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! :)

as per request

I keep updating on the kids, and I forget about Ryan and I.

Me - I'm doing well. We have had so much great help, I've only had one night of so-far-beyond-tired-I-can't-remember-being-asleep. My body is still doing well, and as a celebration of being able to move again, I played frisbee in the yard with Dru, Meredith, Ryan (and Morgan on his shoulders), Brian, and Emily. However, my triumphant return to mildly athletic endeavors was cut short by Dru's beautiful left-handed loft of the frisbee onto the roof of our 2-story building. We're hoping for the drought to break for 2 reasons now - maybe rain will bring Donut Man's frisbee back to us.

Ryan is scouting houses, and has done some quick and creative wood-work projects to help us fit 4 people into this place. Yesterday he built and mounted a special shelf for Athan's meds and a little stand for our printer. Today he'll finish a bookshelf and some more office organizing stuff.

Morgan charmed the staff of Tastebuds today at lunch with Aunt Loy and Mom. She had another restless night, so we're on a wierd schedule.

Athan is having a great day - maybe showing us he's almost ready to drop that middle-of-the-night feeding. horray! :)

happy 4th (late)

Athan had a little rough patch yesterday - he threw up yesterday morning. Confession: It was probably my fault. I get so nervous about keeping him fed (because both times we went to the ER he wouldn't eat) that I think I over-fed him. He was miserably stuffed. Once he threw up, it was obvious he felt better because of it. Mom is relaxing a bit and feeding him when he's actually hungry. Sigh...

Morgan had a great day yesterday! She is resting better (going to be on time, staying there through the night). She went to a parade with Brian, Emily, and Aunt Loy. Ryan and I were so glad she cou She saw a big white dog named Gabriel, and horses and fire trucks (as per her report). Later we had homemade ice cream (thanks to Dad), pizza for dinner, and a late trip out with Dad, Adam, and Dru to see fireworks. Whew! :) I'll get pics up soon...

sleepless in Strebeck-ville

I think the planets are misaligned or something. Neither one of our kiddos was much for sleep last night. They were both in pretty good moods, which is helpful if you must be up at 3 a.m. :)

Morgan didn't fall asleep until almost 11 last night, then woke up at about 1:30 a.m. for no reason that we could discern. At 4, I finally quit trying to make her stay in bed, and we went downstairs and ate cereal and watched a movie. She finally slept a little - from about 6 to 9 - but she's up-n-at-'em today.

Athan was a little fussy early into the night, and then he had hiccups that kept him awake.

When Athan graduates high school, I'm sleeping for a month... :)

i'm running out of titles! ;)

Morgan and I left the boys here this morning and went to church with Adam and Dru. It was good to worship corporately again.

Athan is a little gassy again today, and we've had a little trouble getting him to take his meds. But other things continue to improve: his swelling is down, his diaper rash is gone, and we finally got all the adhesive off of his scalp (from where they used tape to secure his IV).

I continue, without success, to search for adequate words to convey our gratitude. I can't. So for the 1000th time, I'll just say "Thank you," and hope you hear the weight of those words. We are swimming in the many ways you all continue to actively love us.