sweet Saturday

Athan is having a good day today. We had a bit of a long night - I think he just had gas. His epiglottis (flap that protects his airway during swallowing) has a wrinkle in it, so he takes in quite a bit of air when he eats. Today meals have gone more smoothly, and I think he feels better because of it.

Morgan and I had a little mommy-daughter lunch at Solomon's Porch today. She is so funny! :) It was good to get some time out with her.

Again, both kids will be asleep soon, so I'd better do the same! :)

THE changing table

Ryan built a dresser/changing table for Athan before he was born. Some of you had asked to see pictures, so here are a few. We actually got a random magazine in the mail, and saw one we really liked. But instead of spending $800 (ha!), Ryan decided to build one for a spring project. The picture of the one he copied is here. These pics are of Athan's. He built it in a dark little garage (thank you, Chad) and didn't have much of a shop set up. Also, he used an old technique with wooden dowels for all the joinery instead of screws or nails.

pics! :)

staying home :)

Dr. Coburn was very pleased with Athan's condition this a.m. There is still some swelling, but it is down from yesterday. And Athan is eating well, alert and interactive after he eats, sleeping well, filling diapers, and holding his sugars up. We will continue to watch him closely over the weekend - especially after we give his growth hormone tonight - and of course go to the ER if there are any big indicators that he needs immediate attention. Otherwise we will call and report to Dr. Coburn on Monday morning about how the weekend went, and go from there.

On top of regular newborn-in-the-house-so-no-one-sleeps, it's tough to rest much when you have to prepare for a possible hospital trip (emotionally, logistically, etc.), so while Athan is asleep and Morgan is running and errand with her dad, I'm going to take a nap! :)

watch-n-wait again

Athan went to see Dr. Coburn again today. Early this morning, I was a little concerned because his fontanel (soft spot on his head) seemed swollen. We spoke to Dr. Irene first, wondering if it was a possible side effect of his growth hormone. She recommended that we go in and have Dr. Coburn look at it, so she called and asked him to work us in today. We went in at 1 this afternoon here in Wilmore to see him (precious friend Dru to the rescue again - kept Morgan so we could both go with Athan). Everyone agrees that Athan seems to be doing really well - eating, sleeping, diapers, not more fussy, no fever, etc., but no one is comfortable with the extra fluid we can feel. Ryan and I are watching him closely overnight to see if it is just some swelling that will resolve on its own, and we have another appointment at 8:30 a.m. with Dr. Coburn to check it again. If the swelling is still there, he may refer us back to UK Pediatrics as an out-patient tomorrow so they can look at him further.

Morgan is having a tough time with her schedule stuff these days. She missed a nap, and didn't sleep well last night. For her sake, we're trying to get back to a schedule that allows for regular sleep for her (at least ONE Strebeck should be sleeping normally, right?! :-).

Ryan got Mom and Uncle Josh to their respective airports today, so it's just the 4 of us here tonight. It was so great to have them both here. I miss them already.

1st outpatient appointments

Hey friends-

The whole family had a full day at the Kentucky Clinic today. Morgan is worn out, but Athan faired pretty well today! Our appointment w/ Dr. Irene (endocrinology) was first on the list this morning, and it was good to hear that she was pleased with Athan's progress over the last few days. She ordered a few labs to double check the current medication doses in case they need to be lowered or raised. The nurse drew blood and the little guy hardly protested this time as if to say "is that all you're gonna do today!?"

#2 was with opthalmology today, and Dr. Napier checked out Athan's optic nerve. There was initial concern in the NICU that his optic nerve was small, but today's exam didn't really seem to confirm that. She mentioned that it was not "robust & large," but also that it was not noticeably/obviously in bad shape. We were excited about that news for sure. As with any baby, we'll watch him to see how he tracks for the first few months and go from there.

So, all in all we were happy with the rounds today. It was great to be able to park in the hospital garage and leave a few hours later! Thanks to you all again for your continued prayers and acts of love on behalf of Athan & the whole family. If you catch Morgan at the right time of day (ha ha) she will remind you of the Psalmist's words: "Taste and see that the Lord is good..." Amen.

improvement

All around, things are improving at our house. Athan seems to be resting better between meals, and continues to take his meds well. Ryan and I are settling into new routines and communicating well about how to keep navigating this transition. Morgan still has moments of frustration, but she is making leaps and bounds in adjusting to life with Athan in mom's arms sometimes.

And Grammy Tammy is cleaning! :) Those of you who know my mom already know that is no small undertaking. I've always said I was raised my Mr. Clean's lesser known twin sister. And I am so grateful. Not only do I not have to do the actual cleaning, I am just more relaxed in a house that is neat and clean. It is amazing how much your environment affects your emotions. Thanks, Mom.

Tonight my brother Josh will fly in to be with us for about 24 hours. I've tried to tell him there are some nurses he needs to meet, but he's not sold on the Lexington-Austin long-distance thing. Even so, I'm glad Uncle Josh will be with us soon.

The next few days will be kinda busy for us: Josh gets in tonight. Tomorrow we will be in Lex for follow-up appointments for Athan with endocrinology (9:30) and ophthamology (1:00). Note to anyone at the hospital: we'd love to see you! :-) Then Uncle Josh flies out tomorrow night, and Grammy Tammy leaves EARLY (as in leave our house about 3:30 a.m.) Thursday morning. If I don't make it back to the computer before, I'll try to update again Thursday morning.

explanation

In the excitement of coming home, I forgot to offer much wrap-up that we got from the docs during our last stay at the hospital. Basically, the reason kiddo's sugars dropped and we had to go back to the ER was a medicine issue. The pharmacy has to mix up the liquid form of his hydrocortisone, and the solution wasn't holding stable. The actual medicine was settling to the bottom, and all he was getting was sugar water. So no we just crush a pill and mix it with milk, so we know he is getting the medicine. As long as he is getting the right dose, he does just fine with his sugars.

I'm sad that he had to go through all of those tests and labs again before we found out the reason, but I am glad that we found a reason! I was getting nervous about coming home and having another episode and another trip to the ER, etc. But now I am (increasingly) assured that he will continue to do well.

Also, it has been a while since we addressed what this all may mean long-term. And still, we don't really know. It doesn't appear that there was any insult to his major organs during his respiratory distress (no lasting damage from lack of oxygen). As far as his endocrine issues go - it will be a medical marvel if he is not on hormone replacement for the rest of his life. Of course, if Jesus wants Athan to be that medical marvel, we're all for it! Either way, we are all for whatever our boy needs.

And again, thanks for staying with us in prayer. How powerfully we see your prayers at work in us still.

just home

We're just home! It is so nice to just be doing relatively normal baby things at home - changing diapers (he is definitely getting enough to eat), treating diaper rash, not sleeping in very long stretches, helping Morgan adjust...

We're also doing the unique things that our boy will need - like figuring out a safe place to keep all of his meds together and away from Morgan, deciding where to keep our "sharps" bucket (for his used needles), and establishing a good routine at each feeding to crush pills and fill syringes.

Athan is doing well. For mom's peace of mind we checked his sugar today, and it was WAY good (110 for those of you who will care about the numbers). He is getting better and better at taking his meds - even phenobarb goes down pretty easily these days. In a few hours we will give his daily shot for the first time at home.

Morgan has had her ups and downs today. She seems to be mad at mom and dad some, but not at Athan. She did really well this morning - she was so very sweet to us all. This afternoon she seems a little tired of the new routines. But right now she is going to the grocery store with Dad, which should be a nice treat.

Grammy Tammy is here for a few more days, so we are leaning on her to help us get some things done. The plan was to be in New Mexico by now, so our house was ready for us to move out for the summer. Now that we've moved back IN for the summer, I've gotta find our stuff! :)

for the Kentucky crowd (re: meal schedule)

We have been so blessed by the way so many of you have asked to help with meals and such now that we are home. My sweet friend Dru has volunteered to help coordinate your efforts so that nothing goes to waste. Her number is 859-553-4318, and she will work with you to find a good day to bring a meal. Thank you all for your willingness to love on us through service.

Home; part 2

"Just making sure there's still room for me in the chair!"

Gram replaces the hospital bed for a while-

battle scars from checking blood sugars

on our way

We just went over paperwork, and are officially discharged. We will gather the rest of his stuff and head home within the hour! We get to take our baby boy home again. :)

today's the day

We've spoken to the doctors, and we think everything should be fine for us to go home today. We will give his shot at noon, stay a few hours to watch him, and head home later this afternoon if all still looks good.

Please pray for my Morgan. She has had to deal with so much already, and this next step of bringing Athan home will probably be the toughest one so far.

I can't imagine how anyone ever survives without prayer and real hope. Thank you for keeping us awash in both.

Friday morning

Athan had a good night last night. His sugars were consistently up, and he slept and ate well. We were told that they have eliminated the possibility of any additional metabolic disorders, and neurology decreased the dose of his phenobarb. He just had a little more blood drawn to check his electrolytes and potassium level again, and we were so relieved that it was easy to get the blood this time. It looks like we are still on track to go home either this evening or tomorrow morning, pending his next dose of growth hormone (shot) and how he handles it.

Ryan stayed here with me last night. I'm sure many of you know that hospital cots don't hold two adults very comfortably! :) Still, it was good to get a "trial run" of a night at home (sort of - there are still hospital protocols we have to follow that we won't at home - like taking his vitals every 3 hours, etc.).

a much better night

Athan had a smooth night. His sugars dropped a little, but they never left the "normal" range and seem to be on the way back up a little now. My emotions seem very tied to the number on the OneTouch machine (that tests his sugar), so I ride a bit of a roller-coaster when he does. Sugars are up, mom is "up." Sugars go down, mom gets down.

Today, we had more labs, which means more blood drawn. Yuk. Also, the new medicine will be here this afternoon, and we'll see if our boy can keep his sugar steady with that added. Endocrinology wants him to start growth hormone, which unfortunately means we will have to learn to give him a shot every day. He is just going to be one tough kiddo!

The plan now is to spend the next 24 hours doing all of his feeding/care/meds just like we will be at home, and watch him. If doctors and parents are comfortable with his condition and our readiness, we may go home then. Maybe the next day.

because some of you asked

Several have asked about how to leave comments on the blog. We would LOVE to hear from you, so I'll try to make it more clear:

At the bottom of each blog entry, it tells how many comments have been left on that one. If you click on it, you can read the comments in the left column that have been left by others. Also, there is a box on the right for you to leave a comment if you like. You don't have to sign up for an account - just choose the "anonymous" option below the box (but you can still put your name inside the comment box).

As of today there is a counter that shows us about how many times the blog is read. We know that it's been viewed over 200 times in the past 6 hours. We just want you all to know that we appreciate your comments (I cry almost every time I get to catch up on reading them), and we'd love to hear from anyone else who wants to.

The toughest little guy ever...

Kiddo didn't look too good for most of the day and was a little pale. So, when his sugars went up this afternoon and he was grinning at us, we thought it was worthy of a new picture--

Prayer

Josh gave me a copy of The Brothers Karamazov for Christmas a few years ago. I started it then, but did not finish and have been wanting to find a time to read it ever since. I decided this summer i would try again, so I've been keeping it at the hospital. I came across the following dialogue this morning and thought about our friends/community of faith. Fyoder Karamazov is a key character in this book and is for the most part a drunken, depressed fellow. His youngest son is a unique, courageous young man who has decided to become a monk. Upon hearing that his son was wanting to enter the monastery, Fyoder Karamazov said in a bit of despair: "I've always been thinking who would pray for me, and whether there's anyone in the world to do it..."

I read this today and thought about the loneliness and fear that grips people from time to time, accompanied by thoughts like Fyoder's. "Is there anyone in the world who would pray for me, or go to bat for me?"

We are grateful that through all of this, that is one thing we have never wondered. You all have joined the Holy Spirit in praying for our family and for the hope of the Kingdom in a time when we ourselves did not know how to pray. Again, thanks to all of you.

Ryan

When I read the first paragraph that Ryan wrote, I remembered a sermon from chapel this semester by Dr. Kalas [click here if you'd like to listen]. He spoke of the many, many people who pray for him, and the unfairness of the fact that so many have no one who pray for them. I feel that deeply today. Please keep praying for us - we need it. But also, even as a favor to Ryan and I, pray also today for a Fyoder Karamazov. Take a moment to intercede for someone that may not have anyone else praying for them. Thank you, thank you beloved friends and family.

Amberly

up and down again

Athan is not having a very good morning. His blood sugar dropped again. It has not been as low as the two times he was in ER, but it is below the acceptable level. He is back on sugar via his IV, and endocrine is raising his dosage of hydrocortisone. Also, they will probably add growth hormone tomorrow or Friday. Basically, kiddo just can't seem to regulate his sugar very well, and right now no one is exactly clear about why that is. We're back to trying to regulate it for him, and doing more tests.

a long night

Athan had an eventful night last night. His sugars/stats were steady all night, so none of the events were alarming in that regard. After his midnight feeding, we had to go downstairs for the abdominal ultrasound (checking his kidneys/bladder). Then at 3 a.m. his IV port in his foot got read and irritated, so we had to switch to the port in his head. When that started bugging him, he swung an arm up and knocked it out. So we had to take that one off as well (which includes pulling tape off of his hair - yuk). Then this morning about 6, he had to have another IV put in. Athan is kinda tough to get an IV started on, so it took a couple of tries. But one of the ladies from NICU came and worked her magic - so his IV is back in and not bugging him. He ate well and is resting now. He is going to be the toughest kid ever.

I'll update again after rounds.