Roman's Heartiversary on January 21st!

 

Today is Roman's heartiversery! It's been 2 years since he had his heart surgery to correct his complete AV canal defect. Roman would not be alive if his surgeons had not been able to perform this surgery for him. We thank God for his surgeons and for the medical advances to make his life possible. He is doing great! His cardiologist said his heart looks good and cleared him to be seen in one year for his next checkup. Although he has a couple sutures trying to work their way out from his chest, it is otherwise closed, uninfected, and we've been told not to worry about them. 😊

He's had another rough autumn/winter so far with many illnesses. He had COVID and RSV again, as well as Strep, a couple ear infections, and a sinus infection. He did get his second set of ear tubes on December 12th, and that has been uncomplicated which is always our hope.  

We are, as always, so grateful for all the prayers 🙏. He's truly been such a blessing to each of his brothers and sisters and to Brian and I. Here's to another year with this little man with a big heart. 

His face has had this rash for a while due to all the slobber and snot that are constantly on his face.  We are alternating between vaseline and aquafor right now which has worked in the past, but not so well right these days.

Having his formula with Daddy and Luna while watching some football.  He loves football and basketball so far.

This morning, the day after his heartiversary, he had speech therapy.  I showed her his list of words that he can say, he demonstrated some of them during therapy, and she said that she has never had any child with Down syndrome with this many words.  She said he is really bright.  That just made my day!

Throwback Post #3: 191 Days (December 5th, 2022-June 18th, 2023)

This is just a snapshot of some different aspects of our life during Roman's 191 days with an open chest wound last year.

Where it all started...this was before the first minor day surgery to remove the broken sternal wires.

Waiting for Daddy to pick us up at the front of the hospital afterwards.

Unfortunately, four days later, on December 9th, he had a half a grapefruit sized swelling on his chest, and he had to have an emergency surgery to drain, clean it out, and place a wound vac on.  That began a longer journey than anyone expected to getting a closed chest on June 18th.

During these 191 days, he was hospitalized 5 different times and had 5 more surgeries in addition to the first two mentioned above.  There were two more serious infections, one PICC line, and countless ER visits, wound vac changes, wound checks, bedside debridements, IV's, MRI's, and tears shed.  It was rough for sure.  I had to have a bag packed every time I drove to get a wound check in case they admitted us which was two or three times a week for the entire six months.

The first wound vac (in my maroon fanny pack to keep him from pushing buttons) that he got was small enough to be drug around behind him and not pull on the suction.  However, it also had a super short battery life and had to be plugged in a lot more than just at naps and bedtimes.

Lots of swing time was one way we kept him happy and busy.

Learning to use his Honey Bear straw cup.  This was his first time holding it on his own too.

I was stuffing his clothes with a blanket for a long time because I thought it would make him more comfortable, but, as his CT surgeon joked, it was more for me than for him.

Defying all odds and learning to stand even with a wound vac!

We got a 5 foot by 5 foot playpen for the living room when we realized the wound vac was here to stay for a good while.  He needed a place to be able to play and not go further than his tube, AKA "leash," would allow.  It turned out to be a great investment, and, now a year later, even without a wound vac restricting him he is still happy to play in it.  Sometimes I'd say he even feels safer and happier within the boundaries of this comforting familiar area.

This is how he slept with the wound vac in the black bag at the bottom "hidden" behind his stuffed animals with the cord strung through the bottom corner under the mattress that plugged him in to the wall to recharge the batteries while he slept.  The cord did get wrapped around him a couple of times, once around his neck in the middle of the night.  Thank God that he started moaning and crying out because I was sleeping right next to him and was able to unwrap it.

The great thing about this play pen is that it rests on the ground and anyone could get in with him to play if he got bored...like in this picture.  The kids were constantly hopping in and out to entertain him.  His therapists got in sometimes too.

Here's one of our creative ways that we used to give him time out of the playpen and allowed some exploration.  We tied the wound vac into the wagon.  We still had to watch carefully to make sure it didn't get stuck on anything.  If he pulled too hard on it, it could loose suction and that would mean another 30 minute drive to the hospital ER for the doctors to replace it.  We did have to make that trip about a half a dozen times over the 191 days that he had the open wound.  One time it lost suction when we were out of town, and we made the decision that we'd seen it don enough times that Brian and I could do it ourselves.  We did it!

Fell asleep to "Sweet Child of Mine" while awaiting anesthesia.

Practicing eating food at the hospital which for the most part was majorly put on the back burner during this nightmare.

Brian and I took turns staying overnight with him when he was in the hospital.

 But on June 18th, his wound was officially closed and he took his first unassisted steps!  Praise God!  No one knows why this happened, and we just have o trust in Jesus on that one.  But, oh, how grateful we are that it is finally done.  As I write this in January of 2024, he does have a couple sutures trying to come out around his scar, but so far none are inflamed or any cause for concern.  Although we will continue to pray for his health daily.  He currently is sick again; he started showing signs of illness within days of finishing his antibiotics for the strep.  Oh, this boy!

Why back to the cardio-thoracic surgeon?

 Well, I mentioned before that Roman had a small bump on the bottom of his sternum.  In May the Cardiologist said it was probably fine and that it was most likely just a funny healing of the bone because a wire snapped in the hospital immediately after his open heart surgery.  He told me that if it doesn't bother him, it would be fine.  So, basically just watch it.

Over the summer it changed from a bump to being more of a pointy, bowing out of his sternum.It didn't bother him, but it was starting to worry me a bit.  After showing our dear friends (one's a doctor,) he said that we should get another x-ray because that is more than a bump.  I immediately called and scheduled a follow up with the surgeon.  

Within one week I was walking into the the hospital where Roman had his open heart surgery, almost eight months ago.  I started getting very shaky and anxious.  The whole place brought back all the memories and feelings of that two weeks we were in the hospital.  I chatted and joked with the nurses and clerks to get my mind off of it as we checked in for x-rays and then upstairs in the pediatric cardiac unit.   It helped a little and by the time the doctor walked in I was actually feeling better.  He was being very gentle with me which made me think this was not good news.  He explained first that the wire broke into two pieces. His body was rejecting the pieces as foreign objects and trying to push them out.  There is some inflammation in the area that is pooching out.  Then he told me that to fix it, it was just a small outpatient procedure to remove the wires, clean out the inflammation, and file down the bone a little.  He said many times how sorry he was, and that he has never seen a wire break in two before.  All I could think was, "Thank you, God, that they don't have to re-break the bone."  That was my fear.  I was imagining this wiggly little tornado that just learned to crawl having sternal precautions for eight weeks again.  

I had even had a nightmare that when the doctor lifted his shirt to look at his chest he said, "Oh no, this is not good.  He's retracting.  He's going into hear failure again."  So my subconscious thought this was going to be super bad news.  And it was only mildy bad news.  Right?  I didn't cry.  I just reassured the doctor that it was all fine and made plans to schedule wit his nurse this (if all goes as expected) day surgery in no particular rush because he said it wasn't urgent at all.  We could even wait until Christmas break.  We packed up the stroller and began the long walk back to our van in the parking garage.  

On this long walk, I was giving Roman and myself a good pep talk.  We can do this.  It sounds scary, but it will all be fine in the end; we'll barely remember the hardship.  It could have been much worse.  This is a quick surgery, like the ear tubes.  We can do this.  And then it started to break down into, But I don't want to have to do this.  I don't want to do this again.  Then there were some tears.  I didn't want to call anyone just yet, not even Brian.  I just needed time to process.  As we got to the roof of the parking garage, I had a missed call come through.  It was our adoption attorney.  I had been waiting to hear from him and so I stopped my dissolving pep talk and called him back.  He needed our available dates for the finalization court date.  That's super, happy news!  This sweet guy that I love and care for, fret over, and have sacrificed so much for is finally going to be one hundred percent ours and truly be our Roman Gabriel Charles.  God is so good.

Of course, this didn't make all things rainbows and roses, but it was a balm.  We set the surgery for November 4th, and we'll be updating his Caring Bridge Site about all this in a much more timely fashion than this poor, neglected, struggling blog.

Recovering at Home

Roman loves to be outside!  He has always liked the contrast of the trees and the sky.

Other than his prescription formula and his sternal precautions (AKA not picking him up under the arms; we have to scoop him like a newborn) until mid March, everything else is healed up and doing great!

He actually has to practice sitting in the highchair, believe it or not.  His core is so weak that he has to be reclined slightly and have the four point harness.  The goal is to get him to be able to sit while supporting him at the hip level before he's "ready" for actual solid food.

Here he is in my lap after a bottle.  His reflux demands that we keep him upright for 30 minutes after he eats.  This creates a problem for me because that is when he is happiest, obviously, and they want him to also work on tummy time which he typically hates.

When Roman went to his 6 month check up with his pediatrician, he had still not gained ANY weight at all.  I can't figure it out because he was gaining before the surgery and was eating 17-20 oz a day, and he is now getting 22-24oz a day.    This formula is a different kind of fat and it is only fortified up to 24kcal whereas the other formula was fortified up to 28kcal before his surgery.  That doesn't seem like enough of a difference to account for the lack of gain.  Anyway, the doctor checked his thyroid again to rule that out as a cause.  It was normal.  Thankfully, she listened to me when I told her it needed to be a heel stick because his veins don't give it up the old fashioned way.  He also had to get an immunization.  I opted to start spreading them out for him, but he still had a fever for days, was fussy, and didn't eat as well.  In this picture he fell asleep in the swing, and it is the first time ever.  All my babies would rock straight to sleep in the swing, but he has never fallen asleep in it until today.  He was feeling so yucky and worn out.

Roman is rolling more frequently both ways now.  However, he won't do it often if I am sitting there.  Therefore, I am pretty sure the physical therapist that comes to our house every other week does not believe me.

This was Roman's first taste of food.  Stage 1 Peas.  He doesn't hate it, but having the mouth coordination to move it around and swallow it is hard for him.

Here's another attempt at a different flavor and texture.

He definitely prefers his feet to any food!

Really, he is such a sweetie!