Home.

Well,  I wrote this post a week ago,  thought it uploaded and it didn't.  Boooo. Miles AND Nolan have been home 3 weeks now.  I say both,  because Nolan was gone so much with family too.

The last three weeks have gone well.  Miles dropped two doses of meds and hopefully one prescription in mid September after an echo.  He's eating like a champ,  amazing what a working heart can do! He's even started baby food,  and is doing amazingly well.  Although it's common to have feeding/swallowing/sensory issues with the low muscle tone, we didn't think we'd have many because he chews on everything,  tolerates tons in his mouth,  and swallows well. 

Nolan has enjoyed the big brother roll more so now.  He climbs in the crib to get Miles' paci, loves to feed him,  and overall watches out for him all the time.  God must've known this plan for Nolan too.  Nolan starts full time preschool after Labor Day and he's quite excited.  It's at an elementary school near our house.  Can't imagine my 3 and a half year old eating in a lunch room.  He's ready though,  socially and academically. We've been working hard on  letters, letter sounds,  and numbers.  Almost has all of them! We took him to his first movie theater a week or so ago.  He. Loved. It.

Miles will go to a new in home daycare that we stumbled across after some failed attempts the first few months. The first one he was supposed to go to bailed on us,  freaked out,  and at 8 days old said she wouldn't take him because of "all of his needs. " She never met him or gave him a chance. Totally illegal (see Americans with Disabilities Act) and downright hurtful.  Our first bout of discrimination, and it took 8 days.  And Ryan says,  we wouldn't want either of our kids to go there anyway.  I don't usually play the Karma card,  but....

The second one we had lined up was with someone from church who was willing to take him with open arms,  no questions asked.  However,  she decided to start a different career early summer so our search was on again.  That same night,  Ryan found someone online at 9pm, called,  and we had a time set up. I told Ryan to make sure she knew about Miles' diagnosis so it wasn't a surprise,  and she also didn't flinch.  Thank God for kind,  serving hearts.  We of course didn't want to settle,  but it worked out beautifully and we certainly didn't feel like we were. She has plenty of experience with preemies and other kids with diverse needs.  However, he's more typical than different,  and we hope everyone else can see that too.

Miles can be crabby,  super happy,  fussy,  gassy, charming,  a good eater,  and loves to be entertained.  Sound typical?  We're starting to sign with him,  but we did a little with Nolan too.

September 2nd is going to be crazy.  Miles,  Nolan,  and I start a new school year. Lots of stress,  fatigue,  worries. . But most of all faith and excitement in our new adventures. Here are a few pictures from the last few weeks.

Discharge Day Tomorrow!

Yep,  we're being discharged 9 days after open heart surgery! Miles had OT today,  an echocardiogram,  and a very assertive visit from a cardiologist.  (Not our usual one. ) Although a bit socially awkward (but very smart) doctor wanted his ng tube out (we weren't using it for feedings anyways), wanted him to eat more and sleep more when HE wanted,  and wanted to look at his echo to get him off the oxygen. She also then said,  "maybe tomorrow! " I assumed she meant discharge.

We got good news from the echo,  his pressures were down and didn't need anymore oxygen.  He still has a little hypertension and pulmonary hypertension,  but is quite typical as things balance out in his healing heart.  There's still some "regurgitation, " or leakage from his repaired valve,  and he may always have that. We expected that,  but shouldn't create problems in the near future.  He is at a "plus 1" with that,  on a scale of 0-4, 0 being no leakage. 

He was thrilled to get the tubes off his face and socks off his hand so he could bring it to his face without pulling tubes out.  He only has his heart monitors on now.

Although discharge is tomorrow,  we're sure we're not going anywhere until tomorrow late afternoon.  Things run slow,  especially with getting all the info from the team he's had while here. 

So we go home with a few meds,  but an overall healthy,  happy baby who used superhero strength to overcome what would take us weeks.  Although they require all cardiac patients to relearn cpr, still stinks to think we'd need it.  Although,  we're just as likely to use it on any other infant we know too.

Here are a few pictures of happy Miles,  our psychedelic room (there are tons of funky lighting options in each room!),  (and an outside view of some of the rooms lit up at night), and other stuff. ..

We got to the enormous room,  just in time to go home 2 days later.  We'll take it though.

No room at the Inn

Well,  today was the best day we've have yet.  Miles is eating from a bottle like a champ.  They told us to watch out when he started eating,  because he was going to eat waaaaaaay more.  He sure is.  He used to eat only 3 or 3.5 ounces every 2-3 hours,  and that was WORK for him. Today Ryan fed him 4.5 ounces in 10 mins.  His goal is about 4 oz every 3 hours.

He used to exclusively nurse,  but it started to be a lot of work for him when his heart started failure,  so we did fewer nursing sessions and more bottle sessions with breastmilk.  I knew bottle feeding would be the easiest in the hospital,  so we worked hard at making him take one. Now I think he prefers it actually,  much faster and easier to get the goods!

We were supposed to be moved out of the picu but there was no room for us upstairs! So we're hanging out one more night here.

We got to see and squeeze and snuggle Nolan today and it was fantastic!  We're not going that long away from him for a long time! He did great with Miles, only asked about his oxygen. The child life specialist brought him a stuffed monkey with an oxygen tube attached that he got to take home!  It was his job to help take care of the monkey while the hospital takes care of Miles. We also went to lunch and played on the playground here.  He's excited to visit the new for so he can play in the big playroom.

Miles got his drainage tubes out and his pacer wires.  Although he hasn't been on anything stronger than Tylenol for awhile, they gave him a dose of morphine before doing it.  All those tubes are sutured inside of him,  so taking them out isn't pleasant.  I wasn't in there,  but Ryan stayed. Ryan actually enjoys comforting Miles and watching all those procedures.  He's mostly curious to see what they're doing.  I have no curiosity in it.

Miles is getting his strength back,  trying to talk again,  and finally smiling again!  We knew this surgery would put him back a bit as far as developmental things,  mostly because he won't be doing a lot of strengthening stuff and he'll be sore.  He was decent at rolling prior to surgery,  but with sternum restrictions and pain,  he won't be doing that for awhile.

Ryan just brought back dinner,  we're off to have a romantic dinner on our pullout chairs. :)

Friday continued. .

Miles got his lines out of his groin and neck,  and they placed a peripheral line in his arm. He only has his oxygen left (but only getting a very small amount) and an ng feeding tube for a "just incase" means to give meds and milk.  The good news. . He started to take a bottle well.

We tried a bottle this morning,  it took him some practice and we also had him sitting up a little in his bed.  Not ideal eating situation,  so the Speech clinician said we should try tomorrow.  But he was soooooo hungry!  We had a really proactive nurse who saw lots of potential in his eating ability and got permission to try again without speech.  So we did. . And he ate 3 oz over an hour and a half time span.  In order to get that feeding tube out, he needs to eat 3 oz every 3 hours.  I'm so glad we practiced (forced) the bottles at home the last few weeks,  because it is making a difference.

I also got to hold him for the first time and he would've loved it more at first if he weren't so hungry!  He ate,  then cuddled,  and then napped.

Picking up,  holding, burping,  etc. of a post open heart kiddo is not the easiest!

And actually,  he does still have his drainage tubes (which we got a disgusting amount of fluid out while holding him more upright! ) and his pacer wires in.  Those should come out tomorrow,  and Those. Will. Hurt.  If his feeding goes well through the night,  I'm sure he'll get moved to a different floor tomorrow.  Our nurses have already been shared the last two days.

Can't wait for a bigger room and tv!

Friday

Yesterday was a rough day. .. Miles wasn't comfortable and got some not so great news.  He has hypertension and pulmonary hypertension.  Both can be typical after surgey,  but may need to eventually go home on those meds.  (Which they say happens a lot) His heart and lungs have had a lot of trauma,  so it'll take time to get things figured out. He also has been very backed up gastrointestinally, and currently has "ileus" where the stomach and gastro stuff isn't working much.  Over time,  it'll come back.  He's just been sedentary and doped up a lot the last 4 days. He also had a little bit of fluid in one lung that they're trying to get out.

On the positive,  we'll try bottle feeds hopefully today.  The line in his groin will hopefully come out today.  Chest tubes still have drainage,  so probably tomorrow.  He's only getting .8 of a liter of oxygen so that they're going to try to be done with today.

He's only on Tylenol for pain,  another thing that helps with "agitation" sometimes,  and now his two hypertension meds.  One of which is viagra. Yep,  guess that started as a hypertension drug,  and they soon realized the "other side effects. " He won't have those though,  not a high enough dose. 

We finally get to hold him today.  He wants to be held and touched so bad.  I hold him upright in his bed thing and bounce him a little and he loves it. His incision is now left open

We've learned that you take 2 steps forward and one back.  We kind of hit the back,  but are looking forward to the 2 ahead.

Lots taken out!

Miles had his ventilator taken out,  NIRS (forehead thing), catheter, and he got off his epinephrine!

He did well being taken off the ventilator.  Poor guy sounds like a kitten.  He has a sore throat,  little swollen,  and it'll take some time to get his vocal chords back to normal.  He is on a wee bit of oxygen which is normal through his nose.

OT just stopped by for his first visit.  Got him doing a little tracking and sat him up for awhile.  He did pretty well,  considering he's doped up on some morphine.

Here's a pic without as much junk on his face. 

Ventilator coming out soon!

Last night my mom and sister visited, and my mom said "You must be really tired, you have spelling errors in your posts!" Um, yes to both.  Monday we were running on adrenaline, the last two days we've been able to sleep, just not ever get caught up and feel uber refreshed.

Miles is on very mild sedation but they're slowly taking him off that more and more. He's had many practice runs off his ventilator and has passed with flying colors, so after rounds this morning, the RT is coming to take it out. I hear they want him very awake, and very pissed...(weird, but that's how they knew he's awake and alert and ready). It hurts being taken out, and makes for a real sore throat after.  But, he'll be happy to get it out. HE HATES IT. He does have periods of semi wakeful ness, responds to our touch and voices, and shows pain and discomfort by grimacing.  However, that's probably just not pain and discomfort from the ventilator, it's also extreme gas that has built up in his guts from the ventilator and chest drainage tubes.  I probably won't be in the room when they take the ventilator out, Ryan said he will though.

He also has pacer wires still in, which are attached to his heart. He isn't on any external pacemaking machine anymore, which is great, but the wires are there just in case.  When those come out (probably late today or tomorrow) they literally yank, FAST. An MD does it. Also, his chest tubes will also be taken out, and I think it's those or the pacemaker wires that have sutures inside that after they pull them out, they internally suture a little.  Older kids have said that those chest tubes hurt worse than the incision site.

We haven't seen his incision site, but we learned it's glued together. Yep, glued. No Elmer's here, but some skin glue.  Inside he has some metal wiring closing his sternum, and a few layers of internal sutures. I thought for sure we'd see a Frankenstein, stapled wound. Guess it won't be the case. 

Yesterday Nora and I went to Brueggers across the street for a quick lunch. (She works across the street from Amplatz) Ryan was at work, and Miles was still pretty out of it so it was a good time to go. And it was nice to feel the sunshine!  Later, my mom and sister drove up for the afternoon to see us.  Grammy had tears, but got it together real quick and promptly began asking the nurse questions and telling her what Miles needed or should have. "I think he'a cold. I think he's in pain, etc." Ha, I'm guessing that's pretty typical of grandparents.  They didn't mind though.  Nora and Mike brought back a big meal for us to eat last night.  The food here is not so great, typical hospital food. Over priced, not very good.  Parents don't get to eat for free, even nursing mothers. That totally baffled me.  I'm sure insurance is paying for all room and board, and food is included in that. I mean, Miles totally needs french toast, oatmeal, and chocolate milk for breakfast. :)



The ventilator come out soon, the yellow ng feeding tube has just been to get a wee bit of breastmilk in him. They stopped feeding 4 hours ago, because they don't want him puking when the ventilator comes out.  We'll bottle feed this afternoon! The thing on his head is some sort of thing that meausures brain activity. That comes off today too.  Late tonight or early tomorrow, the line in his groin will come out too. Slowly but surely, the tubes are coming off.




Ryan decorated Miles' door. Other kids had stuff on their doors, Ryan thought he should too. And he thought it was a good idea to let people see what he looks like without all the wires. Most of the kids with decorated doors are kids who have been in the PICU a very long time. Guessing most are transplant kids.




Ryan working from the hospital room for a little bit this morning, awaiting the ventilator removal.