Autrey and Shilo: March 2019

4 months old today! Yesterday I left at noon to go to Scottish Rite and didn't arrive back home until 6:30. Such a long day. Unfortunately it isn't uncommon to spend large portions of my day at appointments for Robbie and/or myself these days. Here's his update:

Robbie had his 1st x-rays of his left hand. Good news is they showed he has both an elbow and wrist joint. The doctor is revising his working diagnosis from ulnar longitudinal deficiency to arthrogryposis (basically stiff joints) and possibly amyoplasia (Lack of muscular development and growth with contracture and deformity at most joints. Robbie does have the internally rotated shoulder, extended elbow, ulnar flexed wrist, and displacement of knees). We have been given the green light to start doing stretches to improve range of motion, which made Stevan Autrey Duke happy. Robbie may need surgery anyway, but it's worth a try.

The lower extremity doctor said as soon as his braces are taken off he kicks them and they automatically dislocate. She had x-rays done while wearing the braces that showed his legs weren't dislocated in them, but also not in the correct position. On Monday the neurologist is going to give his thighs each a shot of Botox to get them to relax, then take molds of his legs in the correct position and make new braces. He may need surgery on his legs also, but she is still hopeful he will be able to walk someday.

If I'm being honest it's hard to see my baby not rolling over or hitting typical milestones of a 4 month old. I find my time and energy consumed with a long list of things I took for granted with Dylan and Colton. But for now I will celebrate his little victories and create his own list of milestones. He's sure nailed smiling and chatting!

Wow. Looking at these pictures 2 years later the emotions came flooding back.

Robbe got his G-tube/G-button and Nissen Fundoplication and Brain MRI when he was 3 months old. He was throwing up around 20 times a day with severe reflux, we found out later was silently aspirating, wouldn't gain weight (took him 8 weeks to get back up to birth weight and dropped off the growth chart). After two days of a sharp reduction in what he would take from his bottle feeds, we went to his GI dr, who told us to keep trying to feed him. The next day we went to urgent care because refused to eat completely, where they told us to try a slow flow preemie nipple and to go to the ER if his diapers stopped being wet. The next day we went to Cook Children's ER straight from Colton's baseball game and ended up staying for 10 days. Doctors said scary things like Failure to Thrive and he wouldn't survive outside of the hospital without a feeding tube. We were still processing his rare diagnosis of Arthrogryposis so this was really hard on us. He's come a loooong way since then. And, frankly, so have we.

Robbie and his tube are amazing and we are very thankful for this life saving technology. Managing his G-tube is difficult and CONSTANTLY on my mind as I frequently look at the clock and set alarms to give medicine, vent (tube burp), flush (tube drink), and run his feeds 5 times a day through his pump. Or when I clean up messes when the medicine port opens and he 'feeds the bed'. Or when I wake up in the middle of the night to the sound of his pump beeping because he has rolled onto the tube and stopped the flow of formula. Or when replacing the entire button when it gets yanked out (like it has 7 times). Or when stressing about paying $536 each month just for his feeding supply deliveries. Or figuring out who I can teach to use the pump so they can help occasionally babysit him--but we will ALWAYS be grateful it has allowed him to thrive, develop, and grow until he has the ability to safely feed orally.

This was the first day after the temporary NG tube was placed. Poor guy pulled it out twice in those first few days. And the tape eventually made the skin on his cheeks angry red:

4/15/2017: I definitely didn't envision taking Robbie's first Easter pictures while back at Cook Children's Hospital. He hasn't been able to swallow his feedings since Thursday night and has lost 1/2 pound since then and became dehydrated. He also hasn't pooped for a week. Broke my heart to hear him scream as they put in his IV and the NG feeding tube in (twice, since he yanked it out). We'll be here a few days. I am sooo glad Mom is flying in tomorrow night! Oh, excuse me. The nurse is here to draw more blood...😔

Mimi and Papa took the kids to the Fort Worth Zoo while we took Robbie to Urgent Care, the day before he was finally admitted to Cook Children's:

Allyson was kind enough to take and send me these pictures since Easter was the day after we went to the hospital and Robbie and I missed it. I'm grateful Doug and Mona were already here during the initial chaos to help with the older boys:

G-ma to the rescue! Her timing was impeccable and she ended up being a HUGE blessing during her two week stay. She was able to take care of the older boys and have fun with them while I was in the hospital with Robbie for the week and a half of his unexpected G-Button and Fundo surgeries. Words can't describe how stressful, overwhelming, exhausting, and life altering this experience was, but mom was there with her unfailing optimism to buoy us up. And her cinnamon rolls. Lots and lots of cinnamon rolls. I sure ❤️ my mama and miss her being here! See you in 33 days!!!

PS- Let's make the next trip FAR less eventful, mmmmkay?

I'm also grateful mom was already planning on coming for a visit the night of Easter. Her fun week trip ended up being a two week helping trip. She has been able to be to all 5 of his surgeries to date, a huge blessing to us. Helps ease my mom guilt when Dylan and Colton are having so fun. Eating lunch at school with Dylan:

Then back to the hospital to visit Robbie and I:

I forgot about this picture. Considering what he was dealing with it's pretty amazing he was still smiling. Melt my heart:

Ringing in his 3rd month in the hospital:

4/20/2017: Robbie's swallow study showed he's been aspirating all his feedings and has low muscle tone in his swallowing motion. That's in addition to severe reflux, confirmed in his pH study. So it's not possible to feed him orally right now. He's even having trouble with his own saliva. We are really lucky he didn't get pneumonia with all the fluids going to his lungs. He will be having a G-button surgery tomorrow afternoon to insert a feeding tube straight into his stomach. Also a Fundo so he can't reflux...or throw up. Or burp, if I understand correctly. And he's going to have an MRI to monitor brain function. Answers now can lead to solutions and he can get the nutrition to gain weight.

I am relieved to finally figure out what's been going on with Robbie and how to work towards resolving it. I'm very overwhelmed with all it entails, and all the therapy he will need afterwards to learn to safely feed orally someday...but I feel better than a few days ago as I was watching my baby projectile vomit and failing to thrive. The NG tube feedings have brought him up to 10 lbs! Still not on the growth chart yet, but it'll happen.

My mama heart hurts and there have been so many tears as reality of the latest situation is sinking in, but I truly have felt your continued love and prayers. I'm ever so grateful for you, my tribe.

It was pretty awful to watch them trying to get those 2 IVs. Arthrogryposis patients have a unique anatomy that makes them 'difficult sticks':

First peek at the Button:

Dinner at the Hospital Café courtesy of my sweet cousin, Meechelle, who arranged for us to have a hospital gift card to use to eat during our stay when the entire family would visit at night. The card lasted the entire 10 day stay because the hospital gives free food to nursing mothers and I was still pumping at the time.

One of the play areas:

Lego version of the hospital:

Mom and I with Alice, one of the sweet nurses that helped ease our transition to tube feeding. This picture was taken after we headed home but had to come back because we forgot some of the equipment (either the pump or IV pole I think??) in the room and she ran it out to our car:

Colton is the person in our family who eats 90% of the G-ma jam and he loves helping her make it:

Reading Key to the Treasure, one of my favorites growing up:

Cheering on the Mets...

...and the Pirates:

Going to church:

Cinnamon roll making:

Mom practicing piano with Dylan, featuring the Brick'em Young Salt Lake City and Washinton, DC temples he built:

Robbie at the surgery follow-up with Dr. Iglesias. I'm kind of sad you can't tell his outfit looks like doctor scrubs:

I will have to check Robbie's file because that time is kind of a blur and I don't remember if this was the charges from his NICU stay or from the 10 day surgery stay, but either way I was glad we had insurance that covered 100% after our deductible. Our insurance premiums and deductibles were both crazy high when Autrey worked for Vista Rehab, but I was glad we had it when EOB letters like this come in the mail:

HOW CUTE IS THIS TOUGH BABY?!? He's been a trooper. We're home from the hospital and he's better than ever! Robbie's happy, "eating" well, and hasn't thrown up AT ALL since his G-Button/Fundo surgeries. It's amazing! For me it's a full time job to pump milk, start his 75 mL feed, clean out the bag/tubing an hour later when it's complete, then do it all again 2 hours after that. Repeat, around the clock. Back to the no sleep newborn schedule for a while and I'm beyond exhausted from this whole ordeal...but I'm sooo happy he's recovered so quickly and gaining weight! Such a relief!

Look at this handsome little Button Baby, home from the hospital: