her yesterday and she made it about two and a half hours before we had to put her back in. I come visit after I finish up work for the day so she cut my time short a little but it's still so amazing to get to hold her so no complaints here. 

Kristen and I were cracking up yesterday when she had to sneeze like whoa. Here's the video.

Kristen took a few action photos from her off the ventilator yesterday.