Not Your Normal Milestones

Samuel is hitting major milestones! Thursday we went for our first appointment with our local pediatrician. I know that doesn't sound too crazy, but each time he has come home, Samuel has been readmitted to the hospital the day before our local appointment!

Also, we went to a few routine follow-up appointments today back at MUSC... and they didn't keep him! Our family is still together at home... amazing.

It was a great day of appointments - first with the pulmonologist. Since Samuel came home, we have continued to tweak things... all of the tweaks were based on his co2 levels and doctors recommendations, not just paranoid momma :) We did a blood test at the beginning of the appointment this time, since Samuel's happy smile can be a bit deceiving, and things came back great. YEA! We will keep all respiratory stuff the same for two more weeks, then we go back to the pulmonologist to re-evaluate. In the meantime, if we feel it's necessary to check another co2 level, our home nurse is able to pull it from his PICC line and our local hospital can run the numbers.

The second follow-up was with the neurologist. I had never met him before - he seems great! We went over all of the MRI's taken before Samuel was discharged - so crazy to see your child's brain on the computer screen, the detail is absolutely amazing. He still has slightly swollen ventricles, but it doesn't appear to be affecting brain development... we will continue to watch this. We also wanted to check Samuel's eyes because they go a little googly sometimes. It was really bad when he woke up from his medical paralysis last July, but has gotten much better since then. So far we see no neurological connection to this, besides of course that your brain controls your entire body :) We think this will be followed by ophthalmology, which is great.

The third follow-up was a brief visit with the high-risk clinic doctor, who was one of his attending physicians in the NICU. She came in to say hello, check him out, ask a few questions, and make sure we are tied into services at home (PT, OT, Speech). Another good visit!

Three for three is pretty great! We are back at MUSC almost once per week, with multiple doctors each time... here's hoping all of our days are this smooth.

Our beautiful girl loves to laugh!

She also loves to explore, although usually she checks out the entire room within minutes. This was one of her quieter moments :)

Cheese!

Olivia picked up some extra oxygen tubing... which I realize sounds strange... but I love that she's sharing it with Samuel!

Samuel looks pretty happy to finally make his local pediatrician visit.

Contemplating...

I can smile even bigger when I close my eyes!

I'm pretty sure Samuel picked this up from one of his nurses, but we certainly reinforce it at home :)

I love my brother and sister THIS much!

George has been snapping for months! We all take credit for teaching him this skill, but I'm pretty sure it's all him.

The wiggly giggler - one of the favorite toys :)

Sweet boy :)

Happy Easter!

What an incredible weekend! Where to begin...

First, it's Easter! Not much is better than that :)

Second, family and friends galore! This was the first holiday, EVER, that our family of five spent together. Not just taking a photo together during our five-minute visit, but we actually spent the entire holiday together. That's right, Samuel is still home! Tomorrow is a week... this is a new record for him. My heart beats faster every time I think about that. YEA!

We also had Crazy Cool 'Aunt' Brooke in town all weekend... and Omi, favorite-cousin-Madison, Aunt Nancy, and Kristen and Josh (we need to think of more creative names for them) all came for a big lunch on Easter. Our first dinner party in the new house - go figure we waited until Samuel was home, but I guess it makes sense, now we can't go anywhere so we ask people to come to us :) It was an awesome day! Especially since the guests all brought food... I'm guessing they didn't want to leave the cooking up to me - it would have been PB&J's for everyone :)

How bad is this... not a single group picture. Not even a picture of the babies together on Easter, and they were all dressed up! But a few cute ones from the weekend...

Samuel is home, and once again loving it! Lots of new toys to explore...

Turning on the charm :)

Samuel's first animal cracker! A bit of an error on BB's part... I thought this would be fun for him to chew on, until he accidentally bit off a leg. I've mentioned babies with trach's having oral aversions, and even though Samuel's isn't that bad, that little animal cracker leg hit the back of his tongue and I saw new shades of red and purple. Oops. But get this, he swallowed it! Not sure it's the positive experience I was hoping for, but I was impressed just the same. No more animal crackers for a while.

Morning Samuel!

Morning mom!

So proud of standing... and such a cheeseball!

Passed out - awwwww. CC 'Aunt' Brooke has the magic touch.

Easter weekend is a great time to celebrate - with drums!

And then there's Miss O, preparing for her weekend... thanks for the hair-do, dad!

Happy clapping!

Striking a pose!

At least I got one of them in their Easter outfit :)

Third Time's a Charm

We are on track to bring Samuel home on Monday! YEA! Only six days after being re-admitted... last time it was almost three weeks. Six days is much better :)

Monday will be a busy day... we have High Risk Clinic (this is a follow-up clinic at MUSC due to their prematurity, it's really great) with George and Olivia at 12:30, then a family care conference with Samuel's team around 2:30, and then we bring all three babies home. Wow! We will need two cars and at least three adults because Samuel has a lot of gear, but it's totally do-able :)

A few catch-up photos...

Samuel's first car ride! This was when we brought him home last Friday. He was so good!

You would never know these are all hospital photos because Samuel is such a happy boy :)

His new favorite book... Eating the Alphabet. Too bad mom can't pronounce Xigua!

This is the "I'm a little worn out from sitting up" pose... that's right, Samuel is starting to sit up on his own :)

Loving my musical book and the flashing lights!

Nothing wrong with the good old favorite rattle.

Love this! Samuel has started sucking water out of a syringe! I know that sounds odd, but this is so great for him! He is making more and more strides towards eating and drinking every day :)

Can't forget Olivia and George...

Brotherly Love

When Samuel was home last weekend, he and George had a few moments that melted our hearts. We can't wait until they can tackle each other the way brothers should... but for now, we get excited about the little moments :) This is one that we caught on film...

George: Hey Samuel, whatcha doin'...
Samuel: Hey George, I'm just chillin'...

George: This is a pretty cool toy, let me show you what it does..

Samuel: Thanks George, you're pretty cool.

George: Hey mom, I like playing with my brother! Thanks for bringing him home!

Shiner

What an eventful week! Including, our very first shiner :) Olivia is always on the move... this time she got a little ahead of herself and met the hinge on the door with a bit too much force. Throughout the past year we have learned a ton of medical stuff... but I was at total loss for a cut! Luckily, no stitches necessary.

Same day as the incident... notice that nice left eye... my self-soother :)

The next day... back to normal!
DB likes to brag about his rough and tumble daughter... who loves to wear bows :)

More fun around the house...

I guess George didn't get the memo from Olivia that doors can be dangerous!

George in his sweet, southern boy outfit :) Love it!

Don't worry DB, even though George looks great in his pleated outfit, he can still palm a basketball :)

Olivia playing peek-a-boo with Lambchop...

... and their special game "ouchie, ouchie, ouchie," with dad. Not sure this will be very funny when something is actually ouchie :)

The couple days Samuel was home last weekend were awesome!

Lots of smiles and playtime :)

And dancing! This photo doesn't do the moment justice... Samuel was rocking back and forth so hard he almost knocked his seat over! We can't wait for him to be home again.

On the road again... again...

Yes, really... we re-admitted Samuel to the PICU again on Tuesday evening. I think I'm reaching a new level of disbelief. I really can't believe this is our life... I had no idea you could be in the ICU this long. I know that sounds naive, and maybe it's more that I never thought in a million years our child would be in the hospital this long, but I always thought of it as; you get sick, you see a doctor, you get a treatment plan, you get better. Man, did I have it wrong.

Anyway, off the soap box and on to the more important things :)

On Tuesday we (the nurse I mentioned and I) took Samuel to Charleston for a routine, follow-up pulmonology appointment. Besides not being happy about the 7am departure time, Samuel was wonderful! At the appointment he was a complete ham. Every time a nurse, NP, or doctor came in he was a total show-off... smiling and dancing. This is exactly how he was at home - when he was awake. That was the alarming part - he slept a lot during the four days he was home, but he was so happy and playful whenever he was awake that everyone thought things were going okay. In fact, he looked so good that the docs were fine sending us to get lab work and then home - they would call us with the results. We tested basic electrolytes and his CO2 and bicarb levels. Because of all his sleeping, I was worried about the CO2 and bi-carb, and also because those were both high the last time we was re-admitted. But again, he seemed so happy that with each smile our worries were less.

We were about 15 minutes from home (it's a good 2-hour trip when you factor in loading and unloading Samuel's gear) when the NP called us... Samuel's electrolytes were fine, but his bi-carb was up and his CO2 was really high. He looked comfortable, so no ER or ambulance, but we were instructed to bring him back and re-admit him right away. Ugh. Tears. Disbelief. Heavy heart.

I dropped off the nurse and picked up DB and we were back to Charleston. When we got there, Samuel was once again an absolute ham! We joked about our "sick" baby because he had to be the happiest patient in the ICU... it's not really that funny, but sometimes you have to find some humor. We answered questions, got him settled, and tucked him in for the night. It killed us to leave him there.

The big question is why his CO2 keeps rising... which is very bad. (He's not having a problem getting oxygen, but he's having a problem getting rid of CO2, which is what we all exhale.) There is also no way for me to measure his CO2 at home, and even if I could, there is nothing we could do about it except take him back to the hospital. There are a few thoughts and theories, but no one is really sure what is going on. Right now we are observing and they are making a few minor tweaks to vent settings and his trach. I was hoping this would be a really short stay, but his CO2 is still elevated and I have no idea how long it will take to not only fix this problem, but also to get a plan in place so that it doesn't keep happening.

There are a few bright sides :) When I got home that night I opened up a 1-minute prayer book, and while I realize it's pretty sad that I only had time for a 1-minute prayer, talk about a nice kick in the pants! It was exactly what I needed! Basically, it was about recognizing all of the perfect provisions God has given instead of just the things that don't go my way, turning my "whining into rejoicing", and focusing on the positive. SO... today, even though Samuel's CO2 was sky-high, he did not have a major event. We were able to get to the hospital safely and calmly, and without needing emergency services. Our wonderful nurse was with me and was the calm that I needed. DB has a good friend and fellow soccer coach who was able to cover practice last minute so that he drive to Charleston... good thing because he has the super-human ability to cut through traffic like a hot knife through butter. Our good RT friend happened to be visiting that day and was at the house when we pulled in to pick up additional supplies and switch drivers... he followed us all the way back to Charleston, which was a huge sense of comfort, and helped us cart Samuel up to the PICU! Samuel was not in pain, but rather happy and smiling! We miss our baby each minute he is not home, but these things considered, there are reasons to be thankful :)

The Way It Should Be

Our family is together again! YEA! What a sweet, sweet feeling to have all of your babies under the same roof. I think I almost forgot what that felt like... I love it!

Samuel came home on Friday afternoon and we have had a wonderful few days. I also think I forgot how happy he was the last time he was home - his smiles are huge :) We are back on the learning curve, giving meds, troubleshooting the ventilator and feeding pump, mixing Samuel's cocktails, suctioning, etc. It is so wonderful to take care of him! Makes me feel like his mama - there's nothing better than that.

One great piece of news - we met our primary home nurse, and she has trach experience! This is a huge prayer answered. Especially after the last couple weeks, I was terrified to even think about leaving him when I have to go to work. With Samuel, knowing how to do an emergency trach change is part of the package. So embarrassing, but when I found out she would be full-time I actually choked up and shed a few tears... in front of her! We are still looking for a few backup nurses with trach experience in case she has to miss a day, so if you know anyone interested...

Pictures to come... we are doing really well... but not getting much sleep yet :) Off to try and remedy that.