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.

booted

Well, they kicked us out of PICU, which is always good news. :) We have a room on the pediatric floor now, where we will be until we're discharged. They are switching him back to the dose of hydrocortisone he was on at home, and will watch closely over night to see how he does. His sugar is still good, and he is still eating well.

Ryan, Morgan, and Grammy are on their way here from Wilmore to visit Athan and go eat dinner. Morgan and Dad had quite a tearful goodbye this morning - it's hard for her to understand why we have to be gone so much.

(note to Sharon - YUMMY cookies! :) thanks!)

bittersweet reunions, new friends, and more good news

Good news for Athan! He had a good night last night. He ate well and kept his sugars up without exception. This morning at 3 they cut his IV glucose rate by half, and then at 6 we took him off entirely. His stats were all great, and all the labs that have come back so far have been good (which so far means no infection found, and no kidney dysfunction). There are still several labs pending that we will hear more about later - some testing for infection and a host of others that won't make sense to me until we talk to endocrinology again. Looks like we'll be here in the hospital for another couple of days waiting on lab results and adjusting meds, but we will be moved from PICU out the the pediatric floor today.

It has also been good to see our friends from NICU. Sort of. :) Of course we would rather not have these reasons to see them again, but the familiar faces are comforting even so. Many thanks to Becca, Lauren, Kim, Dr. Bada, and others who have come to check on us.

And we're making new friends here in PICU, too. Dr. Z has been so very kind in talking us through his orders for Athan and reporting results. Sherry, Salina, and Erin have been his nurses, and have done such a great job caring for our boy (and his mama!). Our esteem for the staff here at UK Children's keeps growing.

late-night post

Athan is doing well tonight - sugars are steadily up, and the rest of his vitals are great. Ryan headed back to Wilmore to be with Morgan some before he comes back up here tomorrow. I hope he gets some sleep. I'm staying here with Athan. He has his own room here in PICU, so I can sleep in here and not miss a chance for him to breastfeed.

Goodnight, friends and family, and thank you again for praying for us all.

afternoon procedures

Drawing blood went well under sedation and the spinal tap was done with no problems. Dr. Z said the bleeding subsided in the proper amount of time and things looked good. Amberly is going to feed him as soon as he is alert enough.

In the PICU for now-

One of the greatest challenges for the doctors & nurses who care for Athan is drawing blood. He “does not like to part with his blood” (as one doctor put it). After several attempts to use peripheral IV’s in order to get enough blood for lab work, they have decided to sedate him and let the attending doctor try an “artery stick." While he is sedated they will also do a spinal tap to double check the possibility of infection. They’re still trying to figure out why his blood sugars may have dropped so rapidly, and that’s why the tough little guy is having to undergo all these tests again. Amber is at the hospital with Athan, and I ran home to wilmore to get a few things for the night’s stay in the hospital and to spend a little time with Morgan (who has been with Grammy all day!) -- They should be attempting to get blood right now, so hopefully that is going well this time.

We’ll post more later as we hear reports. Thanks to Cindy for posting while we were in the ER this morning. We were there from about 5:45am until 10:30 when we went to a normal pediatric room in the children’s hospital. Since Athan’s blood sugar was fluctuating a little and because they couldn’t get enough blood for labs, they moved him to the PICU (Pediatric Intensive Care Unit) to monitor him more closely.

Thank you all...

Back to the hospital

Amber called this morning to say they'd taken Athan back to the ER because his blood sugar dropped again. This time they recognized the symptoms early, so no respiratory distress. They'll be admitting Athan to the pediatric floor (no NICU this time) to try to find out why his sugar dropped. He's currently had meds to regulate his blood sugar and is stable. Amber or Ryan will post again as soon as they know more details.

Praying with you all,
Cindy

Fathers Day

Athan got lots of loving today from Uncle Brent and Aunt Jenn, Uncle Jordan, Nana, and Papa. They headed out just a few hours ago to get back home. Grammy is here to help us for a few days while we figure out our new routine.

Today being the day to celebrate Dads, I just have to brag on the one that lives here. Ryan is such a good daddy. Already, he has been the Dad Athan needed for this rocky start he's had. And he is so good with Morgan, helping her have good tools to deal with the frustrations of transition from "only child" to "big sister."

And I write today to ask for your prayers for that transition for all of us. Morgan gets pretty stressed out when Mama has to take care of Baby Athan. It's normal, and Ryan and I are just asking for the wisdom to help her deal with the frustration in a good way. Frustrations or no, it is so good to have our girl home with us again! :)

Happy Fathers Day.

true

My friend Courtney sent me an e-mail yesterday. I hope she doesn't mind me posting this part here:

"Yea, though I [was birthed in] the Valley of the Shadow of Death, I will fear no evil, for Thou art with me." Psalm 23 (LCT--Loose Courtney Translation)


Athan had a good night last night. He is such a sweet boy - much more laid back than Morgan already. We are enjoying the freedom to get to know him more.

Papa Sid, Nana Lena, Grammy Tammy, Morgan, Uncle Brent, Aunt Jenn, and Uncle Jordan will be here this afternoon!

we like Dr. Coburn!

We had the appointment with our pediatrician this morning, and he is great. His office is right here in Wilmore, just down Main Street from where we live. He has been highly recommended by everyone from our midwife to our endocrinologist. He was very kind to us as he familiarized himself with Athan's journey so far. He said he will help us navigate the follow-up process and communication with Kentucky Clinic as well. As we left, he prayed for us and our boy.

Now we're back home. Ryan is about to go get groceries and fill a prescription for kiddo. Athan and Mama are going to nap! Tomorrow the fam is coming back and bringing Morgan to us. I'm ready to see her!

first night home

Athan had a good first night at home. He is eating and sleeping and pooping and making very sweet baby noises! He had a little trouble getting down some meds (phenobarb is just nasty), but he did get them all in.

Emotionally, I'm kinda drained. I've cried off and on for 2 days now. Tears of joy and gratitude. Tears of relief. Tears of sadness and hurt. Tears of fear and anxiety. Tears I can't explain, but that every mother will understand - the ones that come unbidden when you just look at your baby. Still, I'd rather cry than pretend I don't need to or try to hold them back - then I'd be in no condition to care for anyone...

So we're home. And many of you are wondering: What now? We still have quite a road ahead of us. Some of it we can't see yet, but here's a glimpse of life for the four of us for a while:

We will, of course, have all the normal "adjust to a new baby" things to do. Our Morgan comes home tomorrow, so we ask for your prayers for us/her as she learns to do life with baby brother here. Athan is eating every 2-3 hours around the clock, and had meds to take at 6,12,6, and 12. And pray that Ryan and I can take care of both our kiddos and each other well on very little sleep.

As far as Athan's future, we start a long process today. We will leave in an hour or so to go see his regular pediatrician. Monday we are back at the hospital to have an ultrasound to check his kidneys and see if there is cause for concern there. In 2 weeks we'll be at the clinic for follow-up with endocrinology and ophthalmology, 4 weeks with neonatology and physical therapy, 5 weeks to repeat an EEG, and 6 weeks with everyone (including cardiology, neurology, and genetics). Each follow-up appointment will begin to shed more light on the long-term picture. We will continue to post what we're finding out.

For now we are going to see Dr. Coburn and get things rolling there.

Thank you all for celebrating with us the milestone of coming home from NICU, and we covet your prayers as we walk out the next phase of this journey.

we're home!

last few moments in the NICU crib...

sound asleep at home (thanks auntie B for the blanket!)

Headed Home!

Amber just called me and said that they are headed home from the hospital today!

Once they are home and settled, she will log in and post an update with more details.

-- Uncle Josh

maybe the last night in the hospital?

Athan has had a good afternoon. Ryan has become an expert at drawing, crushing, mixing, and giving meds this afternoon, as well as how to put in a feeding tube if he should need one. We made a quick trip to Nicholasville and got his birth certificate info sent off. And we got to carry the car seat upstairs! :) Athan has to spend at least 30 minutes (time of our trip home) in his car seat while keeping his oxygen steady before we can take him home. Oh - and one last test that Dr. Irene ordered showed that we can cut his dosage of his thyroid med (synthroid, which Ryan has been spelling correctly all along).

And assuming we get to go home tomorrow, we had to say goodbye to Kim (see pics below). I cried. I'm just so very grateful that she was Athan's primary nurse. She took such good care of him AND of us during a very, very tough time. It can't be easy, but she makes it look like the most natural thing in the world. If there happens to be some reason we have to stay until Friday, the ONLY good news would be that Kim is back on Friday.

I have no idea when we'll be able to post tomorrow. We may be busy with the discharge process all day. At this point, no news is good news! :0)

after rounds

We caught rounds early today, so we have time to update before the noon care/feeding time:

He gained weight last night, and the dietitian (Theresa) was very happy! He is still nursing well, and eating from a bottle with increased coordination. Also, his super-ugly diaper rash has subsided to just a minor irritation that looks better with every diaper change.

Cardiology said most of the things they noticed on his first ECHO have cleared up already. There is one hole in the wall between his upper ventricles that may or may not close on its own. We will follow up with them in 4 weeks to monitor the progress there.

Neurology is good for us to go home on his current dosage, and follow up in 6 weeks.

His sugars have held steady on the maintenance dose of hydrocortisone, and Lauren (the PA following Athan) is going to talk with Dr. Irene (endocrinology) about his latest labs to make sure she is happy with his current dosage of centhroid as well.

Dr. Bada said tomorrow we'll make a decision about him going home! :)

Ryan is too slow!

OK, Ryan didn't get to it fast enough for me! :) So we talked about it, and I'm going to post the update for yesterday afternoon.

We finally spoke to the "big bad wolf" - Dr. Bay from Genetics. We had been warned by several people that it could be a difficult part of the process (especially emotionally), but it wasn't so bad. Dr. Bay has an obvious genuine desire to help parents and children. And with her cottage in Ohio, her community life there (on the edge of acres of natural wooded area), and her experience at St. Luke's Parish, Ryan and I think she is the Annie Dillard of the genetics field.

Dr. Bay asked us some questions, and told us about her methods and purpose in looking at Athan. Basically, her job is to find out whether Athan's complications and unique characteristics, taken together, point us to a syndrome of any kind. Right now, we still don't know. Dr. Bay and her team will continue to watch and test a few things, and see if any findings are conclusive and point toward a specific diagnosis. She was very positive about his progress so far (I believe her exact words were "He must be a fighter."), and she echoed the words we've heard from so many that his being alive at all is miraculous.

Last night was kinda tough on Mama because we didn't get to see our boy for several feedings. Athan was fine, but NICU had a very, very sick baby come in. The nursery was closed for the last feeding we usually make, and the we just had to get some sleep during the next two. It's the first time we had to miss so many feedings in a row. There was another baby brought in this morning who is also very sick, so we are kind of on stand-by as to when/how we can be with him. Ashely helped us just take him to another room to do his care/feeding this morning, and Kim said she would do the same for the next one. Once again, great nurses to the rescue! :)

We will have more info after rounds, so I'll post again around lunchtime.

like never before...

I love music. Almost any kind of music, including hymns. My friend Meredith sent me a precious reminder in the form of lyrics to a very familiar hymn, with a particular verse that I can sing with more conviction today than any other:

How sweet to hold a newborn baby
And feel the pride and joy he gives.
But sweeter still the calm assurance
This child can face uncertain days
Because He lives!

Because He lives, I can face tomorrow.
Because He lives, all fear is gone.
Because I know He holds the future
And life is worth the living just
Because He lives!

I'll let Ryan post the update for today.

Tuesday 12th morning rounds

Good morning friends and family. Ryan was just in for morning rounds with the d0ctors and our boy. Later today we will be at the lowest dose of hydrocortisone, so the weaning process will be done. Dr. Irene wants him here for 24 hours on that dose to make sure his blood glucose and blood pressure remain steady before we go home. There is mild concern over his weight loss, but Dr. Bada (NICU attending doc) seems confident that he will thrive and gain weight at home in time.

We will see the physical therapist again today (in a few minutes), and get some updated feedback from her. Later today we will also see the geneticist who has been looking at Athan for a few days. They repeated his ECHO yesterday so cardiology will have up-to-date info for our 6-week follow-up appointment.

We had a good time together this morning while Athan was nursing. He is such a sweet boy! (Ryan says I need to find more boy-ish adjectives - so... He's such a champ!) When he does that little newborn grin thing, his ears go up, too (like his Papaw Dennis). So very cute! :)
I mean "handsome."

Kay and Mokey came by to pray with us this morning. They faithfully delivered all the love and hugs you sent with them from Texas. Thanks to them and all of you who are 1000 miles away, and still very near.

Athan's favorite nurses

To say any of these ladies have taken care of Athan is a ridiculous understatement. They love their work, are good at what they do, and are the champions of the NICU.

Kim has been Athan's primary nurse since the very beginning.
She seems like an old family friend at this point-

Dana is a great nurse and (for the record) can wake up at 6:30a and make it to the hospital from Nicholasville for her 7:00a shift.

Ashley and Dawn are the marathon runners of the night shift. To be so on top of things at
3 a.m. is impressive.

Jennifer, along with her other talents, is famous for curing the worst diaper rash I've ever seen. (She hoped this wouldn't give her the nickname of "butt-cure lady.")

Sunday pictures (actually from Saturday)

A serious face, then a mellow face...

Sunday 10th a.m.

Another good night - no big changes. Still weaning his med, glucose and blood pressure still steady, and still nursing well. The only minor adjustment they want to make is to supplement his feedings a bit with breast milk from a bottle, just to see if he's still hungry. His weight is still dropping, which is normal for a big kiddo who had as much swelling as he did. They just want to be cautious and make sure he starts gaining soon.

J.D. came by again and brought us communion this morning. We had the food and drink that matters most. Thank you, again, J.D.

We're off to feed Mom and Dad other food now. :) More this evening.

a good day

Still watching and waiting. It is good to get to be with him every couple of hours - we're finally getting time to just get to know our Athan. Nursing well again today, and his blood sugar is still great. Unless the sugar drops tonight, we'll wean more of his med tomorrow.

Ryan and I had a relaxing dinner with friends (thanks guys!), and we're headed back to get some rest after this midnight feeding.

I'll update about our sweet boy again after rounds tomorrow.

good day today

Athan is doing well again today! :) Nursing great, diaper rash getting better. Our posts may be a little redundant now - it appears the next few days are just going to be "wait and watch." Everyone seems to be satisfied with his condition from now until follow-up in clinic in 6 weeks or so except for endocrinology. All that we lack is weaning him down a little each day off of his med for his adrenal insufficiency. Once we find that level and make sure he will tolerate it, we can go home. I AM ready to get him home, but right now the longer we're here the better because it means he is tolerating a lower dose of the medicine. I hope we stay here long enough to wean him right off of it, and we can go home on 2 meds instead of 3! Even if not, the lower the dose the better.

Ryan and I rested well last night, and Ryan is well enough to hold our Athan again. Ryan is doing such an amazing job of taking care of me and of Athan. It is sweet beyond words to be married to such a wondrful husband and father.

more soon...

another big day

Athan had another big day today. Attending docs from several specialties have come by - we are getting a sort-of "final once over" from everyone before we start making appointments with everyone to follow up in clinic. It looks like we will be back to see genetics, opthamology, and cardiology in a month or so. Those three are mostly precautions, as well as some more exploratory observation about why this has happened. Our follow-ups for actual treatment will include neurology and endocrinology. Neuro has the potential to be relatively short term, and endocrinology will be our most long-term treatment with Athan.

He nursed well again when he was alert and rested, which was all except the last couple of feedings. He still looks at us with those pretty blue eyes! :)

Ryan and I are doing alright. We had a great dinner at Ronald McDonald House, and got a good nap this evening. We're up here for the midnight care/feeding, then back to rest again. My body continues to heal well, as does Ryan's.

Our love to you all...

Morning rounds for Friday

Athan had a good night, and during the feeding we missed he was able to take more from a bottle than he ever has before (which is good news for meds later). This morning we got to unhook his monitors and go down to a special room for breastfeeding. It was a much more peaceful and quiet environment, and kiddo ate really well. Again, unless he is groggy from meds or activity, he nurses really well.

We just talked to the docs on morning rounds. They were very encouraged. His thyroid tests confirmed that his medicine is at the right dosage for him. Basically, the thing we lack is to keep weaning his hydrocortisone (adrenal gland med) until it is as low as he will tolerate (as low as he can take while maintaining good blood pressure and glucose level). Every other specialty that is following him will be checking once again and letting us know if/when we will need to follow up with them in clinic after he is released to go home.

Of course no one knows for sure, but unless there are unforeseen delays, we could be going home by the middle or end of next week.

ups and downs

Well, Athan had a pretty good afternoon, but also some rough patches. He really does nurse well when he is alert and rested, but life in NICU doesn't always allow for him to be alert and rested by each feeding. Doctor visits and tests and meds are part of it, but he is also working on the same things most babies are working on - diaper rash being a big issue at the moment, for example. We had to put the feeding tube back in just to make sure he is getting enough when he is not alert enough to nurse well. Also, we are trying to figure out the best way to get him his meds. When we get home, there won't be a tube to push them through, so he has to learn to take them mixed with breast milk in a bottle (which so far he just won't do - he's used to latching on to Mama instead of bottle), or some other way that we can do at home when we get there.

Ryan is on medicine and feeling better, but still not feeling 100% about spending time back with Athan. We're hoping some more rest and cough syrup will help tonight.

I'm also a little more sore and having a little bit more trouble just moving around. Everything still seems to be healing well, but my body is remembering I did give birth recently! Ryan has been so good to help me rest more today and take it easier. He also went out and bought me new shoes for walking around the hospital. Sounds silly, but it has made my day SO much better for my feet to not be burning and my ankles not be swollen.

Aside from physically, I've been searching for words to describe how I am doing. As we told some friends today, the time of panic has subsided. I don't feel overwhelmed like I did at first. When it comes to walking out all that this will mean for our family, the best word for how I feel is "resolute." We can do this. Athan can do this. Leaning heavily on our Jesus and His church, we can keep walking (or running or limping or crawling) this out. I know there will probably be times when I'm overwhelmed again, but we can face that, too. And the other word for how I feel is just "sad." I know Athan can do this, and I'm grateful that he is alive and has the opportunity to do it. But I am also immensely sad for my little boy because he has to do this. He's just a little boy.

As always, it was good to see some friends today, as well as hearing from many of you via calls and comments and e-mails. We remain thankful for the ways you all are loving us through all of this.

Meanwhile, back in New Mexico...

Here is a recent picture of Morgan; thought some of you might like to see it. Also, you can visit Josh's website to view some pictures he took of her in Kentucky.

Thursday Rounds

Amberly delegated the morning blog to me (since i won't be able to go in and see Athan until i've been on antibiotics 24 hours), and it turns out i have a little good news to report. The doctors are beginning to talk about "how Athan will go home." Neurology will most likely want him to go home on a small dose of phenobarb. This would be a precautionary measure and they will evaluate him again later it seems. Endocrinology folks are weaning the amount of cortisone he is getting trying to find a "maintenance dose." we hope this dose ends up being very low. Also, he will go home taking synthroid to supplement what his thyroid gland is not producing. So, for now we'll have to give him 3 medications regularly when he goes home. It is just so exciting to hear any talk at all about going home!

Amberly reports that the little guy is breastfeeding like a champ and that the feeding tube should come out for good today. Everyone seems to be encouraged by how well he is eating and improving. It's great to see the doctors' excitement with how well he's progressing too...it seems like this is happening more quickly than they initially expected. Though there will be challenges in the future, it is almost impossible to not be grateful for the good news of the present moment. Thank you all for praying and for journeying with us through this wonderful and difficult season.

I'll try and get another picture up after i visit Athan during the 6pm feeding-

love,
ryan

good night for Wed.

Athan's IV is out because all of his meds are switched to oral now. I'm glad the IV is gone, but the switch in meds has made him drowsy again. He hasn't been able to wake up enough to nurse this afternoon, which bummed me out a bit. The docs and nurses all insist he will adjust and be able to alert while still on the meds. Until then we're back to pumping and feeding breast milk through his feeding tube.

Otherwise, there weren't any big changes this afternoon. Kiddo is still good - his glucose, oxygen, and temp. all look good.

Ryan and I are resting for a bit, then we'll be here for his 12:00 feeding/care. Goodnight all..

one less tube/cord!

sorry so slow!

Faithful family and friends: I'm sorry we're slow updating today. We had a super busy morning, but almost none of it had to do with Athan. He is good (details to follow). Mom and Dad are a little ragged today. Ryan's sore throat became all-out sick today. He called a doc, and has spent the morning getting a prescription called in near here and is out picking it up right now. Pray for him - he can't go in to see Athan until his meds kick in (probably 24 or 48 hours). So all the taking care of Athan is on Mom (and great nurses and docs!) for a while. I'm also short on sleep - we couldn't find the breast pumps at Ronald McDonald House last night, so I had to come back up to the hospital at about 5 this morning. The upside - I only missed one feeding, so Athan is getting more practice nursing!

About Athan: He had a good night last night again, and continues today to improve each time I feed him. Also, his IV port got to come out today! :) That will help us have more range of motion when he's nursing, in addition to not hurting him any more.

They didn't change much this morning on rounds. The biggest updates will still come from neurology and endocrinology. Neuro seems to be in a "wait-and-see" mode. They want to keep him on the anti-seizure med until they know more about his EEG, so probably nothing will change until they can repeat and evaluate the test again. They keep saying the abnormalities are not actual seizure activity, but they don't know what it is, either.

The endo doc (Dr. Irene) came by this a.m. She has seen the MRI results that showed his pituitary gland, and it basically confirmed her course of action with Athan. She's having them wean the med for his adrenal gland to see how low of a does he'll need. Tests are ordered for tomorrow to see how his thyroid is responding to the medication he's on. She also is going to order some more tests to check levels of 2 other hormones controlled by the pituitary. So here also we are just doing more tests and waiting on results.

And because some of you have asked - his glandular insufficiencies are rooted in his genetics. Basically, that just means it was not some event that caused all of this, but rather he was born with things that caused the subsequent events. I hope that makes sense...

Ok, I'm off to change a diaper and feed our beautiful boy.

good eatin! :)

Athan is nursing so well! At his 9 p.m. feeding he ate so well we didn't have to do anything supplemental through his tube - he got a full feeding right from Mama! He is also more alert and staying awake to eat. He opens his eyes at us more (they're blue as the sky right now), and seems less fussy to me.

Also, our favorite nurse was here today. Her name is Kim, and we're trying to get her to let us take a picture to post here. It is amazing to watch someone who is just really, really good at their job. It makes for a much less stressful day for us when she is able to do such a good job taking care of Athan AND taking care of us. She was such a reassuring voice, and helpful as we are trying to process all of the information that is coming at us. There are several people here - nurses and doctors and clerks - who have been so great to help us navigate this whole deal as well as we can and have taken such good care of our boy. I think I'm just grateful...

We got to go to dinner with our Kentucky Family tonight (we missed you, Chad). It was so good to be with them all again. They all have done so much - taking care of our Morgan, running errands, leaving notes of encouragement, and praying like crazy. Our hearts are very much at home with you all. Thank you.

And Lindsey has been with us all day today (except for the time when she stayed to do our laundry - wow). She'll fly back to Amarillo tomorrow morning.

Ryan and I will be here for Athan's 12 a.m. feeding, then off to get some sleep. Ryan's throat has bothered him some today, and he's got a headache today. Thanks for the prayers.

Tuesday afternoon

Neurology doc came by about 11 this morning to talk to us about MRI and EEG. He said the EEG continues to show enough abnormality to keep him on the anti-seizure med. It is a very low dose and mostly precautionary. The activity he sees is not exactly like seizures, but enough to warrant the low dose of the medication. Our understanding is that it is a pretty benign med, with the greatest side effect being mild lethargy.

The MRI didn't show anything concerning as far as neurology is concerned. Endocrinology will be talking to us later about his pituitary gland. It appears to be somewhat underdeveloped and displaced, but we will have to wait to hear from Dr. Irene about what that might mean for Athan.

A physical therapist also came by and talked to us a bit about exercises we can do to make sure his physical development goes well, and pointed us to some other resources to help with that. Basically, she used come clinical language to tell us that it's good to play with your baby! :) There isn't any indicator that Athan will actually need any formal physical therapy - joints and muscles seem to be doing pretty well. We'll know more as he is increasingly alert and active, as well as watching him as the infant edema (swelling) subsides.

Also, the lactation consultant came by during last feeding and helped us with nursing a bit. He did nurse pretty well this time, so that we only had to supplement with half the usual amount. Again, I think once he is more alert, we'll be good.

good morning (Tues)

Athan had another pretty good night. His stats stayed up, his glucose is still good, and they've upped his amount of milk per feeding again. They thought there might have been some unusual activity in his movement and facial expression sometime between 3 and 3:30 this morning, so they will probably have another neuro. consult just to make sure it wasn't a significant episode.

We've tried to nurse, but he just still seems to sedated to latch on. He certainly shows interest, but I think he just realizes Mom is holding him, relaxes, and goes to sleep. So we push his feeding through his tube while I hold him and let him rest. I really think once he is alert and more rested, he'll nurse with no problem.

Ryan and I rested pretty well last night. Papa Sid, Nana Lena, Grammy Tammy, Morgan, and Josh McCrary just left here to fly back west. It was tough to see them leave, and tougher still to tell any one of them how thankful we are and how much we love them. And thanks to the many of you who have helped with so much so that they could all be here with us for so long. Tim, Master's Staff, Brent, and more - thanks for carrying so much for them and for us.

Ryan's bringing me some food, and we're waiting for morning rounds. After rounds and his next feeding, we'll try to post an update before we grab lunch.

MRI

We had a little hiccup with the timing, but Athan just came back upstairs from having his MRI. We of course have no idea what the results are yet, but at least the test is done. Kiddo did well through the whole thing - none of his stats dropped. They did have to sedate him twice to make sure he was still enough to get good results. When neurology and endocrinology have seen the results and get them to us, we'll post them asap!

thanks again for praying, yall!

a little rest in the waiting room

my wife the trooper...

busy, busy day

Athan has had quite a day! I hope I remember enough to get it summarized here.

Morning rounds ran a little late, but they got to us about noon. The attending was very encouraging, and increased the rate at which he'll be weaned from his glucose. If it continues to go well, he will be completely off by tonight. He'll switch to all oral meds also, so his IV will be able to come out.

They repeated his EEG this morning, so we're just waiting to hear if neurology sees that it is normalizing or not.

Also, the MRI could happen any minute. Ryan and I will go down with him to sign consent, and we'll be closer to knowing what MRIs can tell.

He's had some trouble with eating from the bottle - he hadn't quite figured out the coordination of breathing and eating, and it's tough to relearn to latch on. However, the good news is that we've been able to try nursing again! :) The first time (at 11 a.m.), they had just repeated his EEG and he was just too tired. But the 2 p.m. feeding he latched on and nursed really well from one side! It was sweet beyond words for Mama to get to feed him again. They still have to push some milk through a feeding tube just to make sure they can measure his intake for a while longer. Soon, though, we'll be able to just nurse.

Josh and Lindsey McCrary are here, and are hanging out with our Morgan for now. We hope to get all the grandparents in to see Athan again tonight and once in the morning before they have to fly out. Thanks to you all for all your help!

We'll try to post again late tonight and let you all know about the MRI.

logistics

We will update on Athan after morning rounds. All we know right now is that he had a good night and went up again on the amount of milk he gets at each feeding.

For now, just wanted to cover some logistics.

Papa Sid, Nana Lena, and Grammy Tammy are planning to fly out tomorrow back to NM. They are going to take Morgan home with them for a while. So for those of you in eastern NM and west TX - love our kiddo for us for a while, k? I know there are many of you who do and will, and I am so very grateful to have so many who will help ease the trauma of this whole thing for our sweet girl. If you wanna see/help keep Morgan while she's there, I'm sure Nana and Grammy would tell you how/when.

For those of you here in Kentucky with us, thank you so much for all of our offers to help. With our folks gone, we might need some help with errands and such for now. And for all of you asking about bringing food, we will be oh so glad to let you bring meals once Athan is back home - be it days, weeks, or months, it will be nice to have a few meals we don't have to fix as we adjust to life back home with our new fam.

and just because some of you have asked - we're pronouncing his name like "Nathan" without the N.

the attending and residents should be by on rounds any minute, so after we get and udate (and probably after we then help with care/feeding), we'll try to get and update on our boy posted.

more good news

After our sweet time with JD this morning, we came back upstairs to speak to the docs from neurology. Good news! They were very pleased with his increased activity and responsiveness. They think the abnormalities on his EEG resulted from his low glucose levels. As his blood sugar remains stable, they fully anticipate his EEG to reflect that and return to normal. They have ordered an MRI, but they also anticipate that will be clean (as far as neurological concerns go). Assuming all of that is confirmed, they'll begin taking him off of the anti-seizure med he has been on as a precaution. Yeah! :)

The next big step is the MRI. They'll just take him down whenever the MRI people call up and say there's an opening. On top of confirming the good forecast from neurology, it will give the specialists in endocrinology a better look at his pituitary gland.

Meanwhile, Ryan and I do our best to make it in there every 3 hours - we get to help with his care and feedings, which takes about an hour. Between them, we squeeze in meals, rest, errands, and (of course) posting updates! :)

Courtyard Communion

Hey everybody,

Amberly & I were hoping we could worship with the Body of Christ this morning, but with feedings and morning rounds we weren't going to be able to leave for more than a few minutes. I got a message from J.D. Walt (our Dean of the Chapel at the seminary & a good friend) while the doctors were rounding asking if he could bring us communion this morning. We rejoiced at the opportunity.

He, Josh, Amberly, & I went out into the hospital courtyard to share in the Lord's supper and J.D. reminded us that it was Trinity Sunday. How significant that this is Athan's first Sunday! Athan was named after St. Athanasius (thanks Amberly), who served the Church as a defender of the Trinity in the 4th century. It is a beautiful thing to remember the means of grace through bread and wine, friendships, and our baby boy. We are living and breathing by this grace right now, and to think all of you are with us in prayer is overwhelming.

We will be updating again this afternoon with a few medical notes, but for now we wanted to share again how grateful we are to be children of God along with Athan and all of you.

Be Thou our vision, O Lord of our hearts;
not be all else to us, save that Thou art.
Thou our best thought by day or by night,
waking or sleeping, Thy presence our light...

Sunday morning rounds

Athan had a good night again. There was just a little trouble moving his IV last night, but it was resolved before we even went home and is fine now. He's eating, pooping, and peeing well. All they changed on rounds this moring was to up the amount of milk he gets at each feeding, and tweak the rate at which he is being weaned from the glucose in his IV. They want to ultimately get him off of the glucose altogether, but they're going slow so his blood sugar doesn't go haywire in the process.

Ryan and I are about to go back in to help with his diaper and clean clothes.

Neurology will come by soon on rounds, so we hope to catch them and find out more about his upcoming MRI and they're take on his progress.

Also, J.D. (Dean of Chapel at Asbury) is bringing us communion later. We will be worshiping with you as we meet with Him this morning.

FYI

now you can post comments w/out a gmail account.

saturday night

We've had a good afternoon/evening. Athan continues to do well taking a bottle, and his blood sugar is holding steady. His urine output is increasing, which is good news as with any baby. He was more reactive this evening, so we had lots of fun sighs and wiggles to see while we were holding him.

Ryan and I are feeling the weight of your prayers as well. We are resting well when we're able to rest. Thanks for holding us up right along with our Athan.

Also, since many of you have asked - Morgan is great. Grammy Tammy, Nana Lena, and Papa Sid have done an amazing job of taking care of our girl so we can be with our boy right now. Ryan and I have seen her almost every day for a while, and then she gets to sleep in her own bed and stay in a familiar environment most of the time.

We wish we had more time to respond to your comments one by one! Thanks to you all for showing us your continued love and support.

good afternoon!

as you can see, we got to hold him! :) The lines came out of his tummy just fine, and when we got back from lunch he was clothed, swaddled, and ready to be held! Ryan and I both got to hold him for a while. I also got to help change his diaper and clothes. He pooped and peed all over my hands, and I was so excited! Parents are weird that way.

He also took a bottle, so the feeding tube came out. He will have to be sedated for the MRI and will have to use the tube again while he is out. But otherwise he gets bottles, and when his fluids are regulated and blood sugar is steady, we can try nursing again.

Now we can be here for every care/feeding to help with bottles, diapers, and clothes.

Another test result came back that confirmed that there is no infection, and they turned down the rate of the medicine for his adrenal gland.

a few pictures!

Saturday morning rounds

Dr. Bada is our attending, and we got to be in there during rounds to hear all the docs summarizing where we are. I'll do my best to make it clear here.

They confirmed that there is no further need for antibiotics, and seemed very pleased with his blood pressure as well. His oxygen level shows he is doing really well breathing on his own. There were some raspy sounds in his breathing, but nothing terribly concerning.

He is still not alert enough to take a bottle, but he has continued getting breast milk via the feeding tube in his mouth. He is tolerating it very well, so they are going to increase the volume and feed him more each time. And the BEST news this morning - the lines in his belly button are coming out! As long as there is no problem with the procedure or subsequent bleeding, we will be on an countdown of a few hours until we can hold him! :)

Neurology also visited this morning. They are pleased with his progress, keeping him on minimal levels of anti-seizure meds as a precaution, and have ordered an MRI now that he is more stable.

Endocrinology has him on 2 meds - one for his adrenal gland and one for thyroid. Both have been "loaded" (started with a big dose), and are now at maintenance levels of both. The attending doc said they will talk to them again and find out if we can start decreasing his levels of those drugs also and monitor his progress.

Long-term implications are still impossible to narrow. Everthing is still a possibility.

wrap-up for today

Athan has been fed twice via a feeding tube, and seems to be tolerating it well. If that continues, the lines through his belly button are closer to coming out. He is still too sedated to take a bottle. His blood pressure is still steady, and his breathing is steady, too.

Doctors checked his eyes today, and his optic nerve is small. We don't know what that means right now, but will hopefully hear more about it soon.

The second EEG looked much like the first, but we still don't have any good explanation about what it means. Neurology still wants an MRI, which may be able to happen soon now that he is more stable.

We will update again when we can tomorrow. Love to you all and goodnight.

update

Athan had continued to do well breathing on his own today. His heart is also doing well – his blood pressure is holding steady without the aid of any medications. The doctors are confident that there is no infection, so he is also off of all of the antibiotics. The next step is to see if he will tolerate breast milk via a bottle or a feeding tube. If he does, the feeding line through his belly button can come out. When that line is out and we're sure the belly button is not going to bleed, we can hold him!

We will give updates on his glandular issues soon, as well as how his feeding is progressing. We'll also post a pic soon without the breathing tube!

while we're waiting to see him again

We see your prayers all over our boy, and we feel them swirling around and in Mom and Dad as well. Thank you all for holding us up.

You can imagine all the words that have described us these past few days: afraid, exhausted, overwhelmed, sad, sick, mad, lost, hurting. But because of the Holy Spirit with us and the Body of Christ around us, those words are not the final say. The hard stuff does not magically disappear, but it all rests on a bedrock of something stronger.

Ryan and I will continue to need your prayers. The adrenaline is wearing off, the fatigue is setting in, and we are feeling ourselves sort of settling in for the long days and weeks ahead. We are continually torn - wanting to spend every possible second with our boy, but also knowing we won't be able to take care of him for long if we don't take care of ourselves. We have several people here who are helping us do that, and we are so thankful. We just want to make good decisions for us so we can make good decisions for our kiddo.

Our gratitude is bigger than we can say.

progress!

Athan is breathing on his own now! :0)

thanks for praying. more soon.

The Beginning

Athan just a few hours old...

Athan Ryan Strebeck was born on May 29 at 3:34 p.m. at home. He was 21.5 inches long, and weighed in at 9 lb. 5 oz. Our big boy was finally here! :) Athan did wonderfully for the first few hours. He was nursing well and filling diapers just like a newborn should.

At 2 a.m., however, he would not latch on when I tried to nurse him. From that point his condition seemed to get gradually worse. We were planning a trip to a pediatrician at 9 for a check-up, but by about 7 it was apparent that he would need medical attention before our appointment. His breathing became increasingly labored, and almost stopped altogether. My mom was working with him to try to stimulate him and keep him alert and trying to breathe. His hands and feet began to turn blue. Meanwhile, Ryan was calling 911, and by the time the ambulance arrived, he was blue all over.

Athan was transported to UK hospital in Lexington, which has a Level 3 (the best) Neonatal Intensive Care Unit. In the ER, his blood sugar was found to be very VERY low (normal for infants is 40-60, and Athan's was 4). The team was able to get him stable in the ER, and he was transported up to NICU.

The next couple of days for Athan meant a battery of tests and meds. It was like drinking from a fire hose every time we talked to the doctors. They were very clear and explained to us as best they could what they were doing and why, but it was so overwhelming. He has been seen by specialists from several areas. From arrival on Wednesday morning until Thursday afternoon, it was all “test and wait.”

[As a precaution, I was also transported. Primarily, it was the best way to keep me near Athan so I could nurse him if he was able. As far as my health, everything is fine. My body is doing all of the things it is supposed to do to heal postpartum. I spent one night admitted as a patient, and we were able to spend the first night just one floor below NICU and near Athan.]

Thursday afternoon, some things began to be more clear. It appears that the heart of the problem is some kind of glandular insufficiency. Athan's adrenal glands were not producing the hormones they are supposed to, and the drop in blood sugar, respiratory distress, low blood pressure, and abnormal EEG readings seem to be a chain of results of the insufficient hormones. It also seems that his thyroid gland may not be producing adequate hormones, and they are continuing to look at his pituitary gland also. If this is indeed a glandular/metabolic issue, it is related to genetics. Tests may give us more information about this, but some of those results will not be in for 2 weeks.

This type of problem is not detectable before birth, nor readily apparent afterward. It is, however, very treatable. Athan is currently on a medication to supplement the adrenal gland, and many of the other things seems to be stabilizing as a result. He is completely off of one of the blood pressure meds he was on, and they are weaning the other also. He is still breathing with the help of a machine, but he increasingly does more of the work himself. His blood sugar is normal, and they just repeated the EEG to check again for abnormalities. That's what we know this morning.

Athan this morning...