Monday, September 28, 2015

Harper's Story...NICU Week 3...

Harper's third week in the NICU definitely had some ups and downs. We started the week with some ups - including this adorable photo we got of him during his Sunday morning bath. He was wide eyed and loving the short break from his CPAP. I cherish this photo and it's currently the wallpaper on my phone. 



Everything was pretty much "status quo" for our little guy until Wednesday when he decided to have a lot of spit ups and thus a lot of spells - upwards of 7 in one day - which is way more than the one to two he was typically having. So on Thursday after drawing some blood to confirm what he already suspected, a low red blood cell count, his doctor ordered for him to have a blood transfusion. I'll admit, at first the idea of a transfusion didn't sit well with me - something about someone else's blood going into my baby was a bit nerve wracking, but then his amazing (yep, there's that word again) nurse put all my fears to rest. Upon visiting that day she told me that Harper was doing so well and that he was clearly enjoying his "Spa Day." Ha, "Spa Day" - I liked the sound of that. It all made sense too, because of the transfusion they stopped his feeds, so instead he was just getting IV fluids and electrolytes and all that fresh blood and thus red blood cells, were helping move oxygen around his body, helping his breathing and quite literally breathing new life into our little guy. He went spell free for 36 hours after that...a "Spa Day" success! 

Now while Harper was having a tough Wednesday, so was I. After two days of some pretty uncomfortable stomach and back pain, and then an afternoon of some serious sharp pains in my right side/back I called my doctor who instructed me to head to the emergency room to get checked out. Hello emotional roller coaster! So instead of heading to the hospital as I had planned, to visit Harper, I was heading there for myself - *sigh. After some tests and a bit of waiting around (holding our breath as best we could - emergency rooms are yuck - especially when you are trying with all your might to stay healthy so you can visit your baby in the NICU) I learned I had a kidney infection - the result of a couple urinary tract infections that I didn't really realize I had - which were likely due to the catheters I had earlier in the month during my various hospital stays - you know, because life hadn't been interesting enough this month. So antibiotics, lots of fluids and rest were ordered up, and luckily since I didn't have a fever I was told I'd still be able to visit Harper - phew! I think I need one of those "Spa Days" but maybe I'll take an IV of chardonnay instead! ;) 

The rest of the week he was still having a bit of tummy troubles - lots of spit up, or emesis to be all fancy and medical about it - and still a lot of gas in his belly. He also managed to snap his PIC line and pull his feeding tube out on Friday morning - what a little trickster! Instead of a new PIC they just put an IV in his arm as he'd hopefully be off the IV soon. Meanwhile, the emesis episodes would typically cause a spell and thus the cycle continued a bit for Friday and Saturday. It was clear that CPAP was to blame and so on his three week/32 week birthday I spoke to his doctor about going on a trial run of removing it...he was open to the idea and agreed that if he had a decent night, he'd remove it in the morning. 

So that's how week 4 in the NICU will begin...stay tuned. 

In the meantime, here are some pictures from one of his bath days this week. 






Friday, September 25, 2015

A wealth of good wishes...

I'm still pretty overwhelmed with the sheer amount of support, well wishes, good thoughts, prayers, and goodies we've received since Harper was born. There's been a pretty steady stream of flowers, balloons, gifts and treats arriving at our house. Not to mention the huge amount of friends, family, and colleagues (old and new) checking in on his progress and cheering him on through Facebook, Instagram, emails and yes, even some cards in the actual mailbox. :) 









Neighbors, friends and family have been bringing meals which has been super helpful especially with the start of school, t-ball practice and of course hospital visits. Very nice being able to not have to worry about what to make for dinner - and I have to say, we've had some pretty great meals - and Adam is even branching out and trying new things as a result. 

It's a great feeling knowing so many people are routing for our little guy and we can't wait to get him home so we can start introducing him to you all - of course that is if you've had your flu shot. ;) 

Thursday, September 24, 2015

Batter up!

Adam is playing his first season of baseball this fall and we couldn't be more excited. He is starting with t-ball and his team is the Mudhens. They are the most adorable group of 6 year olds and only two weeks in seem to already be improving their skills and making friends and great teammates with one another. 

His coach has been great working with the team on fundamentals - when the kids first ran the bases most ran in the right direction and most skipped actually touching the bases - so yeah, learning the fundamentals is key. 




Their first game was rained out which was probably a good thing as it meant they got in two practices before their first game. It also meant their first game was their "Under the Lights" game (each team gets one of those a season - fun for the little guys). They had pictures first which was adorable. Most of the kids are swimming in their uniforms, it's too cute. Then it was on to the game. They play four innings and each kid gets to bat and they don't count outs. It's really just all about learning the sport and having fun. The "Under the Lights" game meant they also had an announcer. It was pretty cool hearing Adam's name called out during the starting line-up and then hearing it called each time he came up to the plate. Quite an experience for both players and parents! 





Adam did so great in his first game. He played first base, right field, pitcher and left field. He hustled after every ball and everyone raved about what an arm he has - though we need to work on teaching him to change the speed/strength of his throws based on how far away the person he is throwing to is - yikes! And his batting - well, he's a slugger that's for sure! 




video

Can't wait to see what the rest of the season brings and I know we'll have a lot of fun cheering on the Mudhens in the process. 


Harper's Story - NICU Week Two...

Harper's second week in the NICU was pretty smooth - we had sort of found our rhythm with when we would visit, our routine for helping out while we were there and we had started to become accustomed to the various beeps and alarms - and more importantly knew what to do when it was, as I call them, a "scary noise." The "scary noise" is the one that goes off to indicate that he's having a Brady or "spell" which means he's forgotten to breathe for a moment and needs a little stimulation to remind him to knock it off essentially. To help with this they give him an IV of caffeine - I'm not kidding - this kid will be enjoying Starbucks with me before long. Luckily he is a rock star and doesn't have very many of those - typically one or two a day - and while I have been holding him when he's done it, I've very calmly rubbed his back and sure enough he starts breathing again and the "scary noise" goes away. Even better is that more often than not he self corrects and starts breathing again on his own, so like I said, rock star. 

One of our visits we got a little surprise and got to spend some time with Harper while he had a little break from his CPAP. It was amazing to hold him and actually see his face, admire all his beautiful blonde hair and of course kiss him like crazy! It didn't last too long before he needed to have his mask back on, but we enjoyed those moments so much and definitely enjoyed having some photos to share of our handsome boy. I think Adam mostly appreciated being able to see his brother without his mask on - he won't admit it, but I imagine it's a bit overwhelming and scary for him to see pictures of his brother all hooked up to machines. Anyhow, this was a good day for sure. 






video

Week two was all about increasing his feeds and thus being able to lower the extra IV fluids and lipids he is receiving. He gets those through that PIC line in his ankle so the sooner he can get up to full feeds and off of those the sooner he can have that taken out - a milestone we're anxiously awaiting - mostly because it's one less wire (or "spaghetti" as some of the nurses call it) to manage while we hold him, change his diaper, etc. The increased feeds have gone well for the most part. We've had a few bumps in the road as he's had some spit up episodes where they've had to cut back a bit. When this happens they examine his belly and usually do an X-Ray, the results of which have always shown just an excess of gas in his belly - this is caused from the CPAP forcing all that air into his body - so it's nothing to really be concerned about, and they have ways to try and lessen that gas build up - mostly by having him sleep on his belly. Needless to say, we'll all be happy when he get have that mask off - Harper most of all. 


I got to help give Harper a bath for the first time during week 2, so that was fun. It's basically a sponge bath, and he was not really a fan - I think he was just cold. I didn't mind though because he had his mask off while he had his hair and face washed so I got to spend more time staring at that adorable face of his. This was just another great way that the nurses really try and involve the parents in their babies care, which really helps a lot. 

By the 2 week (31 week) mark he was up to 3 pounds (almost) 4 ounces. He has some new neighbors including a little boy right next to him. I like to picture them chit chatting in the middle of the night when the nurses aren't looking. Comparing battle wounds, bragging about their CPAP levels and talking about the pretty nurses. 


Monday, September 21, 2015

Adam is off to First Grade!

First grade - wow! Somehow sending Adam off to 1st grade seemed a bit scarier than his first day of Kindergarten - maybe because I know he'll be asked to be more independent - in charge of finding his own way on and off the bus once he gets to school, sitting in the lunch room without his teacher keeping an eye on the class, only one teacher in the classroom instead of two, etc. etc. The good news is Adam was so excited about starting school - no kicking and screaming going on in this household. 

When we got his letter telling us who is teacher would be I was confused at first because it said Mrs. Jaeschke, who was his Kindergarten teacher. After calling the school to see if there had been a mistake I happily learned that she was moving up to teach the first grade (which is what she originally taught when she first came to Aldrin). I was so excited and called Adam immediately to tell him (he was enjoying the last few days of "Camp Grandma & Grandpa!") He was thrilled and ran around the house sharing the good news with both Grandma and Grandpa with such glee - honestly that's the best word to describe it. She really was a fabulous teacher and the fact that she already knows Adam and his learning style, abilities, personality, etc. was a comfort - especially with everything going on in our lives at the moment. 

So when the first day of school rolled around we snapped the traditional front porch photos, headed to the bus stop and sent him off to start this next adventure knowing he was in great hands. Though of course I anxiously awaited his return all day so I could find out how he liked the first grade - happily his first words after running off the bus were "Mommy, I wish that all weekends could be canceled - first grade is just too fun!" Now that's what I call a successful first day! :) 






Harper's Story - NICU Week 1...

Our first week with Harper was pretty much an emotional roller coaster. We felt everything from excitement of having a new baby to sadness that I got to leave the hospital but without my baby, to joy over tiny milestones he was reaching and nervousness over how we were going to handle all these emotional ups and downs for the foreseeable future...probably every other possible emotion was felt during that first week as well - like I said, roller coaster. 

The amazing crib sign that Andy, Adam & Kathleen put together. 

His first night nurse put this together for him - look at those tiny feet! 

The first two days while I was still in the hospital it was pretty nice to be able to just pop downstairs for a visit. Of course the downside was that there wasn't much I could do other than stand there and look at him and talk to him. He had his IV fluids going in through his umbilical chord so holding him was not an option. I'm not sure I'll ever forget seeing him in the NICU for the first time and seeing and hearing him cry and knowing there was nothing I could do to soothe him - or at least that's what I first thought and upon seeing the tears flowing from my eyes, his amazing (I'll probably overuse that word as I talk about his nurses) nurse quickly let me know that I could try giving him his pacifier. Happily that was all it took and not only were Harper's tears gone, so were mine. 

We learned other ways we could interact with him, like placing a hand on his head and another on his feet. It wasn't much, but we were taking what we could get. We also learned we could help take his temperature and change his diaper. Andy was the fist one to tackle that job - I was a bit nervous at the thought considering all the chords and wires, but Andy was a rock star (as usual) and showed me that it wasn't impossible so the next time I happily took on the task. We also got to help with his oral care - basically taking a special q-tip with water and cleaning out his mouth. I also got to do this with some of my milk which was nice. I also got to hold him up while his nurse changed his bedding. These tasks aren't much, but we learned early on to take what we could get. 








Harper checking out the card Adam made for him. 

On his third day in the NICU we learned that he would be getting his PIC line in - this means switching from the IV going in through his umbilical chord to a vein in his ankle - and it also meant after 24 hours we'd be able to hold him. This was great news as we had been told it would likely be on the seventh day that the PIC line would go in. 

So on the fourth day (Tuesday of that week, I'll never forget it) I was able to hold him and do skin to skin with him. It was an amazing feeling, one that I never in a million years thought would be such a novelty - I mean, holding your baby should be something you can do whenever you want, right? This new normal is teaching us otherwise, but it didn't take away from an amazing first real contact with our son. 


We went back the next day and had them wrap him in a blanket so Andy and I could both hold him during our visit. 





Before we knew it, after several more visits, diaper changes, and snuggle sessions, our little guy had hit the 1 week/30 week mark. He weighed in at 2 pounds 12.4 ounces - was slowly gaining back the little bit of weight he'd lost and his breathing doing amazing. I'll admit the first week didn't really fly by as I'd hoped, but we're learning to take things one day at a time and enjoy the small moments.