August 25,2009

Here are some updated photos of Deanna. She is growing, about 8 1/2 lbs. She has weekly visits from a nurse, physical therapist, and occupational therapist. It is helpful for now, but I can see how our weekly social calender just got busier. On Monday, August 17th, we had our first ER visit with the little girl. She was taking her antibiotic by mouth (G tube got infected) and decided it wasn't going down the throat b/c it tasted so bad. Super scary! She held her breath, then choked on her med, then before you know it, I am wiping saliva away from her mouth, changing her position, blowing air in her face, and dialing 911. It was an image that I hope not to relive, but I am super thankful for the EMTs from Wellington and PFA for bringing oxygen!! At the ER, we had a chest x-ray done to check for aspiration, but nothing appears that fast and her vitals were good so we got to go home. Since then, we are taking the medicine in her tube and not by mouth. She is nippling some from a bottle, about 5 -15 ml, the same amount that she did in the hospital. It completly wears her out for the day, so we are being patient with this process and can only keep practicing.

Tummy time on the floor. She usually buries her face in the blankets and then falls asleep.

Deanna wearing her new party dress for the open house.

The boys and grandma made this sign for us when we pulled up to grandma's house from Children's Hospital. The kids from our MOPS group signed it and colored it.
Proud new brothers! This was taken August 11th, the day Deanna came home.


August 12th, my first outing to the doctors to get a new cast on. The one they put on is probably my last and then I will wear splints at night.

Here are the boys on the first day of school. Adam is in 1/2 day kindergarten and Casey is the big man on campus in 1st grade. They both get on the bus in the morning at 7:39 am and Casey rides it home after school. School starts at 8:10 am. Adam's favorite thing is to ride the bus and recess. Casey enjoys being at school and does really well at helping out and being good...home is a different story!?!?! Both boys love on Deanna when they are here. They check up on her and ask what and where she is at and if they can hold her. It is very sweet to see how concerned the boys are for their sister. She is adjusting to life at home...sleeping a lot and growing. Deanna sleeps all night or most of the night (10pm-5 am) so mama is thankful for that and everyone is much happier and well off because mama is rested.

The boys in front of the flowerbed. Adam is soooo into the Colorado Rockies right now. We took Brian for Father's Day and the boys loved it! Adam wears his CR cap everyday and wanted the backpack for school that now he shows everyone.

Bus #4 with bus driver Al

Casey and his teacher

Adam and his teacher

Thanks for everyone who has brought us a meal! It is so nice and thoughtful of you and one less thing for me to figure out. I appreciate it very much!

Welcome Home Deanna

Wanted to invite you all to an openhouse tomorrow evening to meet the little girl. We are so blessed by all the support, prayers, meals, and help with the boys--Thank you!! Saturday, August, 15th beginning at 5 pm we invite you over to eat together and visit with us. Please bring a finger food to share and your lawn chairs (& probably bug spray) and we will provide pop, water, and cake and a bonfire. :)

It's a Beautiful Day!

We are bringing our little daughter home today!

What a glorious day.

In an hour, Deanna will participate in another swallow study before being discharged. We want to know that it is safe and comfortable to have her "nipple" her feedings and to keep on practicing the bottle before getting home. If it isn't very good for her, that is okay with me and I will just give her all her feedings through her new fancy gadget, her G tube. It is considered another mouth in essence and we should treat it that way. It can get wet w/ water, it may leak or be like spit up, it needs to be washed and wiped. We are working on transitioning her to a higher volume of milk and less often so at night, she can get a good 4 hour stretch (me too) of sleep, this is a good thing. The whole process of preparing her feed, feeding her, and then cleaning the equipment takes an hour...so hopefully I will get faster and more efficient at this.

Her new feed button on her belly and the pump that gives her the milk.
We are planning a "Welcome home party" for Deanna so look for more details to come. She is growing and beginning to smile at us. We are so blessed to have her and now to bring her home. praise God! More pictures to come...she had a sweet outfit to come home in, but the tubing became disconnected and she got a shower with her clothes on...go figure :)

"Every good and perfect gift is from above..." James 1:17

August 7, 2009

Today is a new day with less clouds in the sky and in my head. Deanna is going to have surgery at 4 pm or so to get a g tube or feed button as they are referred to. We spoke with the doctors this morning and have conferred that the best way for Deanna to get food is through this feed button. She is able to receive my milk through this tube, so I guess me and my "breast friend" will have more time together. Pray for quick recovery. She will be on a ventilator and ivs while the surgery takes place,but hopefully not for long. Poor girl, hasn't eaten all day yesterday while they studied her urine concentration and today she had food at 5 and 8 am, but nothing more until tomorrow morning.

Here are pictures from our stay at Children's Hospital. She had the ng tube taken out en route from Ft. Collins in the ambulance so the nurse let it stay out until her next feed (this was Wednesday).

Here are pictures from our stay at Children's Hospital. Below, these were taken last night in her new crib. She has since been taken off the oxygen and her ng tube is out again.

August 6, 2009

As I write this from the family lounge at Children's Hospital in Denver, I am reminded again how fortunate we are to have had healthy kids and to hug them and love on them as a blessing from God! Thanks Casey and Adam for the privilege to be your mom--I love you to the moon and back.

Deanna is beautiful and growing, but still not completely healed. Yesterday the ENT doctor had said that she had severe acid reflux, today the GI doctor said she did not, nor did she aspirate. Sounds confusing??? Well, it is contradictory so we don't know much more today than yesterday or the day before so tomorrow will be another day of "consults" and "study" and hopefully more answers and steps forward to solving the problem and not just covering up the symptoms.

We do know that from her chromosomal tests that came back abnormal were completely linked to me...that may surprise some of you or not :) We don't know what a "flipped" chromosome means for Deanna or for me for that matter, but we are assured that it can't be all that bad and we are both UNIQUE and SPECIAL and now...bonded.

So...tomorrow will be more of today with hopefully more explanation and understanding. My head is spinning with questions so I need to go write them down before I forget then off to bed.

Hopefully, Brian can remember the USB cord tomorrow and I will post some pics in her new "crib".
Good night!

August 2, 2009

Here are some photos of our daughter and sister from the last couple of weeks. It has been crazy busy with hospital visits, the new dairy headquarters (me), baseball, a wedding, and did I mention that I have 2 active boys!! Thank goodness for friends and family that help out with our life right now. I really appreciate the meals, phone calls, and help!!! Thank you, thank you, thank you!!!

Deanna is steadily taking a bottle at 2-3 feedings a day. It completely wears her out and she only gets 1/3 of her feeding for that hour from the bottle, then off to be "gavauged." This is her tube feeding of breastmilk and where she gets her nourishment. She tends to be awake after eating and looks bright-eyed and bushy tailed and ready for the "real world" only to get snuggled down and wrapped tight in blankets for a cozy nap. Three hours later...repeat. We did have a swallow study down last week only to be told that she does aspirate when drinking so we need to thicken her milk and continue to go slow and watch for signs (coughing, sputtering, can't breathe look). This was the first study and we are pretty sure we are going to get a 2nd opinion to look at the video and give us more explanation as to why it is taking Deanna so long to learn this behavior. From the study, it looked like everything antomically was good, but I'm not so sure...I've requested a 2nd look from an ENT doctor, we'll keep you posted. This week we need to decided what the immediate future looks like for Deanna. Our options are to go to Children's Hospital in Denver to get more answers (prayerfully), stay where we are and have the little girl dictate how long she likes hospital food, or possibly get trained with the NG tube and bring Deanna home. We haven't decided what is best for our daughter at this point, so please pray for direction and wisdom!!

Thanks for your support along this journey.

Today, she is 7 lbs. 12.5 oz-----28 days old and one pound heavier!!

Saturday, July 18th

As I am writing this, I am at the hospital waiting for the lil' one to wake up for a feeding. She is on a 3 hour schedule and we are activly trying to get her to take from the pacifer dipped in milk and suck on it before putting the bottle in her mouth again. We don't want her to get an adversion to things in her mouth so we are moving slow with this process. Please pray that once she figures it out then she will progress quickly so we can take her home...this is the one thing that we are waiting for.

Her MRI results came back normal and her renal exam was also good. THe little one is making slow and steady progress, but progress none the less. Her ears are shaping up like they should, so no more concern for having something physically wrong with them. She currently has her rump in the air with O2 blowing on it b/c of diaper rash...so she has normal issues as well. :)

Update on Deanna

Here is the lil' miss without her cannula! As of now, she has her NG feed tube in and a couple of monitors for her heartrate and pulse. Deanna has new splints on her hands to help stretch her fingers out and have a better range of motion. I think today she is getting her next cast on her leg. SHe is making progress. Today she will have an MRI on her brain to check for its activity level- pray for clear and good results and that it doesn't truamitize her.

Her ultrasound on her brain showed that her blood clot has not changed, but they are encouraged that this is okay. She is up to eating 50 ml of breast milk through the tube and we are continually working to get her interested in taking the pacifer to begin interest in a bottle or breast--then she will get to go home. Continue to pray that she cooperates with eating.

Her chromosomal tests came back yesterday with results that the doctors are still looking at. Pray that the results will be clearly understood by the genetist(?) and that we will understand them as well. Brian and I are getting blood work done to be able to compare our DNA strands against Deanna's to be more thorough.

Here is my baby girl and her proud brothers on Wednesday evening.

We spent Sunday morning at the hospital, then had a family lunch out. Here are the boys and I in front of the entrance to the hospital.

Today (Monday) the night nurse had her dressed in the morning when I got here...it was so good and refreshing to see. She is starting to look "normal" being in clothes and not having so many lines of wires from her body.

Here is Deanna's first cast. They will be changing her cast weekly to accomodate her growth and help fix her club foot.

I forgot to mention on earlier posts...

Deanna's birth weight was 6lbs. 12 oz. We don't know how long she is??

She was "term" at 39 weeks and 2 days.

Her birthday was July 5th.

The reason she is in the NICU was that she was really stressed in labor and for a couple days before. With the cord wrapped around her neck twice, she was deprived of the good stuff for too long, that is why the doctors are checking all possible things.

Deanna Nicole -Part 2

Just a side note---read previous blog first to get the right order of events.

After going to the recovery room for 1 1/2 hours, I was taken to see Deanna. She was all hooked up to lots of different things. We were told she had lots of meconium and that she is getting the help she needs right now.

Here is our first picture together as mother and daughter.

Look at Deanna's hair-we thought it was going to be light and curly, but it has changed a lot.
The boys came by in the afternoon to see her face. The nurse covered up a lot of the cords so they wouldn't be scared for her- Adam's first question when they came to my room- Where is she?

I went to my room and she stayed in NICU.

WE were given lots of information the next time we went to see her, but honestly I can't remember what time it was or what was said...it is all a blur. I spent the next 3 days in the hospital and with each day there was information overload as to what went on with Deanna. I was and am recovering fine. I don't feel too bad considering a c-section is a major surgery. I always trusted God to look after Deanna and I raised my hands in worship that I had another day with her. Each morning that I see her, I praise Him for another day. I thank Him for each feature on her body (working or not) and know that we can get through this obstacle.

After day 2, Deanna has made progress for the better. She didn't have pneumonia, but there are other causes of concern. WE are awaiting chromosomal tests to eliminate any possible abnormalities. Some of the concern of the drs. is that her hands are positioned differently than most newborns. They are in the right spot placement-wise, but she holds them in a relaxed way, not with her fists clenched. They also noticed that her forearms are short, her eyes are really sunken, and her ears lay flat. We don't know if there is a connection between all of these things or not, maybe it is the way she was "crafted." Deanna will also be wearing a cast for the first few months of her life. Her right foot is a club foot, this is a common genetic abnormality and not related to the delivery or how she was laying in utero.

Deanna's heart is normal, her lungs are good, her brain is looking good,but we will see more info on an ultrasound being taken on Monday. She has shown a blood clot in the "air pocket" in her brain. This can be normal for newborns after delivery, but again, we will know more later. We pray for complete reabsorbption back into the brain of the blood.

She currently is being moved to a level 2 room instead of the level 3 where she has spent the last 6 days. This is great news!! She is off the ventilator, off any pain medications, and is currently on cortisone (her body used her supply up in the labor process) and antibiotics. She is being fed through a NG tube-through her nose and straight to her belly, of my breast milk and is doing well with it.

Here is the latest picture: Deanna is off the ventilator-YAY!!!!

Deanna Nicole Kraft

Let's start at the beginning...

On Thursday, July 2nd, I went to my check-up appointment and had no news. I was barely dilated and my cervix was pretty far back, so things didn't look very immediate for baby.

On Friday, I helped sell some of my junk at a garage sale w/ my friends, hung out and visited and about lunch time felt contractions more consistent (10 minutes apart) for the rest of the day. I called the dr. about 4 pm w/ some complaint of sharp pain down low, but was reassured that my cervix was most likely dropping b/c it needed to in order for delivery to get closer. There was no change in my contractions. We went to supper at Olive Garden(tried it Susan:))--it was sooooo good and the closest the contractions came were 7 or 8 minutes apart,but most of the time they were 10. I felt like nighttime was going to be show time so I packed my bag for the middle of the night rush- that is how both Casey and Adam began their debut. I slept really good, got up once to go potty and fell right back asleep. The next morning, I was a little disappointed...

On Saturday, the 4th of July, the boys and I went to the Wellington parade and then headed home to pack the car for camping and a rodeo on Sunday. We got up to the Maxwell Ranch (CSU's summer pasture) about 3 pm and sat around during a rain, ate supper under a tree, then dried up by the fire, roasted marshmallows, and lit off fireworks. Brian and I stayed up until 11 drying off the only pair of jeans and boots that I brought for the boys by the fire and then called it a night (so we thought).

2:30am- Got up to potty in the woods, fell back asleep between contractions. They were about 7 minutes apart. I was debating whether to pack it all up or wait until they were 5 minutes apart to make the journey back to town. I started watching the clock...

4 am- Felt that I may not have "drip dried" enough...got up to make sure and WHOOSH! I felt a feeling that I had yet to experience. I waddled to the outhouse, then came back to tell Brian, "It's time to go!" We loaded up the sleeping boys, and all that was in the tent and started the bumpy drive to the highway in about 20 minutes. THe drive down 287 usually takes 1 1/2 hours, but Brian kicked it up a notch and we arrived in Fort Collins in about 45 minutes. My contractions were still only 5 minutes apart and not to painful so we took the boys to his parents' house, stopped at home so Brian could change out of his campfire clothes and then headed to the hospital.

5:45am- I am admitted to the hospital and shown my room, asked to leave a sample-What??? Apparantly she wasn't told my water broke and for the past 2 hours I have been leaving samples on everything. Another nurse begins the admission process, but is quickly distracted by my answer to the color of the water leaking from me. She checks it out and then moves quickly into action upon realizing that there was meconium involved. My contractions progress...it hurts...after about 10x breathing through, more nurses come in to help me w/ changing positions. Deanna's heartrate was "decelerated" after each contraction and took longer each time to get to "normal". They brought in the ultrasound machine to check her position and reasssured me that she was head down, but must have the cord around her to have such a slow recovery after each contraction. Another one...I changed positions again...this time her heartrate went to 85...another one...etc. My doctor was now present along with my closest nurse friends-all 7 of them--and it was decided that the cord was definetly wrapped around her. They checked me again, I was only a 5 with contractions 4-5 minutes apart. Did I mention that I really did not enjoy having my water broken? It is a gross feeling-trust me and I kept getting fresh bedding underneath me and still was complaining.

THe next thing I know a different dr. comes in and discusses w/ my dr. that a c-section is the safest way to deliver Deanna w/o compromise. I signed some papers...they talk to Brian...and off I am being rushed down the hospital corridor into a meat locker! Within minutes my legs are numb and my toes are tingly and the drs. ask me if I can feel that? It was the initial slice into my belly. They deemed it safe to bring Brian in now that I can't feel anything. hmmm??

I was awake during the c-section and was making some jokes. Word got out that I was camping and sleeping on the ground just hours ago and the drs. were poking fun at me/us. After some time, they pulled Deanna out and reassured me that they didn't want her to cry. There was a lot of meconium in the placenta and they needed to clean her out first. The cord was wrapped twice around her neck and once around her shoulders. We were told that she probably would have pnemonia b/c of her environment. She was rushed away and I lay open in a meat locker.

the last 3 months...

My dad and sister come for a visit over our spring break. It was a fun weekend.

Casey lost tooth #6.

Adam and Duke--it is a love/hate relationship at this point.

Easter 2009: After spending the 3 days before Easter being very sick (mama talkin) we had a very low-key Easter celebration. For lunch, we went to Texas Roadhouse and came home and took naps. The next weekend, we had a egg hunt with our extended family and a traditional Easter lunch.

My handsome boys!

Vacation Bible School at Wellington Community Church, June 1-5, 2009 Casey and his friend, Libby at snacktime.

Adam at the closing ceremony.

Casey celebrated his 7th birthday at the rollerskating rink with his good friend, Madison, who is 10 days older and their buddies. We had the rink to ourselves for 2 hours and enjoyed cupcakes and drinks. I can't believe my "baby" is 7 years old. He is grown into a boy who is kind, sensitive, a good friend, a great athlete, and always up for an adventure! I am so proud of you, Casey!!

Brian and Casey on skates--who would've thought???

Madison and Casey before blowing out the candles.