Lots of visitors

Hi everyone,
Lots has happened since the last post. We never have time to blog anymore! Funny how that works...

Willow went to the doctor on Tuesday, and she's up to 8 pounds 4 ounces! Yes, she gained 10 ounces since her last appointment 8 days prior. We were very relieved, but not surprised, I guess. We had been on a pretty aggressive feeding schedule since the appointment before that when she had only gained 2 ounces. We've been pretty religious about the every 2.5 hours thing, and i guess it's working!

My grandma Lois and aunt Tracey came to town on Tuesday and they were happy to see Willow.



We got a 4-generation shot.


Then on Thursday night, Josh's parents and sister Janna came up. Janna had been to the NICU but never got to see Willow in person yet since only parents and grandparents are allowed. We were so glad she finally got to see her! And Jack hadn't seen her, either, since she was a few days old.



We've had a great time hanging out with them. So has Willow! It's been great to have helpers. I've hardly done a daytime feeding all weekend! We also celebrated Josh's 30th birthday on Friday (Thursday was his actual birthday).


Today, my friend Ruth threw a baby shower for me out at her parents' camp. As if Willow hasn't gotten enough presents already! :) It was a fun shower; I really appreciated it. I hadn't really had a shower yet (except for a small one given my the girls in my crafting group), so was glad I got to have one. I was supposed to have one in Minnesota the weekend after we got back from Florida back in February. Well, then I went into the hospital and Willow was born, so that never happened. Thanks to everyone for all the thoughtful gifts!



The parting shot, because I think it's so cute, is our friend Seth holding Willow. Awww....

Happy Father's Day!

Hi everyone, it's Willow's birthday again - she gets lots of them. She's one month old adjusted today. That means her due date was 1 month ago. This age is the age we will go by as far as developmental milestones, etc. (Obviously she's a little behind your average 4-month old!). Preemies are supposed to "catch up" to their chronological age by the time they're 2 or 3 years old.

We had a good Father's Day and spent it out at my parents' camp. We also took Willow on her first outing this weekend. We brought her down to seafood fest at Houghton Beach on Saturday night, then we brought her when we went to watch the Bridgefest fireworks at a clearing near our house. She did well! Our friend Liz wore her in the carrier. Thanks, Liz!

Willow's Father's Day present to her Daddy was learning how to roll over. She did it 3 times Sunday. The third one I caught on video. She wasn't as agitated the first 2 times! I know 1 month is pretty early to roll over, but I don't think she's a prodigy. :) My theory is that NICU babies have an advantage as far as "tummy time" goes - they spend a lot of time on their tummies and regular babies don't. She was still several weeks from her due date when she extubated herself from her vent by thrashing her head back and forth in her isolette. I don't know if this is true, but it's just my theory.

4 Months Old

Hello,

Happy Friday! It's Willow's 4 month birthday today. Hard to believe. She's come such a long way. I was a little nostalgic about it today. I took her footprints for the occasion. In the NICU, the nurses took her footprints on her birth day, and then on her 1, 2 and 3 month birthdays. I wanted to take pictures of all of them for the blog, but I couldn't find those footprints anywhere. I know they're around here somewhere. I just found her birth prints and then compared them to the ones I took today. The ones today look like one foot is bigger than the other but I don't think it really is-it was just the way I put her foot on the paper.


Here's a shot of her the day after she was born. I don't think we put this one on the blog yet- it's a little disturbing. But now that she's well and all, I can look back at it more with amazement than...distress, I guess. It's amazing what modern medicine can do for these babies!



...and an especially chubby-looking recent photo for comparison.



Willow had two appointments on Wednesday. A woman came over from a program called "Early On". It's a government program run through the school district and it's for pre-school aged kids who may have developmental or other issues. It's free. Willow was referred to it because of her extreme prematurity. This first visit was just me filling out paperwork, but in future visits, they will assess her to see how she's doing in various measures and if she needs help they'll refer me to specialists and stuff, I guess. At least that's my understanding of what the program entails. I'm glad this program exists. I want Willow to have all the advantages she can get. On Wednesday she also had another shot-the infamous DTaP - that's Diptheria, Tetanus and Pertussis. We wanted her to get a certain brand of this shot that has very minimal amounts of aluminum, because aluminum has been shown to affect babies' neurological development and other stuff, especially in preemies. But the NICU wasn't able to get us that brand so we chose to wait until she got out to get it - a decision that wasn't applauded in the NICU. But it was worth the wait because we were able to track down a dose of that shot, thanks to Willow's doctor here. We had to get the shot at the health department though, because that's where they had doses of it. Anyway we were very happy about that, and she took the shot like a champ. A shot is nothing when you've had PICC lines, IVs in your head, and a spinal tap!

We've weaned ourselves off of the charting. We've replaced it with something almost as good and much easier - a device called the "Itzbeen". It tells you how long "itzbeen" since she was changed and ate. I also use it to show how long itzbeen since I pumped and what her last feeding was (every other feeding is special preemie formula and every other one is breastmilk fortified with that formula). It's been working out great! Thanks to my cousing Katie and her husband Jon, who gave it to us!


Since Willow's only drinking my milk for every other feeding and our freezers are all full, I've been dumping pretty much all the milk I pump. It's depressing. I feel guilty about it so I finally contacted a milk bank downstate about donating it. I was super excited about the prospect, until they started asking me the standard questions. They're the same sorts of questions you get asked when you give blood. The first one they asked was whether I had gotten a blood or blood product transfusion inthe last 12 months. Oh yeah...I have. I had a platelet transfusion right after Willow was born. So, they can't accept my milk. Bummer. So right now we're feeding her milk I pumped back in mid-March. I figure we'll use the oldest stuff first since it does expire after 6 months to a year.

We got a new car to replace poor Suby. It's another Suby - an Outback this time. A '98. The best part is, it cost less than what the Forester was worth, so we didn't have to take out a loan or pay anything, which is good because our finances are...not in tip-top shape right now with all Willow's bills! I'm loving the new car. It is so roomy. And, not that we need this now, but it has heated seats!!! I've always wanted those.


I scored on some diapers at a garage sale today. They're all bigger sizes, but really nice brands and in great shape. I got a ton of diapers and covers for $40. I think if I had bought all of them new it would've been like a few hundred bucks. I was so excited. Thanks to Robin for alerting me of the sale, which was just a block from my house.

Here's a shot of Willow snuggling with grandma.



I hope everyone has a great weekend!

Summer is here...finally

Hi everyone,

We've finally gotten some decent weather up here-I think it may have hit 80 today....or at least the high 70s. Willow and I have been on walks every day, though I haven't been outside as much as I'd like since it seems like my life revolves around feeding Willow and pumping, and I do both of those things indoors. I've been doing ridiculous amounts of laundry too, but I've been hanging it outside, so that helps. Overall, life is pretty good. It's strange; the NICU seems so long ago. It's almost like I can barely remember it. Maybe I'm blocking out the whole experience as a coping mechanism?

Willow had another doctor's appointment yesterday (She's going weekly for awhile). She's still doing good. Her doctor invested in an infant blood pressure cuff so we were able to get an accurate BP on Willow. It's good: nice and low. She's gained 2 ounces since last Monday. That's not quite as much as we'd like though, so her doctor suggested that we start feeding her every 2 and a half hours instead of every 3. So far it's been going fine - the schedule is working for Willow and she's still taking the same amounts each feeding as she did on the 3-hour schedule. The only bad thing is it means less sleep for us and a little less flexibility during the day. That's OK.

Willow got some new hats in the mail from great-auntie Jill. We decided to do a photo shoot in our yard. Yes, we dressed up our child for kicks like she's a doll. Hey, at least we don't do it to our dog, like some people!





For comparison's sake, I also took a photo of her wearing one of her old hats, that Jill sent to her when she was still in the isolette:



Here's a shot of her wearing her monitor belt.


I've always wanted to cloth diaper, and am trying to figure it out now. It's complicated! I ordered a trial package from www.jilliansdrawers.com. You pay a deposit, and they send you several types and brands of diapers to try. You have 21 days to test them out and then you can send them back and you get all but $10 of your money back. Then they hope you buy your diapers from them, I guess. It's been a learning experience. I've done a lot of research. The package they sent was the newborn package, but most of the diapers are still too big for Willow. Here's her modeling the BumGenius:


And, some babywearing pics. Willow loves being worn.

Willow's first walk

Hi everyone, Willow is 16 weeks old today. Things are still going fine here. We're settling into somewhat of a routine, and we've figured out a schedule to get us both about 5-6 hours of sleep. Definitely do-able! We've got Willow in an Arms Reach co-sleeper attached to our bed. We've sort of re-created the sleeping arrangements of the NICU with a little nest: I know it's a big no-no to have blankies and things in a baby's bed. However, we feel safe doing it because she's on the apnea monitor. We'll gradually take these things away as she gets more used to her new world. At least we've been able to get her away from sleeping on her stomach, which they do sometimes in the NICU. We've pretty much only had her on the monitor at night when we're sleeping. She hasn't had any events either, except for one brady the first night which we think was a false alarm anyway. Yay! I'll have to take a picture of her with her leads on soon. She has a soft belt that goes around her chest, and under her clothes it makes her chest bulky-she looks like a bodybuilder. Ha! Another element of the NICU we haven't been able to let go of yet-charting intake and output: I'm sure that soon we'll feel comfortable enough to stop this nonsense, but for now it provides peace of mind that she's eating enough. I can't blame us, really; she only just learned to eat again a little over a week ago! The breastfeeding hasn't been going so well. Willow is thoroughly nipple-confused. She much prefers the bottle nipple, with which she hardly has to suck and the milk pours into her mouth. Who wants to put in the effort with a real nipple!? We're going to keep practicing though, and hopefully we'll figure it out eventually. There's just something a little strange about pumping your breasts while at the same time feeding your baby a bottle.

It's been so damn cold here since Willow got home, we've pretty much been confined to the house. Yesterday it finally hit 60, so we ventured out for a walk. Scout was so happy! We used another baby carrier we got-it's made an appearance in the blog before, but with a pillow in it instead of Willow. Willow really liked it and slept so soundly that we kept stopping to make sure she was still breathing! It was so great to get outside and get some exercise and fresh air. The last few months I've been outside very, very little. It was really starting to get to me. The exercise, too. I've been getting none. Although I'm super-skinny from all the pumping, I'm also in the worst shape of my life. I'm one of those skinny-fat people. One good thing I've noticed about baby-wearing is it really works your thighs. When there's a baby strapped to you and you need to pick something up off the floor, or get clothes in and out of the washer, or get dishes in and out of the dishwasher, you can't really bend at the waist too much or he baby will sort of fall away from your body. So instead you end up doing lots of squats. My thighs are burning! If I ever get out biking this summer, hopefully this will help. Here's some more pics of our little girl enjoying her new home:

Willow Needs a Baby-Sitter

Hi everyone,

It's Willow's 4th full day at home. Things are still going well. The first day went so well, I think it made me overconfident when I wrote that last post. Willow does cry. We are sleep-deprived. Our house is a mess. But we love it!

We gave her a bath last night, which was fun:



Willow had her first doctor's checkup today. She's gained 3 ounces since being discharged! I was so relieved. The feeding thing has been a constant worry. She's been doing good though, and the weight gain proves it. She's now 7 pounds, 7 ounces. She also got some immunizations today. She gave three super-loud screams after she was stuck, and then passed out. It was the loudest I've ever heard her scream; but then, I was never around when they did painful things to her in the NICU.

Josh went back to work today, so I'm adjusting to my (short-lived) stint as a stay-at-home mom. I've got about 6 weeks of leave left. Then, we're having an assortment of aunties and grandmas helping out to care for Willow when I go back to work. But after that, she'll still have several months before she's really supposed to be in day care and around lots of other kids. Her immune system is just too fragile, and with her Chronic Lung Disease, even catching a cold could hospitalize her during her first year. So what we're looking for is one person who could come to our house and take care of Willow. Or maybe Willow could go to their house. Does anyone know someone? Of course, the person must have experience with infants, have references, and all that good stuff. Willow has high standards! We haven't worked out the details yet of exactly how many hours per week it'll be, or the pay, or exactly when it'd start. But I wanted to put the word out now, even though it's pretty early, because I bet a lot of readers will drop off now that Willow's blog is no longer an exciting micro-preemie blog but a boring old new-parents blog. So please put the word out if you know someone who might be interested and have them contact me at 906-281-6669 or llschaefe@yahoo.com.

HOME

Hi everyone,

Yes, we made it home. For real. I still can't really believe we have a baby. In our HOUSE! Whoa. The car ride home yesterday was uneventful, with Willow sleeping in her car seat the whole way. Before I talk about home, though, I wanted to share a few pics of Willow's last day in the NICU. Everyone was happy for us but sad to see her go. As nurse Allison said, "the NICU is losing its mascot!"

As happy as we were to leave, it was a little sad too. We will miss a lot of the nurses and other staff. Some of our favorite nurses weren't around the past few days so we didn't get to say good bye. Also, Dr. Frei, Willow's main doctor, was off, so we didn't get to say good bye to her either. We're so thankful to all of them for the great care Willow got at MGHS. We'll miss all of you! We'll be back to visit and we'll send pictures.

Here's Willow looking out the window at the world she's about to meet:



Bye bye, NICU!




Bye bye, lactation/pump room. It's been real!



We were glad we had nurse Kathy for Willow's discharge day. She's been one of our favorites.



Could we look any happier??






When we got home, there was a sign and some balloons for Willow. We still don't know who's behind this but we have some suspicions.


Emily stopped by and we sat on the patio and decompressed. :)


I couldn't wait to try out the sling.



Turns out, Willow absolutely loves it! Bonus: the physical therapist at the hospital said slings are extra-beneficial for preemies, who tend to have "high muscle tone". The sling causes them to curl up and bring their hands the "the midline", which is good for them.


Our first night was pretty good! We got a reasonable amount of sleep. She didn't cry. We took turns waking up to feed her. We set the alarm to make sure she got fed every 3 hours or so. I guess that might sound like the opposite of what a lot of parents do when their baby is new. Most people want their kid to learn to sleep through the night, I think. But it's so important for Willow to keep gaining weight, we are going to try to stick to the every-three-hours, 155-mLs-per-shift feeding schedule of the NICU, at least for awhile. So far she's done good with her feedings and has been eating the amounts she should.

Today has been remarkably chill. We woke up and sat Willow in her little bouncy chair while we ate some bagels, then Josh left to run a bunch of errands, and I've just been wearing Willow around in the sling while catching up on stuff around the house, taking occasional breaks to feed and change diapers. It's not nearly as stressful or chaotic as I expected. It's a little chilly outside, so we haven't been on a walk other than around the yard. Willow's not hooked up to her monitor while in the sling. She's close enough to me and I'm keeping an eye on her, so I think I'd notice if she stopped breathing or had a brady. We had the monitor on her last night though. It went off twice, but it was the alarm that means a lead is loose due to wiggling, not the alarm that means she's having an event.

Scouty's reaction to Willow was about what we expected. I tried to get her to come over and meet Willow and I thought she'd at least give her a sniff and then turn away, but she refused to even look at Willow or sniff her. She been doing a lot of sighing. Last night, every time Willow made any noises, Scout would let out a huge sigh. Daria seems to be scared of her.

Josh mentioned in yesterday's blog about keeping Willow isolated. That doesn't mean people can't come visit. Just call first, and don't come if you're sick, or have been around any sick people, or feel like you might be getting sick. Also, no little kids, please. They're too germy. :)

Well, I better get going. Lots of stuff to do!

This is awesome!!!!!!!!

Bye bye NICU!!!

Hey,

Just a very quick post. In a few minutes we will be exiting the NICU with our baby girl. Willow is finally coming home. Keep checking the blog. It will now be Willow's baby (at home) blog, and we'll update it often. Thanks for everyones support during this crazy time in all our lives.

For anyone living in Houghton, we need to keep Willow isolated for a little while. So please call before you come over.

Yahoo,

Josh

So far so Good...(!)

Hi everyone,

OK, I'm using an exclamation point now...just one. Willow had a good night. The paleness and slow heart rate didn't amount to anything. She was really fussy and we were getting worried but then she took the hugest poop ever and I think that was the problem. She's been feeding well, sleeping well and so far everything is on track. They're talking tomorrow for discharge. Josh and my mom are coming down today after work. My dad is in Minnesota right now.

The other good news of the day is that Willow's doctors decided her blood pressure issue is under control enough now that she doesn't have to go see the pediatric nephrologist (kidney specialist) anymore. Before she was supposed to be discharged the first time, they said she did; they even made the appointment and everything. But now it's been cancelled. I'm glad!

The not-so-good news of the day is that Willow has to go home on an apnea monitor. They've rented one for us. Someone is supposed to be coming to train me on how to use it today. From what I've heard so far, they're a pain in the butt, because 99% of the alarms are false alarms, and they're super loud-apparently even more obnoxious than the monitors here in the NICU. But supposedly she only has to be on it when she's sleeping or in her car seat or anytime we're not watching her. So we'll see. I'm a little bummed about that, but if that's what it takes to get Willow home, I'm all for it! I guess I might appreciate the peace of mind as well.

I was organizing Willow's stuff today and I found three new books, still in the B. Dalton bag. I don't know who bought them for her, but thanks to you, whoever you are! Throughout Willow's NICU stay, gifts have just appeared by her bedside. People are so thoughtful. It has meant a lot to us. Not to mention all the gifts that friends and family have sent. It seems like every day there's something for Willow in our mailbox.

Here's a shot of the Landmark. Luxury with a capital L!




Oh, by the way, poor Suby is totaled. D'oh! Oh well. I care very little about that right now. Nothing is a big deal when compared to Willow's homecoming!

Congratulations to my old friend Brooke, who gave birth to her second daughter, Sadie, a few days ago! She's beautiful! www.babyspins.blogspot.com

Let's Try This Again...

Hi everyone,

Lindsay here. OK, I'm back down in Marquette. I got a call from the NICU today while I was at work and they said Willow's been doing so good that she's ready to go home. However, they did want us to room in for a couple more nights just to make sure she doesn't backtrack again. You'll notice I haven't utilized any exclamation points yet. I'm very leery and trying not to get too excited this time. It just seemed soon to me; I mean, she'd only just started doing good in the previous 24 hours or so, so it sort of seemed like they were jumping the gun. Of course, if they say she's ready, who am I to argue? It was just sort of a shock because I was thinking maybe this weekend or next week. So, I left work and headed here. I was very happy to see that we got "The Landmark" rooming-in room this time. They have two rooms in the NICU, The Landmark, named after a fancy hotel in Marquette, because it's so luxurious (read: bathroom, TV and a window!), and "The Fishbowl", named because it's tiny and has windows all around that lead to the hallway and the NICU. It has no bathroom or TV. That's the one we had last time.

When I got down here, Willow's nurse made me even more leery by saying "hm, it's strange, her heart rate has been so low today, and she's sort of pale". So...I don't know what to make of that. I guess all I can do is hope Willow behaves herself this time. One positive thing is that Willow is off of the meds she was on last time we roomed in. Before she was on Sodium Chloride and 2 different diuretics. Now she's just on vitamins. And she's been sucking like a champ with the regular yellow nipple. Go figure.

Keep your fingers crossed - only time will tell if this is the real deal!

Lindsay

7 Pounds!!

Hey everyone,

Josh here. Lindsay's already in bed, so I thought I'd do a late night post. Willow's been doing good since she got her transfusion. Over the weekend she did really well nursing with Lindsay, and today she's taken every feed with the bottle. They tried using a new nipple for the bottle feedings today, and she seems to like it. Her nurse said she's pretty much just been sucking non-stop during the feeds and not having any problems. Were very hopeful this will continue. However, I don't want to get to excited yet and jinx it.

Willow hit 7 pounds today. It's a number that is hard to fathom for us. When she was born at 1 lb. 13oz. even 3 lbs. sounded big. Now she's 7 lbs. and gaining weight. Both Lindsay and her brother were 7 lbs. 1 oz. at birth. I'm not exactly sure what I was, but my mom has told me I was perfect 10's in the apgar scores. I'm sure you all already figured that out :)

Willow got her first look at the outdoors on Sunday. We walked her over to the window and looked at the pretty trees.
Don't be alarmed at the IV sticking out of her head. I guess they couldn't find a good vein in her hand, so they went to the head. Apparantly it's very common. In fact the baby right next to Willow had one as well. It looked much worse than it was for Willow. She didn't seen to mind one bit. On Sunday they took it out and it hardly even left a mark.


She's really looking like a baby lately. The brought in a swing for her to sit in. She likes it alot. It's got a bunch of flashing lights and makes some noises. However, none of that matters when your sound asleep.



Hope you all have a good week.

See ya,

Josh