Landed

Well, we landed back in Seattle. This time it is a scheduled trip for a checkup. We had a pretty easy flight actually. The boys slept most of the way!

Canoe flotilla!

We got Lydia on the river with aunt jo.

Rodeo

Went to the rodeo last night. It was a good time away from the kids. Today Lydia goes to the fair. She is going to have such a great time!

Last night

We kind of all got some sleep... All the kids stayed up late and didn't get to bed until almost 10! Henry got a bottle, then he didn't go to sleep, he wanted up. So we got up and I fed him some banana which he loved. Then later on when he was finally more tired put him back down and he drank another bottle! He ate over 6 ounces and a quarter banana. That is a LOT for him.  He didn't eat until 5AM and only woke up once I think wanting a pacifier and blanket back on.  So that was AWESOME.

Except that when he woke at 5 everyone else woke up. Lydia woke up and threw up. She has been battling this on and off again sickness that we all have. Random days of fevers, yesterday she had a headache and sore neck or lymph nodes. Liam has had strange feverish days like that too.  So far Henry seems very healthy though.

As for me, I think my ear is slowly getting back to normal after over a month of it being clogged. Yay! Polly and Linda sent me for a massage on Saturday and it was fantastic.  I've always been a little weirded out by the the whole massage thing but this place was 5 stars.  If you're nearby, Misty's Salon in Missoula and get Fenesa.  Completely professional and seamless massage.  I left feeling amazing and will definitely go back.

Happy Henry!!

It's with great pleasure that I say Henry is doing very well lately. And the whole family too!

He has gotten through the issues that landed him back in Seattle and is done with the special formula that he had to drink. He is eating new and exciting foods! We still are avoiding dairy products since he is allergic.  Still, it's very liberating to be able to feed him mostly everything.  He rolls easily from back to both sides and from front to back. In fact, he won't stay on his belly.  He just rolls right over. He's been very playful and happy.  We think he might be waving and he sure has more word sounding sounds.

Henry's quick trip to the hospital

Well after we all got the virus going around Henry finally got it.  I got an ear infection and congestion, Liam had double ear infections and then Henry got ear infection(s?) and lots of throwing up.  He had to go to the hospital because he was getting dehydrated and couldn't keep anything down and was miserable. So we took him in and got him some IV fluids and antibiotics and he was feeling better and just came home today.  2 nights and 3 days in the hospital. At least we didn't have to go to Seattle or anything. I'm so glad to have him home and he was so excited to be home and see his brother and sister. It was great to see.

Also ...

I think he said dada this morning!!

Hey that's a new tooth!

Henry got his first tooth!  It broke through the skin on the bottom.  Here's to keeping up!

Kickin!

Henry is doing so well lately. He's been eating good amounts of food and playing a lot. He went to the doctor today and no problems. I get nervous lately when he has a DR appt after the surprise that landed us back in Seattle. Well not this time. Lydia on the other hand has been a wreck lately. Not getting good sleep and refusing to go to bed... up early. She was so exhausted tonight she crashed hard.

Well, OK. That's good.

Henry had his doctor appointment yesterday and he is still in Montana. No sweeping off to Seattle for us this time.  He gained some good weight and was at 13Lbs 1 oz. No reaccumulation of fluid around his lung and is eating and playing and generally happy!  So I guess he's doing great!

Also, Liam is doing great as well.  He eats a lot and is getting a little closer to sleeping through the night. Still one or two wake ups.  Lydia is great as always and likes school.

Back to the basics

Well, we've been home now for a little over a week and things are going well.  Henry is back to his happy self and plays, smiles and laughs.  He really likes to watch Lydia jump all over the place.  He goes in for his checkup today to get weighed, measured, stitches out, an ultra sound, and xray.  I'll post again when we see how he is doing.  I hope we see some weight gain and no re-accumulation of fluid and good heart function.

We are continuing our search for a nanny/helper and we might have found one.  I hope it works out because we could use some sleep and need help during the day.

Free at last

One last Xray and now we are free to go home!! Hoooray!!

Sent from my iPod

D-R-Y dry

Henry has stopped draining and they almost took the tube out today but figured one more day to be safe.  One more x-ray that looks good tomorrow and they can take it out!  So that is great news.  Then he would not have any lines or anything in him.  They didn't even place a new IV when they took his other one out.

Some back story

So here's how we think this happened. For some reason in his second
surgery part of his lymphatic system got injured. This can happen as
they are getting access to the heart to perform the surgery. This is
what caused the fluid buildup. It is called a chylus effusion. There
was also some narrowing of his left artery which reduced blood flow.
One or both of these conditions reduced the flow to his left lung
which in turn allowed clots to form. Thank goodness this was spotted
by Catherine who does his weekly ultrasounds.

No more interruptions please

Nice! Looks like the draining has slowed to a tiny amount or possibly even none. So a couple of changes for today:

• Increase the calories in his formula so he gets more nutrition and starts gaining weight again.
• "Plug" the chest tube to see if anything re-accumulates. Maybe take the tube out tomorrow?
• Switch from IV heparin to Lovanox (shots) so we can go home on that.

All in all we are making some good progress towards getting out of here. Henry is mostly back to his normal playful self.  His vocal chords got a little scratched or something so his voice is very quiet.  It's like when you lose your voice for a couple days.  Sometimes he tries to make a sound and nothing comes out... but he does make quiet little sounds when playing and can cry still.  Almost there.. go Henry!!

Allowing myself some hope

Up until now I haven't even thought about when it would be over. I knew that it would be some time and we were always waiting for the next thing which was in a day or 2. Well now we are just waiting for his chest tube to stop draining. This is now excruciatingly slow since it is the last thing we need to resolve. It seems to be improving so that is great. If he continues to do well and the formula that we've chosen is effective then maybe by then end of the week the chest tube can come out! I'm really trying to not get too excited by the prospect because I know that it can still be much longer if it just continues to trickle. Then some other options may need to be explored. So .. slow steady progress. That's good right?

Also, my sister Kelly and Katie were here for the first day today and it was nice to have them here. Katie liked playing with all the new things and Henry. She drew him a nice picture which I hung up on his crib. Tomorrow Polly and Liam are driving out here too. I can't wait to see them again even though it will be more of a challenge to balance.

That's all for the update, now off to try to sleep!

Contact info

We are out of the icu now! If anyone needs to contact us we are back in
room 4017. Best
way to get in touch with me is to call (406)546-7442 or email is quick
for me too robrbecker at gmail dot com

Break time with a happy ending

Travis and I had a nice day going around downtown Seattle.  Henry was snowed most of the day so we decided to go downtown and explore.  Then the Ronald McDonald house had some tickets to the Mariners game so we just grabbed them.  We walked around in the nice weather, shopped a little, stopped in a pub for a pint got some sushi for dinner and then walked down to the ball game.  Of course stopped at the Pyramid brewery next to the stadium before heading in.  Then we met up with the other folks from the house and watched the game.  What a day!  Could we top that off?  Well, we went over to the hospital and Henry is awake! Just hanging out and pretty happy.  I talked and sung to him and he kicked and played a little bit with his toys with me.  It was so nice to play with him again!  Also he has been eating the formula they picked out and has not thrown up since he got his breathing tube out.  Tomorrow I'm betting he will be feeling even better.  Maybe Monday we can get out of the ICU??

Henry is in the icu again

Well, the other day after we had such encouraging results from the
latest cath he crashed. He started bleeding after they repositioned
his chest tube and since he was on blood thinners it got serious fast.
Everyone jumped into action and now he is in the ICU again with more
things in him. The breathing tube is likely to come off today and then
we can start to introduce some food after a couple good hours.

He wakes up a little here and there to look around but is pretty
mellow. I sure hope that we get back to happy Henry soon.

Thank you to everyone who has sent their prayers and assistance. Teri
and Geri are leaving today. It was nice to have them here. Now Travis
is here through the weekend to keep me company. After that I'm back on
my own. Still no definite end in sight but I am guessing maybe another
week at least.

Good News!!

Henry went in to his cath again.  They had ballooned his left pulminary artery on monday and here we are on thursday in the cath again.  Well, almost all of the problems that we were worried about after that one are looking great in this latest look.  The flow to and from the lung looks much better! There are 4 clots that we are addressing with blood thinners and are improving and not getting worse. That's awesome! I'm so relieved to see his heart function looking so well.

Wow this is repetitive

I haven't even been here a week and already getting stir crazy.  Poor Henry is stuck in this room. At least I can get up and walk around.  The nurse Kristen said we can get him up in a stroller and take him for a walk for a short time. I'll work on setting that up for later.  He is onto his low fat formula to help his fluid drain.  Less came out overnight but I don't think we are done. Tomorrow everyone meets to discuss the plan of attack.

After Henry wakes up from his nap I'll try to hold him over in the chair and show him pictures of his family.
We can't seem to work out a plan to have Polly get out here that doesn't make things harder.  Anyone willing to come out and help a little during the day?

More challenges

Well, I'm sorry to say that things got harder and not easier after his latest heart cath.  He has narrowing and low flow to his left lung. Yes the same left lung that was surrounded by fluid.  Low flow leads to blood clots.  So now he is on blood thinners to slowly break up the clots and prevent new ones.  They ballooned his left pulminary artery to increase flow that way. It wasn't a super solution but the best they can do right now.  He'll have to have another one of these to replace the balloon with a bigger one as he grows (in 6-9 months). We also have to learn to give the blood thinner shots daily similar to how a diabetic does it. AND we still have to address the fluid issue with a low fat diet.  We have our hands full allright.

Friday update

I'm not sure what to write here.  I'm unhappy that we have to be here in Seattle again.  I think after this Henry will be much stronger.  Today they are going to check out some flow issues with his heart and maybe make some adjustments where necessary. Widen here, fix there.  He continues to drain a good bit of fluid. There was probably about 350ml built up around his lung and another 100 has drained overnight.

I've been sleeping in the room with Henry which is hard but my nice roomates gave me a bunch of tips to make it more comfortable.  I moved my bed around and asked for a foam topper for my bed which really helped. Even with all that it's really hard to be here.  I think I need help.  Maybe someone could come to Seattle and help watch Henry during the day or night so I could get some breaks and sleep?  I know Polly would but that would mean bringing at least Liam over which doesn't really simplify things.

How do you entertain a baby for days on end that has all this stuff attached to him and wants to kick and play and you only have 2 lousy toys.  The TV has been the most successful at distracting him.

- Rob out -

Back in Seattle again

Today's Dr visit they found fluid accumulating around Henry's lung so we flew over to Seattle (thanks insurance!)  We're doing our best to get rested before tomorrow.  They will drain the fluid and test it to see why this might be happening. Ok, night night.

Friday and we're out!

Henry is a rock star! 4 nights in the hospital following his Glenn procedure. Dr. Hardy called the hospital this morning to get them rolling on getting us discharged.  Thanks! We spent from 6am to about 1pm getting this and that done to get out of the hospital.  Xray, blood labs, echo cardiogram, it goes on and on. Paperwork! Then finally we are out!  Henry really perked up after getting home, having a nap, eating, and sponge bath. There's pictures here. There's some from before his surgery and some after. We'll be going home Saturday or Sunday!

Henry the Happy Hypoplast

That's the name of the kids book we are thinking of writing. (Patent pending, publishers.. call me)

He's doing so amazing!  His surgery was on Monday and they are planning on discharging him tomorrow (Friday)!  All of the things that were attached to him came off so fast.  Before he even had to get annoyed with stuff.. off it came.  I'm down on the "floor" with him tonight.  He's on tylenol and oxycodone alternating and we're trying to hold off the the harder stuff.  The morphine was over with yesterday.  Seems like his pain is coming down to a manageable level.  He's pretty subdued but slowly getting more active.  I played with him tonight and he liked to play with his pacifier and his feet.

1 more night in the ICU

Only because they didn't have a room to move him too. They expect him to move today (Thursday).  He had a great day Wednesday. Really improved. He ate a bunch from me and looked around and made good eye contact.  He should be even better today! We're not over at the hospital yet since Liam was up a lot and then went back to sleep. We head over soon.

Great progress!

Henry is getting out his chest tubes and central line IV!! He's very puffy headed but doing great.  They said tomorrow he'll move out of the ICU.  Sure seems like he is on a quick path out of here. Lets hope he keeps doing so well.

Status update

Henry got his breathing tube out last night.  His head and arms are swollen just as they told us would happen.  Not as bad as last time.  Still hasn't been awake enough to eat yet.

"It has to get worse before it gets better"

Henry sailed through his Glenn procedure with relative ease.  Dr. Permut said everything looks great.  I know they did a great job but it is so hard to see your child who was perfectly happy and healthy get all banged up.  He looks so much better than after the first surgery but still bad.  He wasn't marshmallow white.. actually his color was great and his incision looked good.  But he has a breathing tube, chest tubes, 3 IVs, sensors etc...
the ICU team is taking care if him tonight and will work on getting him off the breathing tube and probably feed him some pedialyte or milk in the wee hours.  Recovery is fast from this surgery they say... I sure hope so.

Henry is in the OR

He was so good this morning. Happy Henry all morning and didn't even complain about being hungry. He has to fast before surgery just like adults... except most of us don't cry about it.  He's being prepped and the surgery should start in earnest soon.  Should be back in cardiac ICU maybe around 4:30 or 5pm Seattle time.  I'm sure that everything will go fine. He's such a strong boy!

Underway

Henry is off.  He did so great over the night. I just picked him up while sleeping and fed him bottles so he got food right at the food cutoff times.  He drank a pedialyte bottle at 4:15am and was amazingly happy getting up and out of the house.  He was so happy this morning even without a morning meal.  He slept through all of the prep talk with anesthesia and nurses...etc Just at the last 5 minutes he started to lose it and cry a lot.  Then we sent him off and they put him to sleep and do their work.  So not so bad.  Now we just hang out. Then we'll have to do it all over again on Monday for the actual surgery.

Oh what a night

Well, we're here in Seattle for Henry's 2nd surgery. We're staying with cousins Matt, Christine and baby Dylan, who have taken us in.    This is the Glenn procedure for those who are curious.  Tomorrow morning at 7:15 we need to be at the hospital which means we can only feed him milk up until 2am.  After that we can give him water or pedialite. So woo! We'll see how those wee hours go.  This will be for an initial heart catheter.  His Glenn was moved up to this Monday the 22nd.  That works for me. Let's get this thing done with.  I'm excited to see his improvements afterwards.  So, everyone send the prayers and good vibes for those days.

The day before tomorrow

is today.  The kids are all doing great!  Henry has been so happy lately.  I'm so glad he's feeling good.  He doesn't throw up every day like he used to or even at all anymore. He eats great but still eats less .. maybe 1 to 3 ounces but has always at least gained an ounce a week.. He is nearly 12 and a half pounds at 5.5 months.  A good bit smaller than his brother who is surely over 16.  This Wednesday we leave for Seattle for his 2nd surgery.  I hope it doesn't set him back too much.

Liam is now excited to eat food! He used to throw fits about it and not want it but he has finally figured it out and is now packing in cereal. He's tried banana, pear, and yams.

Lydia is comfortable with the boys and likes to entertain them, jump for them, hug them, pet them, sing for them, talk to them, and talk and talk and talk.  She is also really excited to start reading.  She has been able to read about 30 or so flash cards with people's names and words on them which is amazing.  She wants to be able to read books so we are trying to teach her words as soon as we can... which seems effortless for her.  She'll be 3 in April.

BFF

This past Saturday I got almost a whole day to hang out with Lydia.  The boys went with Polly to Joanna's house for a friends baby shower.  There were plenty of people there willing to hold babies.  I picked Lydia up from G-mas house and we went to the Carousel for 3 rides.  On the car ride there she told me that I was her best friend which was about the cutest thing every.  Then we went to Taco del Sol to share a fish buritto. And lastly over to the coffee shop to split a cookie.  Then we went home with our sugar high and played.

Henry is growing consistently and is throwing up less frequently although he still sleeps on an incline.  He got the cold from Lydia even with all of our efforts to keep them separate and healthy.  He has a pretty juicy cough but doesn't seem too bothered by it.  He has been sleeping a little longer at night... he has done a few 3 hours stretches and one 4 hour stretch the other day. Maybe it was only because he was so tired from this cold though.  Whatever I'll take it.

Liam is consistently the most content baby I've had the experience of knowing.  He eats great... sleeps great (usually only 1 wake up) and plays a lot when you put him down.  It's a life saver that he is so good.  It makes you wonder if Henry would have been so content if he hadn't gone through all that he has.  It seems like he wants to make up for all that time that he couldn't be held.