Meanwhile, back on the homefront

So, I've clearly become an absentee blogger lately. My apologies to those of you who have returned to this site in vain. Every time I sat down to add a new post, it seemed I had nothing much of interest to post. Not even pictures, since we are sadly remiss in taking them. Most days we're happy to make it through with sanity intact and hopefully some character building taking place - mostly my own! But I am happy to report that Collin is now sitting up, and Kendra is very close to achieving that goal. They both have four little chompers, which they try out on any unsuspecting finger within reach. And for a few days, Collin's favorite trick was this...

Bugs and blessings

The nefarious TBC (Tummy Bug Crud) has systematically attacked the Craciun family this past week. Monday night, Kendra became pale and lethargic and vomited for the next 24 hours. In pain, unable to eat, and with an irritated colostomy, she had to spend a night at SHMC for observation and hydration. Early Tuesday morning, Ian joined the fun. Full bedding change was required, but with a bucket handy he made it through the next 12 hours in not too bad of shape. Filip and I experienced nausea, but nothing more. Two blissfully healthy days passed. Then yesterday Evan had a walk-a-thon. After one lap he complained his tummy hurt, and I'm thinking, "I've gotta get this kid into shape." We left early, came home for a snack and some rest, and an hour later I hear, "Honey, we've got a problem." Yeah, him too. Only this little guy can't aim. We were scrubbing laminate, carpet, couches, and rugs all afternoon and evening. I went to bed thinking, "At least Collin was spared..." Well, you guessed it. 1:00 am - moaning and puking from the babe. We spent a good part of the night rocking and consoling. He's not a very good puker either. He fights it and tries to get it back down. No good.

However, despite all this chaos, we continue to see God's loving hand on us. Kendra's hospital stay was kept short, and they didn't find anything serious like a dreaded obstruction. My mom, who was gone on vacation all last week, was around to help when I had to stay with Kendra and get her to appointments. One of those appointments was to get her hearing aid. We were told at the last appointment that what would benefit her most, a unit called a BAHA, cost $4000 and was rarely covered by our insurance. We were expecting to get a less expensive, bulkier, and less effective aid. But God poured His blessings on us yet again. The first aid they tried to get for her is currently out of production, and the second option is far too large and unsuitable for infants. So, they fit her with the BAHA!! She's using a clinic rental for now, but the technician believes that, under the circumstances, insurance should cover it and she'll be getting her own within a few weeks! Praise the Lord!! Yet another blessing was having our good friend safely deliver her darling baby girl on Wednesday. New life - a gift from the Author of Life. So, all in all, not a bad week. Bugs, blessings... and a baby!

Easter photos

It was another lovely family Easter celebration. The kids had a blast hunting for Easter eggs at Grandma and Grandpa's after church. Though it was still a little chilly, it ended up being sunny and dry - just right for a little outdoor adventure. I had so much fun having a little girl to dress up at last, and Collin was looking quite dapper in his little sweater vest, I do believe. But most of all, Ian was able to articulate for the first time what Easter is really all about... "when, cause, Jesus died, but then, but He didn't stay died. He came to life again." Thank You, Jesus! You are our Hope and Salvation.

The curl-hawk

What do you get when you have a baby boy with long, curling locks in a strange side-balding pattern? I present you with... the curl-hawk. Patent pending.

Test results for Kendra

Since Kendra has come home, not a week has gone by that we haven't had SOME sort of appointment - home health nurses, ostomy care, therapy, specialists, etc. She had two pretty important ones this week so far. On Monday, she had a repeat of her ABR hearing test, this time at the hospital under IV sedation. It was a stressful day, but the test was a success. Her left ear is fine, which is a relief. She has moderate to severe hearing loss on the right due to the absence of an ear canal, so she will be fitted with a hearing aid soon.

Yesterday was Kendra's first visit to Shriner's for her thumb. It's a little early to tell for sure, but the surgeon felt she might not be the best candidate for successful pollicization - the repositioning of the index finger to turn it into a thumb of sorts. She may not have the muscles and tendons necessary for abduction. We wouldn't do anything for a few years anyway, but it was disappointing to hear she may not have the results we were hoping for.

Still to come: her first visit to the cardiologist to evaluate her heart defect, and initial visits for her vertebral issues, which may or may not also be handled by Shriner's. Some good news: she's now over 8 pounds!! Hard to believe - she's come a long way! She's still smaller than Evan or Ian at BIRTH, but we're making progress. :) Thanks for checking in, and I apologize for the infrequency of the posts as of late. Blessings!

I'm back!!

Too long since I last posted, I know. Wow, it's been wild and busy having my little girly home with us at last. For weeks, it seemed nearly every hour of day or night we had one or both of the twins wailing. They are not the most contented of babies. But little by little, day by day, they are improving. We are seeing more smiles, longer naps, and last night for the first time, they both slept soundly for 8 hours without interruption!!! Now you know how I finally found the time and energy to post again! Yeah!



But now, for what you really came here for - pictures:

Little strawberry shortcake.

You lookin' at me?

Together again!

Broadcasting live from SHMC

Well, I am once again blogging from a hospital room, but this time it is a far more pleasant experience, since my room is the "rooming-in" suite in the NICU and my baby comes home today! We spent our first full night together last night - crazy that she's already 11 weeks old and this was our first night. Anyhow, it wasn't nearly as rough as I expected. She is, after all, a rather old little gal by now! She certainly isn't sleeping through the night, but she does sleep most of the night. However, she is a noisy sleeper - frequently grunting or fussing a little, then settling in. This made for not too much sleep for the mama, and it will be interesting to see how long it takes for Collin to readjust to his sister and her noisiness. :)

Filip survived his night at home with the three boys. I guess it's really a blessing we're now only bottle-feeding, because I don't know how that would've worked out otherwise. Within a few hours, all the odds and ends should be wrapped up over here and I'll be introducing Kendra to her family and her home. Then things will get really interesting, so say a quick prayer for us if you think of it. God is our ever-present help in time of need - a promise I will be clinging to!

A week of immense blessings!

As you know, it's been a long haul for us these past months. Some days, it's been hard to keep trusting and hoping, yet we have always known that God is in control and guiding this ship. But God clearly knew we needed some encouragement, because He sent it in great supply this week! On Tuesday, Filip was accepted for the position of PR and marketing for Elements in Spokane - our first full-time position in just shy of two years! On Wednesday, Kendra reached 5 pounds finally, and we received the results of her cystic fibrosis tests - negative! Which leads to the amazingly awesome news we got yesterday - she's coming home on Monday!!! Unbelievable. God, You are too good. I know we now face even more sleepless nights and chaotic screaming and bottom wiping and colostomy bag changing and double bottle-feeding and who knows what else, but I can't wait! All my babies under one roof at last, and a job to provide for them all! Blessed be the name of the Lord!

PS - sorry I don't have more photos. I'm having issues with uploading from my camera. But for those of you in the Spokane area, you'll get to see her live and in person really soon!

Getting closer to homecoming

I hope you all had a wonderful Christmas with family and friends. I know ours was very special, yet bittersweet with Kendra still in the hospital. On Christmas Eve, she had her second colostomy revision, and so on Christmas day she was completely sedated. The surgery went well, but she had a harder time bouncing back from this one. She was on the ventilator for three days, required a blood transfusion, and had fluid in her lungs. However, she is now on only a little bit of room air in her nasal canular and has even taken some food by bottle, though only a very little. Once she gets back on track with feeding and gaining weight, she gets to come home!! It's been a long, long road, but the end is in sight.

I'm looking forward to having my baby girl home, yet dreading it as well, because Collin has gone from fussy to fanatical. He hardly ever sleeps, even during the day now, and can be very difficult to soothe. We're hoping it's just a very temporary phase, but we dealt with this for about six months with both Evan and Ian. I can't imagine four more months of that with two babies at once. Phew. We're running on very little sleep, and we are going to need our rest to care for this clan. But sleep or no sleep, it's time for our princess to come home and soon.

We also squeezed in Ian's third birthday before my oldest sister and her husband had to return home. What a fun age! He really tore into his presents, and he insisted upon a yellow cake with yellow frosting, so we ended up making him a big smiley face cake. He loved it! He's been busy trying to keep up with the "big boys" lately, and getting bigger all the time.

Well, from our family to yours - Merry Christmas and Happy New Year!

Kendra's big week

Kendra is now a member of the 4-pounder club, with a certificate to prove it! She's had a great week. The pediatric GI doctor was brought in to evaluate her and help us trouble-shoot with her lack of growth. The initial consult gave us some potentially frightening news. He was concerned about the possibility she may have cystic fibrosis. What little I know about this disease is enough to know it would be a scary diagnosis, if his fears proved valid. Praise the Lord that her initial test, called a sweat chloride test, was negative. They sent out her blood for DNA testing to confirm, but it looks as if we don't have that additional worry.

The other result of his visit was a change in her nutrition. She had been receiving my milk with formula supplement added for extra calories. He felt that part of her problem was an inability to digest the long-chain fatty acids found in mother's milk, so she is now strictly on a formula called Elecare. Since the switch, she has gained weight every day and is now at 4 pounds 5 1/2 ounces!!! Yeah!! Not only that, but she is taking everything by mouth, drinking her bottles like a pro, so they pulled out her NG tube yesterday.


She also had a visit from "Santa" this week. Here she is with a picture of her first encounter with the jolly fellow. Doesn't she look so big!!




So anyway, now that she's growing well, we hope to get her next colostomy repair scheduled soon so that we can get that out of the way and move forward with her recovery - the sooner to get her home! We had so hoped to have her with us for Christmas, but it just wasn't God's timing. However, we are abundantly grateful for all the progress she has made this week. God is so faithful.

Overdue update

Hey all!

Well, I know it's been a while since I've posted, but life's been a little crazy lately. Looks like I've got a few minutes for a brief post, though, so here goes! Kendra is still in the hospital and has kindof hit a plateau. She gained less than an ounce all last week and can't seem to figure out bottle feeding. Also, her colostomy has prolapsed again, which means she will require another surgery before coming home. So far, they haven't scheduled it yet since she may also require a direct feeding tube into her stomach if she can't learn how to bottle-feed, and they would do both surgeries at once. It's a little discouraging, since we had so hoped to have her home for Christmas, and that really is looking less and less like a reality. But prayer is a powerful weapon, and I know many of you are fighting on our behalf. Keep it up!!

Collin is doing great, though he has become a bit of a fussy boy like his brothers were. Still not sleeping great at night, but at least he's healthy!! He has his two-month appointment on the 21st, when we'll find out just how much he's weighing these days and get his first round of shots - yuck. I love the time I get to bond with him at home, but feel so torn knowing that Kendra is not getting that same time and attention from me. Some days, I can hardly bear to put her down when it's time to go home.

Filip is working on getting a photography/filming business up and running. He has been toying with the hobby for some time, and would love to have it be his job as well, so if you know anyone needing family pictures, wedding video, or anything along those lines, let us know!! Well, time's up and that's all I've got. I leave you with these pictures of our sweeties.

The week in review...

It's hard to believe that it's been just over a week since Collin came home. Already, his time in the NICU seems so far behind us. We are blessed!! We are all adjusting quite well to having him home, even though nights are short and days are sometimes long. It is just so sweet to be able to hold and cuddle him all we want with no tubes and wires, vital checks, etc. Here he is getting his first bath at home - a treasured moment for us!!

After days of little to no measurable progress for Kendra, we had a big night yesterday. She took her first bottle!! It was only 1/8th of an ounce (4 mL), and she sputtered a bit, but she really seemed to enjoy it. Today they are going to let her take up to 1/3rd of an ounce (10 mL) three times a day if she will tolerate it. It was so wonderful to get to actually feed her something and see her making progress. She also reached 3 lbs 11 oz - one whole pound over her birth weight! Thank You, Lord, for these little blessings that mean so much. Here she is taking that first little bit of milk by mouth:

Progress and setbacks

Monday was Collin's first pediatrician appointment, and he did splendidly! He is already in the 91st percentile for his length and 35th for his weight - that's without taking into account his early arrival!! Super news for our little guy who was having trouble feeding - obviously not much of a problem right now! For the most part, he's been a good sleeper (as much as can be expected with a newborn) and tends to be pretty content most of the time.

Kendra has had some setbacks since her surgery, unfortunately. While she has gained a little weight (up to 3 lb 4 oz), it's been much slower than we'd hoped because she is unable to take food other than through her IV. Right before her second surgery, they were noticing after her nasal "feeds" she still had quite a bit of residual milk in her stomach as well as bile, so they were going to try putting the tube past her stomach into her duodenum. This was put on hold by the surgery, and since then, they have had no success getting a line placed and starting her on my milk again. They have tried it under guided fluoroscopy, with different positioning, all to no avail. Please pray that the doctors will find a way soon so she can begin to really feed and grow. They said her liver is getting stressed from being on the IV for so long. We need some encouraging news for our little darling!

Too much...

Today was... a little too much.

Too much snow for mid-November if you ask me.
Too much GoFish-playing from my game-loving boys. Phew. Mommy's tired.
Too much sleep this morning, nearly making us late to meet the geneticist.
Too much joy upon arriving and seeing Collin ready to go home!!
Too much concern when I saw that Kendra's colostomy had prolapsed out ... too much.
Too much sadness and fear when we learned she would require another surgery immediately to correct this problem. This was NOT part of the plan for the day that was already a little too much to begin with.
Too much relief to have her pull through like a pro again, but sad that this will likely add more time to her recovery, which is already taking too much time for our tastes. We want her home!
Too much paperwork to just get my baby boy brought home - but it was worth it!
Too much good food and generous giving from our friends the Schwahns tonight - thank you, guys. We really needed the support and encouragement today!!
Too much precious time spent at the computer now at the end of a day when there's too much to say, but for now, I'll leave it at this -
I praise my God for Whom NO situation is EVER too much.

Big Day Tomorrow!

Well, after 20 days of slow, steady progress, the day has finally arrived... Collin took all his feeds and he's coming home tomorrow!!! I can't stand overuse of exclamation points, but seriously people, can I possibly OVERstate how incredibly excited I am right now?!! :) Clearly not. Wow. God is SO good. Now I face the daunting challenge of caring for one baby at home and one at the hospital, and of course Evan and Ian as well. But we'll find a way, just as we have every step of the way thus far.

Tomorrow is also a big day because Filip has been called back for a second interview for the job he interviewed for on the day of Kendra's surgery. When we have big days, we like to make them huge around here. Haha! But truly, this couldn't have come at a better time. This would be such a wonderful answer to prayer. Bringing home baby is great, but so is bringing home the bacon! We appreciate all your prayers on our behalf, and keep praying for Kendra, too, so she can join her brothers and us soon.

What's New

Hanging with Ronald McDonald at the hospital.

A little size comparison!

Well, both our little peanuts are still living out their days in the NICU, and some days it feels like we are too! They are making little bits of progress day by day, but still have more to accomplish. The doctor told me this morning that Collin may be ready by the end of the week, but not to expect Kendra home before Christmas. In the beginning, we were hoping for Thanksgiving, since that would put her at her due date, but she's got more to deal with than we originally thought.


Along those lines, we had some disappointing news last week. In addition to her heart defect, brain bleed, GI issues, "floating" thumb, and growth restriction, she also has rather extensive spinal issues. A number of her vertebrae in her neck and upper back did not form properly. She will have an MRI either today or tomorrow to determine if her spinal cord looks okay, but she will most likely require surgery for this as well down the line. The good news is that the testing on her eyes and ears appears normal at this point. Given her other conditions, they were concerned she may have severe hearing loss, cataracts, or other issues. Although she faces a daunting list of surgeries in the future, we are told she shouldn't have to have any others just yet. They are still planning to wait for the next surgery until she's about 15 pounds, which seems really far away when she hasn't reached 3 pounds yet. But she'll get there. And so will Collin. We have hope in the God of miracles!!

Updates from NICU

Not much has changed for our little ones over the past few days. It seems we're in a holding pattern of sorts. Collin still has yet to figure out how to take his feedings by mouth with any amount of consistency. He tires so quickly that he typically only gets in about half of what he needs in order to grow. We are waiting for him to have two full consecutive days of adequate bottle feeds/nursing before he can come home. I think he's just waiting on sister to take the lead, since she is by far the stronger-willed of the two.

Despite this strong will and feisty personality of hers, Kendra still has been unable to come off her nasal canula or her pain meds completely since surgery. She's been waking up fussy quite a bit, so when we visit and she's peacefully resting, we don't want to rock the boat. This has meant that, other than a few occasions, we've been unable to really hold her much lately. It's hard, yet we know that rest is crucial for her growth and healing. We are waiting on the surgeon's okay for her to start gradual tube feedings like her brother. This will be the first major step towards her road out of the NICU and home where we long for them both to be.

We met with a geneticist on Tuesday who evaluated Kendra to help us get a better picture of her situation. Her chromosomal analysis looked normal, which is encouraging. It looks like she probably has either what's call VATER association or Townes-Brock Syndrome. The first, and apparently more likely of the two, describes a related grouping of birth defects and conditions affected by a disturbance (possibly an infection, but unknown) at a certain point in her development when several features are in formation. The second is a genetic disorder, often hereditary, which affects many of the same systems as the other condition. In either condition, it appears Kendra would have a fairly mild case/presentation. If they are able to determine which one is affecting her, they will have a better picture of potential problems she may face down the road. With additional testing being done, the doctors told us to expect 3-4 weeks' wait before we really know anything. For now, what's most important is her recovery and growth anyhow. We'll deal with anything else when we get there.

Some days, all the back and forth from hospital to home, incessant pumping, endless consults and whatnot almost seems normal. Other times, it can get rather overwhelming. Like today, when I was given a stack of materials on caring for a child with a colostomy. Phew. I never imagined things quite this way, and sometimes I wonder how we'll get through this next month, let alone this first wild year. I believe God will strengthen us for whatever we face, but I don't imagine it's going to be easy. Just one step at a time. That's all we can do. Hanging in there.

Collin in real clothes!!

Surgery success!

So sorry I didn't get to the blog in the last couple of days. It's been a little crazy for us. Tuesday morning, we got called to the NICU early since a surgery before Kendra's got canceled and she was being brought back early. It meant we weren't given the time to hold her before they took her back, and that was stressful for me, but at least we got to see her and be with her right before she went. Throughout her surgery, we waited in my room while Filip also got ready for an interview - the first in a long time! What a busy day.

By 10:30, the surgery was complete and we heard from the surgeon that everything went well and there were no surprises or complications. She tolerated everything well, despite her fragile little size. She now has a nearly complete digestive tract, with her atresia corrected and her colostomy in place. That part is a little intimidating, but in time we'll learn how to handle it like pros, I'm sure.

Since then, she has been heavily sedated and therefore back on the ventilator. They have started gradually reducing the Fentanyl, though, and seeing if she's capable of breathing on her own again and coming around without too much pain. In about 10 days, they'll be able to start trying feeds, but most likely by gavage, which is a tube from the nose down to the tummy. Collin is still primarily on this type of feeding as well, since he has not yet figured out how to coordinate sucking, swallowing and breathing. However, both kiddos are off the bili-lights since their jaundice is better.

I came home Tuesday afternoon, and since then I've been able to visit them twice a day, and I hope to be able to keep that up as much as possible. I'm usually able to do Collin's "cares" - daiper change, temperature check, change his leads (reposition the little monitors that check his heartrate and respiration, etc), and attempt to feed him if he's up to it. I don't know how long it will be before I'm able to hold Kendra again and learn how to empty her colostomy bag, but for now I do a lot of staring at her beautiful tiny self and praying.

I know many of you are praying as well, and I appreciate that so very much. Thank you for all the support. They depend upon it and so do we. The boys are doing well, though I don't know that they fully comprehend that their brother and sister have arrived since they can't see them at all. It's certainly a very different post-delivery experience. I still wake several times in the middle of the night - to pump - but it somehow it seems to be lacking the rewarding aspects. Soon we should have Collin home at least, and I can't wait for that. Until then, my heart is most definitely in two places at once. I'm grateful I get to see them as often as I do. That's not true of all NICU families. We have much to be thankful for.

Day 3 for the twins

We are now on day three of our post-delivery journey with the twins. Yesterday morning, a kind and lenient nurse allowed me to hold both Collin and Kendra at once. My heart was filled to overflowing with joy! They seemed so happy and content to be near each other again, and of course being with mama wasn't so bad either. :) Collin is now maintaining his own body temperature, so he's in "open care," which means no more warming bed and better ease of care. With that development, they let me try feeding him last night. He really wasn't interested and just got mad at me, then fell asleep, but we'll have many more opportunities to try. That is one of the remaining "hurdles" he has to clear before he'll be okayed to come home. Naturally, Kendra will have a longer road ahead. Her first set of surgeries is tomorrow. I've heard great things about the surgeon, but still, it's nerve-wracking to think of my tiny little angel being put "under the knife." I know that, more importantly, she is "under HIS wings," safely sheltered by our loving Father. Please pray for a smooth, successful surgery for her tomorrow and for quick recovery. We'll update when we know more. Thanks!