Getting Bigger

I know it has been a while since I have posted.  My only excuse is that we are ridiculously busy!  It has something to do with having two little boys :).

Jacob is doing great.  We've been going to the cardiologist every week, and he is steadily gaining weight here and there.  He just broke 4 kilograms yesterday for the first time, so he has gained 1.1 pounds since he has come home!  Everything else is also looking great for him as well.

Our Little Boy

Ethan is also really enjoying having a little brother, despite the fact that he doesn't get quite the attention he used to.  He has really taken it all in stride and is doing so well.  It is just crazy to think how much he has grown up through this whole experience.  He loves his little brother a whole lot!

Big Brother

Big Kiss

Buddies

Jacob has been doing great on his feeds (obviously) and sleeping well through the night (except for when we have to wake him every 3 hours to feed him)!  The nurse started this week for 8 hours a day 10-6 PM.  She has been great and is a relief for Angie, especially knowing her mom is headed home next weekend.  Speaking of Angie's mom, she has been a huge help for us and we are really going to miss her!  It is going to be pretty crazy without her here, but we'll manage one way or another.  We are definitely thankful to have the nurse during the week so Angie can get a few things done and entertain Ethan.  Our dog and cat (Cody and Cashmere) came home this week, so we really have a zoo now at home!  We are happy to have everyone together though!

All in all, Jacob is doing great and progressing along.  We have a couple of more weeks of going to the cardiologist each week, then we'll be every other week which will save us a bit of driving!  Sorry again for the lag in updates, but he is doing well and thanks everyone for the thoughts and prayers as always!

Home!

Well, Jacob finally did it, he made it out of the hospital!

Welcome Home!

We are so proud of our little boy!  He had a great weight gain Thursday, so they decided to let us go on Friday (we didn't find out until 11:30 AM).  He also got to go home with no NG tube, which is a great thing!  It was a rush after that!  Between packing up at the hospital and the Ronald McDonald house, we had a lot of work to do.  We finally got on the road at 6:30 PM after a lot of work (Angie did most of it).  It was a relief to finally get home and Jacob did pretty well on the drive without fussing too much.

Nana (my mom) was nice enough to go to the grocery store for us before we got home, so our fridge was stocked.  It is hard to believe, but it was 5 weeks since we had been home!  Needless to say, it was good to be here!  The first night went fairly well, though Jacob fussed till 1 AM :).  Nonetheless, today we are getting everything unpacked and reorganized for our new addition.

Ethan has been a great brother so far.  He has really taken it in stride which has surprised us and he is just happy to be home.

We are still waiting for Cody and Cashmere (dog and cat) to come home in the next week or so.  Cody has been fighting a pretty bad illness since we've been gone.  Our Vet initially thought it was a partially torn ACL as he was limping, then the next vet thought it was a tick borne illness after that and treated it with antibiotics, and then after that didn't work, he definitely has some form of pneumonia, which is appears to be fungal, which is being treated now.  Thankfully my mom and dad have been taking great care of him and he will hopefully be on the mend.

On Monday, we have a home health nurse starting who will be here 5 days a week from 9-5 pm for about 2 months or so as part of the Heartest Yard program (see link).  It is an awesome opportunity for us to get settled when I go back to work.  We are very thankful for it!

Angie's mom is still with us for a little while longer.  She has been such a great help, I can't even imagine what it would have been like without her.  I can't begin to express how much we've appreciated having her here.

So, this big first step of the journey is done. The next step, is still a big one.  The interstage time (between his first and second surgeries) is very critical.  We have to do whatever we can to avoid him getting sick, as his body would have a hard time with a respiratory illness especially.  There is still plenty of risk at this point and we will be working hard to keep him isolated for a while.  So no trips for him to Walmart (darn) or going out to any restaurants (like we would be able to with 2 little boys at this point!).  The good part is that now he is pretty much an infant like any other, just with a few meds.  He went home with a Beta blocker (for his tachycardia) 4 times a day, Zantac twice a day, Lasix (water pill) twice a day, and a quarter of a baby aspirin once a day.  The breastmilk he gets will still be fortified with formula as he needs more calories than a normal baby just due to the extra work his heart and lungs have to do and they want him big and fat before the next surgery (there is a ton of research that points to higher weight leading to a higher success rate on the second surgery).

Thanks to everyone for the thoughts and prayers that have helped us get this far.  It was a tough time that we are glad is behind us, and now we just get to deal with the normal challenges of having a 22 month old and a newborn for a while.  Jacob will be having weekly appointments with the cardiologist (in Hickory, an hour drive) and normal appointments with his pediatrician.  I'll keep the blog updated periodically to let you know how it is going!  Again, thank you for all of the support.  I'll leave you with a pic of the new family (minus me)!

Can't Wait to Go Home

First, sorry for the lag time between updates, it has been a busy week because Jacob is getting to be a busy boy!  He is awake a lot more and fussy a lot more like a normal baby should be :).

This week we've taken out his NG tube for a couple of days now to see how he would do without it.  He has done well with it out, just not quite at the full volume of feeds we'd like.  They were talking about discharging us today to go home, but he didn't gain weight yesterday (didn't lose either), so they want to see a couple days of weight gain before he goes home.  That is a big disappointment, because we are all ready to go home!  That being said, it is really important for Jacob to gain weight so that he is a healthy boy, so hopefully he'll be chowing down today and will gain some weight!

We've pretty much checked all the boxes off to go home training wise.  Angie was able to get him through the carseat test - he had to sit in the car seat for 1.5 hours straight without any of his stats going down.  The first two tries he screamed the first 30 mins, so she tried again, then the second day was the charm, he slept the first hour and she just had to calm him the last 30 mins.  Needless to say, the ride home should be interesting!

Here's a pic of him sans NG tube:

Handsome Boy!

We've also been able to take him off of the monitors during the day, so we can walk around the room now at our leisure without having him hooked up to something!

Today he is doing well on his feeds so far, so hopefully he'll be able to go home in the next couple days!!!

A Good Weekend

Jacob has had a good weekend overall.  He is improving on his feeds and taking half or more of them by bottle before we have to give the rest by NG tube.  Today he had a follow-up chest Xray and it looked great, there isn't any recurrence yet of the chylothorax so that is awesome!

We increased his feeds up a little more (10% more in volume) and added some more calories, up to 27 calories/ oz (breast milk is normally 20 calories per oz) in order to help him gain weight.  He still has yet to gain much weight as we are fighting a little bit with him vomiting some feeds (once a day or so) so that sets him back a bit, but is pretty normal (imagine if you had a tube down your throat, holding your flap slightly open to your stomach all the time).  So we are being extra careful to help try to prevent that.

Here is a pic of him sleeping:

Sleeping Turtle

Three of his grandparents came to visit him, as well as his brother today!  Ethan was scared of the hospital and I really don't think he even grasped what was going on!  But everyone enjoyed seeing him and hopefully Ethan will catch on a bit!

 

 

With his Nana

Jacob did gain 50 grams today, so hopefully that trend will keep up!  I'm hoping we'll be out of here soon and headed home for the next part of our adventure!

Light at the End of the Tunnel?

We are starting to see the light at the end of the tunnel!  It is a scary thought in some ways; going home without 24 hour nurse support, but Jacob is doing pretty good.  As I've mentioned in the last few posts, feeding has been tough, but he is starting to catch on.  The last couple feeds he's been able to take about half of them by bottle (just a few days ago he was gagging and hardly able to take the bottle).  He gets tired after about 10-15 mins and we'll feed the rest via his NG tube.

We switched to a different formula yesterday to fortify the breastmilk and he has done much better.  The output from his chest tube is minimal and we'll hopefully be getting it out today or tomorrow.  He also will get the last of his IV lines out tomorrow, so all we'll have left hanging onto him are a Pulse Oxygen sensor, some EKG leads, and his NG tube.  It will definitely make him easier to maneuver, though we've been able to hold him while feeding him and other times without a ton of trouble as long as we are right beside his bed.

The next things on the list are mainly feeding related, working up his calorie content of his feeds and being able to take more and more by mouth.  Angie and I also have to watch several videos here and there (Purple Crying (in his case it would probably be blue :) ) and CPR and some more training on drawing his meds and so forth.  I am really hoping that we'll be able to go home by the end of next week!  Hopefully I don't jinx us b/c a lot of things can change!

Keep praying for him to go home (and stay there :) )!

New Digs

Yesterday we did end up moving up to the 8th floor Progressive Care Unit.  It is a pretty decent change as Angie and I are meant to transition to more of the care.  They also do a lot of training for the parents on how to care for the children.  We've been paying attention, so it hasn't been a huge learning curve.

I spent the night with him last night and he slept well, luckily for me.  I did his 12 AM and 6 AM feed and the nurse did the 3 AM feed so that I could sleep :).

Jacob still has his chest tube in, they are still watching the output of the tube to make a determination on the chylothorax.  We are now supplementing the breastmilk he is getting with additional formula (was normal formula, now it is a special formula to help with the chylothorax) to increase the calories to make him big and fat!  In the next day or so, they'll remove the chest tube, so we'll have a little less to maneuver around with.

We also have a speech therapist who is helping with his feeding (bottle).  Believe it or not, even though he was feeding ok by bottle before his surgery, due to being intubated, his muscles lose their strength and make feeding tough.  He sucks the bottle well, but his swallowing isn't quite meshed with it.  It was really surprising to me, but it is very common to have feeding issues; I was just confident that wouldn't be the case!  In the meantime, we are feeding him via NG tube (a tiny tube that goes through his nose and down his throat into his stomach).

We also have a occupational therapist who comes by a few times a week to help with some developmental things.  Things as small as how he grips his thumb in his hand can be something we will work with him on.  Nothing too major though, just need to do a few things to catch him back up with the other babies!

Today he is struggling a bit with his feeds as we've changed him over to a formula to help with the chlye and his tummy doesn't doesn't seem to like it too much.  We are going to try to ease him into it in the hopes that it will work!

We also got a checklist of things we have to do before he can go home now, so we have a new goal to work on!