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!!