Kaela's Visit From De-Da

Dad Didyk came to visit us this weekend. We've had a great time, of which I will tell you more in tomorrow's post since it's already midnight tonight.

We took Dad over to visit Kaela several times, and he was able to hold her twice.

De-Da holding Kaela for the first time.






















Our "fat" little girl. She's up to 4 lb 2 oz!

















Check out her beautiful double chin! =)

















A late night visit from De-Da (10:30 at night).






















De-Da, Kaela and Andy, all dressed in hot, sweaty blue gowns.

















So far, so good on the feedings. She's up to 13mL per feeding, and seems to be tolerating it. And...they got a PICC line in last night!!!!! Yeah! And this one is in the correct position in her arm, so we're hoping it lasts awhile. We'll see.

Goodnight.

One Month Old

Kaela was one month old on Wednesday - crazy - I can't believe she's that old already. She looks great tonight. They were not able to get a PICC line in last night, but her latest IV lasted almost 2 1/2 days, so that was a blessing. It was starting to infiltrate tonight, so they were starting a new one when we left. Hopefully with two antibiotics d/c'd (just one left) it will help the IVs last a little longer.

They started feeding her milk again today - just 5 mL every three hours starting at 1 pm this afternoon. In the morning they'll get another x-ray and really examine her belly to see if she's tolerating having food in her digestive system again. If all goes well, hopefully she'll be back to full feedings in a week and off of the IV fluids.

She is 3lb 15 oz! It's amazing what another pound will do when you're that tiny - she looks so different and even has a double chin. We'll get more pictures tomorrow.

Her hematocrit was starting to drop again and she was looking a little pale, but she was able to bring it back up today by herself without a transfusion. PTL! She's also been off her oxygen for a week, so they took her pulse oximeter off and just have her hooked to a heart rate monitor now. One cord gone at a time.

Thank you for your prayers for her this last week - it was definitely a long one for us, and we're praying that this bump is over and she'll do fine eating again.

More tomorrow...

Another One Gone Bad

Unfortunately, Kaela got phlebitis in her leg from the PICC line, so they had to take it out. So frustrating - I feel so badly for her getting stuck all the time. They were able to start another IV easily and will try to get yet another PICC line in this evening or tomorrow. Please pray this one will go in easily and last for the rest of her NICU stay. Thanks.

Here is an excerpt from an email my Mama sent me this morning. Great verse, so thought I would share it with you all:

When I was reading this morning I came across this verse and it seemed just perfect for Kaela and her situation because I know many people are reading her blog and praying for her. Here is the verse:

“On Him we have set our hope, that He will continue to deliver us (Kaela), as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many.” II Cor. 1: 10b-11 Isn’t that perfect?

"Come On, Daddy!"

We had a great evening. After a delicious meal at my parents, we headed home for a few minutes before going over to see Kaela. I called ahead and asked the nurse if it was quiet enough to bring our son in for awhile...just thought I'd try one more time to get him in again. She said sure! Let me tell you, Christopher went wild when I asked him if he wanted to go see Baby Kaela. "Go see Kaea." I told him we needed to change his clothes and get shoes on. "Shirt. Change it. Shoes on." As soon as he was ready, he ran to the door and stood there yelling, "Come on, Daddy! See Kaea. Shoes on. Come on, Daddy!"

Yesterday, when Christopher was looking at the pictures of Kaela in her incuabtor and you could see her PICC line. He said "Kaea owie. Need papi." He was so concerned. Well, on the way to the hospital, he remembered those pictures and kept telling us "Kaea owie leg. Need papi. Owie foot." We tried to explain to him that it didn't hurt and that it helped her get the food she needed. It was so sweet and sad the way he was saying it, Andy and I had tears in our eyes.

When we arrived in the NICU, Christopher entertained all the nurses while we scrubbed in at the sink. Then we walked into the room where Kaela was. He saw her and the first thing he wanted to do was open the doors - good memory, Christopher! Of course, since she's in contact isolation, we didn't let him touch any of it...just looking tonight.

















When he realized we weren't going to open the doors, he started actually looking at Kaela. His observations were: "Naked. No clothes on. Diaper. See papi. Get it. (It was above her head.) Why no clothes?" I explained the doctors and nurses had to see her belly and legs to take care of her and help her get better so she could come home.

Then Andy donned gown and gloves to hold her for a little while. Christopher was intrigued and I think a little worried as Andy put them all on until we explained that Kaela had c-diff, a bacteria in her poop, and Daddy had to wear the gown so he didn't get poop on his clothes.






















Our sweet little girl, bundled in blankets and a hat. And FYI - it is HOT under those plastic gowns! =)






















Christopher remembered that her monitor beeped last time he was there, and he kept pointing to it and telling me "Beep. Beep. Beep." I explained to him everything on the monitor again, and what it was for...he listens so intently and really seems to take it all in.

The nurse was kind and took a family picture for us too!
Rachel, Christopher (23 months), Andy, and Kaela (4 weeks, 2 days).

















We had explained to Christopher before we went in the NICU that Daddy or Mommy had to hold him or he had to sit in a chair like a big boy and not get down. So after a few minutes, he remembered and asked "Sit chair. You do it (meaning I do it). Big boy." So he sat fairly still and quietly in the chair and watched Daddy hold Kaela. He told her he loved her, sang "Deep and Wide" to her and gave her two kisses on the top of her head. It was a precious moment. He's going to love having her at home...look out any boys that get near her - I can tell already he's going to be very protective and caring toward her.










































On the way home, Christopher kept telling us over and over "See Kaea. Naked. No clothes on. Naked. No clothes on. Get better. Get home. Get better."

When I put him to bed this evening, he just snuggled up against me, held my neck and then wanted to talk and talk and talk about the evening. Here is how our conversation went. Christopher's words are in italics, mine in bold:

(interrupting my singing): See Kaea. Yes. You went to see Kaea. Cute. Was she cute? Naked. No clothes on. Yep, she was naked. Get her out. Did Daddy get her out? Out crib. Daddy got her out of her crib and held her. Get out. Hold her. Poopy (I think he was referring to Andy wearing the gown to keep the poop off him.) Nurses. Yep, there were nurses taking care of Kaela. Sick. Get better. Get home. When she gets better, then she can come home. See Kaea. Yep, then you can see Kaela lots. Owie. Papi. Well, yes, she has an IV in her foot to help feed her. And she has a papi too. Naked. Hospital. See Kaea. Sit chair. Big boy. Yep, you sat in the chair and watched Kaela like a big boy. Mommy was very proud of you. Poud you. (Hehehehe - giggle.) Baby seeping. Yep. Kaela's sleeping. Now it's time for you to go to sleep." ... and then we went through that whole conversation at least 3 more times. His understanding of everything blows me out of the water - it's amazing. Several nurses that were there this evening also have two year olds, and they said theirs were barely even talking at all - his vocabulary and comprehension of so much amazed them too.

Anyway, it was a wonderful visit...hopefully we can keep sneaking him in a couple times a week at night when not many people are there.

Kaela is doing well...she is 3lb 8oz, so she has gained 1 oz short of half her birthweight! Now hopefully this week of antibiotics and not eating will help her gut rest enought to heal completely so we can work on feedings in the next few weeks. Thank you for your continued prayer and support.

NEC

The doctor caring for Kaela today stated that it was his opinion that we should treat Kaela for NEC. He said he thought her x-rays exhibited findings suggestive of NEC and that it would be far better to assume she may have it and treat her for it even if she doesn't than not treat her for it and keep going in circles or let it get worse. So...the two antibiotics that were d/c'd this morning were restarted by another doctor who said he wanted to give her the full 10 day course and not feed her during that time either to make sure her intestines were able to completely rest and heal. PTL we got the PICC line yesterday! We're especially thankful for that now since she'll need an IV for at least 2 more weeks. She continues to do well off her oxygen (3 days now)! Andy and I both had a good visit with her at different times today and were able to hold and love on her for quite awhile. She's so precious!

Due to the TPN Kaela is receiving, her liver is doing more work with her nutrition since her gut isn't doing anything right now. This has caused it to enlarge and her biliruben has gone up some...the treatment is to stop TPN feeding as soon as possible! =) ARGH! One thing leads to another...

I went back to work today - just a short 4 hour shift. I plan to pick up a shift a week or every other week until Kaela comes home so I can take my "maternity leave" then. Since I work PRN, I'm only required to work 2 shifts a month, and I hadn't not done that yet - so the past couple weeks "off" don't take away from my maternity leave if I start work now. I love my job - so flexible!

Please say an extra prayer for us today: Andy is pretty swamped and behind at work, which is stressing him out; I'm feeling a little emotionally drained - it's somewhat frustrating and scary to have so many different doctors, nurses and nurse practitioners taking care of Kaela because you don't always get the same explanations and suggested treatments. (We've had 4 doctors, at least 3 residents, med students, 5 nurse practitioners and about 30 nurses in 28 days. There is a staff of 70+ nurses - so I'm sure we're not done meeting them yet). So, then Andy and I are trying to piece together everything we've been told and "manage" her care since we're the only ones who've seen her every day of her life - when really we don't know much about it all. I'm sure they're sick of - or at least approaching sick of - all our questions/concerns. Also, I think Christopher is feeling the strain - he's had a couple rougher days and seems to be feeling a little more insecure and clingy which comes out in being loud and beating on things...at least today. And of course, Kaela needs your prayers too.

Thanks for your faithfulness in keeping up with us and praying for us. We appreciate and love you all.

Here's a link to the American Pediatric Surgical Association regarding NEC:

http://www.eapsa.org/parents/resources/NEC.cfm

Contact Precaution

Andy and I had a fun date over the weekend. Saturday afternoon/evening and on into EARLY Sunday morning, we attended the NASCAR Sharpie 500 race at Bristol Motor Speedway. It was fun to get out of the house and hang out together with other people from Andy's work and his clients. The race was amazing - intense at the end - and we had such a wonderful time together.

These two pictures show all the cars stopped because of a wreck that occurred on the speedway. I thought it was cool because they all stopped exactly where they were and it looked like someone had just frozen time because they weren't lined up or straightening themselves out on the track.


















The stands were PACKED. At the beginning, they did the wave around the stadium of 160,000+ fans...it set a Guinness world record for largest "wave."

















We found out yesterday that Kaela has c-diff - an infection that is in her bowels. Fortunately it is easily treatable with antibiotics, and she was already on the right one, so they're continuing that until it clears up. While we're not happy about the infection, it's nice to have an explanation of why her intestines were so dilated. Since this is a very communicable disease - she is now under "contact precautions" and everyone has to wear a gown and gloves to care for or hold her. Andy and I both were able to hold her today - a wonderful thing but VERY HOT as the gowns are plastic. Yuck!

Mommy dressed in her pretty blue gown and gloves holding Kaela, who, by the way, looks a LOT likd Christopher in this picture.

















Kaela has been off her oxygen for 2 1/2 days and is doing wonderful without it! The nurse practitioner was also finally able to get a PICC line in the correct position, as the first one they put in on Friday went bad already yesterday. This one should last a few weeks! Hopefully no more IVs and blood draws for awhile. We were aware they were going to try again, so we lined up a bunch of people to pray and finally the 5th time over the past two weeks was a charm! Thank you Lord for anwswering our prayers!!!!!

Kaela is also no longer wearing a temperature probe, which means the bed doesn't adjust itself to keep her at a certain temperature. It's set at a certain temperature and she has to work to maintain her own temp - though it's still warmer than room air.

Here are a few pictures of Kaela, dressed in a little preemie outfit from Josephs that fits 0-3lbs. She is right at 3 lbs, and it's perfect - so cute!

















Beautiful face - no tubes - no oxygen, no stickers, no feeding tubes.





























I took a walk with Christopher this afternoon, and he ran about 1/4 - 1/3 mile! Part way there he told me he wanted to run, then as he ran several blocks, he kept saying "Run. Fast runner. Good runner." It was pretty cute!

Trip to the Fair

Kaela is improving. Her bowels looked clearer today, and they were able to remove her suction tube this evening. They'll take one more x-ray in the morning to make sure her intestines still look ok without being suctioned out. So far all the cultures are negative. She's alert and active - trying to climb out of her isolette. Her IV went bad this afternoon, so they attempted again to put a PICC line in - the NP could only thread it as far as her shoulder, but they're using it for now. Hopefully it will at least last longer than a regular IV.

This evening, we took a break and took Christopher to do something fun: we went to the Appalachian Fair with Aaron, Faith and Isaiah. We had a good time. Christopher seemed to enjoy parts of it, but I think he was a little overwhelmed by the crowds...plus it was bedtime! =)

Here are a few fun pictures:

Jumbo corn dog: $5
Too sweet lemondade: $5
Ketcup to drink for Christopher: included in the $5
Facial expressions of Father and Son: priceless






















Andy, Christopher, (Isaiah hiding behind the table in his stroller), Aaron and Faith Tolan.

















After eating, we went to the petting zoo - the boys enjoyed that. Isaiah "dove" right in - no fear as he let the animals lick his hands. Christopher pet a couple briefly - mainly with one finger - and decided he liked just looking better.

Baby chics.

















Little pigs - Christopher's enjoying seeing them dig in the mud with their noses.






















Petting the kid.






















Christopher was most intrigued with the baby ducks in the water "habitat" with a makeshift waterslide the ducks would go down. They lured them up the slide and then down it by sticking a tray of food just out of reach at the top so that as they tried to get food, they went down the slide. Entertaining for the kids...but...






















"Hi, Mommy."






















Showing Daddy the ducks.






















Right before we left, we did let him "ride a horse" on the carousel. No smiles...so we weren't sure he really enjoyed it, but he cried and cried when the ride was over and begged to keep "riding the horse." Guess he did like it.

















So, a fun family evening out...and now to bed! Goodnight.

Answered Prayers

Well, it's been a late night. We just got back from the hospital...but the last news was good news so we can at least sleep in peace for a few hours.

When we went back after supper, Kaela's latest x-ray looked even worse. It was scary to see her bowels so distended and worry that they might rupture. We sat and watched her, talked to her, prayed with her for a couple hours. Also, we called our church and requested some of the elders to come pray over her as well. They arrived around 10:15 and laid hands on Kaela and prayed for her. At 11:15, her x-ray looked like a different child. It looked almost completely cleared up. Also, Kaela had gone from a restless baby with a scrunched up face as she moved around in obvious discomfort, to a peacefully sleeping little one. Thank you Lord for answered prayers! Over the next day or two, we'll keep getting culture results back from her blood, stool and urine and see if/where the infection is. She's already being treated with three different antibiotics...so whatever it is, hopefully it will clear up.

Thank you all so much for your prayers and encouragement - we feel and see the results. Thank you Lord for hearing all the prayers and answering them, for holding our baby girl in Your healing hands.

Thank you friends and family for all the care you've provided for Christopher today, for the laundry, food, hugs, tears, and support. We love you all!

Backing Up Again

See my pretty bow? One of the NICU staff made it special just for me - pink with brown butterflies so the colors would match my blankets. Thanks, Jessica.


















Kaela gained a little weight last night and was doing great - back up to full, fortified feedings. She's been practicing for the Olympics the past few days with all her acrobatic stunts - throwing herself all around, standing on her head and feet like this ^ when on her belly, and even flipping from her belly to her side. She also pulled her NG tube out yesterday and was proudly waving in around inside her crib.

Anyway, then the hospital called this morning and said her stomach was distended again and they were taking x-rays and running tests. When we arrived at the hospital, they showed us the x-rays of her bowel - incredible - you can see her intestines bulging through her abdomen, and some of the dilated loops are wider than my finger! Yikes! Anyway...they've stopped her feedings again, are restarting the IV feedings and have her hooked to suction this time to try to suck some of the air out of her so her bowels don't rupture. Good idea, we said! Another x-ray is due at 5 to see if she's improving, and they'll go from there to decide what to do about her feedings. So far no signs of infection - which is good. Hopefully this will be an easier thing to take care of and get her back on track faster than last time. Thanks for your prayers!

Moving Along

Kaela is doing well. She's back up to her full feedings of breast milk, so when her IV went bad last night, they were able to take it out and not start another one...PTL!!!!! She had been off her oxygen for about 36 hours, then she had it on for a little while this evening but is back off again. Hopefully that will continue to improve too. Everything else looks great right now. We're just waiting on her to gain some more weight. Thanks for your continued prayers. Enjoy the pictures from our visit earlier today:





































































Christopher has been watching quite a bit of the olympics...we turn the TV on while I pump during the day, so he's seen a lot of volleyball. But he's also been watching them over at my Mom's house since she's recorded most of them. She says he LOVES the gymnastics and talks the whole time...something like this: "Run. Jump. Nudder one. Whoa! Again!" And Anna says he likes the dismounts too because while the gymnists are on the bars, he keeps yelling. "Get down. Get down. Get down." and then "WHOA!" when they finally do. What a doll - we love him!

Pull-Ups and Blueberries!

Christopher hanging out with Babu by his truck.

















Babu and Christopher discovered that the beam in the dining room makes a good pull-up bar. Christopher really got a kick out of hanging and dropping into Babu's arms.

Getting set...























...hanging...






















...dropping...






















..."Again!" giggle giggle






















Last Thursday, Mama, Anna Leigh, Christopher and I went blueberry picking. It was a lot of fun with delicious results! Christopher enjoyed it too, though his bucket was completely empty by the time we left...but his belly was full!

Sho Sho and Christopher hiding in the blueberry patch - filling buckets and bellies.






















Anna showing Christopher what color berries to pick.










































Christopher's idea of blueberry picking:

"Mommy. Look - bueberry."






















"Eat it."






















"Mmm. Good."























"Nudder one."






















And he's off into the patch to find more.






















Christopher working on emptying his pail.






















He even got some help picking from the man running the blueberry patch.

















"More. More. Mommy's bucket. Please." Christopher bringing his pail to put more blueberries from my bucket into his so he could eat them.























Of course, being pure boy, by the end of the time we were there, he was more interested in throwing the blueberries than saving them in his bucket or even eating them. Guess he was full. =) We had a great time!

Hiking Rules!

Christopher and I definitely needed some Man Time outdoors, so we were planning on going hiking this Saturday while Rachel went to a bridal shower for soon-to-be-Aunt Mollie. When I told the Eorgans (who never turn down an opportunity to get outside), it became a date with Sunny Roan.

We had a great time hiking about 4.5 miles up a backcountry trail on Grandfather Mountain. Let me tell you, I was feeling my near-month of inactivity and eating too much towards the end of the trail! Also, since I blew out my hiking boots about a year ago, I had to go in old tennis shoes, which aren't really that supportive when you've got a 40+ lb backpack on (25lbs of Christopher + necessities and pack weight). Cort did one better though, because she hiked the whole trail without socks! Gotta love the stuff you forget when you're trying to get a kid ready to go anywhere.

The weather was perfect, the company was great, and Christopher literally NEVER STOPPED TALKING for the entire trip. It was amazing. He's just got a lot to say! I also got about 5 points of self-esteem for packing everything Christopher needed without any help from Rachel. I did forget to pack him dinner, but thankfully Daddies are allowed to feed their sons french fries and a milkshake for dinner at least once a year =).

I know Rachel would have had a blast with us, and I can't wait to be able to get outdoors as a family (of 4!) soon. It's a big part of our lives that is otherwise just on hold like everything else right now.


Cort feeding Sunny something orange.


















Christopher and Daddy take a break on a rocky outcropping.


















The point where we stopped because we still had 1.7 miles to go to the summit and it was already 6:30 at night. Note the father and son hiking sticks. Christopher loves his.


















Everytime we came out to a clearing on the trail, Christopher would exclaim, "Gorgeous! A nudder one gorgeous!" And yes, there was lots of parental supervision up on the rock. The kids loved climbing all over it.


















Meanwhile, back at the NICU....


We had another tough weekend with Kaela. After doing a lot better with the blood transfusion, her IVs started failing again, and it took awhile to get one in her arm (I stayed and watched the whole thing on Saturday night after we got back from hiking). She is doing better today, but pretty lethargic and sleepy in general. All of her numbers are great (sats, heartrate, billiruben, hematocrit, etc.,), but I think she's just worn out from everything. We're hoping as she gets back on full feedings, which she should tomorrow, that she'll start feeling better. We haven't been able to hold her very much, either.

Despite all this, Kaela passed two important milestones today! She now weighs in at 3lbs and took 5mls of milk from a bottle this morning. She amazes me as she continues to fight and as God continues in his provision for our family.

We are definintely tired, but we're hanging in there.

--Andy