the trip

Papa Sid is our hero! He came to pick us up in the plane, so he turned a 20hr trip into a 6hr trip.

Both kids did very well. Athan tolerated his oxygen fairly well (except for the last 30 minutes), and Morgan tolerated her car seat fairly well (except, of course, for the last 30 minutes). Here's a couple in-flight photos (cardio has put Athan on oxygen until surgery, thus the tubes):

made it

We got everyone to Clovis and settled in. Just wanted to let everyone know. More details to follow as soon as I have a bit more time.

at long last - our Christmas plans

It has been a very long week. Our plans all semester long have included a trip to New Mexico for Christmas. When we saw cardiology last week, however, we found out that Athan's heart condition is more serious than we thought, and suddenly our plans were called into question. We have gone back and forth a thousand times between deciding to go home and stay here. We've shuffled through a myriad of factors, talked with doctors, prayed with friends and family, and changed our minds over and over again.

Finally, we have resettled on going home, but we have modified our plans to make the trip safer for our boy. We are doing a very scaled-down version of our trip home: We regrettably will not be making trips away from Clovis, and our appearances at big-group gatherings will be more brief than usual. Athan's cardiologist has put him on oxygen to prepare him for surgery, and we will be staying fairly stationary to make sure we can be consistent and keep him healthy.

We will be in Clovis by the end of the week, and will stay through the end of January. I will do my best to continue to update this blog throughout the trip.

10,000+

Some time in the past week or so, we passed ten thousand hits on this site. Ten thousand times you have thought about us, checked on us, and many, many of you have prayed each time you've read.

We remain grateful beyond words.

new skill

As described in earlier post:

another appointment report

Long day yesterday. We were in Lex from 9 to 4 for Athan's appointments. We saw endocrinology, cardiology, and the NICU Grad Clinic.

Endo - We'll hear from her soon about the lab results (which tell us whether we need to tweak his dosages or not). Otherwise, all is well.

Cardio - We repeated his ECHO and EKG, which Dr. K says have almost no change. He did say that the presure in his right ventricle is higher than he would like, so we'll probably be moving the surgery up a little. We thought his heart surgery would be near his first birthday, but now it will probably be February some time. Dr. K will discuss Athan with the surgeon on Monday, and we will hopefully hear more specifics then.

NICU Clinic - This was just a general follow-up. The did developmental assesments, we spoke with a dietician, and saw a pediatrician (Dr. Desai, who is wonderful!). No surprises, really: He looks good. He's still behind on some developmental milestones, but he's catching up. Same with weight gain.

Laurie will be here any minute for our last PT session before the C-mas break.

new skills

Athan is doing SO many new fun things! He can roll over from his tummy to his back, hold and shake a rattle (in both hands), and push a button on one of his toys to make the music play. Just yesterday, when Laurie was here for PT, he began to imitate her shaking her head back and forth. She would shake her head at him, and he would wait and study, then shake his head back at her. He caught on very quickly, and now he seems to think this is a great way to "talk" to anyone who wants to play the game.

He is also:

making "raspberries,
flirting with Lucy,
reading (per sister's recommendation),

and stealing Mom's books so she will stop reading!

Celebrate! :)

We had a round of follow-ups at UK today.

Opthalmology: His left eye is turning in a bit, so we have to patch his right eye for an hour a day.

Genetics: Same - nothing conclusive, tests pending.

Neurology: Here's the good news!! We get to wean him off of his phenobarbitol (which will take about 4 weeks), and if that process goes smoothly, we never have to see neuro again! :) Woo-hoo! :)

our kids

Athan is doing really well. We have some more follow-up appointments at UK tomorrow - neurology, opthalmology, and genetics. We'll be in Lex most of the day, but I'll try to get an update posted tomorrow evening or Thursday morning.

Laurie has scheduled the last few PT appointments with Athan before we head to New Mexico for Christmas. I'm a little sad we won't get to see her so often - for Athan's sake and mine! We'll work hard on his exercises while we're home, and start back up again with therapy as soon as we hit Wilmore in January.

Morgan seems to be a little more content lately. We've tweaked a few things with her routine, and changed a few bad habits we had all gotten into, so toddler-life is a bit more level these days.

I'll let you know how the appointments go asap.

today

Athan is 6 months old today.

Praise God, from whom all blessings flow...

He waved!

Well, I guess it's more accurate to say he imitated Amanda waving at him. Several times. It was soso sweet!

Morgan is recovering from a pretty severe case of cabin fever. We got to go play with kids today, and she is currently playing with Savannah (who keeps the kids for us every Tuesday afternoon - whew).

good times!

We sure missed seeing all our family for Thanksgiving, but what a blessing to have such good friends here in Kentucky!

On Thursday, our friend Sarah hosted us at their house for a beautiful dinner, featuring a gorgeous turkey and all the extras. SO good!

Today we got to go into Lex and have brisket (ah, Texas...) with the Sims family. I dropped my corn in the brisket sauce, and Morgan broke a snow globe. oops. In spite of the Strebeck girls' faux pas, it was a fun time for all.

We'll probably spend the rest of our break working on our various ongoing projects: Ryan is building a new part for Athan's crib, writing papers, and reading for school. I'm working on Christmas shopping, plus preparing to pack and clean before we leave for 6 weeks. The kids are working really hard on being kids, and so far so good...

back from the blues

It has been a while since our last update, I know. I wanted to start this blog with some blathering about semester's-end busyness and holiday prep. It would have been about half true. Mostly, I've been feeling a little heavy, but I couldn't articulate it well enough to try a blog. The weightiness of my grief and my gratitude seem, still, too much for words. In light of the depth of what I have been thinking and feeling, another post about PT progress (which remains really good) and VIPS visits (also good) refused to materialize when I would sit to write.

But I am emerging again out of that heavy place. So far, I feel like this is healthy - the way the sadness comes and goes like the tide. I do not wish to try to be sad when I'm not, nor try not to feel sad when I do. If I don't muster or deny, maybe I'm emotionally maturing. Maybe. Part of this effort to grow up comes with parenthood - Athan and Morgan need me to learn to model good things for them, including grieving and giving thanks. Often simultaneously. I hope I can do it.

As to the daily stuff: Athan continues to do really well with his physical therapy. We will be recruiting lots of our friends and family in Texas and New Mexico to help us do his "workouts" while we're there for Christmas. Morgan keeps bumping into a world that doesn't bend to her every wish, which keeps surprising her and making her mad. We're doing the best we can to help her navigate the hard work of being a toddler. I am doing what I can to get ready for our trip home for Christmas, and Ryan is diligently finishing his semester up - couple big projects to go.

Have a Happy Thanksgiving!

one of our best conversations

check this out!

We were playing in the floor last night, helping Athan work on rolling over. I helped him over onto his tummy, and he just popped his head up like he's been doing it for months! Way to go buddy! He held his head there for a minute or so, then rolled back over onto his back with no help. So exciting!

PT today

Laurie just left a while ago, and Athan did really well again today. He is really beginning to work hard at keeping his chin down when we do "baby sit-ups." He still has significant lag, but he is starting to work harder to overcome it.

I wish you all could meet Laurie. She is SO very good at her job. We are so thankful to have her in our home for any reason, and so glad she's working with our Athan.

attempted answers

We frequently are asked or hear about some recurring questions that we may not have addressed. I’ve been meaning to write this for some time, partly for you and partly for me. It always helps me think things through when I sit to write about it.
Athan’s medical troubles are rooted in his genetics. As far as we know right now, none of the things that I did or did not do during pregnancy could have caused this. My prenatal care was good. The biggest challenge for me was hyperemesis again, which just means I was sick around the clock for months. However, this could not have caused Athan’s problems. None of the genetic testing has uncovered the source of his sickness. It may be a fluke - a one-in-a-million random genetic mutation. It may be something inherited from Ryan or myself. We don’t really know, and we may never know for sure.
We do not regret having a home birth or using a midwife. I think both of my experiences of labor and delivery were better for me and baby to be at home, and choosing home birth was in no way responsible for Athan’s condition. We are attempting to walk forward while negotiating the tension between natural treatment and medicine (we are fortunate to have access to such wonderful care from both!), being as informed as possible about both as we make decisions.
We still do not know what any of this will mean in regards to Athan’s quality of life. We have many, many questions about what his life will be like. At first, we were only looking forward a few minutes at a time. Then hours. Then days and weeks. Now I feel like we know what the next few months hold. When we are able to get more of a picture of what the years ahead may hold, I will try to write about it.
We are also not sure whether we will choose to have more children or not. Further genetic testing may be able to tell us what chance we would have of any future children having the same troubles, which would inform our decision. We both are open to all of the possibilities. We may have 2 kids. Maybe more. Maybe more of our own, or maybe adopt. All are options we will explore over the next few years.
Thanks to all who are praying us through this time and will walk with us through whatever the future holds.

schedule change

Athan has outgrown his eat-every-3-hour schedule. :) He is now officially moved to a 4-hour schedule. If you've every had an infant in your house, you know how different the world is for all of us now. :)

happy Halloween

Athan had the beginnings of a cough, so he stayed home this year. But Morgan... well, see for yourself:

The kitty-cat:


First taste of "pink" (as she called it):

With her friend Margot, the punk rocker:

WOO-HOO!

13 lbs, 6 oz! (now sing that and dance around a little)... That translates to 30 grams a day since we were last at UK (about a month). They wanted him between 20 and 30 grams per day, and he was only at about 17ish before this month. But not anymore! His rate of weight gain is finally on track. Yeah!! :-)

Can you tell I'm excited?

Once again, more numbers that show how you all are praying our boy to good health. Celebrate with us, friends and family!

(oh - we also saw Dr. Irene. All is well. No change in dosage unless labs come back too high or too low. She also taught us some how-to's as we prepare to travel home for Christmas, including how to give an IM emergency dose of his hydrocortisone if we needed to).

VIPS

In addition to physical therapy, Athan is seeing a therapist from VIPS (Visually Impaired Preschool Services). Honestly, we are not sure whether Athan's vision has been affected or not. He is a little behind on tracking objects, but that may be due to his lack of head control and muscle tone rather than his eyes.

Amanda is the therapist that sees Athan, and she was here this morning. The session went well, but Athan did seem a little tired.

I just thought I had better post an update before I forgot. We focus so much on his physical therapy that I forget to post about VIPS.

Laurie will be here this afternoon for PT, and we go back to UK tomorrow to see Dr. Irene (his endocrinologist). I'll let you know how it all goes.

Oh - and Morgan slept for 11 hours last night, and she has not had an accident in a couple of days. Yeah! :)

Guests from home

Lindsey and Nana have been here to visit this week. Lens came in Sunday evening, and left Wednesday. Nana arrived later on Wednesday, and will fly first thing in the morning. It has been so good to have them here! It is always such a help to have extra hands.

Athan has had a good week. He continues to eat well, and physical therapy has gone well this week. Laurie tried a new position for Athan, and he tolerated it well this week. He continues to improve and surprise us all.

Morgan has had a tough couple of weeks. I don't know why, exactly, but she seems to suddenly have lots of trouble with things that were going well (like eating well and going on the potty). Would you just pray her and for us as we seek to navigate the turbulent toddler-ness with her?

Also, our friends Alan and Sarah just welcomed their beautiful daughter, Lucy, to the world! She is such a precious baby girl. Congrats to the wonderful new parents! It is good news that the two of you are going to raise a child together.

summary

Many of you have followed Athan’s journey from the very beginning. You can skip this post. For those of you who are new readers, this is for you:
Our son, Athan, was born at home on May 29 and we were so glad to finally meet our boy! Everything was going fine for a few hours, but Athan’s condition begin to turn for the worse during the night. He would not eat, and he began to have trouble breathing normally. We called an ambulance. By the time it arrived, Athan was blue all over. He was rushed to UK Children’s hospital, stabilized in the ER, and admitted to the NICU.
The first few days were a terrifying blur of uncertainty. Our boy had lots of tests as part of the diagnostic process, and we mostly cried and waited and prayed. Then we learned that his pituitary gland was not functioning properly, and his body was not producing any of the hormones it is supposed to. As soon as they began medicating to compensate for his hormonal deficiencies, all of his vitals began to normalize.
We stayed in NICU for 16 days, then brought Athan home. Unfortunately, we had to return to the ER a few days later for a second (one week) hospitalization. The second episode was primarily related to finding the correct chemistry and dosage for his medication, which has now been taken care of.
The heart of Athan’s diagnosis is “panhypopituitarism.” It just means that his pituitary gland doesn’t work. Athan will have to be on medication for the rest of his life to artificially supply his body with the hormones it cannot make on its own. The good news is that this condition is very treatable.
He also has small holes in his heart - one between the upper chambers and one between the lower chambers. He will have surgery some time before his first birthday to patch those holes, which should permanently fix his heart problems.
There are some abnormalities on his EEG, which means that there may be some neurological concerns for Athan. He is on an anti-seizure medication as a precaution right now, and we will keep watching to see whether he will come off that med or not. He has never actually had a seizure that we have seen.
Athan is also hypotonic - he has low muscle tone. He’s floppy. We were referred to the First Steps program, and through that program Athan sees a physical therapist twice a week to help him gain muscle tone. His biggest challenge is head control, but he has already made great progress in catching up to the milestones he should be meeting.
Finally, Athan has had extensive genetic testing done to see if there is anything that could shed light on his treatment, as well as informing Ryan and I in decisions about having more children. So far those tests have not found anything specific, and more tests are pending.
Athan is currently doing very well. Scanning a few of the pictures posted previously will show you his giant grin, which is very much common at our house. He is such a happy boy! He takes his medicine well, eats well, sleeps well (most of the time), and fills diapers like a baby should. We have follow-up appointments at the UK clinic about once a month, and will continue to post updates as we learn more from the doctors about our kiddo’s condition.
If you have the time to read Athan's Journey from the beginning, you'll see a family carried along by the prayers of The Church, which is impossible to summarize.
I hope this helps some of you newbies catch up! :)

Physical Therapy Progress

--Preview--


The above video is a short clip from Athan's physical therapy appointment today. (if you'd like to watch more, there will be a longer segment below) The little guy is really getting stronger and becoming more active. His head control has been the main area of emphasis since that must be in place before other important milestones can be reached (sitting up, crawling, etc). It was not long ago that Athan couldn't hold his head up at all. That reality makes today's "workout" quite an impressive feat as far as we are concerned! Our PT has been wonderful and Athan has had good days and bad days as far as his cooperation. Most of them have been really good though, and we have rejoiced at his progress. Whatever our PT teaches him/us we try to repeat throughout the week, and it's fun to see him work and get stronger...little by little. The above mentioned PT is featured in today's video, along with her lovely daughter - who is a great helper with exercises and with entertaining Morgan!



I was speechless.

more from Boyd's

And after all that fun, we came home and Hannah made us Candied Apple Pie with apples from the orchard:




I think I'll go have another piece of pie right now! :)

might as well

It's 3 a.m., and Athan is awake. Not fussy. Just wide awake. And talkative. So I might as well blog, right? :) Helps keep me sane...

Morgan and I had a big day today! We left the boys to hang out here, and we went with Jason, Hannah, and Margot to Boyd's Orchard. What fun!


I'll get more pictures up tomorrow, but I think Athan is finally asleep now. I'm heading to bed!

a stellar day

Laurie came over for Athan's physical therapy today, and he worked like a champ! Example: Just 2 weeks ago we were celebrating that Athan held his head steady (with hands helping steady his torso) for about 45 seconds. Today - 3 and a half minutes! Woo-hoo! He just worked really hard today.

Morgan has had a good day, too. She's had a couple of the inevitable toddler moments (like throwing her shoes and refusing to come inside to eat), but she also has responded well to discipline. When she woke up from her nap, 2 hours after the shoe-throwing incident, she apologized on her own.

Ryan has been out and about most of today on a couple different errands, but he had some good daddy-daughter time with Morgan this morning. He was here to help with physical therapy for a while, too.

And I've had a good day. I've recovered from all my sickly-ness (no more tummy troubles, headache, congestion). I rested well this morning while Morgan was out with Ryan, and my afternoon has been productive. It just seems to be one of those rare days when most things just click.

I know some of you have been praying specifically for days like this for us. Thanks! :)

the kiddos

milestone

Ever since we brought Athan home from the hospital, I have had a bag packed and ready in case we had to go back.

I unpacked it today.

:)

catching up

I haven't written in a while, and I need to catch up on several things:

I've been meaning to wrap-up about our appointments at UK last week. Everything went so much better this time. The frustrations from last month's visit certainly did not carry over. Everyone seemed to be much more on the same page, and communication went much more smoothly this time. We were so relieved!

Also we saw Dr. Coburn today. He is very encouraged about Athan's progress. We did the second round of immunizations today, so pray for our boy the next couple of days as he recovers from that.

PT has been going well. Monday Laurie said Athan was feeling like any baby trying to gain head control (instead of a sick baby trying to catch up). Wednesday he wasn't as willing to work, but this may be a 2-steps-forward-1-step-back kind of pattern as he catches up.

Athan is also chewing on his fingers like a crazy man - I think we may have a couple of teeth about to pop through!

Sleep has been scarce the past week or so - for all of us. Athan has been staying awake at night (not fussy at all - just awake). Morgan has been having some trouble staying in bed. I've been up with them. Ryan pulled his first seminary all-nighter. We're all kinda sleepy, but the weekend will hopefully be more restful.

photo stuff is working now...

soon

I've been trying to upload some photos, but Blogger is being cranky this evening. I'll get those up as soon as I can.

Our weekend has gone well. Athan continues to do well, and Morgan has been great.

The big news (at least to me) is that I got to sleep for 7 straight hours last night. Wow! I went to sleep at 10 last night, Ryan fed Athan a bottle at 1, and then he slept until 5 this morning. I feel like a whole new person. I probably haven't slept for 7 hours in a row since... hmmm.... March, probably. Yeah for sleep! :) This can't happen very often, because we usually need to get him up for an extra feeding in there, just to keep his calories up. But it will be a great treat once in a while.

Ryan is off studying Greek tonight, and I'm gonna go put kiddos to bed. Hope you all had a good day of rest today.

three appointments

We spent the day at UK clinic again today with Athan. We saw endocrinology, ophthalmology, and cardiology. Despite being a full day, complete with the ever-dreaded blood draw to wrap it up, it all went pretty well.

Endo: Based on some lab results, we may get to decrease his thyroid medicine a little. Otherwise, everything is going well. We may be able to space out his Cortef to 3 times a day instead of 4, watching his sugars for a while to make sure they hold steady during the switch.

Cardio: He is (surprise, surprise) still underweight, but addressing that issue was much more cooperative and less threatening this time around. We are going to do our best to pack on some pounds, of course. Now that his reflux, cough, and constipation are gone, we can increasing feeding frequency and add some fortified bottles back in to try and plump him up. Still, Dr. K was pleased with how Athan looks. We repeated his EKG and ECHO today, and there was not much change in either. Also, no change in meds for now.

As far as heart surgery goes, Dr. K said growth is more important than getting to the surgery quickly. As long as Athan is growing well, the surgery can wait. At least it can wait up to (but probably not past) his first birthday.

Ophtho: One of his eyes may be turning inward a bit, but it is really too soon to tell. Dr. Napier suggested a couple of things we can do (like putting a patch over one eye at a time while he is awake to make sure he is using both eyes equally), but she didn't feel strongly that we should do it right away. Mostly, we're still in a wait-and-see mode about his eyes. So much of his ability to track depends on head control, also, and some of his visual inconsistencies may be do to problems with his low muscle tone. Physical therapy with Laurie will show us just how much that is influencing his tracking.

Morgan spent the day with Jason, Hannah, and Margo again. And they washed our dishes. And they fixed us dinner. It is humbling to keep living on the receiving end of so many acts of service. The community of people around us has shown compassion with stamina, and we remain so very thankful.

small favor (attn: all blog readers)

Early on when the comments started pouring in, we realized there was no good way for us to respond to them in the "comments" box. Most of the time we wouldn't know what to say anyways, for we are mostly in awe of the way you have loved Athan & our family through all of this.

However, there are times we would like to respond and for many of you we do not have current contact information. If you have followed this blog at any time (whether you have commented online or not), could you do us a favor and send your contact info (name, address, etc) to us at athansjourney@gmail.com

Thank you all so much-

The Strebecks

my favorite new toys...

I've found my toes! (and tell me that grin doesn't melt your heart!)

PT again

Laurie came again today to do physical therapy with Athan. She seems really pleased with his progress. He is working harder with his neck muscles to hold his head steady. I think the exercises we have been doing are going to help him so much. He still prefers to keep his head to his right side - probably a preference he developed in NICU when his IV was on his left side. But she showed me more stretches today to help him work on that, too.

Laurie also brought her daughter Jordan with her today. Jordan is ten, and she's fabulous with Morgan. They went outside and Jordan chased Morgan around the back yard for us during Athan's therapy. SO fun! :) Morgan also got to go to the park again today with the Herons. It is so good for her to get out of the house, and to have people pay attention to her instead of just Athan.

I'm feeling better today. Thank you all so much for praying. I know there will be more days of grief and anger, and I'll ask you to pray me through those. Today, I've come up for air a bit.

I caught some good pics of Athan today. I'll try to get one up soon.

good times, mostly...

Athan is feeling well, it seems. His cough is almost gone, and his congestion is clearing up little by little.

Morgan is potty trained! We're not totally accident-free yet, but she has not had a diaper on at all in almost a week.

It was good to have Courtney here for a couple of days. Ryan graciously stayed here with the kiddos so she and I could have lunch yesterday. We also went to the mall to get haircuts, which I badly needed! For the first time since jr hi, I have layers... hmm....

Ryan is studying today. He got a little behind last week when Athan was sick, and more this weekend with company here and other projects to work on. I think being gone today will help him catch up.

All in all, things are going pretty smoothly today. On the outside, anyway. Inside... it has been a hard day. A very surprising trigger sent me into much grief today. I'm just sad. And mad. Mad that Athan has to be on meds for his whole life. Mad that his body isn't doing all the things that most people's bodies can do. Mad that every other time he nurses he has to start with medication. I know all the stuff - like it could be much worse and at least he's alive and can't I just be glad for the good things? I am, but it's not bigger than the sadness and anger today. I hope I can navigate these emotions appropriately so they don't linger or take over.

PT report and Courtney's here!

Physical therapy went well. Laurie showed us several ways to help Athan work his neck muscles. He has gotten in the habit of "stacking" - he hangs his head back so that all the vertebrae in his neck stack together and support his head without having to use his muscles. We have some exercises to do to help him learn to keep his head forward. Laurie was great with him. She would work with him until he got fussy, then take a break and let him settle down before she pushed him more. We'll see her again twice next week (Wednesday and Friday).

Also, my friend Courtney is here! :) She travels for her work, and it brought her to the Lexington area this week. She has the weekend off and is staying with us. So good to have her here! :)

MUCH better

Athan is feeling much better, and I've gotten much more rest, too (Ryan took the tough shift last night and gave a bottle at 3 a.m. - what a guy! :). Athan's reflux is improving, and his temperature is steady. He still has a nagging cough, but he seems to be kicking that also.

We will go ahead and start Athan's PT today. Laurie will be here at 4:30, so we'll try to get an update posted to let you know how that goes.

Quick "cute kid" story: This morning, while I was feeding Athan, I was reading a book called "Fancy Nancy" to Morgan. It is a current favorite around here. As we were reading, I asked Morgan "Are you a fancy girl?"

She looked at me with the non-verbal equivalent of "how dare you speak such blasphemy!" Then she said, "No, I'm not fancy. I'm just Morgan." :)

oh yeah, and...

For those of you following our calendar, we were supposed to start Athan's physical therapy today, but did not because of his fever and fatigue. If he is better by Friday, we'll see Laurie at 3:30 p.m.

tough day

Athan has not been feeling well at all, which is why I have not been able to post for a while. His reflux has been terrible, and he is having some trouble pooping. He also has had a fever for about 24 hours, so he didn't eat or rest well during that time. Better now, though. The fever is gone.

Good news: we get to stop the enalapril. I think it has been causing the same problems as the captopril did, and his cardiologist told us yesterday that we can stop giving it to him. Next time we see cardio, he may adjust the dosage of the 2 other heart meds Athan is on, but I think that will be much better. He has never had any adverse reaction to the other meds.

Ryan stayed home from class to help with Athan today, and Hannah kept Morgan from mid-morning until nap time. I got some sleep this morning, and Ryan caught a nap this afternoon, but someone has been holding Athan for almost every hour of the last 24+. Tonight may be another long one. I need your prayers for stamina, and the ability to remember at 3 a.m. that I will get to sleep someday.

thanks!

Ryan's back is better. He is, in fact, cooking me breakfast as I type this. Athan seems to feel better, too. He cried and cried until about 3 a.m., but he has slept and ate well since then.

Ryan says I shouldn't have posted about his back. Evidently injuries don't count unless they hurt for at least a week.

in case you're awake

Would you pray for our family tonight? Ryan strained his back today, and cannot stand up straight, much less rock Athan or help Morgan with the potty. Athan is not feeling well - having some reflux again, not eating well, and not sleeping much. He'll need lots of Mama tonight. However, I got to sleep from 11 to 12, then from 3 to 6 last night, so I'm a little low on awake-ness tonight. :)

Thanks for praying!

First Steps Planning Meeting

We met today with all the folks that are involved in Athan's therapy through First Steps. Our service coordinator will be Corey, and he'll help us make sure everything is working together well. Athan will see Amanda with VIPS once a month, and Laurie for physical therapy once or twice a week. He officially starts physical therapy on Wendesday, and we are excited. Just in the past couple of weeks we have followed some of Laurie's suggestions, and he has shown so much improvement in his movements and even in head control. I'm looking forward to learning more from her, and seeing how Athan responds to the therapy.

new med and movement milestones

We talked to the cardiologist, and he substituted Enalapril for the Captopril. Hopefully this one will have the same positive effect (reducing leakage of his heart valve) without the nasty side effects of reflux and cough. We just started it yesterday, and so far everything looks alright.

Also, Athan was lying on his side on one of his play mats today, and he was really investigating the patterns he could see on the mat. He was reaching for some white dots on a black background, which shows much improvement in his arm movement and hand-eye coordination. Then, over the next 30 min. or so, he kept scooting to see new parts of the play mat, and managed to move his body about 270 degrees around in a circle, rotating on his hip. Yeah! :)

Our sweet Auntie B sent Athan a Bumbo, which will be a big help in our physical therapy. It will help us stabilize his torso so that he can focus on learning to control his head and keep it centered. Thanks Aunt Berniece!

And thanks to all for the encouraging comments (on blog and in person),cards, e-mails, and phone calls. As sleep deprivation has really taken a toll on my energy lately, and it helps so much to hear from you in the midst of a tough stretch of sleeplessness or fatigue. Blessings to you for having compassion with stamina! :)

you oughta see this!

I know every parent reading this will know what I mean. I just wish you all could be here to see this. Not any specific "this." I wish you could be here to delight with me in the 1000 things I see in my kiddos and my husband every day (and that I could never capture on a blog).

Athan smiles with his whole body. His forehead wrinkles, his ears go up, his eyes squint, his arms and legs and body wriggle with delight, and his giant toothless grin melts my heart a hundred times a day.

Morgan is such a fun kiddo. Yes, even when she's oiling up with A & D. She has been telling us stories. "Once upon a time, Morgan was a little girl, and went with her Dad." She is also really making strides with the potty thing (have I mentioned that she is pretty much doing this herself - I was going to wait until later in the fall).

My husband is an amazing father. Athan already knows his voice and turns to find him when he hears it. Morgan adores her Dad. He teaches me about parenting every day. I couldn't do this without him.

I'm just in such awe of the people God lets me live with and be with every day, and I wanted some company in my celebration tonight. I hope for all of you to have occasion to celebrate your own gifts soon, and that others will join you in your delight and gratitude.

VIPS

We had our initial evaluation with VIPS yesterday. Amanda was wonderful, and she showed us lots of ways to help Athan learn to use his eyes. It is, of course, impossible to tell just how well Athan will be able to see, but we know that he CAN see. He is tracking faces and objects, but he is somewhat inconsistent. The exercises Amanda will do with him and teach us to do will certainly be good for him, regardless of how good his vision turns out to be.

We also got an e-mail from Lauri, the PT who did the evaluation last week. Her test results confirm delay, but it is consistent delay (across all areas he is behind the same amount). We have been doing some of the exercises she showed us to help him with his head control, and we are excited about learning more once therapy actually starts.

His reflux is also much better since we stopped the Captopril. He is much more relaxed when he eats, and he is resting better between meals. So glad we're off that med! :)

Oh! Thanks for all the great tips. Aunt Berniece & Abby suggested baking soda, which got the greasy gunk out of Morgan's hair, and Dawn worked best on her skin. :)

any suggestions? :)

Well, Morgan had a great few nights where she was staying in bed and resting well through the night. And then...

Last night our friends Alan and Sarah were here watching a baseball game with us. I thought I heard some rustling upstairs, but I wasn't sure if it was Morgan or our neighbors (hard to tell in apartments, ya know?). I talked for a little bit longer, thinking Morgan would come downstairs like she usually does if she's up. Then I headed upstairs.

It was Morgan. AND I had left the door to our room open, which I rarely do after she is asleep. She left her room, went into ours, stripped clothes and diaper off, climbed on top of the changing table, and proceeded to cover herself in A&D ointment (after she tossed all the push-pins from the cork board onto the floor, which I almost stepped on before I realized the extent of the damage). I don't know if you've used A&D, but it's super greasy diaper rash ointment. She looked like she was oiling up for a body building competition. It was all over every inch of skin she could reach, and in her hair. Then she could not figure out how to get down quickly enough, so as soon as I topped the stairs, she asked "Did Morgan go tee-tee on Baby Afan's changing table?"

What can you do except smile and clean up? Especially since it was my fault for not keeping the door closed or getting upstairs quickly enough. So I put her in the tub (at 10 o'clock), and we washed and washed and washed. Baby soap. Regular soap. Dish soap. Twice each. She was still oily when I got her out (after 3 baths).

:-)

So this morning, she's better. She's absorbed all the oily gunk into her skin. The issue is hair. I washed her hair 3 times, and it is still FULL of grease this morning. Any helpful tips (besides "lather, rinse, repeat, repeat, repeat, repeat..")?

an odd feeling

For Athan's sake, I'm glad we don't see any doctors again for a while. He needs a break.

For Mama's sake... It's odd to have seen an MD so frequently, and now we're on our own for weeks. This will be our longest stretch without seeing a doc so far. It's exhausting, but at least reassuring to know that "experts" are seeing Athan so frequently. For the next few weeks, it's all on Ryan and me, and today that makes me a bit nervous. I suddenly want to call and schedule and appointment with Dr. Coburn in 2 weeks, just to make me feel better. I won't, but it's tempting.

Athan was pretty sore after his immunizations, and he had a slight fever last night. He seems better today. Some lingering soreness, but the fever is gone. I think I hear him "requesting" Mama right now. :)

Dr. Coburn today

We saw our pediatrician today. It was a full day again: We started immunizations today, which meant no less than 4 shots for our boy. He also has an umbilical granuloma - a litte red bump of extra tissue in his belly button - that required silver nitrate application (which we will probably have to repeat in 6 weeks, and he may have to tie it off as well).

I also told Dr. Coburn that Athan had started refluxing and coughing lately, which we learned from the PT is common in babies with low muscle tone like Athan. However, it also coincided with the addition of the most recent heart med, Captopril. Dr. Coburn says that it is almost certainly the medicine. So we are stopping the med, and we'll be in touch with cardiology to find out if we will have a replacement med or not.

Seeing Dr. Coburn is so reassuring. Above all, he listens. He is attentive to his patients, and he keeps up with Athan via much correspondence from UK. But he also listens to Ryan and to me. I appreciate so much his respect for our voice as parents. So encouraging, and so much more likely to do what is best for Athan because he finds out all the variables before deciding what to do.

And Athan, by the way, is amazing. For a week he has had trouble sleeping because of reflux and coughing. Yesterday he had an EEG and blood drawn for labs. Less than 2 hours ago, he had 4 shots and his belly button treated with silver nitrate. And right now he is laying in the floor kicking and grinning and cooing like none of it happened. I am in awe of our little guy already. Such resilience.

Now we finally get a break for a while. We have more appointments at UK in 4 weeks, and Dr. Coburn again in 6 weeks. It'll be nice to have a break from UK days for a while. yeah! :)

2nd/3rd - EEG/Neuro

We took Athan to repeat his EEG. Not fun. The test itself he doesn't even feel, but the prep and clean-up are the tough part. The EEG measures electrical activity of the brain, and to connect the wires that pick up the signals, his head was scrubbed with some rough, grainy stuff and covered in goo. Then she wrapped his head in gauze to keep them in place - about 25 wires. Then she records the measurements, then takes all the gunk and goo off.

The results this time were pretty much the same as the ones from our time in NICU. Athan has some abnormal spikes of activity from one specific place ont he right side of his brain, which can be indicative of some kind of seizure activity. He has never actually had a seizure that we have seen, but because of the EEG, he will stay on his anti-seizure med. The good news is that the MD (Dr. Robertson) says that instead of increasing his dose as his weight and height go up, we will just stay at his current dose and let him outgrow it. If we still do not see any seizure activity, we will be able to take him off of it. Our next appointment with neurology is in early December.

I was disappointed, of course that the EEG wasn't normal. Just sad for my boy. I really wanted off the yucky med, too. Still, though, I know your prayers are carrying us through all of this with more strength than I can explain. Thanks again, friends.

first appointment today - endo.

We saw Dr. Irene this morning. I wish you all could meet her - she is so great! So much energy and warmth - and she's good at her job. She says Athan looks good. We sill check his hormone levels for thyroid and growth with labs later today, and maybe adjust the dosage of some of his meds.

He is growing in length like a little weed! :) 24 inches today. He is still thin, especially for his length. However, the good news is that his rate of weight gain is up this time! yeah! :) He weighs 10lb 5oz today. Last time he was only gaining about 14 grams a day. This time he was a little over 20 grams a day. So glad about that.

We're grabbing some lunch, then heading over from the clinic to the hospital to repeat his EEG. Then we see neurology this afternoon for the first time. Will update soon.

long one...

So much to report! :) This could take a while:

This is the first time I've been to the computer in a while. Ryan has been sick (sinus infection), and so he could only help a little with Morgan and not at all with Athan. Unfortunately, Athan was also constipated and had some reflux last night, and Morgan woke and 3 times between midnight and 4 a.m. There wasn't a lot of sleeping here last night! :) But I got a nap this morning, Morgan got a nap this afternoon, and Athan has slept better. Ryan saw Dr. Coburn and got some meds going. He seems to feel better this afternoon.


We also saw Athan's physical therapist for the first time today. She just did the initial evaluation, and we won't have the actual score for a few days. Her name is Lauri, and her husband is also at the seminary to get his MDiv like Ryan. She understands the challenges facing seminary families, as well as the special needs Athan will have. In just a few minutes, she taught us some things that will help Athan strengthen his muscles and increase his muscle tone - especially his head control. So now we have some new exercises to work into his routine.

Tomorrow we're back at UK all day - to see endo, neuro, and repeat his EEG. Thursday we see Dr. Coburn, and we'll be asking about his belly button (not quite healed yet), reflux, and constipation. Next Monday we'll meet with a rep from VIPS to see if Athan needs therapy to work on his vision, too. We'll keep you updated on how the appointments are going.

Would you pray for me to find new times and ways to rest (even if it means leaving the dishes for a while)? I just want to be rested enough to parent well. Thanks! :)

a few pics

such a happy boy:


Morgan's favorite place to be:
the special shelf Ryan built and mounted for Athan's meds:
example of meds:

family, family, family!

What a week! We got to have a few great days with Nana and Papa, and now Grammy Tammy, Uncle Josh and Uncle Jer are here. We also got to meet Josh's friend Laura yesterday, and Morgan especially was sad to see her go!

The kids and I stayed home last night so everyone else could go to Cincinnati to a concert. My cousin Clay plays with Pat Green, and they performed there last night with Sugarland and Kenny Chesney. I think they had a good time, but I didn't ask many questions when they got back at midnight last night. :)

Athan is doing well this week. We're still trying to pack in the calories, and we have added the new heart med (captopril) 3 times a day. I am really hoping the heart surgery will get him off of all this cardio medication. UK is in the last stages of hiring a new surgeon, and we'll have more detail about the surgery when we meet with him.

He is just such a sweet boy! I wish you all could be here to see him grin at his sister when she says "hi bubba," and kisses him on the head.

better

The post-rant update is that I am doing much better. We are doing just fine with Athan's routine, and I'm thinking of some better ways to communicate with all the docs as we keep walking this out.

Athan and Morgan are LOVING it right now - Nana and Papa are here to see them! :) Ryan gets back this afternoon (having been at a wedding in Texas since Friday), and we're ready to have him here, too.

With all the extra help here, I have a little time to relax. Sorry for the short post, but I'm going to take a NAP! :)

frustration!

So many of you have expressed your appreciation for this blog, and I'm glad it has been good for you. It has also been SO good for me. It helps me process all of the various ups and downs and arounds of Athan's Journey when I have to sit down and organize it all into sentences and paragraphs that make sense.

But it isn't working today. I can't seem to process all that we heard yesterday into anything that makes sense to me or anyone else. Everyone's diagnosis is a bit different, and the instructions are starting to run into each other in seemingly incompatible ways:

He needs to gain weight, so he needs more calories. So we'll do the fortified bottles. But he won't take as much and he gets more gassy and (therefore) fussy when he has a bottle, so all the extra calories are spent when he doesn't rest well because he's still hungry and fussy because his tummy hurts. So I'll just breastfeed him more often. But not too often, or he'll spit up and loose the calories and meds we just got into him. There's also the issue of making sure he is actually hungry enough to eat well each time, or else he never gets the hind milk that has more calories and fat that he needs.

We need to do meds before he eats to make sure he is hungry and will take all of them in. But taking meds makes him tired, and then he doesn't eat well, which his calorie count can't afford. So we switch meds to after or between meals, and he just lets them dribble out of his mouth and won't swallow. We also have to keep his doses of certain meds spaced out, so some kind of schedule is needed. But when we adjust his eating schedule to up his caloric intake, his med schedule gets blown to bits.

His physical therapist wants him to exercise more, which requires calories that his cardiologist would rather us not spend. He needs to be active to catch up with his head control, but sleep enough for his cognitive processes to remember what his range-of-motion exercises are teaching him.

So take all of those tensions to the doctors' offices, and try to report what you've been doing at home for Athan. The result is that no one is happy. The PT wants more activity, the cardiologist wants more rest. The dietitian says more bottles, the geneticist says more breastfeeding. None of them are talking to each other, and when they talk to us, each one sounds like a reprimand of some kind. That slathers on another layer of internal tension for me - don't ever state or imply that a Mama bear is not doing all she can for her cubs unless you want to get mauled. Ok, maybe not mauled. But it doesn't make for a receptive audience, I can tell you.

So, even 24 hours later, I still have no idea what to do. Apparently, we have to make sure that Athan is awake and sleeping, active and resting, burping, pooping, and eating (from bottle and breast) all at the same time for 28 out of 24 hours a day. If we do all that, plus give Morgan away immediately and never sleep again, then we will be doing all of the "best" things for Athan.

I just needed to rant. Now I can go back to doing the best I know to do today. Thanks for staying with us through all of this!

cardio visit today

We were back up at UK bright and early this morning for a couple of appointments for our boy. Athan was seen by Ronda in NICU clinic. She is the physical therapist, and she squeezed us in so she could do the evaluation we needed to qualify for First Steps. She'll get her report to the First Steps folks, and we'll be hearing from them about what we do next.

We also were seen by cardiology. As we found out last time, Athan will have heart surgery sometime between 6 mo. and 1 year old. The hospital is hiring a new surgeon right now, and our cardiologist (Dr. K) says he is a great surgeon with over 20 years of experience. Once the hiring process is complete, we will meet with the new surgeon and get more details about the specifics of the surgery. Dr. K also added a new med today - one that will cut down on the amount of leakage in one of Athan's heart valves.

The most immediate concern about Athan right now is his rate of weight gain. He is gaining, which is good! He is just hovering a bit below the rate of weight gain they would like to see. We discussed several options, and we are going to try several ways to get our kiddo more calories while keeping him from burning to many calories unnecessarily (new heart meds should help, bottles with fortified breast milk, increased frequency of feedings, etc). We just have to keep playing with the options and find what works best for Athan. Would you pray with us for Athan to start packing on pounds?

Big thanks to Adam and the Herons for taking care of Morgan today. It is such a big help to us all! :-) I think Morgan only bullied Margo a little this time.

attempted Thank You turned comedy of errors

Kim was Athan's primary nurse in NICU (pic posted in previous post, if you need a visual). She drove all the way out here with her girls to see us today. I wanted to take them to lunch as a (very small) gesture of thanks for the amazing ways she took care of us all during such a difficult time. I think I just ended up torturing them for 2 hours!

We left Athan and Dad at home, and headed downtown Mayberry - I mean Wilmore - to Tastebuds. I love that place, but it might be the least kid-friendly restraunt known to man. For the first time in history, the tiny little understaffed soda/sandwich shop was packed. We cleared our own table so we could sit at a "booth." The term "booth" needs some defintion: picture the smallest table you've ever eaten at, then cut that in half, and that's the size of our table today. Around it are the chairs from the world's first theater - the kind that fold up and down. So we squeeze in a 1st grader, 2 toddlers, and 2 mommies (one pregnant). We have to enlist Kailey (1st grader) to hold down the seat for McKinley (1-yr-old) so she doesn't disappear into a taco of wiggly discomfort when the seat flips up with her standing in it! Kailey, great big sister though she is, could only take so much of being McKinley's jungle gym. Morgan, meanwhile, has flipped her own seat a couple of times and spilled most of her lunch onto the floor below us, and refuses to eat the rest. We're fighting like crazy to keep kiddos' feet out of the mess below and hands out of the hot pizza that is now taking up most of the square inches on the table. When Kailey is finally fed up, she moves into my seat to sit by Morgan and I fetch another chair to sit at the end, only to have Morgan climb immediately into my lap because she's afraid I'm leaving. When she calms down, we shuffle again so Morgan can sit by Kailey....

Getting the picutre?! That went on right up until Kim had to leave - just as Morgan (quite suddenly) hit the I'm-too-tired-to-stop-screaming state.

I should have just sent her an "I 'heart' Nurses" coffee mug, right?!

Seriously, it was so so good to see Kim again and meet her beautiful girls. If she's brave enough to let me try again sometime, I think we'll stay here for lunch! :-)

continued improvement

Being home with our kiddos has been so sweet these past few days. Athan is doing well - getting so big and strong! He takes meds like a champ, too. Morgan continues to settle in and settle down. She is still very much 2 - always testing limits like toddlers are supposed to do. But you can just tell she's happier and more secure now that she's home and has some kind of consistency. Ryan and I are resting more, and trying to get things in order before school starts.

Thanks again for praying!

3 things

1 - Thank you all for praying. The power of prayer is being lived out in our house and in my heart. The panic is subsiding. The toddler is...well, "subsiding" might be the best word for that, too. :-) Ryan and I are trying to get some rest. Things have just gone much better these past couple of days.

2 - We had our initial meeting with First Steps. Karen (wonderfully helpful person) came by the house on Tuesday morning to tell us all about the program and get the paperwork part of the process underway. First Steps, if Athan qualifies, will hook us up with a physical therapist to work with him to improve muscle tone and help him meet some physical developmental milestones he may need some help with (like head control, etc.).

3 - At our check-up yesterday, Athan was 9lb 6oz. The appointment took a while, and then drawing blood for labs was pretty tough this time. He was pretty tired from the whole thing, poor guy. Meanwhile, however, Morgan got to spend the day playing with her friends Madeline and Miss Trish. It was quite a fun day for her! :)

Athan, 7/31

I've rarely been so excited about simple movements, noises, and grins...

may we ask again?

We need prayer. You all have upheld us so well these past couple of months, and we remain so thankful. Because of the power and effectiveness of your prayers, I'm asking again:

I think the word that encompasses this prayer request is this: rhythms. We need to establish healthy rhythms for our family. The initial trauma is over, and the adrenaline rush that came with it is fading. Fatigue and inconsistency is beginning to take it's toll on all of us.

Athan is moving toward a regular routine, and we ask you continue to pray for that for him.

Morgan, also, is showing the effects of 2 months of almost no consistency. Would you pray for her to be able to return to patterns of eating/sleeping/playing that are best for a toddler?

For Ryan and I, I ask for rest and wisdom. Rest we need to be able to care for or kiddos well, and especially as we look ahead to school starting for Ryan again in a few weeks. Wisdom, also, about how to make good decisions about taking care of ourselves, relationships, our responsibilities. Right now almost every right decision for Athan seems like the wrong one for Morgan, and vice versa. We need some insight for resolving that tension.

I'm a sprinter by nature. I'm confident that I can do anything - for a little while. But when I look at the marathon ahead, I get a bit intimidated. Panicky, sometimes. But when you pray, my panic subsides and clarity comes. My resolve returns. I need that today.

thanks Auntie B!

She caught some very "Athan" pics while she was here. Finally we can share his great grin with you all!:

kids are fun! :)

We had a great couple of days with Auntie B and Na-Na (otherwise known as Aunt Berniece and Grandma Hale). Morgan still asks for Na-Na sometimes, and Athan misses all the good snuggles from his Aunt B.

We had an eventful night last night. Athan was up quite a bit - gassy, I think. Morgan also got up, and proceeded downstairs by herself. By the time Ryan got to her, she had been down here long enough to grab the cup of pens from the desk, write on my computer with a highlighter, and write all over her leg with black ink pen. So we'll be putting the gate up at night now. :-)

Athan seems to be resting well now, so I hope he'll catch up today. He occasionally seems to have extra trouble with his epiglottis, and has trouble with swallowing lots of air. It just corrects itself after a while, but it seems to bug him for a few hours before it does. I think we're at the end of those few hours this morning.

Dad and Morgan are off on a treasure hunt in the land of Wilmore Garage Sales, so I'm off to rock Athan for a bit.

Dr. Irene today

We just got home from Athan's appointment with the endocrinologist. Seeing Dr. Irene always makes for a good day! Looks like everything is going well - his meds seem to be the right dosage for now. He had blood drawn again (which went really well - they actually found a vein and were able to draw it quickly instead of having to do another heel-stick), and we will know more by the weekend about whether we will be adjusting dosage or not. She also drew some blood to send off and see if we need to do a round of puberty hormone replacement, so we'll be hearing from her about that, too.

His rate of weight gain was up over the past 2 weeks, so that was encouraging! He weighs 9lb 3oz today, and he's 23 inches long. Last we checked he was gaining 18.5 grams/day, and this time works out to 22 grams/day. The goal is to be closer to 30 grams/day, so we're moving the right direction. :-)

Athan and Morgan are both in the living room having a big time with Na-Na and Auntie B. Fun!

not a quiet day :)

THEY'RE HOME! :) Ryan and Morgan got in late last night, and man was I glad to see them! It seems like Morgan grew a foot and turned four in just one week!

Athan is doing great. Grandma Hale and Auntie B are here to hold him for a couple of days. I get to sleep tonight because they are going to give him a bottle for the 3 a.m. feeding. Wow, right?!

Tomorrow we go see Dr. Irene again (endocrinologist). We will do our best to post an update tomorrow afternoon with all we learn from her.

Morgan is a trooper. We have asked a lot from that toddler, and she is doing really well - considering. I continue to ask you to pray for her during this time of such chaotic schedule and anything-but-routine life she's living.

quiet day

Mee-maw left yesterday. Oh how glad I am that she came to see us! It's not a regular event to spend time with one of my heroes. She's an amazing woman, and I miss her already.

Athan and I are alone. It has been sweetly quiet here today - just getting to know my boy a little better every minute. I'm glad to have a little quiet time to watch and listen and learn Athan's language a bit more.

He is doing great! Growing, eating, playing. Getting stronger by the hour. He still takes his meds really well, and his sugars are consistently good.

We're ready to see Ryan and Morgan! They will leave New Mexico tomorrow afternoon, stay with some friends in Texas briefly, then travel here Sunday and Monday.

re-post

I wrote a poem that I posted on my other blog. Since it is (partly) a prayer for Athan, it seems appropriate to include it here:

Mark 9:24 (for the Venables and Athan)

a bird by-
tip of branch
in tip of beak;
i search sky-
ink in hand
to write or speak
words?

my son sleeps-
unaware
of heart's pale beat;
my friends weep-
spent eyes there.
in need we seek
prayer.

clouds roll through-
sun and shade,
so faith and fear;
seeking You
words evade.
be Healer near
please

meds and bottles and tears

Athan has been on his new heart meds for a few days now, and he doesn't have any adverse side-effects to them. Yeah! :) He is still doing well taking the meds - just a little trouble taking in too much air sometimes.

We also added the "beefed up" bottles to add some calories to kiddo's intake. Mee-maw gave him the bottle yesterday while I sat in the kitchen and cried a little. I know he needs the extra stuff to prepare him for heart surgery, but I missed our time together. It's hard on Mama that I'm not enough. In seeking an upside to Athan taking a bottle, I'm looking forward to being able to miss a feeding and having time to take Morgan to a movie or something when they get back.

I get so focused on posting about the details of meds and such, and it is easier to write about the things that are concrete and quantifiable. I can't seem to find adequate or accurate words to tell you about how very sweet Athan is. After the trauma since his birth, I was bracing myself for a chronically fussy baby, but that has not been the case at all. He is so very content - he wakes up to eat, and then just coos and smiles, looks and listens. His gentle strength is evident already - such a lovable steadiness in his life. He is quieter than Morgan was, but no less content with life most of the time. Every time I hold him, feed him, watch him, or pray for him, I fall in love all over again with my steady son.

Jordan & Brittany's wedding

Auntie B emailed some pictures this evening, and i know everyone was anxious to see some pictures of the flower girl. Morgan was right at home in this role (especially in an outdoor wedding!) and became good friends with the other flower girl, Raegan. The wedding was all around beautiful...really.




For those of you in Kentucky, we miss you. And for those of you in Texas/New Mexico, we hope to see you while we're here. Adios-

couple recent pics

He looked so cute with his hands tucked up under his chin while he slept!

Morgan wanted to help Mom hold baby Athan. She is so sweet to her brother!

missing them already

Ryan and Morgan left at about 4 this morning to go back to Texas for Jordan's wedding. I'm missing them and sad that Athan and I don't get to see everyone this weekend. But Mee-Maw is here with us, and we're hoping to have a nice, restful week here. I'm glad Ryan and Morgan will be able to be there. Jordan and Brittany - know that we're praying for you both from Wilmore!

Athan has been pretty sleepy after our full day of doctor visits yesterday. He is resting and eating well. I will go pick up his 2 new meds in a couple of hours, so we'll start those this evening or in the morning. I'll post again soon and let you all know how that is going.

I finally had my postpartum checkup a couple of days ago (thank you, Candace). Everything still looks good. I was nervous about being underweight after such a rough pregnancy, but I jumped on the scale at the clinic yesterday, and I'm only 3 pounds under my pre-pregnancy weight. I'm so thankful that my healing has gone so well and I have been able to care for Athan during all of this.

NICU Grad Clinic

We also had an appointment with the neonatologist. Dr. Desai was very, very encouraging and helpful. Their job is to make sure that the whole treatment plan of the different specialties is working together well, and to assess Athan's progress as a whole. She said overall, he seems to be doing well, but had 2 areas of concern:

1 - His weight gain is a bit on the slow side. They like babies to gain between 20 and 30 grams a day, and he is gaining about 18.5 g/day (he weighs about 8lb 8oz today). For an otherwise healthy baby, this would be an acceptable rate. However, Athan's heart is taking extra calories since it has to work harder, and he also is just recovering from so much sickness and trauma. So the dietitian came in to see us, and for two feedings a day I will pump and mix a little formula in with the breast milk to up his caloric intake. (I suggested that since he'll have to take those feedings in a bottle, that it be the 3 a.m. feeding so Ryan can do it! :).

2 - His muscle tone is still low. The gave us instructions on how to contact a state-funded program called First Steps, which will basically get Athan started on some in-home physical therapy. It's quite a process to get started, so we'll be updating on that as we go.

cardio 2

Ok, we finished up with the cardiologist, and here's basically where we stand with them:

Good news: We were wrong about the malfunctioning valve. After the ECHO, they told us that his valve is competent and functioning just as it should.

However, we knew from NICU that Athan has 2 holes in the wall between the upper chambers of his heart - the larger of the 2 is higher up on the wall between the chambers (ASD) and a tiny one further down (VSD). The hope was that they might close on their own, but Dr. K (cardiologist) told us today that they will require surgical repair. Athan will have to have a surgery. As to timing, we are not exactly sure. Probably it will be before he turns 1. It is certainly not an emergency, as his heart is healthy otherwise and functioning well. The decision about exactly when to do the surgery will depend on the surgeon's assessment and preferences, and we have not seen him yet. Our next appointment with them is in 4 weeks, and we'll find out more about when we see the surgeon and more of the what/when/how about the proceedure.

That was hard news to hear. No one wants to know their infant son has to have heart surgery before his first birthday. But Dr. K did call it a "rewarding surgery" - not terribly difficult or complex, and once it's fixed, it's fixed. The holes allow blood to wash backward, and the extra fluid in one ventricle would cause it to enlarge over time. The surgery will prevent that.

He also added 2 meds for Athan: one to help his heart pump better, and another to help him get rid of extra fluid so his heart doesn't enlarge any more. Ryan is on his way to fill the prescriptions right now, and we'll figure out how to get them into the schedule.

cardio 1

We are in with the cardiologist's office right now. They just did an EKG, and the results showed that part of his heart is enlarging because of abnormal blood flow due to an incompetent valve. We are waiting to have his ECHO repeated, and then we will hear from the doctor whether or not we will had heart meds today.

another visitor :-)

My Mee-maw arrived today. Yeah! She will stay with Morgan while we take Athan for two more follow-up appointments tomorrow, and then stay here with Athan and me while Ryan and Morgan head to TX/NM for Jordan's wedding and visiting family and friends for a few days.

Tomorrow we will see cardiology first thing in the morning (9:30), then be at the NICU "grad clinic" just after lunch (1:00). Cardio is following a heart murmur, which will probably be another "wait and see" situation. It may correct itself, or it may require surgical repair down the road. Now that the initial trauma is over, "wait and see" is what we will be doing for a long time. So many of the questions that we have cannot be answered by anything but time.

Athan has done really well today. He has been less fussy, and has not thrown up again. He had stayed on schedule really well, and has also taken his meds really well. Right now he is "talking" with Mee-maw...

Morgan has done better going to bed and staying there the past couple of nights. Man, am I going to miss her next week!

We continue to be showered with generosity - calls, comments, cards, e-mails, meals, hugs, visits, and prayers. It is humbling to be on the receiving end of so much. I pray we emerge from this time willing and able to serve others as we have been served.

i love it when...

I love it when people come stay with us. It's not my favorite thing when they leave...

Ryan, Morgan, and Aunt Loy just pulled out of the driveway for the airport. It has been SO wonderful having her here! My house is clean, and I got hours and hours of sleep because she didn't. But more than that, I got to spend time with one of my dearest friends.

Athan has thrown up a couple more times this weekend. I'm watching my diet and trying to figure out if something I'm eating is throwing him off. His sugars have been steady in spite of some GI issues, which was a relief. Also, we have more follow-up appointments on Wednesday, so we'll let you all know what we learn from those.

Morgan is still going through a rocky patch with not resting well. She is doing better sleeping through the night, but getting her to stay in bed long enough to fall asleep has become quite a challenge. This whole summer was always going to be a tough time for her, but the added trauma and travel and such... we're asking a lot of a toddler. All things considered, I still think she's being quite a trooper. If she can just get through the upcoming Lubbock/Clovis trip, we'll be able to settle into a more long-term routine that lets her get the rest and have the security she's missing right now.

Love to you all! :)