4 lbs...

...and growing like a weed!
today was the first time they weighed him before and after nursing-- and it looks like he may have actually gotten some nutrition out of the deal! An entire 1/2 ounce! woo hoo!
we are so thankful that he is taking to the breastfeeding so quickly, and pray that it only continues to be successful! He is up to 36mL by tube every 3 hrs now, so he is still getting the vast majority of his milk that way... as feeding by mouth is very tiring for him. I keep reminding myself that he's technically not even supposed to be born for another 6 weeks, and anything we ask him to 'do' is going to be a chore at this point. But I am so proud of him. It is such a sweet moment every time he latches on, even if it's only for a few seconds.
Today I fell asleep with him, skin-to-skin, his head on my chest-- something I never even did with Christian. I must have been really tired, seeing as I was not only sitting up in a rocking chair, but there were people talking, and machines beeping all around us! It was awesome. I am cherishing these moments where it is just him and me. As much as we look forward to his homecoming, there is something about being able to fully focus on him and then go home and fully focus on my other little one that feels like a privilege. Having them both under the same roof, demanding my attention simultaneously, will be a different kind of privilege ;).

34 weeks

I can't believe it's only been 1 week since last sunday! It feels like we've been at Paoli a lot longer than that-- Kyren is doing so well and has come so far in such a short amount of time. He is back to 9hrs on the cannula, and hopefully will be rid of the C-PAP very soon, for good! He's nursed a few more times, learning how to suck and swallow a little more each day, and even took a bottle today on his first try rather successfully! Paoli is such a different place from Lankenau. Small, intimate, only a couple of other babies-- all in one room together. We are quickly getting to know our new nurses, and there are a lot fewer of them, so I have a feeling we will be getting to know them pretty well! It's exciting to see Kyren's cheeks everyday, getting chubbier and chubbier! By morning, he will officially have reached 4 lbs!

On the downside, Dave has finally fallen prey to a lingering sore throat/cold, and hasn't been to see the little guy since tuesday! Seems like forever :(.

Praying that the rest of us don't catch it. So far, so good!

We've been housesitting all weekend for my parents and are looking forward to getting home and hopefully more rested, as the dog (and that host of strange noises in the night) has kept us (well, me) up a lot.

Still, I lie here with so much gratitude in my heart, for all that we've been blessed with! I can't get over how amazing my boys are to me, and how much I love all 3 of them!

It's a wonderful season for thankfulness!

Our Thanksgiving Miracle

Ok, so maybe it's not a true Miracle, but it sure is a fabulous blessing this Thanksgiving Eve--
This afternoon one of the NICU doctors called to let us know that "the stars had aligned" for Kyren to be able to transfer to Paoli Hospital! We'd inquired about the possibility a couple of times over the past few days, and were told it was not something that typically could happen unless Lankenau's NICU was full, and Paoli's NICU was sparse (Lankenau has 20 beds, Paoli has 6). Paoli only takes babies 32 weeks and above. Kyren is 33, so he now qualifies. But it just so happened that between yesterday and today, Lankenau got full and Paoli had 2 babies discharged, giving them enough room for a more "long term" patient. And because Lankenau technically needs the space, it was considered a "necessary" transfer, meaning we don't have to pay for the ambulance ride, or anything! What a gift! As if this week wasn't already blessed enough! That is the lavish love of God!!
So now, instead of travelling 45-55 minutes each day, we only have to go 20. And my parents live 5 minutes from Paoli, so dropping Christian off there is not as much out of the way! AND we just so happen to be house sitting for them this weekend, so we'll be able to run back and forth as Kyren gets adjusted (ok, as we get adjusted).
And all of this as he is getting ready to learn to breastfeed. We are still in the 'getting familiar' stage (called non-nutritive sucking), but soon enough we will be practicing that sucking/swallowing/breathing skill, and it will be helpful if i can be there 2x a day to nurse! Not to mention the fact that Dave will be going back to work in a couple of weeks, and I will be able to leave Christian with my Mom while i go to the hospital, and can just run back there for lunch, etc... not leaving him for long periods of time!
While we're a little sentimental about leaving the nursing staff at Lankenau, we are more than happy to be closer to home! And we can always go back and visit.
The icing on the cake tonight (or maybe the gravy on the turkey?) was that Maureen was the nurse who got to do the transfer-- so we got to see her one last time and thank her for all she did to make us feel loved and cared for during this season of our lives. It was a bittersweet goodbye. And just one more little reminder that God knows all of the details and loves to bless His children with every good and perfect gift (James 1:17).
Can't wait to start this new chapter-- and to celebrate God's many blessings on our family tomorrow!! THANKSGIVING INDEED :)

suckcess!!!!!!!!

Once again, we were blown away by yet another milestone tonight! Since he's been enjoying his pacifier so much, and beginning to suck his fingers and root around, the nurses have been talking about introducing breastfeeding in the coming weeks-- so I didn't expect it to happen today!
When we arrived at the hospital tonight, the nurse said I could put Kyren to the breast and let him just become familiar with it. As I held him close to me, she said not to expect much-- he may just nuzzle. But no sooner had she finished her sentence, when the child latched on and began sucking like a champ! It was the most amazing moment-- bringing tears of joy to my eyes-- after having spent the past 2 months hooked up to a machine meant to simulate the very action that my baby was growing strong enough to perform! It was a precious gift from God, and I could sense Him smiling too as He answered my prayers!

The nurse kept marveling at his immediate success, and even exclaimed to the other nurses at how well he was doing!
he was only able to nurse for a few minutes before he began to get tired. It's hard for these little guys to learn how to breathe, suck, and swallow all at once-- especially since he's still getting the hang of those things individually. But the nurse's excitement alone was enough to tell me that this was an incredible first run!

I am so encouraged!!!! And I can't wait till tomorrow!

leap of faith

We took a little leap of faith and decided to allow Kyren to be vaccinated. I've blogged about this controversial subject in the past, when trying to decide what to do for Christian. We felt very uneasy getting all of his vaccines at once, and went back and forth a million times on whether to get any of them at all. I really don't like the idea of them all being given at once, with all kinds of mysterious ingredients and side effects. I don't worry so much about the Autism thing anymore, but there is something about the whole issue that still doesn't sit well with me.

But when you've got a preemie with so many hurdles to conquer from the outset, you kind of have to weigh your cons against your other cons. His fragile immune system would simply not be able to handle it if he were to contract something like Meningitis or Whooping Cough. And the fact that he's doing so well right now; gaining weight, breathing better day by day, and making his way to 40 weeks with tenacity; make it easier for us to lean toward vaccinating. It would simply be horrendous were he to make it through this season with flying colors, only to contract something preventable that could kill him.

With Christian, we prayed for health and had faith to delay the shots. With Kyren, we're praying for safety as we move forward in faith FOR the shots. I like that we have the freedom in this country to choose what we feel is best for our children. I especially like that what is best for each child is often discovered on an individual basis. And above all of these things, I like that God is in control of their lives, knows all things, and ultimately guides our choices and uses the outcome for good.

Praying over the next couple of days, as Kyren receives his shots, that he would have little or no side effects, and that his little body would be strengthened, not weakened in any way.

He is up to 9 hour sprints now on the cannula, and down to 3hrs. on the C-PAP!!!! He is no longer in his isolette-- he's graduated to a 'crib' (praying that his body temp will stay regulated)-- And this morning he is half way to 4 lbs! As well as 32 mL per feeding. We may be able to introduce milk by mouth this week!! (praying for that too!!!)

Let the Thanks-Giving begin!!

daddy wanna-be

Dave and Christian have really been able to bond these past 2 months-- especially since they share a love for art...
well, Dave is artistic, and Christian likes to demand that we draw things on the "Doodle Pro" (Magna Doodle)... and well, Daddy just draws better than Mommy. His favorites include loaders, mumbas, big rigs, forklifts and backhoes. And most recently, hands. This morning, they teamed up, and drew this together:



Then, C proceeded to run around the house like this:

unable to see where he was going
(i think he could still see the floor)

and everytime he removed the hat to make sure we were watching this spectacle, he'd look at us and say, "Daddy...Mumba Ride!" Which I guess is now the name of the hat. It, apparently, is the hat Daddy wears when they ride on the mower together... only, he hasn't ridden on the mower with Daddy for several months... he just has a really good memory.
:)

Happy 2 Month Birthday!!

Wow-- 2 whole months old!
I just keep marveling at how, if I were to have given birth to him today, we would still have a lot of concerns about his premature arrival. It's just amazing that he has been outside of the safety of the womb for 2 entire months, and should technically be in there for about 2 more........ and yet is doing so well!
There is talk of introducing him to milk by mouth next week! We are continuing to ask for prayer that this would go even better than expected-- and that the practice sucking that he's been doing on his pacifier would pay off! he really likes that thing (just like his brother), and that strong suck is a REALLY good sign that he's getting ready to eat for real!
He is also beginning to wear clothes to see whether or not his body temp can regulate on its own. Up until now the isolette has been warming him up so his body doesn't have to devote any extra calories to keeping warm. But now that he's growing and getting stronger, they are turning down the temp inside his isolette, and letting his body begin to acclimate. The doc told us the other day that the ability to regulate body temp is a major step to being ready to go home. So.... praying that he would continue to gain weight and maintain temp at the same time...
As you can see-- we are 2 proud and "expectant" parents!



Our first photo of the three of us!

Daddy gets to hold for the first time w/the cannula

sportin the muscle shirt... and those huge biceps!

a little primping for the camera

Stylin' Video

sprinting

I called Kyren's nurse this morning around 11am to see if they were in need of any more milk for this week before I made the 40 minute drive to the hospital. Before I could ask, she informed me that K was doing really well today and that she was trying him on the nasal cannula for a few hours to see how he did! ...And that he was doing GREAT!!! We were told that the C-PAP would probably be on for about a month. That was about 2 weeks ago! One nurse had told us it would feel like a long time, and we were prepared for a few more weeks of it. So the news that he was already ready to begin what they call "Sprinting" (where he has the cannula for a 3 hr. stretch and then goes back on the C-PAP for awhile before trying it again) came as a total shock. THEN she informed me that if I could get there before 1pm, I could hold him and see his beautiful face before he had to go back on the C-PAP for his feed. She'd given him a little bath and his hair was all fuzzy and clean, and his coloring was rosy and sweet. I could feel joy eminating from my face as i held him like a baby for the first time ever (i've only had him against my chest), and gazed at his perfect little features. He felt like a baby too-- all 3 lbs. 3.3 oz.! What a miracle! He was also wearing his first outfit ever-- probably the smallest they come, but still gigantic on him. I loved every second, and had my friend Jenn there to do a little photo shoot-- what more could i have asked for?!

these two pics were taken a couple nights ago, for perspective

his first little outfit, room to grow...

nuzzling his blanket

(something he's always tried to do but couldn't until now!)

3 lbs and officially normal!

We eagerly checked our daily email this morning to see if Kyren had gained that ounce, pushing him over the 3 lb. mark. it was a wonderful moment to see that number pop up-- 3 lbs 0.5 oz! Woo hoo! It took him 6 weeks to reach 2 lbs, and only 2 weeks to reach 3! He's up to 28-30 mL per feeding now, and is obviously loving every drop. Thus far he hasn't had any digestion issues, which is just remarkable to me! Thank you, Lord!
When we went to visit him last night he opened his eyes wider than we'd ever seen-- they have also grown, and were big and dark and alert. It was so sweet when the nurse took his mask off to change it. He looked around and seemingly right at us. Didn't get too great a picture, but it will be etched on our minds for a long time. . . the first real glimpse of our baby's face, awake and alert. He's changed so much, we hardly recognized him. The nurse herself said she had to double-check his i.d. on the side of the isolette to make sure it was he when she signed in that night. She hadn't had him on her rotation in a few weeks, and she didn't recognize him either. A pound is a lot when you're that little!
Tonight we asked right away if the brain scan had been completed. She said yes, and that it was "unofficially" normal... meaning: the guy who came to do the scan saw nothing abnormal about it, but the doctors hadn't looked at it to confirm whether or not there was any abnormality, yet. Right before we left i went back to ask when we might know something more "official". She picked up the phone and called the Doc, who was down the hall in his office (?). he came right out and checked his file, looked up at us and said, "Oh yeah, it's all good. Totally normal." Very matter-of-factly. but apparently very official!
WOO HOO!!!! We'll take matter-of-factly!!
glad i asked!
This news is such a relief, and very encouraging as we think about the future--
It makes this half way point (we prob. have a good 8 weeks left to go in the NICU) seem a lot easier. Not that there couldn't still be complications, but it seems that our little guy is doing fabulously ...
and we are OFFICIALLY thankful!

8 weeks

8 weeks ago tonight, we couldn't have imagined we'd be where we are right now. I wasn't even aware that I'd be giving birth at 8pm that Sunday night. As I sit here at 8pm tonight, I feel like it's been one gigantic blurry whirlwind. I'm 'supposed' to be 32 weeks pregnant-- feeling fat and uncomfortable. Sometimes I try to imagine what that would be like. It seems like so long ago that I had that bump under my shirt. Now I have a Snoogle. It's not the same... and sometimes it makes me sad. My baby is 'supposed' to be swimming around inside my womb, carefree and blissfully unaware of any world beyond it.
I saw a newborn at church today, so tiny and sweet. I marveled at his littleness, and then suddenly remembered that i have one of those that's even tinier. it's still just so hard to believe sometimes. And even harder to imagine that I'll ever be taking him anywhere!
I know that it's okay to feel all of these things-- and still have an awareness that what was supposed to happen is what DID happen... and that there is purpose in all of it. I love that God understands our frailty and inability to make sense of all He does. I love that He created us with finite minds but gave us the ability to have faith in the infinite. And to be thankful for the little things. If Kyren were still in the womb, I never would have thought to get so excited about his gaining an ounce a day... or growing lung tissue. We wouldn't be excitedly waiting for him to cross over that 3 lb mark this week... or marveling at his developing cheeks! No, I'd probably just be complaining that I still had another 8 weeks of feeling fat and uncomfortable yet to go.

Thank you, Lord, for the difference 8 weeks can make...

basket of thanks

When our small group at church heard about all of the devoted care that Kyren was getting from his nurses and doctors round the clock, they decided to express thanksgiving on our behalf by gathering together goodies and placing them in a gift basket for us to bring to the NICU. Within minutes of the basket's delivery, two of the nurses had already snagged the body scrub and note paper-- before it made its way to the 'break room'! And the doctor had a lollipop in his mouth! They were like, "thanks so much for the basket!" And we were like, "thanks so much for keeping our son alive..." ? i mean, what do you say to that??
There really is no gift that could thank them enough-- we are just so grateful to God for the gift of modern medicine... and the gift of modern insurance! We feel so provided for in all of this-- from the 24hr care and expertise of the medical community... right down to the gift basket of thanks from our church community! What a wonderful Thanksgiving this will be...

a growing boy

This morning our big boy weighed in at 2 lbs. 9.4 oz.
Tonight we both got to hold him. AND we got to see him for a few seconds without his mask.
It was so precious to see his entire face!
Holding him against my chest, I imagined what it will be like to have him home with us someday. To hold him skin-to-skin without any tubes or wires. He's starting to feel real. Literally. He's actually heavy enough to feel against my skin...
We are enjoying these "simpler" days where he is growing and healthy... yet still sleepy enough to not express discomfort or cry. Those days will be coming soon, and it will most likely become much more difficult to leave him.
Next week he has one more brain scan-- to be sure that there is no Cerebral Palsy or any other damage. God has been so good to all of us thus far-- it's amazing to see how far this baby's come in just 7 weeks of life outside the womb. We know that each day is a gift, and while we hope and pray that this scan is free and clear of any abnormality, we are rejoicing in God's mercy on Kyren David TODAY.



a sweet, maskless moment of peace

face to face with daddy

so much easier to take him in and out of his bed now that he's off the vent

C-PAP smiles

While it's not the most attractive apparatus you could wear on your face, it's definitely the most welcome milestone yet! We couldn't be happier to have graduated from the vent-- on to bigger and better lung capacity! And even though this next month will probably be spent on the C-PAP before graduating to a nasal cannula (just oxygen prongs), we rejoice in how far he's come and how well he's doing! It is evident that prayer is powerful-- and that God is good-- this morning he was down to 21% oxygen! Looking forward to seeing how much chubbier his cheeks can get now that he's able to rest and grow...


preemie pacifier in my hand

breathing happy air!

holding hands

chubby cheeks and a too big diaper

18 months of joy

Christian turns 18 months -- and we're ready to call MENSA.
He knows his letters, numbers, shapes, and the names of every person he's met in the past 3 months, as well as the difference between a backhoe, excavator, digger, loader and bulldozer. He pointed to a piece of machinery in one of Poppy's catalogs the other day and told me it was a Grapple. I don't even know how to spell grapple, let alone what one IS or looks like.
Completely on his own initiative, he's starting to use the plural form of words, including ownership, rather correctly! And he knows that Gramsy's car is a "Tahoe".
He is obsessed this week with ladybugs, and watching The Ladybug Picnic over and over on YouTube. oh, and Elmo's Song.
He seems to be growing accustomed to our leaving him for hours at a time to go visit "Kooey", and is incredibly excited about spending time with all of his grandparents. His first attempt at a sentence was, "Poppy has boat." (a couple of weeks ago) And he often says, "Comes, Daddy..." when dave walks down the hall.
He seems to be getting all four of his 1 yr. molars, and despite the drool and fatigue, seems to be fairing rather well. He loves yogurt, oranges (much to my dismay), craisins, raisins, and meatloaf. Oh, and Bran Flakes with milk-- his new favorite breakfast. Bwan Fwakes.
He refuses to let us near his golden locks with a pair of scissors. . . apparently he picked up somewhere along the way that scissors are dangerous and can hurt you. But yesterday I tricked him into letting me trim his bangs while he drank his bottle (on the floor with the 2 couch pillows, his daily routine at 3pm).
He loves being nakey, running around with nothing on for as long as he can get away from us. He loves when we make up songs about all the people in his life (especially Poppy's employees-- Andrew, Steve, and Rob).
Completely on his own, he started demanding that we "Pray, Jesus!" every time we sit down to eat together. he loves to shout "Amen!" with a big smile at the end. it's like he really has a sense of spiritual things... so cool to watch this emerge without prompting.
He says "zerbert" and loves to be chased and tickled. And he's becoming more affectionate-- giving huggies, snuggies, kisses, mugga-muggas and duhtz's. Please don't let it ever end!!!!
We are enjoying him so immensely these days-- and are so thankful for this wonder-filled, wide-eyed bundle of joy and giggles-- we just don't know how to contain it!!
Sure he's got his whiney, grumpy, breakdown moments too-- but he more than makes up for it in cuteness.
We lubby our bubby!

24 hrs!

Just talked to Kyren's nurse to see how he is doing (and if he was still on C-PAP)-- for the 2nd time today. She said he was doing so well, she was bored!! Music to a mother's ears!
When I spoke with her this morning she had taken him down from 30% oxygen to 26%-- and just now she said he was down to 23%!!
We are thrilled--
My mom and I will hopefully visit this afternoon and get some good pictures--

more later...

new mercies

It's 8pm and Kyren's been on the C-PAP successfully since around 1:30 this afternoon! Dave was able to be there shortly after they extubated him, and put the prongs in his little nostrils... he only had a few short spells of apnea before beginning to breathe rather well "on his own". Sometimes he would forget to take a breath here and there, but it seems that his brain is beginning to learn how to send those "breathe in, breathe out" signals to his lungs. AMAZING!! I really am in awe...
that this is real. that my baby is strengthening day by day. that he's actually growing little sacs of air in his lungs as we pray.
He is still so tiny and so fragile, but we can see such a difference in his appearance from even just a week or two ago. He's starting to chub up and get jowly cheeks and a double chin. His hair is getting darker and softer and longer. He has tiny eyelashes. And when i held him yesterday, i could feel his fingernails peaking over the tips of his fingers (how in the world do you file something so tiny?). Our little Miracle!
I know that he could still end up back on the vent-- but even the fact that he's been going steadily on the C-PAP for 7 hrs straight brings such joy to my heart! It is proof of God's power at work, strengthening those lungs, day by day, hour by hour. I know that He is breathinig each breath into our little man, and delighting in His creation! He is enjoying 'having mercy on His beloved'! And what a sweet mercy it is--
speaking of which, I slept much better last night-- Thank you Lord that your mercies are always new! They are fresh and personal and powerful. You help Kyren to breathe faster and me to breathe slower, so we each can rest and gain strength. Just another reminder that our need is the same as his. Every breath is a gift... and a sign of dependence on You. And maybe that is partly why you design these trials-- to bring us to that place where breathing in and out becomes the primary goal for the day (and even the moment)... and we realize that without your sustaining power, we wouldn't be able to make it. we need you as much as he does to survive in this world!
Thank you for all the ways you are speaking to us through this sweet and precious trial.
Amen.

vent

We're getting to hold him all the time now. It's still surreal, and a little frustrating to not be able to see his face (since he has to be skin to skin, he's against my chest and his face is only partially visible). But it's worth it!

Yesterday they turned down the ventilator to 40 breaths per min (instead of 60) to try to prepare him to switch over to the C-PAP tomorrow. This tests his lungs to see whether or not he's able to take more breaths on his own. We would love for him to be able to make it without the Vent by tomorrow -- but again, we realize that it takes time for his lungs to develop... and we don't want to rush him. Poor little guy! No pressure!

He seems to be doing remarkably well-- no real complications or setbacks so far. He's gaining weight rather steadily, and his feedings are up to 21 mL every 3 hrs. As of this morning he was 2 lbs 4.5 oz.

God is good!

On the homefront I am having trouble sleeping since our incident a week ago. We've been reading a lot of scriptures on fear and praying before we go to bed, and that seems to really help me fall asleep... it's just that post-pumping period in the middle of the night that is difficult for me. and sometimes in the early morning. I've never experienced an acute stress response like this-- and i don't like it!! And as much as I am thankful for every way, shape and form that the incident wasn't any worse than it was, I am still struggling to get my sympathetic nervous system to calm down, and my mind to stop racing. I know it will take time, but I just want it to be better NOW. To feel safe in my own home. To only be dealing with one crisis at a time...