Updates for 6/28

12:15 p.m. - quick note (cause that's all the time I have). The appointment yesterday at the children's hospital didn't go quite as expected. It took right at 4 hours to get down there, including a feeding stop. We spent 4 hours at the clinic and had to go from place to place to get different tests done (x-ray, echo, etc...).

Good news: His heart condition is fine, but they want him to gain more weight.
Bad news: The cardiologist thinks he has a hiatal hernia, which can sometimes occur after heart surgery. They are concerned that a weakening or hole in his diaphram is letting his innards (stomach/instestine) to move into is chest area. However, the general practitioner doesn't think so (they are debating about the angle of the xray and such). So, instead of coming back in 2 months, we'll need to come back in 2 weeks to the children's hospital for another checkup.

We also had a pediatric appointment today which went well enough. The dr. there said things (weight-6lbs, 5 oz/height ~19") appeared ok to him and advised how many ounces of food he should be getting now (about 16).

Updates for 6/23

9:38 p.m. - Good evening all. Just put the two oldest kids to bed (they're in bed but not sleeping of course). Gavin is still eating well and is increasing his intake of food. He's up to about 5 lbs 14 oz, so he's gaining well enough. Nathan, on the other hand, is a big chunk of a baby now, weighing in at 9 lbs 4 oz .. almost twice Gavin's size.

The area around the tick bite appears normal, so all seems well with that. We thought we had Nathan's fussiness problem solved, but we don't. It appears to either be acid reflux, too much gas, or maybe cholic (which a term used loosely when Drs. aren't sure what's going on). So, sometimes he will cry a painful sort of cry and nothing we do helps. Momma decided to take him to the clinic earlier this week and they said it was acid reflux and prescribed some meds (sigh). We'll see how that helps. I've had some success putting him in a snugly, which keeps him in an upright position. So, that means when I'm home, I often have him strapped to me ... like now .. which is ok, he sleeps well and I'm still free to do other things.

Next week we're off to the children's hospital again for a checkup. Such a long drive for a short visit ... guess we'll need to make the most of it somehow.

We're thankful for grandmas and papas (and sister-in-laws) .. for cooks and friends (and friends who cook) ... we appreciate the help and food that everyone has given us and the time people have spent to come over and watch/play with the older boys. I've been able to manage a few hours at the office this week and momma has handled it well. Hopefully I can find a more consistent routine to being there.

Updates for 6/18

12:16 p.m. - Wow ... never a dull moment. Well, yesterday I discovered a tick on the back of Gavin's head (can this kid get a break?). After a call to the pediatric clinic and children's hospital (which gave varying insights on how to proceed) I went ahead and plucked it out with some tweezers. We'll watch the area over the next few weeks make sure nothing is infected (I put the tick in the freezer in the event we need to identify it).

Gavin seems to be taking everything in stride. He's gaining weight slowly and is getting lots of rest and food. I think momma has figured out some of Nathan's fussiness. It seems he was drinking his milk too fast, so she's adjusted his positioning when he feeds and it seems to have helped quite a bit (although he can still be a bit restless at times).

Sooo, today is Fathers day and Marcus' birthday ... whew, between mid May and mid June we have 5 birthdays in the family and two "parent's" days ... this could get expensive in the future. Thanks for everyone who sent cards for the boys, we sure got a stack of them.

Updates for 6/16

7:42 am - Friday already? We'd like to apologize for any unanswered emails, voicemails, phone calls, IM, etc ... that may have occurred. Every minute seems taken up with something to do here ... :-)

So, Gavin had his checkup yesterday and it went will enough. The Dr. was pleased with his alertness and the pinkness of his skin tone (i.e. its not the typical blue for other "tet" babies). He was 5lbs 7 oz when he was weighed there ... but that seems to vary alot depending on which scale is used and the time of day. We'll be visiting the pediatric clinic once a week for several weeks and we also have a checkup at the children's hospital this month.

We have a nurse who visits briefly once a week to check on Gavin. She was here yesterday trying to find a good position for Gavin in his car seat. Because of the shape of the seat and the position it puts him in, it often causes his head to bend forward, lessening the amount of air he takes in. We have to do the same thing when we lay him down on things around the house.

So, how are things? At the moment, we're still a bit over our heads in trying to manage things. Gavin isn't too bad to take care of since he normally just eats and sleeps but combine with his twin Nathan (who is a rather fussy baby and eats all the time) and they are a handful. As for the two older boys, they play quite well together, although we still try to spend as much quality time with them that we can as well. Of course, it would be quite manageable if I didn't have this "work" thing (haven't quite figured out how to retire yet). Perhaps I should get into online poker :-) (just kidding, it's an inside joke).

Thankfully, we have grandmas and grandpas (and sisters and brothers) who can come by and lend a hand by bringing food and spending time with the older boys. Maybe we should hire a baby-sitter during the day to give momma an extra pair of hands ... hrmmmm

Updates for 6/13

9:30 a.m. - Our first night together at home. We were all dead tired last night, so any bit of sleep (although little) was helpful. Gavin is eating just fine and he's adjusting to his new surroundings (he's lived all his life in a hospital until now). We checked his oxygen levels last night (which we need to do daily) and they were good and he took his medicine w/o complaining. We're "adjusting" as a whole to our new schedules here with all the boys and we've a way to go before we can get things settled down. However, we're both happy to be finally home with the entire family.

As for what's next? Well, Gavin will have a few more surgeries in his life. The first real "fix" for his condition will come in 6 - 8 months (or sooner depending how well the shunt lasts). He will have a conduit put in to pass blood to his lungs and then the hole in his heart will be patched. He will have the conduit replaced throughout his life until he stops growing.

Updates for 6/12

9:35 a.m. - Dr. informed us we could leave today! So ... were going through the discharge process (getting things cleaned up, instructions for various things we need to do, packing up, etc ...)

7:30 p.m. - Praise the Lord we made it home! What a busy day it was just to get here, but we did it. Gavin traveled well. We stopped mid way to feed the twins and after a bit of fussiness with burping, we headed back out.

Here are a few of the last pics of Gavin before we left. He had pulled his feeding tube out himself the night before. No more wires! Also included a pic of my "office" and Gavin in his bed (he looks so tiny in it).

Updates for 6/11

Gavin has been feeding very good recently. The Dr was "optimistic" we could send Gavin home on Monday. We decided that the family would stay here one more day and all drive up together tomorrow if things work out. Took the two older boys to local submarine museum with some friends who came by to visit. The boys have been staying with grandma and papa at the hotel and it seems they're being spoiled for everytime I see them, they have new "Thomas the Tank Engine" toys ... better their dime than mine I guess. :-)

Updates for 6/10

6:54 p.m. - Momma and family are down here for the weekend. Gavin is finishing 90-100% of his bottle each feed ... instead of feeding every 4 hours, we are given an 8 hour time period and he needs to drink 100ml of milk within that window (at whichever interval works for him). This pretty much works out to what we were doing before ... hopefully he can make the numbers. They decided not to add more formula ... hopefully he will naturally increase his intake of milk for more calories.

Here are some accompanying pictures of Nathan that were taken a couple weeks back.

Updates for 6/9

7:00 a.m. - The 2:00 a.m and 6:00 a.m. feeds went very well. Gavin was able to finish his entire bottle both times and was able to stay awake during the entire feeding. I used all my bag-o-tricks I've learned over the past several days, including making him "less" comfortable (turn on the tv and radio for noise, turn on the bright lights, and sitting him up in bed as opposed to my lap) as well as using all the feeding techniques (rotating the bottle, side feed and upright feed, rubbing the chin, etc).

4:00 p.m. - Gavin continues to eat most if not all of his bottle. The nutritionist wants to increase his caloric intake more, so we may need to add more formula to the milk or increase the milk count ... not sure what they'll decide yet.

Updates for 6/8

8:00 a.m. - Gavin ate better than normal this morning (1:30 and 5:30 feeds) however, he won't eat again until after his tests (which are scheduled for 9:30 a.m. today).

2:30 p.m. - Gavin's test went great this morning ... no leakage into his lungs. They made him drink some white liquid and then watch him swallow via an xray machine to make sure it was going down the right paths (course they had me watch as well). Quite disturbing I must say.

Updates for 6/7

We've had a few feedings on the new schedule now with mixed results. Gavin is staying awake longer during the feeds and is able to eat more (avg 30 ml), but his oxygen levels (measured via the pulse oximeter) dipped down after his feeds as if he's spending too much energy during the feed. Doctors will talk it over as to what we should do next.

Here's some recent pictures of Gavin I took to while sitting here with him. It's a treat to see him when he's awake, he has great facial expressions (I think he smiles alot) ... there are more on the family website for those who know where that's at. At dialup speeds, I can't add too many right now ...











11:55 a.m. - Gavin didn't feed well late this morning (mostly because he was very tired). Because his pulse-ox dipped after the previous two feedings, they scheduled a test tomorrow to check for pulmonary aspiration to make sure no milk is leaking into his lungs (not likely, but want to rule it out).

Update from 6/4 - 6/6

Catching up from the past few days ...

06/04/2006 (Sunday) - Gavin is hit and miss on his feedings still. He gets 40 ml every 3 hours, alternating between tube feed and bottle feed, however he averages drinking 24 ml from the bottle before he gets tired and falls back asleep. There is still talk of allowing him to come home after his tests, but it wouldn't be until Tuesday since he has an echocardiogram that morning.

Some friends from up north came down to visit. They have children the same age as ours and all the kids got to play together again.

06/05/2006 (Monday) - Took Gavin down for his X-ray in the morning ... he didn't seem to mind so much. He is still not eating well due to his endurance (which is not uncommon after surgery especially for a baby so small). We're still hopeful we can bring him home tomorrow (even with the tube). Still no final word from the doctors yet.

We got moved to a private room (bigger and not shared) which is a welcome relief.

06/06/2006 (Tuesday) - Brought Gavin to the "echo" this morning (which he didn't like at all). They rubbed a bunch of slimey lubrication on him and probed all around his chest and tummy.

Well ... it appears the doctors want to keep Gavin here until he's off his feeding tube (bummer). We met with the specialist again to try and figure out the best way to get Gavin to feed longer. We're going to try to bottle feed every 4 hours (instead of 3) with 50ml ... maybe the extra sleep will allow him to get more rest between feedings. On a better note, the results from the xray and echo were "good and as expected" ... so no additional set backs there.

Anyway... we decided to send momma home with the boys and I to remain here in Gavin's room. Hopefully momma can get some rest being back home and I'll try and work from here (there's not much else to do in here in between Gavin's feeds anyway). There's probably a ton of stuff to do back at the house (and bills to pay) ... hopefully the grandparents can come by and help with the kids.

Update from 5/17 - 6/3

Hello everyone. First off, we would really like to thank everyone for their thoughts, prayers, and support over the past few weeks. They have really come at an important time in our lives and it means much to us to know now much our friends and family care.

I've been meaning to post Gavin's progress for awhile and am now getting time to do that (it's been an unbelievably busy time for us). So, let's get caught up with how we got to where we are now.

What's happened?
05/17/2006 (Wednesday)- Gavin and his twin (fraternal) were born and delivered via C-section at around 11:14 a.m. Gavin (baby A) was 4 lbs 10 oz and Nathan (baby B) was 6 lbs 3 oz (momma was almost 38 weeks along). In the operating room, immediately after the deliveries, was the first time I noticed anything was wrong. I saw the pediatrician assisting Gavin's breathing with some sort of bag like contraption. After a few minutes, both boys were whisked away to the nursery and I followed a bit later while momma went to the recovery room.

In the nursery, both boys were poked and prodded and given baths. Gavin's oxygen levels, however, were low and they decided to do a chest x-ray and later to put an oxygen hood over his bed. By this time, momma and I were in her room feeding Nathan and getting settled in. We were then told that Gavin was being sent to the regional hospital for an echocardiogram. Later that night (around 7:30 pm) we were told that it was decided to send him to the children's hospital and that a helicopter would soon leave to come pick him up and transfer him there.

Later that evening, the pediatrician came to see us and described a few complications with his heart that could be wrong, but he wasn't sure but said the children's hospital would know once they've examined him in more. Here's what the pediatrician observed. When Gavin was born, his heart rate was extremely low (10 beats/minute) thus the reason for the breathing assistance. Once they got his heart rate up, they were hoping he would recover normally in the nursery, but his oxygen levels were getting worse (the oxygen bubble wasn't helping). He did the "echo" at the regional hospital and sent it to the children's hospital and it was decided he would need to be taken there.

05/18/2006 (Thursday)- We were still at the women's hospital waiting for momma to recover. Gavin continued to be stable was the update from the children's hospital and were told he had a ventricular septal defect (VSD) which is basically a hole in his heart. Later that day, we would also find out he also had a pulmonary stenosis.

05/19/2006 (Friday) - Momma is discharged from the hospital and I leave for the children's hospital in the central part of the state (about 3 hours away). Upon arriving, I meet the nurse and spend a few minutes with Gavin. Then I meet one of the doctors here and he describes Gavin's condition as Tetralogy of Fallot. It's a pretty complex condition to correct and made worse by Gavin's small size. He said the surgeons will meet the following Monday and decide upon what to do. The options at this point were to put in a temporary shunt in his heart to get oxygen to his lungs or to keep him on the medications (prostaglandins) keeping his ductus arteriosus open until he gets to a bigger size and do the full fix. Fully fixing the condition would require correcting the hole in his heart and then putting in a conduit to fix the pulmonary valve.

Spent the next few hours doing paper work (admissions, insurance, etc) then grabbed a quick bite to eat in the cafeteria (they got veggie burgers!). Went back up to after eating and read to him to about 1:00 am that morning then somehow managed to drive myself back to a friend's house to crash for the night.

05/20/2006 (Saturday) - Showered, ate cereal, then went back to see Gavin. After a few hours, drove back home.

05/21/2006 (Sunday) - Picked up momma and the rest of the kids and headed back down to the children's hospital (my papa and grandma came too, momma's parents went ahead earlier). Spent more time with Gavin while the other kids played out in the hospital playground.

05/22/2006 (Monday) - They decided to do the surgery on Wednesday to put in a temporary shunt. They decided not to keep him on the prostaglandins and wait for him to get bigger because the prostaglandins can actually inhibit growth (thus counter productive). Family from down south came up to visit (my grandma, aunt, and a cousin). Grandma has alztheimer's disease and it only seems like just a few years since I last saw her ... what I didn't realize is how bad it had gotten ... she frequently didn't recognize her own son (my dad). After the visits, we headed back home for a new round of supplies with the intention of coming back down the next day.

05/23/2006 (Tuesday) - Momma and baby Nathan both had Dr. appointments which went well. We got a call from the childrens hospital that the surgery was pushed to Thursday, so we spent the rest of the day getting things ready to leave on Wednesday.

05/24/2006 (Wednesday) - Headed back to the children's hospital and got settled in at the hotel. Went to visit Gavin when we could (in between the other kids naps and feedings which can be real tricky). Some good friends met us down here ... they brought the boys some toys and brought us dinner (take out from the "China bistro") later that night.

05/25/2006 (Thursday) - Spent most of this day at the hospital. Surgery started about 1:30 pm or so and was done in a few hours. Everything went well except for a "rather exciting ending" where his oxygen levels dropped unexpectedly. After correcting that, he was taken to his recovery room in the ICU. We got to see him after about 30 minutes. They had decided to keep his chest open in case they needed to go back in quickly if any complications occurred during the night. He had lots of things hooked up to him ... there were mores tubes and wires showing than baby. However, this bday boy was happy his son came through ok, best gift I could have received.

05/26/2006 (Friday) - More visits to see Gavin. He appeared to be recoving nicely and nothing happened during the night. Left momma at the hospital and attempted to take the other two boys to a local children's museum nearby in the downtown area but there was some big event planned for the weekend and impossible to get where I needed to go with all the roads being blocked off. So, we went to the small aerospace museum they had nearby.

05/27/2006 (Saturday) - More visits with Gavin.

05/28/2006 (Sunday) - Headed back up home after a visit with Gavin (whose still recovering well.)

05/29/2006 (Monday) - Memorial day. Spent all day cleaning house, mowing the lawn, washing the car with the boys, etc. Lot's of things to catch up on. Gavin still recovering well (he has his own dedicated nurse 24/7).

05/30/2006 (Tuesday) - Back to work!?! Worked from home most of the day catching up with emails and such. Debating with momma the logistics of how to go back down next. My suggestion was for her, Nathan, and her sister to go down and I would stay home with the boys. That would give her the flexibility to see Gavin anytime w/o worrying about the other kids. It would also allow me to work some more.

05/31/2006 (Wednesday) - Went to the office and expected to put in most of a full day but the hospital called an hour or so later and said they were moving Gavin to the recovery/step down area and we would have to stay in his room 24/7 now. Oops ... went home, got things packed and headed back down with the family.

Gavin's recovery room is a semi private room (there's a curtain in the middle). Because it's a shared room, momma and I can't both stay (not that we'd want to with all the kids anyway). Momma took the day shift with Gavin and I took the night shift. The idea is to learn to take care of Gavin here before we take him home. So, that means feeding him, giving him meds, watching his monitor, and all that other baby stuff. Interesting enough, the other family in the room is from the same home city as we are.

06/01/2006 (Thursday) - Getting into the routine of taking care of Gavin at the hospital. At this time all he has in him is a feeding tube (in his nose) and some monitoring wires. Gavin feeds every 3 hours via a bottle and anything left we have to "tube" (i.e. use the feeding tube). He has plenty of momma's milk stored at the hospital. They add some extra formula to the milk to increase his calorie intake. Unfortunately due to his small size, he has little stamina to actually drink the entire bottle of milk and often falls asleep halfway through it.

Got a chance to stop in at an office we have here in this area (not too far from the hospital) to drop off some paperwork and visit some of my other teammates.

06/02/2006 (Friday) - Ok, a specialist comes to work with Gavin's feeding issue and suggests we alternate tube feeding and bottle feeding, that way he gets more rest (6 hours between bottle feeds). That seems to work somewhat. We also try a differerent nipple on the bottle and other various techniques to keep him awake and sucking on the bottle.

06/03/2006 (Saturday) - Still working on the feeding situation. He gets awfully tired. Everything else looks good with Gavin (relatively speaking). There's a possibility we might take him home on Monday after some tests. The biggest concerns the doctors have is leaving the feeding tube in, but they will look to see if there's someone local in our area who could replace it when need be if we were to take him back home.

My parents came down for a visit and to help take care of the other kids. Poor fellas, I know they are missing home ...