Thurs - Day 6 Post Op - Progress!!

Heather and I traded off last night so she can have some time with the other kids and I can eat more cafeteria food. :) The kids were very excited to see their mom for more than a couple of hours and I can't really blame them. Unfortunately for me, we were like ships passing in the night. Our neighbor stayed with the kids after I got them into bed until Heather got home and Grandma Conway, who had been visiting Heather, stayed with Gavin until I got here. No mommy time for me. :(

The biggest news of the day is that Gavin's blood pressure came down quite a bit last night! The new oral medication they started Tues seems to be doing the trick. The different meds work to reduce blood pressure in different ways and it looks like they have found the one that works on Gavin the right way. So they have been gradually reducing one of his IV meds for blood pressure (apparently it wasn't doing much at all) and this morning it has been turned off! One down and one to go.

Just another reason to be a smiley bundle of cuteness.














Interesting tidbit - Gavin does not particularly care for blood pressure cuffs.

Wed-Day 5 Post Op-Bring in the Specialists!

Gavin is slowly working on his fan base here in the ICU. Today he met the kidney docs! I am so happy that the specialists have their eye on him now. I was kind of worried that a relatively "simple" case like him could be going under the radar amidst all the craziness that has been going on this week with some of the other sweet heart babies. Since the kidneys are the "brains" behind blood pressure, I am sure they will be able to figure out the right combo of meds for Gavin.

Last night, one of the babies whom Mimi knew, passed away. I didn't know the baby or the family at all, but that doesn't make it any easier. It is a surreal feeling watching a family go through that. I can't describe it. I am having a very hard time with another baby here, too. Gavin's 2nd "roommate," Patrick. He is only 2 weeks old and had surgery the same day as Gavin. They were recovering together and we got to know his sweet and hopeful parents. This week has not been good for Patrick, to keep it simple. But so far he continues to fight for his life. He is so little. I have had dreams, and lost sleep over him. It makes me so grateful for my blessings.

Today the kidney doc--Dr. Ruth McDonald--once again looked me in the eye and said, "This was an AMAZING catch your pediatrician made. Believe me. I've seen a lot of cases not work out so well. He saved your baby's life." Wow. Did I mention how grateful I am? It brings tears to my eyes.

Tuesday-Day 4 Post Op--Big Smiles But More Meds!

So far the news today is that they are going to give Gavin another oral blood pressure medicine--that makes two by mouth and two by IV! Hopefully, by doing this, they can get the BP down, and then they can START to wean off the IV meds. This probably means a couple more days in the ER, because they have to wean the meds off one at a time, by tiny increments and only can do so every 8 hours. As mentioned, they have yet to start weaning him--in fact, today they had to INCREASE one of the IV meds to try to get the BP in the target range. So this is why they are going to give another medication. They are also going to do another ECHO to make sure that there isn't more narrowing of the artery that they aren't seeing--which they don't think is happening, just checking to be sure.

The fact that his BP is so high is unexpected by the doctors-but it just reveals how hard his heart was working to get probably only a little blood through the kinked artery. My nurse has reassured me that, "We always win the (blood pressure) battle!" So that is my mantra to myself these days. Thanks for keeping tabs on us!

The good news is that Gavin is SMILING!!!! He gave me his first set of smiles last night--but today he woke up and was basically one smile after another all morning! He just dazzles me, and all the docs and nurses with that grin! Aunt Bethie got to be witness to some of those grins today, too!

It's a good sign that he is feeling better. No wonder I am feeling calmer today myself!

Monday--Day 3 Post Op-Thanks to those at Home!

Well, we're still here. Gavin is not cooperating with his blood pressure. So far it's not coming down, so we're still in ICU until that happens. It's impossible to say how long it will take him. Could be today--or a couple of days. The nurse had to give Gavin quite a bit of pain killers to make him comfortable. We share a room with a darling little girl, Gracie, who also had a hard night. (She's had her 3rd successful open heart reconstructive surgery but is fighting infections in her wound.) Apparently we wore the nurse out because the nurse who came on in the morning said, "I heard this room is a bit Crazy!"

It's so important for me to be here. I now realize first-hand the importance of the patient "advocate." It's important both for Gavin's comfort but also for his care. I felt good last night when it was me who first recognized the signs that Gavin needed more pain killers. After watching him struggle quietly to relax and throw his head from side to side, without improvement for several hours--I looked at his BP and realized he was in pain--but just being a silent sufferer! He has always been a patient baby. When I asked, "Are you starting to think about more pain meds?" the nurse looked at me in a way that I recognized as "good idea!" It's not like it's her fault or anything. Pain levels in a baby are hard to read. And that's what the "mommmy" is for.

Which brings me to a message I want to send home, which is:

THANK YOU again to those who are making it possible for me to be here. I know that the kids are in good hands at home. Gavin is actually having a better day today so we'll see--I'm sure we'll be home, putting this behind us before we know it.

Sunday--Day 2 Post Op

Today was a quiet day in ICU. Gavin was very alert and peaceful and interested in looking at us and interacting in a subdued way. He sleeps soundly. He is not on any big pain meds. Just Tylenol every few hours. But he doesn't seems to be in a lot of pain.

I was a little disappointed in that I thought maybe we might get out of ICU tomorrow, but it's not looking that way. The only thing keeping him there (as I understand it) is his high blood pressure. Apparently all "Coarc" post-op babies take a couple of days for the blood pressure to normalize. His BP is now ranging in the 120s to 150s and they want it in the 90s preferably. He's on 2 blood pressure meds in his IVs and one orally. The goal is to get him off all the IV meds by slowly increasing the oral medication. When they tried to do this today (cut the IV med) his pressure spiked, so they had to increase it. So it's back to the drawing board in a way. But again, the doctor isn't worried about this. It's normal to have high BP because they've just fixed a kinked artery--so the blood flow is much stronger than it was and the body has to "aclimatize" so to say.

Gavin had his biggest fan club visit today--his brothers and sisters! I was so happy to see them too! We spent three great hours together! First they spent an hour in a really cool "Playroom" that is set up downstairs and staffed by Volunteers--there were crafts and a pool table and a giant chess set that we all enjoyed together. Then we took the kids by twos into the ICU to see Gavin. They were so cute with him and so interested in all the numbers and tubes they could see. Rachel was worried that he was getting to filled up with fluids--and it's true, he is retaining a lot. But that is pretty much unavoidable and he is on a drug to help with this too. After all the visits, they got to have an "exciting" dinner at the hospital cafetera of hotdogs, chips and cookies. (Tim had put a dinner in the crockpot before coming, but then the power went out due to a windstorm before they left so we just fed them here.)

In the lobby, someone we had met and befriended asked Elizabeth after her visit to Gavin: "Is your brother doing okay?" and she answered simply, "No. He's sick." She has been quite homesick for me, according to my mom who found her buried under a blanket in her room yesterday. But she and all the kids are being very brave. They know they are lucky that Gavin will be able to recover and come home so much sooner than their little niece.

Oh, the other big news of the day is that Gavin gets to eat again! He started out small--just 1/2 an ounce. But now he's up to 2 oz feedings! He is eating breastmilk by bottle for now so it can be measured. Maybe tomorrow he'll be able to nurse again!

On a seperate note--I am thinking a lot of David and Noel (Tim's brother and his wife) who are scheduled to go in to the hospital tonight to be induced with their first baby. I'm sending a prayer your way! Can't wait to hear the news!
*Heather
p.s. Hopefully we'll be able to add photos to these posts soon with Tim's laptop--but I don't know how to do it on these hospital computers.

Saturday-- Day 1 Post Op

Gavin's first day post-op, Tim and I were at the hospital together. It was great to have each other's support. It was not easy seeing Gavin under so much drugs for so long. He did not open his eyes until 5 p.m.--24 hours after he was wheeled away for surgery. He happened to be in Tim's arms when he opened them, so the first thing he saw was his Dad. It was a big moment for all of us.

Another huge event for that day was getting "extabated" or having his breathing tube removed from his nose. This happened at 2 p.m. It was stressful, because he was congested so they had to suck out his lungs for about 10 minutes, with his body heaving and fighting it. When it was out, he was visibly not getting quite enough oxygen but they quickly put little oxygen lines under his nostrils and he was stable. Nothing alarming to the folks working on him--just difficult for his parents standing by. But at the same time, we knew that he was in reality, in good hands and going to be just fine. Earlier in the day he had the chest/drainage tube removed.
He was slowly starting to get freed from his spagetti mess of lines!

Another event of this day was the fact that was was moved three times in his first day in NICU! This was based on the discharge logistics of other patients. The bonus from these moves was that I've been able to get to know three beautiful HEART babies and their parents--and we have been a support to each other through the good and the sad that we've already seen in the two short days I've been with them in ICU.

All is Well!

Gavin is out of surgery and all is well! There are no complications that we know of and our little Gavvy is beginning the recovery process in CICU--in one of the rooms that Mia spent way too much time in. Fortunately, Gavin will most likely just spend a couple of days here, then a couple more on the "floor" (regular ward) and then will possibly go home mid-week next week.As we mentioned, he was taken back for surgery at 3:50 p.m. It took almost 2 hours to prep him since they had a hard time getting his "lines" (IVS, tubes, etc) in, so the actual surgery started about 5:40. They called at 6:30 to say he was all closed up and getting set up in CICU! But it wasn't until 7:45 until we got to come back to his room. Seeing Mia post-op had prepared me quite a bit for all of the lines coming from Gavin, but the sight of Gavin's face shook me. I hope I never again have to see one of my children sedated.

Spaghetti a la Gavin. The lines came out of the OR this way, but the CICU nurses have organized them, now.















Gavin and his "Chrismas tree" of medication dispensers on the left.














The hours of surgery went by faster for us since both my mom and dad and step-mom were able to be here with us. Thank you Grandmas and Grandpa! :)

This has been a whirlwind week. It's not over yet--but we have been in such good hands. We have been so blessed and we truly are so happy that Gavin was diagnosed and operated on all within days. We are so blessed to live within just over an hour away from one of THE most premier children's hospitals in the Northwest.
*Heather