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!

Fri - Day 7 Post Op - Little Update

Heather and I are switching off again today and she will probably want to do another post with more details later, but I thought I'd give a little update on what the docs did this morning during rounds just before I left.

Gavin's second IV medication has been turned down a lot, but not quite all the way off. So close! Looks like he could be out of ICU to "the floor" really soon. I can't wait for those arterial lines to come out. He will be so much easier to hold and comfort without a trail of lines hanging off and worrying about them getting snagged.

Another piece of good news is about his oral meds. He has captopril (an ACE inhibitor) and propranolol (a beta blocker). The captopril is not very concentrated, so the dose is a pretty big volume, especially when we think about having to give it to him on our own at home. So the docs decided to try another ACE inhibitor that doesn't need such a large dose. We'll see how that goes.

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

Tick tock tick tock ...

OK, they wheeled Gavin down the hall to the OR at 3:50pm. I suppose I should feel more nervous, but I don't. Am I in shock? Denial? I don't know. Mostly, I think I just have the peaceful feeling of "Gavin is going to be fine." So I'm not worried. He is in the hands of some of the best doctors in the world.
*Tim

Still waiting for the waiting to begin...

Apparently the surgeries earlier today went longer than expected and pushed Gavin's back. They just came to let us know they are about ready to come get him. Heather and I have each had some time to hold him. Sure is a wierd feeling, but we're excited to have it all start.

Surgery set for Friday around 1 p.m.!

It seems crazy to be excited about a surgery appointment--but we certainly are so happy that Gavin was bumped to the top of the schedule! They bumped him because while he is stable now--his condition is fragile enough that if his heart gets further stress, it could weaken him enough that he would need more than one surgery--a stent put in before the actual repairing surgery. So they want to operate on him while he is at his strongest.

In these photos we are listening to the murmur of his heart. It is very humbling to hear how hard this muscle works for us. It is just the machine that keeps us going all day and night, and we never give it a thought. His murmur sounds like a whoosing sound. It's very loud--almost louder than the rythmic heartbeat. I was surprised by that. And it seems to have it's own rhythm.

As of tomorrow afternoon, he won't have that murmur!

The surgery will start around 1 p.m. and should take about 3 hours. When he comes out he will be sedated, and have all kinds of tubes coming out of him: his nose, neck, both wrists/hands, chest and probably other places I'm not thinking of. But he should come out of sedation within 24 hours and be home by middle of next week. John mentioned he can't believe we are here in Mia's NICU, about to go to her PICU. It is especially hard to believe since Mia was just barely here! And as it turns out, Gavin's surgery will be even be performed by Mia's surgeon Dr. Kohen (sp?). It is very reassuring to trust our baby with a doctor we already have so much confidence in.

So far I've been able to stay at the hospital this whole time--thanks to much help from my ward family at home! Thanks also to all the offers of help from my fam-family. Tim is keeping you on speed-dial! :) There is a tiny little "sleep room" (think dorm room, but smaller) upstairs where I sleep. I got 4 hours sleep the first night and six the next. I'm hoping for seven tonight! There is a "common area" for families where there are computers for parents to use.

Gavin is still not allowed to eat, so I am kept busy with pumping every 3 hours. I am a little worried about losing my milk, but I received excellent advice from a lactation specialist that really helped. But what helped most was when I realized how tense I was!! As soon as I took my mind off of pumping and thought of something peaceful, I seemed to sense immediate improvement and was able to pump more. I really didn't realize how tense and stressed my body really has been through this.

I was blessed my first day here with very special visitors: my sisters Mimi & Anne, and our kiddos. They all came perfectly staggered throughout the day, and their visits were a huge blessing to me. Mimi with all of her "insider" advice and showing me the ropes of life in NICU (Neonatal Intensive Care Unit). Her advice and support have been--well, I can't even describe how reassuring it has felt. (By the way, CICU is the Cardiac Intensive Care Unit--Gavin would be there already except they were too crowded.) Anne was a life-line of sisterly love and kindred spirit. Both of them had there baby girls with them--who were a JOY to see.

And then my kiddos. When I saw them with their Daddy walking down the hall to me, it just choked me up with love and perhaps a bit of homesickness. They got to spend a few minutes with Gavin, before we whisked them away to the cafeteria for a fun meal together! The kids all seem to be coping alright, but it is hard for me not to know the ins and outs of their day and well, just be so isolated from their worlds! They are pretty much having fun with their friends after school, until bedtime when they really realize my absence.

We have had many calls of support and advice, which I so very much appreciate! I haven't had a chance to call or email everyone back, but please know I am grateful for you. Maybe I'll have more time when Gavin is post-op, but right now I am soaking up the opportunity to hold him. You'd think time would pass slowly here--but as of right now, these two days have just sped past.

Tonight Tim gave Gavin a beautiful priesthood blessing, with the help of a dear neighbor/hometeacher. I am confident that all will go well tomorrow, and look forward to hearing that new heartbeat!

Google-ing Coarctation of the Aorta

OK. Well, I haven't gone down to see Gavin yet, but I wanted to do some Google-ing first. I now have a few more questions to ask the doctor and a few more worries--as Google-ing is wont to create. The ER doctor mentioned stress to Gavin's biscuspid valve, for example, and I need to follow up asking about that. It is good to be informed. Most of what I read, has been exactly what I've been told on this end. But the info helps me process all of this. The two websites I found helpful are: http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/coarctation.htm and http://www.healthatoz.com/healthatoz/Atoz/common/standard/transform.jsp?requestURI=/healthatoz/Atoz/ency/coarctation_of_the_aorta.jsp
There is a picture on the first one.
The purple area indicates the place where Gavin's coartaction is located. It sounds like he's pretty much a textbook case. Very treatable, though recurrence is quite possible, which is also very treatable.

We are Fine :)

Things are going fairly well. They still won't allow me to feed him (they don't want to make his heart do the extra work of digestion), so that means his surgery will go higher up on the priority list. Gavin is not a happy camper, but the medications have caused him to be drowsy and sleep most of the time. It's pretty heart-wrenching. But I have good nurses. So far we are OK.

Tidbits of info:
Earlier today I was told he wouldn't be assigned a surgery date until Monday. Now I think I will know tomorrow when his surgery will be. The medication he's on is Prostoglandin--it is succeeding in opening the ductus artery more, which is probably giving his heart a break and lowering his blood pressure. They don't know what causes a "coarctation"--but one idea is that when the fetal ductus artery closes after birth, it appears possible that it sort of "sucks in" the wall of the aorta on the other side. In Gavin's case, his heart seemed to have "saved" itself, by leaving the artery open. The severity of his aorta blockage is an "8" on a 1-10 scale. Almost the entire aorta is blocked. The only way Gavin's blood got through was through that open artery, which is supposed to automatically close upon birth. All of his nurses have told me with a bit of wonder, "He's very lucky." Thank goodness our pediatrician took action when he heard the murmur. If he hadn't, they tell me he would have either become very sick, as his extremities slowly got less and less oxygen until his kidneys shut down OR he could have suddenly died if the artery had decided to go ahead and close.

For those now worrying about their babies and wondering what symptoms he had, please don't worry, this is so rare. But my sister-in-law Kirsten was wondering, so in a nutshell, this is how his diagnosis went: a heart murmer and retractive breathing (inhaling deeply under the ribcage) were detected. Blood pressure was higher than desired (resulting in a femoral pulse that is hard to detect). He's not an enthusiastic nurser--possibly because it expends too much energy. (The cold he had is unrelated, by the way). With these symptoms, the x-ray was ordered, and then the symptoms of enlarged heart tissue and fluid in the lungs triggered the ECHO (fancy ultrasound) of his heart--and whalaa--he was diagnosed.

Thanks for all your prayers and emails, and offers of help at home. We are blessed!

Gavin is in NICU--He Needs Heart Surgery!

I can not believe I am here, at Children's in Seattle, with Gavin. Yesterday I took him for a well-child 2 month old checkup. The doctor heard a heart murmur and ordered an X-ray at Valley Hospital. By the time I returned home from that x-ray apptmt, and picking up kids from their playdates, Tim met me in the driveway and told me that doctor had called him (my cell phone was dead)--we had to take Gavin to the ER at Children's immediately. Wow. Gavin looked fine. He's had a cold for 3 weeks, and granted, he's had a funny way of breathing, but he's been thriving, is alert, everything. He didn't act he was in critically compromised health. Dr. Chan's words to Tim were: "I've called ahead to the ER at Children's. They are waiting for you. You need to find your wife."

I took the news in stride. Talking with the kids, gathering them for a prayer, as I processed this in my mind. It wasn't until calling people and verbalizing "I'm taking Gavin to the hospital" that I broke down.

The X-ray had shown that his heart was enlarged (a big sign of a problem, of the heart over-working because of a problem) and that there was fluid in his lungs.

The bottom line is, Gavin is going to be OK. They called in specialists and did an ECHO right there in the ER. The cardiologist has diagnosed him with a Coarctation of the Aorta. Basically, there is a kink in the artery that is seriously impeding the flow of blood to his extremities. Luckily, the blood flow to his brain has been fine. What has kept him alive and thriving, is the simple blessing that the PDA (artery that delivers blood from mom to baby in utero) did not fully close. The blood that was blocked in his aorta took a detour through that PDA artery and then back into the aorta and on through the body.

The surgery he needs will involve cutting away the section of the aorta with the kink and bringing the two ends together. The surgery should be done through an incision in his left side--moving some ribs aside, should give them complete access to the aorta. He should fully recover. His heart is enlarged right now, because it is having to pump extra hard to get the blood around the kink. After surgery, his heart won't havt to work so hard, the tissue will shrink back to normal, which will allow the fluid in his lungs to clear up. This is how I understand the facts at this point.

Gavin spent the night in the NICU. I slept for a few hours in a sleep room. They arent' letting him nurse. I can't bear to deny him. It is a terrible thing. But so far he has been exhausted enough not to fight it--he was sleeping when I woke up this morning. So I went to breakfast. They will page me when he wakes up. They don't want him to nurse, because he is on a medication to keep the fetal artery open, and they don't know if because of lack of bloodflow, if his stomach lining has been compromised. It's possible his stomach can't tolerate the medicine and the food. Doctors have also noted, and been concerned that he's only gained 2 lbs since birth (he now weighs 12 lbs 6 oz). He's never been a voracious eater--that could be because of the amount of effort it took him to eat and keep oxygenated. The medicine he's on, should make the blook flow more easily, giving him extra strength and rest before his surger.

I can't believe we are here. Gavin is in the same wing of the hospital that his cousin, Mia was in until just a few weeks ago--with a heart condition of his own. It has been a comfort to have Mimi and John's support and advice. They know the ropes around here better than anybody ever should. (For those that don't know, my niece Mia received a heart transplant here at Children's in November. Their story is at www.mcdonaldfam.blogspot.com.)

We are waiting for the doctor to visit Gavin. They will tell us when his surgery will be. I'm expecting it will be within the next 7 days. I am hoping it will be ASAP, especially if he is not going to be able to eat. Thank you for all your prayers and support for us here, and for the kids at home. Thank you for wonderful family, friends and visiting teachers. We will keep the blog posted with any updates--as it is the fastest way to reach all of you.
Love,
Gavin's Mom and Dad

Meeting baby Gavin! This is one of the best moments of my life--with each baby I've had--introducing the new baby to their biggest fans-his/her brothers and sisters. And this time was no exception. Spencer, Rachel, Levi and Elizabeth are all so enamored with their precious baby brother.

Elizabeth loves her baby bro, but notice her grip on my fingers. This is all kind of scary for her, too. She knows somehow that things are changing, and that she doesn't have the same access to mommy right now. She is trying really hard to be careful for mommy's bandaids on her tummy--I showed them to her--but it is upsetting for her. She sat beside me on the couch all evening, with a glowing smile, but with tears in her eyes. It about broke my heart! She'll be OK, though!

First Family Photo!

Taking their first peek at his little hands.

WELCOME HOME GAVIN!

Tim and I brought our little guy home from the hospital last night, in the middle of a beautiful, thick snowstorm. The snow was gone by morning, but it made the drive home that much more memorable. Isn't the sign Tim made cute?! I was very impressed.

I was very grateful to have the blanket wrap that Rachel made for Gavin. He was toasty warm all the way home.

All ready to load up and say farewell to the nice nurses at Valley Hospital in Renton.

SOME HOSPITAL HIGHLIGHTS:

Gavin had lots of visitors from friends and family. I do not have pictures of everyone available--Grandma and Grandpa McDonald saw Gavin when he was just a few hours old. My sweet friends Kristin and Jana came, and even Uncle John was able to stop by on his way back from visiting his own wife and daughter in the hospital at Children's where they had to stay a few nights for testing. Hopefully Mimi and Mia are back home again by now!

Aunt Bethy came just in time to help us gather up our things, and get our precious cargo ready to leave the hospital and head for home.

I love this photo of Daddy Tim with his little man. It turns out Gavin is the third of three of our sons to inherit their Dad's olive skin and dark hair. "Tall, dark and handsome" is how we make 'em!

My precious baby.

Love this photo! My sister Anne and I hold our little bundles! Eve and Gavin are just 5 weeks apart! It is fun having a baby the same time as my little sister. I remember when I was newly married, Anne worried that all her older sibs would be done having kids before she got started. I'd say with 5 of us having babies within about a year's time has those worries washed away! :) On Tim's side, all 7 of the children in his family will have had a baby within 15 months of each other. Can you say, hurray for cousins!

I put this photo in for a little perspective--can anybody guess how this guy fit into my belly just a few hours before the photo was taken?

GAVIN THOMAS KOVACS - Our belated Christmas gift!!

We love the name we have given our son. GAVIN was a name that I intially thought of in reference to Christmas--as it ties to the spirit of 'giving'. While he decided to be born in January, we still loved his name, and besides, the Christmas spirit should last all year long! His name also means "White Hawk" and has noble connections to the Knights of the Round Table.

THOMAS is meaningful for us in several ways. It is the name of one of our ancestors on my Grandma Hallmeyer's side, who owned a castle in Ireland centuries ago. Thomas is also the name of our religious leader, our prophet, President Thomas S. Monson--a man whom Tim and I admire and hope our son will be inspired by and feel a special connection to, as he matures into his own personality!

The kids came bringing gifts for their baby brother! Rachel shows him the blanket wrap she sewed for him.