Scar Pics

At the time of Séamus' open-heart surgery I didn't want to share pictures of Séamus' scar. Not because I was ashamed or anything, maybe just because it was so traumatic for me. I have been so amazed with how well the incision has healed & just how amazing my little boy is in general ;) that I am ready to share his pictures with the world (or really just my family & friends & other parents who are facing the same reality with their own baby). I am constantly showing off his scar & talking about what God has brought us through as a family. I suppose it's like a memorial stone of sorts... Read Joshua Chapter 4

So... First is the picture which may take your breath away... Just a few hours after surgery. His heart rate was too fast. They used cold wet cloths to lower his temperature, which would help slow his heart rate. He had 12 tubes/wires coming out of his little body. He was swollen & puffy from the IV fluids.

Heart. Breaking.

Two weeks later, no more tubes or wires. Three stitches remained (where the chest tubes for fluid drainage had been). The incision healed & the steri-strip covering it had slowly flaked away. He was still in "recovery" no tummy time & we couldn't lift him under his arms.

Three months later, he was doing amazingly & the scar was fading quickly, though it still had a faint pink color to it.

Six months later & you can hardly see a thing. David & Rebekah often ask to see his scar & remark at how faint it is now.  Séamus (and ALL heart babies) are so strong & amazing. Without seeing his chest, you wouldn't know anything had ever happened to him. Over the next year I expect his scar will continue to fade (we have Dr.'s orders to keep it covered from the sun over the summer). Babies heal so quickly & am so thankful for medical technology that has advanced so greatly in the last several decades that my baby got to have his heart fixed so early on his life. He will never remember what happened, but his scar (no matter how faint) will have a story to tell. 

Six Months Post OHS

Wow, it has been six months since we took Séamus up to OHSU for his full-repair. What a crazy year it has been. He has healed so well & his heart is functioning normally! He has grown up so fast. He's almost 9 months old & has already been crawling for two months & is constantly pulling himself up to the couch & cruising along furniture. It's only a matter of time until he is stable enough to let go & walk around. Amazing.

Last Monday, March 18th, was Séamus' cardiology appointment. He was scheduled for a sedated echo. He was to fast (no food or breastmilk) for 6 hours before given the sedatives. It wouldn't be a full-sedation, but I always prefer the least amount of medical intervention as necessary. I didn't feel that the sedation was necessary & expressed those concerns to the medical staff. We decided to have him fast the appropriate time, but try first to get the echo without sedation & if he was too squirmy they would administer the sedatives. Sure enough, our favorite technician was there to do the echo & he had NO problems getting the pictures that the cardiologist needed. About half-way through he gave the "OK" for Séamus to have his bottle (I pumped before getting Séamus up in the morning, so that he would be able to have his morning milk as soon as possible, & to keep up my supply). After finishing his bottle he had a few snacks. I had a package of "mum mums," baby rice crackers that I bought just for this day. He loved it. 

On to the visit with the cardiologist, a few hours later (we finished with the echo early since we didn't need the sedatives). She said Séamus' heart looks great! She said he can stop taking the propranolol now! (We are finishing up the bottle first, though) He has a slight increase in the velocity of the blood flowing through the right ventricular outflow tract, but it's still within a normal range & there is still a slight thickening of his ventricular septum, which she believes will continue to decrease naturally over time. We'll go back in NINE months (January 2014) for the next check up. No more cardiology visits for the rest of the YEAR!!! YAY!!!

Once we finish off the last few mL of propranolol I will finally feel like my baby is 100% healthy. It is truly amazing the work that Dr. Langley & heart surgeons all over the world can do. I am so thankful that I get to hold Séamus & not fear for his life. I get to see him grow up, learn, play, & develop his own personality & skills. We are so so blessed!

Something the Lord Made

I just (sort of) watched "Something the Lord Made." It is an HBO special about the men who pioneered heart surgery & saved babies with Tetralogy of Fallot. I found it on YouTube in not so great quality & split into several parts. I think some parts were even missing...

I had heard about the movie before Séamus had surgery, but couldn't bring myself to watch it until now. Even still, I was quite emotional when they showed the baby turn "pink" after the shunt was sutured. Séamus didn't have the surgery shown in this movie as his condition was mild & the shunt wasn't necessary. Many babies who have more severe cases of TOF will get the BT shunt until they are big enough & strong enough to have their full-repair.

It is amazing the skill that surgeons have to be able to operate on such tiny babies.

Forewarning: It is a little graphic with shots of the heart beating while they are operating & lots of blood. There's also a bit of language in there too. The movie also hits on the segregation that was happening at the time.

Something the Lord Made YouTube Part 1/12

After you watch this one there should be a link to part 2, then part 3, & so on.

It's been too long!

I haven't shared much lately. It's been a busy few...months! We spent Thanksgiving and Christmas at home this year. The holidays flew by. My husband has a new job with new hours and we're all adjusting to the change in our schedule.

Séamus has been doing well. We've been passing around a lovely cold bug, but other than that we're all healthy. Since the last post he's had 2 cardiology check ups and 2 well-baby check ups. He's growing well, meeting all his milestones on time (he even waved to the pediatrician!), and his heart is looking great. There's still a bit of hypertrophy the meds are working on decreasing. Dr. Shaughnessy expects to take him off in March.

Séamus is rolling all over, getting to his hands and knees, and REALLY wants to crawl. He can't quite coordinate his hands while up on all fours yet. He'll be there soon though. He loves to eat. Anything. And everything. His most recent favorites are carrots (well steamed) and cheerios.

Throughout pregnancy, knowing that Séamus' heart would struggle, and even throughout surgery & recovery I would worry (as any heart-mom would) about his development. Would he have the energy & stamina to learn new skills? Would he develop the way his siblings did? Even with no tummy-time for 6 weeks after surgery, he hasn't missed a beat! This kid is on fire and won't let anything hold him back! This baby has been such a blessing to me. I love him dearly & can't imagine our family without him!

Pictures

I don't have much new to report, medically speaking. Séamus has shown interest in eating real foods. So far he has tried avocados & oatmeal. He loves sitting at the table with the family!

He has also decided to roll over. He's not supposed to have "tummy time" until 6 weeks post-op, but at 4 weeks he started rolling over. Now when I put him down for naps he rolls over to sleep on his tummy! This little guy is a fighter & isn't letting a little heart problem get in his way of growing!

We received a "heart heroes" cape in the mail for him. It has an "S" for Séamus. I love it & can't wait to see him running through the house with it on!

I love this little guy!

The Silver Lining

This has been the hardest year of my life, hands down. In between finding about Séamus' heart condition & his birth we had two deaths in the family & I've watched two marriages fall apart. It's been a rough year, no doubt.

Amidst all the pain & heartache God has been doing amazing things. I've seen more love in this year than ever before in my life. There has been healing & restoration of relationships in my family that I hadn't expected.

I have never been more thankful to live in the 21st Century, when open-heart surgery on babies is a regular occurrence & relatively low-risk (depending on the baby & condition of course).

God brought an amazing couple to me to prepare my heart & mind for what was to come, their son going through the same open-heart surgery with the same surgeon 12 days before Séamus' surgery.

I NEVER would have wished for our family to go through this, but SO much good has come of it. I can only praise God!

Romans 8:28 We know that all things work together for good for those who love God, to those who are called according to his purpose.

James 1:16-17 Don't be deceived, my beloved brothers. Every good gift and every perfect gift is from above, coming down from the Father of lights, with whom can be no variation, nor turning shadow.

Follow up

It's been a while since I've updated! Two weeks after surgery (one week after getting home) Séamus had the stitches removed from where the chest tubes were. It was pretty uncomfortable for him & he cried, but he calmed down as soon as I picked him up.
We had all gotten a stomach bug that week & Séamus had been throwing up, yet he still managed to put on a few ounces since leaving the hospital.
Last Wednesay I noticed a pink spot on Séamus' incision & was worried about it possibly being infected. So, on Thursday we drove up to Portland to let the experts take a look. It is not infected... However, part of the "dissolvable" stitches did not dissolve & is being pushed out by his skin. So now we're waiting to see what happens with that!
Yesterday was Séamus' 4 week post-op appointment. Wow, it is amazing hi progress in 4 weeks! He has gained half a pound since discharge (& is currently going through a growth spurt). He had an ECHO done & the cardiologist said his heart looks great, he's doing perfectly, & he is a "poster child" for TOF repair! She also listened to his heart & said he sounds like a whole new baby! She decided to keep him on the propranolol for a while longer to continue relaxing the ventricle that had gotten so huge & muscular from having to work so hard. It has improved a lot since surgery & we want that to continue.
Overall, a great report & we'll go back in 2 months for another check up. The ECHOs & cardiology visits will be spaced out further each time until we get down to once a year!