my favorites from this week

wary sister:sibling smiles:
a glimpse of our future?:

PT report and more appointments

PT went well Monday. Athan worked really hard for the full hour, and only complained a little when she insisted on making him use his arms. :) We still have hours and hours of hard work ahead, but I'm encouraged about his progress.

We went back in to see Dr. Coburn yesterday because the last round of meds (antibiotic, etc) didn't seem to help this cough at all. He snapped a chest x-ray, and recommended that we see cardiology. He may need a higher dose of Lasix if there is fluid build-up left from surgery or something. We'll go in to Lexington this morning for and ECHO and appointment with Dr. Kakavand.

busy

Last week was nuts around here. I think Morgan was the only one who remained 100% all week. Athan has a cough. Ryan hurt his back. I hurt my foot trying to take care of Ryan's back. It was crazy. Ryan and I were both so far out of commission (him unable to stand up and me hopping around one one leg) one evening that we had to ask a friend to come over and rock Athan to sleep (thank you again, Jason). Then when we had recovered a little, the kids and I left for Nashville to pick up Grammy and bring her home. Whew.

But we're better and more settled now. Ryan's back is better (thank you, Lance!). My foot is fine. Grammy's here. We're all just relaxing a bit. All except for Athan, who is still trying to kick this silly cough. Yuk. He had a bad reaction to one of the meds, so things have been better since we stopped giving that.

Laurie will be here again tomorrow for physical therapy. Athan has regressed a bit (as we expected) since surgery, but we are beginning to be able to work with him to catch up again. I think he is beginning to be frustrated by his lack of mobility, which will be good motivation for him to work hard and learn how to overcome that.

Stay tuned for info about celebrating Athan's First Birthday at the end of this month! :)

back in a couple days

The kids and I are heading to Nashville to pick up Grammy Tammy. Be back here Friday. Will post more then. :0)

the post- post-op blog post

An illustrated summary.

It was difficult to really believe that my son needed heart surgery when he looked like this:
Still, we knew he needed the surgery. The procedure itself was difficult time to endure, but the toughest moments were these:
With much prayer from family and friends, plus lots of help from some super-skilled nurses, there were more and more times like this:
We knew Athan was in good hands:
And when our boy went from feeling like this:
to feeling like this:
we knew it was time to go home:to play in the floor (with Papa!):
and outside with Morgan.
and to resume the life we are so grateful to share with him every day. I am swirling in gratitude for my son right now. There are no more words...

back

We have internet again! :) Whew...

I still haven't loaded the pictures, though. Sorry. Will do soon

We saw Athan's surgeon this morning. Dr. Plunkett said that from a post-op stance, all is well. The chest x-ray looks good. He took the steri-strips off the incision, and it is healing perfectly. We can bathe Athan now (maybe we'll finally get all the adhesive junk off!). Unless we have reason to seek them out, we don't have to see Dr. Plunkett again. Yeah!

We did not repeat the ECHO today. That will probably come when we see his regular cardiologist again in a few weeks. That will tell us how the valve is doing, and whether the leak is still there or if it has changed in any way. That appointment is the end of this month.

Again, I just wish you could see him. Our Athan is back in full swing. I think I can already tell a difference in his energy. He is moving his arms more and just seems to feel better most of the time.

Ryan and I are starting the feel the full force of relief of being in the land of After-Heart-Surgery. We have long spoken of life in this land, but it seemed only a dream. :) Ryan has a busy few weeks ahead to finish up the semester, but still we are glad to have such a big hurdle behind us.

quickly

Our internet at the house should be back up tomorrow or Tues. I'm visiting a friend and stealing signal for a sec. I'll update more soon. For now - Athan is doing great. I wish you could hear the giggles I can hear at this very moment. We have our follow-up with surgery tomorrow morning, and I'll post and update as soon as I have signal again. :)

(Morgan's home. Thank's Nana and Papa and Uncle Brent. I'll post some fun pics soon, too)

an evening with friends

Athan had lots of company tonight. Our sweet friends Lance, Laurie, and Jordan brought us dinner. We ate together and had a fun time of celebrating Athan's recovery together. And as many of you already know, I just love food that other people cook! :) Athan and Jordan had a good time hanging out after dinner.

Then we went next door for some more food and fellowship with the Herons. Athan spent lots of time studying Margot's toy animals and trying to turn the page of a picture album. He was in a pretty good mood all night long.

He's finally asleep, so I better get a few things done while there's no baby in my arms. :)

still doing well

A little fussy. A little clingy. But still smiley and clapping and playing with Dad, too.

And we just changed the SIXTH dirty diaper since we got home yesterday. Yep. 6. For a kid who usually poops once every 2 or 3 days, this is a record. :-)

home!

We're home. It is so good to be in familiar surroundings again. Ryan is rocking Athan to sleep at the moment, and it's good to know he can sleep (in his own bed) for as long as he wants to. No need to wake up for an x-ray or to take his vitals.

The best part is having our boy back. Last night he was pretty fussy for a couple of hours - just uncomfortable and unable to sleep. After he finally crashed and slept for a couple of hours, he woke up in every sense possible. The lethargy seemed gone suddenly - he was smiling and laughing and clapping like Athan does. Just so good to see him again.

We'll see the surgeon in a week or two, and then his regular cardiologist in a month. For now, he's home on his regular endo meds (cortef, synthriod, and genotropin), on Tylenol for pain, and on 1 daily does of furosemide for his heart. The tylenol will stop within a few days, and we may get to stop the heart med after we see cardio, too.

We'll keep updating, and thank you all, again, for carrying us through another trauma with our boy. We couldn't do this without you.

it's official...almost

We're going home. Dr. K came by and decided everything was a go. Once Dr. Irene gives us the go ahead on the endocrine side of things we're out the door. It seems almost trite to thank you all at the end of every post, but we remain genuinely grateful for your prayers-constantly. What would we have without mercy?

Here's a pic of Athan trying to speed up the IV removal process this morning!

a smooth night

Athan slept really well last night. He is very mellow, and doesn't seem to be in much pain. His only complaint is that I have to stop his feedings short because we're still watching his fluid intake (that makes him pretty mad!). I think that will stop soon, though, and we should be free to feed as much as he wants. He is eating his baby food really well, and has been very happy to eat/play with his puffs again.

He has already had labs drawn this morning, which showed his potassium is low (common side effect of one of his medications). They also repeated the chest x-ray again, and we should hear about those results on rounds this morning. I think they will also give the official order to stop his IV steroids and return to taking it like he does/will at home.

Ryan and I both managed to rest fairly well when Athan was asleep, even though we had to curl up on each end of the one cot in the room. :-)

Thanks to our wonderful Wilmore Family who visited us last night, brought us dinner, and loved on our boy. It was sososo good to see them and celebrate Athan's progress together.

pictures from days 3 & 4

Day 4
Day 3

out of ICU

We have room out on the floor now (331). Athan was a bit fussy this afternoon, but after a couple of big burps and a dose of Tylenol, he was better. His lungs sound more and more clear to anyone who has listened to him. Ryan has been in Wilmore asleep (finally!), and he'll be back to see us soon.

Dr. Plunkett came to see us just before we left the ICU and described to us in more detail the repair that he did and exactly where the leaks are in the valve. He said again that it may correct itself, it may not. He said to just file away the possibility of another surgery in the future, but not to worry about it at all right now. The leakage is very minimal, and the medication will help.

He also said we may be home by Monday or Tuesday. :-)

first bit of bad news.

One of Athan’s surgeons came by to talk to me earlier today. They looked more closely at the ECHO from this morning, and it shows a little bit of leakage of the mitral valve. It may yet correct itself, and it is not alot of leakage. Still, we were hoping for none at all. He will have to stay on a new medication for now for the mitral regurgitation.
I think Ryan and I are going to get some dinner, and after I feed Athan next, I will go out to Wilmore again (Ryan is being quite bullheaded about this point) to get one more night of rest before I can feed him whenever he wants.

another night in ICU

Athan had a better night last night. He and dad didn’t get hours and hours of sleep, exactly, but certainly better than the night spent angry and restrained.

The ECHO this a.m. showed that the repair sites in his heart look good. The x-rays still show some junk in his lungs that needs to be cleared, so we are working with him to help get that fluid out. They are also watching his fluid intake closely, so we’ll alternate breast feeding with a bottle every other meal (every 3 hours ‘round the clock). He is still on oxygen for the moment. They tried to take it off last night, but it was just a little too soon. He is off the IV fluids, so we only have to be hooked up to IV stuff when he gets medicine. Otherwise the only cords and tubes that remain are his oxygen and monitors. We are going to stay here in ICU tonight to keep watching the fluid issue.

Morgan and the grandmas headed out this morning to go back to New Mexico. We are so thankful that Morgan will get to have this fun vacation while we focus on taking care of Athan.

Ryan has done two night shifts in a row up here, and he’s sleepy. I’ve gotten more sleep for a couple days, so I’m hoping he’ll let me take tonight and he’ll go home and get some sleep.

Once again, we have been taken care of so very well by all the staff here at UK. HUGE thank-yous to all our docs, nurses, and support staff for being so good to our boy. Selena was the nurse with the magic touch that started his first IV, and then fought with Ryan through that first hellish night post-op. Kim helped us sooth him when he was so mad he was trying to kick the moon. Kathleen has patiently helped us through our two days here, taking good care of Athan and Mom and Dad. We are so thankful to all of you who have given your knowledge and skill to our Athan.

so glad to hold our boy!

afternoon update

Athan has continued to rest better today. There has been some concern about him keeping his oxygen saturation up high enough, so they took a chest X-ray to check for fluid build-up. There is some fluid on his left side, so we are doing what we can to help him clear that out. Mostly, that means patting him on the back to knock it loose, and praying that he will cough often and effectively. The respiration therapist told Grammy to “beat the snot out of him,” which Grammy was a bit hesitant to do! :) She is patting away, though, and Athan is happily snoozing with her right now.

he was just hungry

The tube and wires came out with no problem at all, and when I arrived this morning, Ryan was holding him. So good! :) I held him for a bit, and tried to get him to latch on and eat. He is still a bit too lethargic to breastfeed, but he is allowed as much milk as he will take in a bottle.

Athan is really snoozing right now. He took a bottle about an hour ago, and has been as relaxed as we have seen him since then. Poor guy was just so hungry! Now that his tummy is full - he took a full 5 oz - he is resting.

They are starting Tylenol around the clock so he can come off of the morphine. When the morphine stops, we will be able to disconnect one of his IVs. We get excited about the prospect of one less tube/cord.

When he is semi-alert, the nasal canula for his oxygen tube seems to bug him the most. We have to wrestle with him a bit to keep him from pulling it out all the time.

Just so you know - we cannot access the internet from our room in PICU, and we have to step out to the waiting room to post a blog. When we are able, we will do so, but our post may be a bit slower as he wakes up and wants to be held more.

Ryan will be heading out to Wilmore in a while to nap and see Morgan for a while. Morgan, Nana, and Grammy will fly back to New Mexico early in the morning.

Thursday morning rounds

The big guy had a few rocky patches of discomfort during the night, but in the end we figured out some ways to allow decent stretches of rest. Dr. Plunkett and the PICU doctors just made their rounds this morning and decided the following: Athan looks good, and they want to remove the chest tube and the pacer wires. His hematacrit was on the border line this morning (which is common after surgery) so they decided to give him a little blood today - for an extra boost. (By the way, it turns out he did not require an all out blood transfusion during the surgery) If all goes well with the removal of wires, etc then he should be on schedule to begin eating in a while after the sedation wears off. This could be as early as mid-morning or as late as this afternoon.

good vitals, some discomfort on night #1

On.
Off.

Athan has been touch and go as far as sleep for the last 4 hours or so. We’re doing everything we can think of to help him rest. Even with the highest dosages of sedation the Dr. is comfortable with, the little guy still occasionally tries to unfetter himself. Who can blame him, right? The good news is that his vital signs and labs are in great shape!

Hopefully he'll sleep well tonight and be on track to start eating sometime in the morning. Amberly went back to Wilmore with the grandmas to spend some time with Morgan (who it sounds like had a great time with the Smiths and Jaggers today! Thank you.) and get some rest. All of you, with your prayers and hospitality, make it possible for us to "be a family" even when we're spread out in central Kentucky for a few days. "Thank you" hardly seems sufficient.

pray for rest

First, for Athan. It is a little unusual that he has been awake and alert as much as he has been. They are searching out the right dosage of sedative and pain meds that would help him rest better.

Also, for Ryan. He is doing the night shift by himself tonight, and he's tired.

And for me. I'm home with Morgan tonight in hopes of getting much-needed rest to be able to stay up with Athan the next few days when he can breastfeed again.

Thanks. We'll keep posting when we can. Goodnight.

1st post op pics

we got to see him

Athan has already had his breathing tube taken out! :) He currently has a chest tube, 2 temporary pacer wires, 3 IVs, a feeding tube, and all the wires for the monitors. He was also kicking like a crazy man and making some of those sites bleed a little, so his legs and arms are gently restrained for now. He is getting all of his meds, plus some morphine for the pain.

Nana nd Grammy are with him now.

He looks good, yall. He's pale and drugged, but better than I anticipated at this stage. I'm doing better than I thought I would be at this stage. Thank you all for praying.

The next couple of days will be difficult ones. I'm nervous about the gap of time between when he is alert and when we can hold him (and a bit later, when he can breastfeed again).

surgery's over.

The repair went well. Korinne came to tell us that he is off the machine and his heart is beating on its own. Dr. Plunkett will walk upstairs with Athan in a few minutes and get him settled in the ICU, then come and report to us the details of the repair. Korinne seemed pleased with the surgery and how the little guy held up. Depending on how Athan comes off of the anesthesia, they may extubate him this afternoon! He'll have a drainage tube coming out below his sternum and two pacer wires in case there are irregularities with the heartbeat in the near future. We should get to go in and see him this afternoon, and hopefully get to hold him tomorrow.

The repair went well!

Korinne (Dr. Plunkett's nurse) just updated us with news that the actual heart repair went well. They are now in the process of "rewarming" in order to take Athan off the bypass machine. Her prediction was that in the next hour or two he would be transferred out of the operating room into ICU.

under way

Korinne just came up to tell us they made the incision about 10 minutes ago. The next step is to put him on the heart-lung machine, and "the actual repair will start in about 30 minutes."

in the OR

Athan went back to the operating room at 7:45. He was asleep and snoring when we left him. We should have another update in an hour or so.

after x-ray

After the x-ray we went back upstairs to start and IV. We had a little bit of trouble, and several of his IV sites didn't work at first. The floor nurse called one of the PICU nurses, who was able to start his IV in his foot.

Even with an IV in, he was up to playing with Dad a little before he went to sleep.
While the boys played, I had my first Coke in 6 months (Athan was fasting by then, so no danger of him getting the caffine).
Then (around 2:30) we were all able to get some rest before morning meds and moving down to the pre-op holding room.

echo, x-rays, etc.

The pre-op procedures continue this evening and we're gearing up for the late night stretch. Amber snapped a few pics in the x-ray room, so we wanted to share them while we had a break.

Getting ready for the x-ray

Athan wanted to understand the machine before subjecting himself.
(Laurie, Amber said you'd be proud of the 'reach!')

in for the night

We're in our room here at the hospital. So far we've just done the admission Q and A with nurses and doctors, and we met the anesthesiologist who will be doing Athan's sedation tomorrow. The tougher pre-op stuff is yet to come - IV, blood tests, chest X-ray, fasting after midnight. I'll try to slip out here and post again before I go to bed.

we go in tonight

The grandmas are here! :) It is so good to see Nana and Grammy again.

Ryan and I will leave Morgan here with them in a few hours to head up to UK. We are supposed to admit to the pediatric floor this evening at about 6. We will spend the evening doing pre-op blood work, chest x-rays, and other preparations. Ryan and I will both stay with him tonight.

In the morning, he will leave us between 7 and 7:30. After that, we won't see him again for 6 or 7 hours. We will get updates from the nurse periodically during the surgery, and I will have my computer with me to post updates as we get them.

Once he has been back in the PICU for at least an hour, we will be able to get in to see him. Then the crucial recovery period begins.

Thank you all again for staying with us through this. I'll post again when we get settled at the hospital tonight.

new discoveries at our house

Morgan still needs a nap:Athan can say "more" in sign language:
Daddy naps best with company:
Other fun findings that don't have illustrations yet:
Athan can finger-feed now, and he loves Puffs.
Athan's jeans (size 12 months) = Morgan capri pants. Not kidding. Morgan can wear Athan's jeans.
Athan can say "Mama" now (though he will only say it if he's sleepy).

deep breath...

We met with Dr. Plunkett yesterday. It was nice to finally meet him. His nurse, Korinne, was very helpful, and they both were very willing to answer our questions and explain Athan's surgery to us.

So the plan is to admit to the hospital Tuesday evening. He will begin prep for surgery early Wednesday morning, and we will have to leave him around 7 or 7:30. The surgery will take 3 or 4 hours, and we will be able to see him again after about 5 or 6 hours.

The surgery itself is more invasive than I had hoped - full-blown open heart surgery. Some kinds of ASDs can be fixed using a cath, but the type of defect Athan has (2 ASDs and a leaky mitral valve) requires an open heart procedure. It will require a blood transfusion and the heart/lung machine. Dr. Plunkett will use a piece of Athan's pericardium to form a patch that will cover the holes in his septum. Then he will place some stitches on his valve that will help it seal correctly.

Recovery will start in the PICU for a few days, where Athan will have an NG tube (feeding tube), breathing tube, arterial line IV, a Foley cath, a chest drainage tube, and temporary pacemaker wires. When he is stable enough, we will move to a room on the pediatric floor before we go home. We may be in the hospital about a week, maybe two. Once we're home, we will have to be careful about how we pick him up and hold him for a couple of weeks, then he should be fully recovered.

Nana, Papa, Grammy, and Uncle Brent are coming up to be with us for a few days surrounding surgery. Then Morgan will go back with them to New Mexico for a while so we can be with Athan during the crucial recovery period.

Thank you all so very much for your prayers for our family. We especially request your prayerful attention the morning of Wednesday the 23rd during surgery. We will do our best to keep this site updated during our hospital stay.

docs and meds and more...

Well, 3 of the 4 of us woke up this morning feeling yucky (sore throats, some coughing, lots of snot again, and eyes full of gunk). Morgan, Athan, and I went to see Dr. Coburn this morning, and came home with a pile of meds for each of us. Antibiotics for all, eye drops for both kids, plus some symptom treaters for Morgan and me. We got everyone started on our stuff this afternoon.

We also saw Athan's urologist, Dr. Schaffer, this afternoon. He will confer with Dr. Irene and decide how best to treat Athan.

Tomorrow we go back to Lex to see Dr. Irene for his endocrinology check-up. Then we will meet Dr. Plunkett and talk about Athan's surgery. I'll do my best to get a post up when we get home tomorrow evening.

We have dates!

They called today!

Initial consultation next Wednesday, the 16th. Pre-op visit the following Tuesday (22nd), and surgery on Wednesday, April 23rd.

Yeah! We are of course apprehensive, because it is heart surgery, after all. But it is quite a relief to have dates on the calendar. Thank you all for praying with us through the wait, and now the surgery. We'll do our best to keep updates going as we know more.

reading week

I think it's funny that seminary doesn't have "spring break." No, we have "reading week." :-) Ryan has been able to read some, but we have mostly tried to relax - kinda taking a deep breath to get us through the rest of the semester and heart surgery.

No, still no word on when the surgery will be. Silly red tape. Of course, if Athan's case was an emergency, we could go to another city for the surgery but we would prefer to be here in Lex. As soon as Dr. Plunkett is able to see patients, we'll be quickly to surgery, we hope.

Athan has an ear infection. Poor guy. He had some congestion and a fever, so we saw Dr. Coburn yesterday, and he diagnosed an ear infection. We got some more meds.

Ah, meds. We use more syringes than forks in a day around here. Especially when he's got an infection of some kind. In just 3 hours time this morning, Athan had to take Cortef (double the normal dose), Synthroid, Digoxin, Furosemide, Loratidine, Cefaclor, Ibuprofen, and drops for his ears. Whew. He is a trooper, though. He has only ever offered mild protest, and most of the time he takes his meds very well. I've been amazed and thankful that it doesn't seem to bother him at all to start every meal with a syringe.

We have, however, discovered that medicines that make most babies drowsy have the opposite effect on Athan. Even Ibuprofen and Tylenol jazz him up, so he doesn't sleep much when we have to give him things to help with fever or congestion. That's why we're up writing and blog and not sleeping at the moment. :)

Morgan seems to enjoy having both Mom and Dad around more this week. She also got to play with her friend Macy this morning, and had so much fun. She notices when we have to pay extra attention to Athan's meds. Not wanting to be left out of the fun, she requests Morgan Medicine. So we fill syringes with juice or water and make sure Morgan gets her meds, too. :)

big day

Morgan went to her very first gymnastics lesson today! She was so excited. So excited, in fact, that once she got there, she was a little tired from being so excited all afternoon. She had a little trouble listening and following instructions. Still, it was her first time in a group setting like that, so she has time to learn that stuff. I think this will be really good for her. Ryan took her to the lesson (I stayed home to feed Athan), and he said the picture opportunities are slim. Here's some "before" pics (thanks for the outfit, Nana) and one semi-action shot:

i'm back

Athan did not sleep well while Morgan and Ryan were gone, and it has taken me a while to catch up! :) I think we're all finally back to our routine and sleeping more. Not much else to report, so I'll just post some of our recent favorite pics:

Playing together with the big bear in Morgan's room (thanks, Uncle Faba):
Seminary baby:
On dad, they look ok, but on ME...!:

From the living room, I heard "Mom, how did I get up here?":

Ryan and Morgan made it home. It has been so fun to listen to Morgan's telling of the trip! :)

Athan and I have been trying to catch up on sleep we missed over the weekend.

That's 'bout it for now. :)

OT eval and PT visit

We met Twila today, who came to evaluate Athan's development from the perspective of an occupational therapist. It was an encouraging meeting! She had some suggestions of new things to try with Athan, and she noted some developmental delay. However, she was pleasantly surprised at his skills, and indicated that he only has mild delay. We will be speaking with the rest of our First Steps team to amend our plan, but it looks like we will be seeing Twila more as an occasional consultant rather than a regular therapist.

Laurie also came for PT, and he worked pretty hard today. Athan was still in a good mood despite all his hard work, though he is starting to let us know more of his opinions about some of the things that challenge him in therapy! I think he is already trying to charm his way out of working hard! :0)

I talked to Ryan earlier today, and he and Morgan seem to be having a great trip. Uncle Layne gets to play for the state championship this Saturday. Athan and I wish him lots of luck from Kentucky!

more meds

Dr. Coburn prescribed another round of antibiotics, and some Robitussin. He is asleep, finally. Poor guy.

I should sleep, too! :)

They're off

Ryan and Morgan left a few hours ago, and are en route to Albuquerque. Ryan called to report that Morgan has already charmed the pilot into a visit to the cockpit and free TV for the trip to Denver. That's our girl! :)

Athan and I are having a very quiet evening. We were treated to dinner with the Herons, and we've spent the rest of our time assembling his new ExerSaucer. Hopefully, we'll both get some sleep soon.

We go see Dr. Coburn tomorrow to see if we can kick this cough and congestion to be ready for surgery. I'll write when we get home.

PT today

Laurie came today, but it wasn't our best session ever. He was tired, and he still has this silly cough. We'll go see Dr. Coburn Wednesday morning to see if there's anything else we can do to get him well (in case the surgeon calls and we are nearing surgery).

Morgan and Ryan head out tomorrow to go to New Mexico to watch Uncle Laynee-Pie play in the state tournament. Athan and I will be staying here and listening in on the Internet. Go Wildcats!

a lesson on inedibles

Just when you think you're a good parent sometimes, your daughter escapes the watchful eyes of her mother (Ryan wants it clear that he was home with Athan) and 8 other adults to sneak into the neighbor's bathroom and eat 3/4 of a tube of toothpaste. An evening that includes a call to Poison Control is not likely to win me the nomination for Mother of the Year, huh? (She's fine. She drank a little milk - which we're told takes care of the fluoride - and has not complained of feeling bad at all.)

Athan still has this lingering snot/cough thing. Our busy week turned into a week of canceling and rescheduling appointments. Unless he seems too sick, we'll start up PT again on Monday, and go from there.

today

Athan is sick again, poor guy. A head cold. Lots of snot and a hacking cough, plus the occasion triggering of the gag reflex by the drainage. Yucky. We postponed the appointment with the OT.

We did, however, keep the appointment with cardiology this morning. Still nothing new about timing. We don't have dates yet, just a sequence. As soon as the surgeon's licensure paperwork clears, they will call us for an initial consult. Then we'll schedule a pre-op visit for bloodwork, etc. Then surgery. All this in the next couple months.

We also learned more about Athan's condition and the surgery. It cleared up some misconception and old information for us: First, we thought Athan had an ASD (hole in the wall between the upper chambers of his heart) and a VSD (hole in the wall between the lower chambers). In fact the VSD he had at birth has closed on its own! :) He still has 2 holes, but they are both in the upper chamber. Also, one of his valves is leaking. Initially, we weren't sure if they would address this surgically, but we found out today they can and will. It sounds simple - "a couple of stitches" for the valve is how Dr. K explained it. Even with the valve issue, Athan's proceedure will not be very complex, as heart surgeries go.

Ok, gotta go. Mr. Snot needs Mama! :)

Rolling Milestones!

more movement

We're working on a way to post a video of Athan's newfound mobility skills, but I can hardly wait to show you! He is much more motivated to move around now. It may be a while before he figures out he can crawl, but he can certainly get where he wants to go now! :)

We have a full week for our boy: We have physical therapy on Monday. Tuesday morning we'll go in to see cardiology (Dr. K wants to make sure the site of his cath is healing, and talk to us in detail about the results and surgery). That afternoon we'll have an evaluation by an occupational therapist (through First Steps) to see how Athan is doing with small motor skills. Thursday morning Amanda will be here for his VIPS therapy, and Laurie again Thursday afternoon for physical therapy. Whew! I'll post updates when I have time.

a simple new skill

A few minutes ago, my son rolled from his back to his tummy and "skooched" his way forward 6 or 8 inches in order to chew on several of his sister's books.

I teared up a little.

long night, and welcome relief

We had another sleepless night list night. Athan slept about 45 minutes between 10 last night and 4 this morning. Poor kiddo. It just seemed like he could not relax enough to sleep. Dr. Irene said it wasn't endo, but I'm still convinced it was his stress dose of Cortef keeping him up. We're back to regular maintenance dose today, and he has had a MUCH better day.

Also, welcome with us our new friend Charis. She will be here 3 mornings a week to help with the kids so Ryan can work on school and I can sleep! :) If I'm not asleep, I can get errands or just some "me time" during those hours. Charis is a wonderful woman who is great with the kids and very patient with me, too! :) We are so very grateful to have her in our lives.

cardio

We did hear from the cardiologist. Basically, they just confirmed what we already knew: Athan needs to have surgery, and it will be sometime in the next couple of months. The new surgeon just moved here from California, and he is waiting on his Kentucky licensure paperwork to go through. As soon as he is officially able to start work, Athan will be one of the first surgeries scheduled. They will be calling us for a pre-op visit as soon as they can (which could be days, weeks, or up to a month). I'll write again when we hear from them, so you'll know when we know.

Thanks for staying near us with prayers, comments, e-mails, and calls. We remain awed and grateful to all of you.

Morgan's sleeping, Athan's not

Morgan is, for the first time since Athan was born, consistently sleeping through the night in her own bed and taking good naps. Yeah for Morgan! :)

Athan, however, was awake yesterday from 9 a.m. to 8 p.m., with the exception of about 20 minutes. Crazy, huh?! He was a little extra fussy, a lot extra clingy, but as long as I was holding him, he was happy. It is tough to guess a cause with this kiddo - heart stuff? endo? bronchiolitis? meds? or normal baby stuff - constipation or tummy ache? aaahh! I don't know, exactly, but after eliminating one thing then the other, I think it has to do with his Cortef dose. We'll be back on his normal med schedule tomorrow, so hopefully that will mean more sleep for us all - especially baby boy!

feeling better

Athan is still raspy and coughing, but it is also evident that he just feels much better. He is sleeping and eating well, and he is playing more when he is awake. We will still be pretty cautious with him through the weekend, but I think he is certainly heading in a good direction.

Ryan and I have both taken some good naps the past couple of days, so I think we've recovered from the short night before his cath.

saw Dr. Coburn this a.m.

After speaking to the cardiologists yesterday, we decided it was best just to see Athan's pediatrician. Dr. Coburn worked us in this morning. Athan has bronchiolitis (bronchitis for babies, kinda). He gave us meds (antibiotic and some stuff to break up the congestion in his chest), so we'll get those in him next time he eats.

The good news is that this is an upper respiratory infection. If the infection was in his lower respiratory system, he would probably have to be hospitalized because of what that kind of infection can do with his heart condition. Hopefully the meds will prevent it from spreading.

I also have a call into Dr. Irene to see how we should adjust his endo medications in light of his recent cath and his current illness. We should have all the dosages worked out and in him in a couple hours.

Athan's sick

We've talked to Dr. Vranicar (surgeon who did the procedure yesterday), Katie (Dr. K's nurse), and his pediatrician, and everyone seems to agree that it is NOT a side-effect of the cath. He probably just picked up a bug or something at the hospital. He has quite a rattle in his breathing and has been coughing off and all all day. He had a slight fever, but not for long. He is acting like his usual happy self most of the time, and he's sleeping a little more than usual. We'll keep watching and keep you updated.

pics from the day

before:just waking up in recovery:
first clear liquids back in the room:

Got to come home-

We recovered back on the pediatric floor for a few hours, and left the hospital around 4. We're home now, and everyone seems to be tired, but good. Athan is not quite himself, of course, but he has played some this afternoon and is eating well. Morgan had so much fun with her friends she didn't want to come home! :) Ryan and I are groggy, but functional. It'll take us a couple of days to get the sleep back, I think.

We were blessed with dinner for the next two nights - thank you friends. We should be able to have a slow going evening for now.

Once again, how can we possibly thank you for your prayers?

the network let me on this time

Athan's procedure went well. He is still asleep, and looks like he's enjoying the rest!

We just spoke to Dr. Vandicar, who did the catheter on our boy. He said that everything went smoothly, no complications. He checked the pressures in the pulmonary arteries, which has been the main area of concern. "Resistance" is higher than it should be with just and ASD/VSD, but not so high that treatment/surgery needs to be immediate - elevated, but not critical. Dr. K will look at the data, and the cardio team will discuss in in their next meeting (probably next Monday afternoon).

I'll try to post again when he wakes up, and we'll try to get pictures up later this afternoon.

amberly

Post by Proxy

Last night went pretty well with all the fasting and prep for the procedure. Both mom and baby didn't get much sleep, but otherwise no problems. Athan is in the procedure right now and will be for another hour or so. Amber and Ryan are in the waiting room, and Morgan is at Jason and Hannah's house, playing with Margot.

It will be about another hour before the procedure is over, and a little while longer before Amber and Ryan can get reliable internet access. In the meantime, we'll try to do these proxy posts to keep everyone updated. Thank you all for your prayers during this time.

--Uncle Josh

We're at the hospital

Admission went well. Started an IV (on his right side so that his head has to turn left). He'll stop nursing at 2am and switch to the pedialite. At 6am he'll be off liquids completely. The procedure is scheduled for 8 o'clock. The procedure takes about two hours. Recovery afterward will be between 4 and 5 hours. We don't have as much computer access as we've had in the past, so we'll post when we can.
Athan is a real trooper. He was pretty upset about the IV, but after a little rest, he's smiling and playing.

to the hospital

We're heading into Lex in about an hour or so. We'll eat, then be admitted to the pediatric floor at 8 p.m. After we get all settled in, Ryan will head back out here to put Morgan to bed. I'll stay with Athan tonight, and Ryan will be back first thing in the morning to go with us over to the heart building for his cath. I'm taking the computer, so I'll try to post again after we get settled in at the hospital tonight.

Oh - Athan had a great day of physical therapy today. He worked really hard on his back and a little with his arms. I wish I could have captured the way he was imitating Laurie chewing her gum! He even remembered the gum from last appointment, and he kept "chewing" and looking at her mouth, so she made a special trip to her car to get gum and keep him entertained. So funny! :) We'll see Laurie again on Wednesday for our planning meeting, and Friday for his therapy.

Morgan

Of course this blog was started to keep up with Athan's Journey, but many of you wonder about our Morgan as well. I try to but in blips about her here and there, but here's a whole post to give you a glimpse into her world right now:

She loves being outside, and winter weather doesn't allow for nearly enough. Still, whenever possible, we bundle her up and set her free:


The only setback to being outside is that there are not pottys. She doesn't think it is worth the trip back inside, lest we make her stay there, so she has come in with wet pants one more than one occasion. That is a true lover of the outdoors, I say.

When trapped inside, we do our best to find diversion. She enjoys art in may forms. Sculpting (making snakes and snowmen out of pink Play-Doh), painting (with the extra peanut butter and jelly that dripped out of her lunch onto the table), and coloring, of course. Here are some examples from her on-going Green period:
She gets to play with Margot on occasion, and she spent the day with the three Crisp boys during Athan's last appointment (Thanks again to Erin!). We always look forward to time she gets to spend with friends, and when she's here at home, these "friends" are a royal treat, accompanying us for most activities of late:
She is endlessly creative. For instance, these instruments here were transformed inside of an hour from drumsticks to medical instruments for giving Mom "check-ups" to spoons for serving imaginary soup back to "whisk-es."

All in all, she seems to be doing well. Her appetite is finally back. The magic words right now are "burrito" (meaning anything at all wrapped in a tortilla), and "salad" (yes, she suddenly loves salad). She is super sweet to Athan, and has taken up calling him "Blue Eyes" (which makes her Brown Eyes, me Green Eyes, and Dad Brown Eyes, of course). She is sleeping better - whew. After lots of travel followed by some sickness, it is good to have Morgan back in full swing!

PT

Athan, despite being a bit off schedule and pretty tired, still worked hard for Laurie during his PT appointments. You can see in the pic that she's working to get him to realize he can bear weight with his arms, and he is finally catching on (a little).

Yesterday she repeated the assessment that he took back in late August to measure his progress. According to this particular tool, Athan's developmental age is 5 months. Of course that is still a delay, but it is great progress from where he was before. We were glad to see that he has improved so much!

Next week (Wed.) we'll meet with our whole First Steps team to discuss his plan for the next few months.

Dr. Irene today

We went back to see Dr. Irene, Athan's endocrinologist, today. As always, she was her cheerful, helpful self! :) Aside from the usual check-up and blood work (yuk), Dr. Irene helped us iron out some of the logistics of taking care of his endo stuff during his cardio stuff ahead.

For example, his heart cath next Tuesday: We have to triple-dose his Cortef the day before, during, and after. Also, because he has to fast after midnight the day of the procedure (Tuesday), she decided it would be best for Athan to be admitted to the pediatric floor at the hospital Monday evening so we can monitor his blood sugar and give him IV dextrose if we need to while he is NPO (fasting). So we will be heading up to UK Monday evening (around 8) to check in, he will start fasting at midnight, his cath is scheduled for 8 a.m., the procedure takes about 2 hours, then after 4 or 5 hours recovery, we can go home.

Our next few months

Ryan and I were talking last night and looking at what lies ahead for the Strebeck family, especially in the next few months. I think it was our way of mentally digging in for another stretch. We pretty much stay in "survive the crisis" mode for a while. Athan really needs to stay healthy until heart surgery, which means lots of stay-at-home time for at least one of his parents. The other will be making sure Morgan doesn't have too much stay-at-home time. :) Then we have the heart cath, surgery, and recovery. We'll be revamping his First Steps plan (that's the program through which he gets physical therapy), maybe adding occupational therapy as well. He will see a urologist per recommendation of his geneticist, as well as having a vision and hearing test. We'll have to keep up his regular visits with his endocrinologist and pediatrician.

And school starts tomorrow.

We're happy to do it, and we want to do it well. I write to ask, again, for your prayers. This year has been a tough one, and the next may not be smooth sailing, exactly. Right now, I'm just asking the Lord for the energy to do what needs to be done, and to do it with deep love.

physical therapy

Athan did well in his therapy, I think. Laurie said she could tell he is getting much stronger. He is offering much more resistance with his arms, controlling his head better, and his torso is working harder when he tries to balance and move. It seemed like her biggest concern is his "round sitting." Basically, it's like a super-slouch. We'll be working hard on getting him to hold his back straighter.

I'll try to grab the camera and post some of the pics soon.