Not What I Wanted to Hear

Today I heard the cardiologist reassure me, "Don't worry, this is what we want to see"-- right after she told me that today's echocardiogram showed that Gavin's aorta repair looked perfect (Hurray!), but that his ventricle tissue had thickened in over the last 6 months and he would need to go back on meds, probably for life. Wow. That threw me for a loop. I had left for today's appointment announcing to anyone near that this would be Gavin's last surgery follow-up and that he would be officially weaned from his last blood pressure med today! So this news, while not devastating, is a far cry away from the outcome Tim and I were expecting since the time Gavin's coarcation was diagnosed.

I remember them saying that he would be off the meds a few months post-surgery. Then wait--if I think harder, I also remember them mentioning that a very few kids end up on medication indefinitely, a statement that was quickly qualified by a soothing but don't worry, that hardly EVER happens... And so worry I didn't. What is the point of too much worry anyway. But the fact remains, that Gavin has found himself numbered among the very few. I guess I shouldn't be too surprised, considering what a difficult time he had in the hospital with regulation his blood pressure. But still. So what the doctor meant, I believe, by "this is what we want to see" is that his condition is treatable and not an emergency.

So I'll try to explain why he needs medicine:
As I mentioned, Gavin's heart tissue has thickend. This is not good, because it shows that the heart is being required to work harder than it should (so it builds more muscle). As far as I understand, the doctor doesn't really know why his heart is having to pump harder, but the medicine (Enalapril) that he is back on, will help the arterties in his extremities expand, thus allowing better blood flow. Another factor to mention here is that Gavin has a bicuspid valve--this is a very common thing and not necessarily a problem--but the doctor says there could be a correlation between the valve and the tissue issues: "People with a bicuspid valve sometimes have less elastic tissue" or something to that effect. It is all a little hard to fully digest. His blood pressure today (while active) was 110/53 which is in the normal realm. If it weren't for his heart tissue issue, he would be off of the med. I'm sure it would be smart to have a 2nd cardiologist take a look at his Echo at some point down the road. But for now, it is comforting to know that we can help his little heart with just the minor inconvenience of medicine once a day.

Having said that, it is not a small deal to have to take medicine every day the rest of your life. I don't even have to worry about my blood pressure and am completely independent of medicine. It is sad to think of a child having to worry about medical issues. On the other hand, Gavin won't know any different, so it probably will not be a big deal. As he gets older, he'll just give himself a little pill, I'm sure. As for now, we have to deal with the inconvenience of having to keep the liquid med cold in a fridge and remembering it when we visit Grandma's house, etc. Remembering to order the refill before you run out and on a day when the pharmacy is actually compounding medicine (3 days each week), is actually the biggest headache. But hopefully they'll fill bigger prescriptions for us and then we won't have to get refills as often. The doctor says that Gavin will be able to participate in any physical activity or sport--he will just get monitored on a treadmill at the doctor's office first, so they can adjust his meds if necessary. This makes me so sad. So this is a sad night. In the doctor's office, the nurse and doctor were so positive and reassuring that I was OK, but by the time I got to the parking lot, I felt a fleeting panicky feeling --a dejavu feeling to those weeks back in March. But by the time I had finished talking to Tim and Mimi (and finished a strawberry shake I might add :), I am feeling....OK.

It was just hard for me to finish that last sentence. 'OK' might not be the right word. Probably it is. What I know is this, that Gavin will be fine. I will be able to take care of him, and we'll just make this medicine a welcome part of our family. What a blessing it is to live at a time when we can help our little ones grow up. Not many years ago, babies like Gavin would have had to suffer a sickly childhood, if they survived at all.

I have not been a very faithful blogger. At least once a week I think about posting a blog. Tonight the dishes are not fully done, a christmas pagaent robe still needs to be sewn this evening and I've got Girl Scouts to plan tomorrow, laundry to fold and email to go through....all these are the kinds of things that thwart my desire to record our family history--but this all takes second place as I take time to contemplate and record my feelings.

Gavin is 11 months old today. He weighs 20 lbs and is 28 3/4 inches.













Gavin with his cardiologist Dr. Vernon


Today is Tim's birthday! We celebrated on family night. The guy at the local GameStopper store thought it was great that the DS game I was buying last week was for my husband--BrainAge. The kids thought it was funny when I told them that I had bought Daddy an "outfit" and a "toy" for his birthday. I told them, grownups are just big kids, we still like new clothes and toys. I made Tim a football cake at Rachel's suggestion. Happy Birthday Honey! Love, "S"

Elizabeth is 3!!

Have you ever seen a happier birthday girl? You could almost literally see her soaking up the attention that had been so sparse in the days prior while we were in the hospital. She was so happy and soooo proud to FINALLY be three! And I was so happy her cake turned out! (It is a Barbie pushed into an upside cake-baked-in-a-bowl. I made the wings up an hour before the party! Can't believe it came together!)

Elizabeth had long been planning her "Mariposa" (butterfly fairy) party! It turned out she had to wait longer than the 12 months normally between birthdays, due to Gavin's hospitalization. Needless to say, she was confused as to how she could be three (March 9) when she hadn't had a birthday cake! The babysitters told me about the arguments she was having with her siblings about it and it was one of the hardest things about being at the hospital-she was already having a hard time adjusting to the baby....but, I knew, once we were home, she would have her big day, and her "world" would be right again in more ways than one! (Refer to the photo in the previous post to see how she was feeling on our homecoming day) :)
Following are some highlights of the party---sorry in advance for the sideways photos. I downloaded them before I rotated them and now to fix them I'd have to download ALL of the photos over again-and I am just refusing to do that!)

First, the butterflies were given their wings and danced while we waited for guests to arrive.

Cousins Eli and Isaac were the butterfly kingdom "guards." So cute!

Cousin Cayla made a beautiful butterfly fairy, with "Prince" Levi!

The remainder of the party revolved around enacting our version of the Mariposa story. First, the disguised evil fairy "Henna" (Rachel) poisoned the butterfly queen (Aunt Beebs). Then Prince Carlos (Levi) led Mariposa (Elizabeth) and the other butterfly's on a journey to find the magical flower--the antidote to the poison!

Wouldn't you know it, but the magical flowers were being guarded by the "Skeezites!" Giant butterfly-eating bugs! The girls carefully picked their flowers, making sure not to wake the sleeping bugs (Tim, Spencer and Cameron).

Hurry! They're waking up!











AAAAHHHH!!!!

Attack! Throw the "balls of light!" (Foil) Skeezites can't take the Light! (These costumes by the way were a complete surprise to me. Kudos to Tim and the boys! The girls were extremely thrilled by the whole skit--largely due to the half fascination/half fear of the Skeezites!)

Just in time, the butterflies save the Queen with the scent of the magical flowers! (Allergies, Anne? Eve? Are you in there somewhere?) Little side note: I sent Tim to the store that morning for a bouquet of carnations to divvy up for this skit, and he came home with these beautiful little bouquets--turns out the florist at QFC found out what Tim was using the flowers for, and made these up for him all for just $6 total! I was amazed!

Sweet moment with Auntie Beebes.

Getting a little tired at this point. :)
Cozy with Grandma Conway her new blanket for her "big" bed in Rachel's room! (the trundle)

Follow Up on Gavin

Well, we've been home a week now, and we thought we'd give a short update...everything is going great for Gavin. Today he had his first visit to his official "cardiologist" today. They did a follow-up ECHO and found his aorta healing perfectly from surgery
and the blood is flowing well, etc. As of yesterday we started cutting one
of the doses of meds in half, and his blood pressure is still stable. So
we're moving in a good direction!

He had a stitch from his side removed today (from the wound where the chest
tube came out). He would not hold still and the stitch was embedded and so
he got poked with the scissors and was bleeding. It was a long five minute
ordeal for both of us! I have a follow up visit
with kidney docs later this month (they are the ones monitoring his BP right
now). After his BP regulates, the kidney doctors will "drop" him, but Gavin will always have a cardiologist-to check for recurrance with his coarct and for (rare)complications down the road with his bicuspid aortic valve.

We are keeping a pretty low key pace with regards to other activities this month, which is nice. I pretty much have no obligations during the day except the doctor visits and Gavin's meds, and a few household errands. (Yesterday I took Rachel to get her prescription for her 1st pair of glasses!) In the evenings we have gymnastics and cub/girl Scouts things though, piano wed mornings. But the slower pace during the day is very nice--especially for Elizabeth and I to have plain "old" time together.

I just want to add another quick note of thanks to those reading who may have helped us on the home front while I was at the hospital. So MANY hands helped with child care and meals, even laundry! This all went on without my knowing who did it, as I was away, so there is no way I can properly thank all of you. Please know that your service was of tremendous help to my husband at home and to my peace of mind at the hospital. We look forward to a chance to "pay it forward!" (return the favor)

Day 11 Post Op-Going Home!

Wow. Two weeks to the day we were admitted, Gavin was actually discharged today!
His discharge was almost prolonged a week longer because of the fact that the special blood pressure machine I need at home is not available. The hospital is scouring the country for one for us to rent, but in the meantime, I asked if I could possibly go the pediatrician each day. So that is now the plan! Gavin will need his BP taken twice a day for one to six months, so a daily visit to the doc would not be a realistic plan long term--needless to say I'm grateful insurance had agreed to pay for the special equipment so I can do this at home.

You might wonder why this machine is so hard to come by? Simply because babies just don't usually have blood pressure issues--Children's Hospital only has about 5 patients a year who need one. Even transplant and open heart surgeries have less impact on blood pressure than "coarc" surgeries because it impacts the flow of blood through the arteries so severely.

Gavin is on two blood pressure mediations--five doses total at different times throughout the day. As his kidneys adjust to his fixed aorta and his blood pressure lowers, I will keep the kidney and cardiology docs informed weekly, and his meds will gradually be decreased, so that we don't allow his BP get too low. The significant role I have in this process is a bit humbling!

Coming home was wonderful! Leaving the hospital was an indescribable feeling. I felt like any moment someone would stop me before I could sneak out! I was so grateful that Sister Dickerson and her son dropped by for a visit right when I was discharged--they were so willing to help me load up all my things. I know this was not just a coincidence, but an answer to all the prayers so many of you have offered in our behalf!

Grandma Conway was here the the kids today and they had made a welcome home poster and cake for Gavin and I. I LOVED the bedtime time I had with them this evening. All the kids have been so brave, but I know they've been scared. I know, because I know how scared they were for Mia. Tonight I told Spencer about how when I was a kid, I thought my brother, John, might die. He was VERY sick with scarlet fever. I was an avid reader, and I knew that this used to be deadly. My parents didn't seem to be too afraid, but I still wasn't so sure. I think I quietly shed tears with this nagging fear, and it was really upsetting to see my brother so ill. Needless to say, John made it! Spencer seemed to like this story.

Here are some pictures from earlier in the hospital stay.

Day 10 Post Op-Getting Close!

My favorite quote of the day (spoken by my cardiologist) pretty much sums up the whole day: "Well Heather, it looks like, maybe you might be going home tomorrow!" I smiled as I replied, that's quite a few disclaimers!

Sun - Day 9 Post Op - Out of ICU! Kids visit!

Hurray! We got to move to "the floor" on Sunday! It is very different there. In ICU the kiddos are so sick that a nurse is pretty much constantly in the room, this makes it easier to leave to update the blog. On the floor, if you leave the room, your baby is just left unattended--so I wasn't able to get to a computer while I was there (Tim started this one but didn't post it).

Tim came with the kiddos for their 3rd visit to Gavin! We had a fun time together in the room and in the playroom that the hospital provides for patients and families. By the end of their visit Elizabeth was literally "flipping out!"

Sat. Day 8 Post Op-Gavin's Great! Mom's Tired!

Today was a very big day for Gavin! He is officially off all the IV meds and that meant his nasty "lines" in his armpit and his jugular (neck) could come out! I didn't realize that they had actually stitched these IV lines in! It was so unexpected to see the stitches when they took the dressings off, the way the skin pulled as the lines moved--I must say it was possibly my queasiest moment yet! So he's down to just one heplocked IV on his hand and a few gadgets attached to him (Blood pressure cuff and EKG and oxygen saturation reader). But these are nothing!

The IV "Christmas" tree. Everything is turned off!


















Bottom line is Gavin's BP is below 100 consistently, and I think they are going to move him out of ICU tomorrow! And hopefully home on Monday!

Besides watching his BP, the only other concern right now is Gavin's weight. Tonight he only weighed 11 lbs 5 oz. That means he's down a pound since this whole thing started, and that he's only 1 pound heavier than his birth weight. He's 2 1/2 inches longer, so he's kind of on the skinny side! We really do need to plump him up and make sure he's nursing aggressively enough to get the nutrition he needs! If he doesn't gain weight soon, they'll probably have me bottle feed and add a "supplement" to the milk. Whatever it takes! :)

Gavin is a total flirt with the nurses.














And me? Well. I'm getting tired! The adrenaline of the past almost two weeks is wearing off and I have been left with a nagging headache. So I've actually been taking naps in Gavin's room when he's sleeping--which has been just what I needed!

Ah yes. My wonderful visit home! I want to add a note to tell Spencer, Rachel, Levi and Elizabeth how much I love you!! I miss you so much! It was SOOOOO GREAT to have those two mornings and a bedtime and the day in between with you. Being a mom pretty much means being there for those "everyday" moments in life, and I never have appreciated them more than I do now. Thank you so much for being so brave and for your faith and prayers for "baby Gavin." We will be home for good VERY soon!

Making a leprechaun catcher with mommy. So what if it was 2 days after St. Patty's Day.















P.S. One of my good friends from my ward, Elisa Pope is now here with her son Carl as a patient! I couldn't believe it when she walked in to my room with one of those orange parent necklaces! She brought him in to check out the cause for a nagging fever and they found a blood infection probably contracted through dental work--something that people with heart "conditions" are susceptible to. This is something I'm going to have to look into for Gavin!