WIllow's First 100 Days

Hi everyone,

I'm back down in Marquette for the weekend, back in the Beacon House. Yesterday was Willow's 100th day of life and 100th day in the NICU. Just like they do with the president, let's take a look back at what she's accomplished:

* She went from an oscillating vent to CPAP (to a regular vent for a while when she was sick), back to CPAP, to a nasal cannula (and back to CPAP a couple times) and finally to breathing on her own!

*She has nearly quadrupled her birth weight (she's 6 pounds, 13 ounces today).

*She's developed a love of good literature (favorites being "Are You My Mother?" and "Goodnight Moon").

*She's extubated herself while on a vent, as well as many times with her NG tube. She also got quite good at removing her CPAP from her face and moving it up to her forehead. You might be able to see in this photo, her NG tube is out because she just ripped it out.

*She's attracted legions of fans from around the globe (okay, I think the only international fans are my aunt and uncle in Australia, but it sounded cool, OK?)

*She's able to follow objects and faces with her eyes

*She's wrapped mommy and daddy around her little finger, as well as grandparents, aunties and some of the nurses.

Um...I think that's about it. Way to go, Willow! May your next 100 days be just as productive.

So I got down here at 7:30 last night. It would've been earlier, had I not gotten in a car accident on the way down. Yep, poor Subie has been towed to an auto body shop for the second time in 6 months (the first time was in January when a plow truck pulled out in front of us in Mass City when we were on our way to MN for my grandpa's funeral). I was about a half hour away from Marquette when a car two in front of me slowed way down suddenly to turn left. The car behind him hit him and I hit that car. The first thing that crossed my mind after the impact was "oh no, now I'm not going to get to see Willow tonight!". The second thing was "oh crap, when will I be able to pump and where?" I was already overdue for pumping and, as you moms out there know, the boobs won't wait, at least not without protest!

Mine was the only car in that accident left undriveable. The hood got crunched pretty good. The airbag didn't come out. Everyone was fine, although I think I have a little whiplash or something; my neck is sort of sore. So we pulled into an auto salvage place that happened to be right there (except for my car which was left on the shoulder), and while we were waiting for the cops to show up, I went into the place's bathroom and pumped standing up. It was a disgusting bathroom and not pleasant. Also not pleasant was explaining to the dude that owned the place that I needed to use his bathroom and his electricity so I could pump my breasts. Ha. While I was pumping, I heard a crash, and when I came out, I saw that another accident had just occurred. I don't know exactly what happened, but I'm guessing they weren't focusing on the road and were gawking at our accident. A big yellow Hummer, which apparently was going very fast, clipped another truck pulling a trailer. The Hummer ended up about 150 yards down the highway and hit a guardrail. It ended up losing 2 of its wheels and had to be towed away too. The trailer truck then hit the first car in line from my accident while it was sitting in the parking lot! What a mess. You'll probably be able to read all about it in tomorrow's Marquette Mining Journal. A 5-car accident is big news around here. So anyway, I called Josh and he ended up calling Nate, Ellen's dad. Nate was my savior and got me to the NICU so I could see Willow. Nate and Lauren live in Eau Clair, but hadn't gone back yet since Ellen was discharged; they were still staying at Lauren's parent's place in Ishpeming, which is very close to where the accident was. So Nate came and got me and brought me to Marquette. I made it to the Beacon House just in time to check in before they closed. Thanks, Nate!!!! It was such a relief after all that to get in to the quiet of the NICU and just hug my daughter. I didn't even care about the car or the accident as long as I got to see her.

So here's the Willow update: not much has changed with her feedings. She's still nippling once a shift, and taking all of it some of the time. The bradys have decreased though, so that's good. She had labs done yesterday, and her electrolytes are looking good. Her blood pressure is also much better than it was. However, her hemoglobin has decreased. That's her red blood cells. She's apparently always had "anemia of prematurity" but now it's combining with a "physiological anemia" which apparently all babies get at a certain age. Her doctor thinks that fixing that will give her more energy for nippling. She said that's what she thinks did the trick for Ellen, and it's helped with many other babies too. So Willow is getting a blood transfusion today. Unfortunately it won't be Grandpa Chuck's blood this time. The last blood he donated has expired, and even if he were to donate today (which he couldn't since he's in Minnesota right now) the blood isn't ready for 5 days. Josh couldn't give her his blood either for that reason. (He has the same blood type as Willow and Grandpa too). So Willow will be getting a random good samaritan's blood. I guess that's OK. Maybe the new blood will be the turning point and give her some more energy for sucking. I hope so. Willow's nurse today said once she had to get a blood transfusion and afterward she felt like a new woman.

When I saw Willow last night she looked different already. She has gained about a half a pound since I last saw her. She's getting so big and so cute. She was also wearing some really stylish new jammies we got from our friends Katy and Nate. The hat was made by Josh's sister Janna. It also has a matching sweater which Willow will try out soon.

Slow but sure

Hi everyone,

Lindsay here. It's been a busy week at home with work and stuff around the house. We both really miss Willow. We feel bad about leaving her down there with no one around who loves her...but we really have no choice. We can't afford for either of us to lose our job, so we gotta keep going.

Since the last post, Willow hasn't had any more feeding-related bradycardias. She had one quick non-feeding-related one, but I think that was just a fluke. She's been taking her whole feeds again too, for the most part. We don't know when they'll start increasing the frequency again; I imagine they'll take it a little slower this time. So, we're glad the bradys have stopped and are hopeful that Willow will pick it up again soon.

I'm heading back down again tomorrow after work, and Josh is probably working Saturday and going down after that. Then we can take some new photos. Sorry this is such a quick post; there's just not much news!

Lindsay

6 1/2 pounds.

Hey everyone,

We're both now back in Houghton. Lindsay decided to come back for the rest of the week and do a little work. We felt that it was the best option right now. Willow is really going to need Lindsay when she gets out of the NICU. Any time Lindsay can get in at work is extra time to spend with Willow at home. Plus it will help her from having a huge back log of work to catch up on after her leave is up.

Willow is starting to improve with her weight and feedings. Today she hit 6 lbs. 8 oz. She'd been stuck at 6 lbs. 4 oz. for a while. It was probably due to how hard she was working at nippleing. Now that she's had a little break she's starting to put on some weight again. This afternoon she did really well on her feeding. She took the entire bottle in 20 minutes and didn't have any heart rate drops. Her nurse said it was a perfect feeding. We were really hoping for some good news. It's helped lift our spirits. They are nippleing her once per shift (3 times per day) right now. As she continues to improve they will increase the frequency.

The very good news of the day is that little Ellen got discharged today. I got a text from Nate and he said so far so good. We're already looking forward to reuniting the two little NICU girls.

The weather up here was fairly brisk today. It just got back from a walk with Scout and it was about 45 degrees with a light mist in the air. It was actually enjoyable. Spring is finally starting to show itself. All the apple trees are just about to peek in color. Now all we need is Willow at home and life will be good.

See ya later,

Josh


We've got the room almost all set. Just add Willow



We got this painting when on vacation in the Dominican Republic. We got it before Lindsay was even pregnant, but knowing that it would look perfect in a nursery.



This video gets good at about 35 seconds so be patient. You've got to watch out for those wandering hands. Poor Willow, laughing at her expense.

Little Stinker!

Hello,

Well I hardly even want to write this post, but here goes. First of all Willow is totally 100% healthy, and that is the most important thing to remember. But, we are probably looking at another week here in the NICU. Willow has continued to have bradys with her feedings, and is rarely taking a full feeding from the bottle/breast. We talked to her doctor again today and she is still thinking that this is all related to Willow getting over stimulated and pooping out. So now we are nippling only when awake, and at least every other feeding is going through the NG tube.

None of this is something they haven't seen before here in the NICU. In fact it's fairly common, especially for 26 weekers. We wouldn't even be all that disappointed, considering she's otherwise healthy, except we were expecting to be home two days ago, and now we aren't really sure when Willow will be home. I just have to keep reminding myself and Lindsay that eventually we will be home and we'll be so occupied with Willow that this will all fade into our distant memory.

Willow, contemplating how long she should stay in the NICU


We are going to check back into the Beacon House tonight. We aren't going to be rooming in anymore, another mom needs the room, so we figure it would be good to get back off the hospital campus. I think, however, that when Willow is ready to go home again we won't even need to room in again. We pretty much have down how and when to give her meds and how to deal with all her cares. So hopefully when Willow's ready we'll just spring right on home.

Tonight we're going to go out to Lauren's mom's camp which is about 30 minutes from here. For all you non-yoopers a "camp" is the same as a cabin or cottage, that's just what they call them up here. It'll be good to get out of the hospital for a little while and get some fresh air. Also Nate said there will be beer out there, and I could really use one right now.

Willow getting read her favorite book, "Are you My Mother". Look at the pretty pictures.

No need for anyone to send sorrys or anything like that in the comments. We know you all feel for us and instead keep channeling postive thoughts for a healthy baby to come home soon.

Take care,

Josh

She's starting to really like her paci. I'm not sure if that's good or not, oh well it makes her happy.

Willow's the boss

Hey all,

Josh back here blogging for the first time in a while. Well, I was hoping to be writing this from the comfort of our own home by now, but Willow decided she wasn't ready to leave yet. Everything was nicely on track up until Lindsay roomed in on Thursday night. That night Willow started having bradys, heart rate drops, with her feedings. She had one or two with every feeding up until I got here yesterday around 4 PM. Willow's doctor thinks it's related to how fast she was progressing the last week or so. She thinks Willow is just getting tired out with all the feedings. So they put her on structured feedings every 3 hours hoping that would turn things around. So far it's been hit and miss. I've had a couple feedings with out a brady, and I've had a couple of feedings with a brady. She also is only supposed to eat for 20-30 minutes, and for one of the feedings she didn't take everything, so the NG feeding tube had to go back in.


Mom and Willow reading Goodnight Moon



Willow isn't acting really any differently. She's still nice and spunky and seems to be happy and comfortable, so I guess were just waiting it out right now and hoping that she gets the feedings down good again soon.

We're still rooming in. Last night we got a hospitality room and took shifts here with Willow. The hospitality rooms are right here in the hospital, so it makes it very convenient when you need to come down at 4 AM.


Check out Willow's pointy chin. She got it from her mom.



I guess I'm not exactly sure what the time table is anymore. I'm not even sure if we'll keep rooming in if she isn't taking all her feedings, but I'm really hoping we won't be here for too much longer.

Yesterday was Willow's original due date. Although, another doctor told us it was the 29th. So sometime this next week Willow would have been born. However, we all know Willow does what she wants, and I have a feeling Lindsay and I are going to have our hands full.

Hope you all have a fun filled Memorial Day Weekend. Maybe we'll still get outa here and be able to enjoy it ourselves.

See ya,

Josh

"The Car Seat Test", and other photos

Hi again,

I just checked out of the Beacon House. It was pretty emotional, actually. Yeah, I cried. And hugged the manager. I don't know what we would've done without that place. It's been our home for 3 months. It felt so great to leave it though. Wow.
I'm in the OB waiting room right now, waiting for the rooming-in room to finish being cleaned. I have my computer now, so hopefully I can get some photos up.

This is Willow as she began the "car seat test". For this test, they put the baby in the car seat for at least as long as their drive home is. They will hook Willow up to the monitors and she can't have any apneas, bradys, or desatting episodes. Otherwise she fails! So right now I'm not sure if it's over or not, or if she passed. I hope she did. Doesn't she look like a big girl in the car seat!



















Here's some of me and Lauren, and Willow and Ellen. We're definitely keeping in touch with these guys. They've become friends. Someday Willow and Ellen will laugh at these photos.

















Well, better go. Time to move in!

Rooming in Tonight

Hi everyone,

I just wanted to write a post to let you know that everything is still on track. I should be rooming in starting late afternoon or evening today. Wr're just waiting for the other two babies in the two rooming in rooms to be discharged before I can go in. Sometimes, if the OB area isn't busy, NICU moms get to room in in an OB room. That would be much preferrable because those rooms have windows and are bigger, but there's no way that's happening because OB is SO busy right now. In fact, there was a pregnant woman at the Beacon House this morning who is in early labor, and she can't get admitted until some people get discharged! She didn't seem too concerned about it though. Anyway, whatever, I'm happy to sit in a tiny room with no windows if it means we get to leave soon. :)

Last night was a little stressful. I got to the NICU at like 7:30 and Willow was asleep. The feeding schedule they have her on now is that she has to have 140 mLs every shift (every 8 hours) as opposed to 55 every 3 hours. It can average out. Well, when I got there her nurse said she hadn't been eating that well so far that shift and still had to take 80 mLs by shift change at 11. But she was still asleep. So we woke her up and I got her to take 50. Then we put her back down, I went to pump, and when I got back it was 10:00 and she still had to take 30 mLs by 11. And she was asleep. So I woke her up again and was basically trying to force milk down her throat-poor thing. The stakes were high because if she didn't take it, they would maybe have to put the NG tube back in and the discharge would be put off. So I was sweating. Lauren was there too, trying to feed Ellen, and Ellen was being a little stinker too. We decided they talked before we got there and made a pact to try to freak out their mommies. Anyway, Willow only took 15 mLs, but her nurse said not to worry, she wouldn't put the tube back in and they'd see how she did for night shift. When I woke up at 4 AM to pump, I called over there and her nurse said she still wasn't doing that great. But, then when I woke up at 7:30 and called, they said she had a huge poop, then took 60 mLs at 7:00 and then woke up hungry 15 minutes later and took another 40! So, I guess she was just a little backed up. Today they said everything is still on track. Whew!! We were laughing last night about the situation; when has a sleeping baby ever caused a mom that much stress? Usually it's the other way around! Ha.
By the way, I haven't mentioned Willow's weight lately. She's 6 pounds, 4 ounces today. She's been gaining weight nore slowly because of all the nippling. It burns more calories than being gavage-fed.
Sorry there haven't been any photos the last couple days. The Beacon House connection has been bad lately and won't take photos. I'm writing this post from the OB waiting room. I'll be able to post some photos when I start rooming in and have my own computer over here at the hospital.
OK, more to come later. Thanks everyone, for the happy comments!