Stillwater, Oklahoma - Mosiac Trisomy 13
Photos by Carrie Chlebanowski

Update 7-12-07
Hello again all,

Well Cliff and I are home with the family. An unexpected turn of events today. Faith was doing very well in her heart rate and oxygen levels in the last two days and had even gained an ounce. She began to desaturate (I think that is the right word) around lunch time today. We were out of her room at the moment and they called me on my cell phone as this went on for about 15 minutes with no improvement.

Cliff and I were able to hold and cuddle her, talk to her, on the vent for awhile and then off the vent. She passed away this afternoon. We had 9 days with her, days full of hope, lots of love, and precious time we will never forget. 9 days more than we expected.

I thank you all for your support and prayers and emails of encouragement (still going through and catching up on them all.... it might take awhile!) I am so thankful for each of you-your children and your stories have been a lifeline for us through all of this.

I am proud and honored to have an Angel to be counted among the many precious Angels in this group.

Most of all though, I still have faith.......
Always and lots of love,

Micayla
mdmoltsau@hotmail.com

- - -

Update 7-9-07
Hi all,
I am at the veterans email center at the hospital. We got checked out on Saturday (Cliff and I) but are staying at a room in the old hospital building( it is called parents hotel and is for nicu and picu parents) for a reduced rate of a regular motel and within walking distance of the nicu.

Faith is still here, alive and fighting. I cant believe its been almost a week since her birth and such a roller coaster. She has omphalocele, PDA in the heart, a head lesion, and has not yet opened her eyes. She is on a vent. A second vent to be exact, something called a jet puff. He lungs are very elongated and the first day and a half she used every muscle in her chest to breathe on her own and just grew tired. She has difficulty keeping her carbon dioxide levels regular. They showed us an x-ray Thursday night and you can see her lungs are very long due to her organs being outside( the omphalocele holds liver and intestine) and they cant see the diaphragm due to the omphalocele and have no idea the strength of its function or its placement. They cant tell us if she will be able to survive ever off of a vent so we are waiting to see how she grows and to see if she gets strength. It is such a difficult thing to wait and wonder and hope. We have visited with the chaplain for counseling and he got in touch with our church and they came to visit and pray with us. The hospital staff has been AMAZING. Every doctor, every nurse, every resident, fellow, and attending have done everything they can to help Faith, to support us, and to honor our wishes for our care. We are pleased with this, and it encourages us to have such a caring staff.
I don't have email access regularly, this is the first time I have been on a computer in a week.

I will do my best to update you, either myself or Fawn will email to the message board.

Tomorrow we will celebrate Faiths one week birthday!
Thank you all for your prayers- and please I ask that you continue to lift Faith up. She is such a precious little girl, a fighter, and we hope the best for her, but don't want her to suffer much pain- so it has been a difficult balance.

Much love,
Micayla

- - -

7-5-07
Greetings from Oklahoma City. My name is Fawn, and I am a friend of  Micayla and Cliff. They are still in the hospital, but were anxious to update you all on Baby Faith.

Faith Constance Carlson was born at 1:05 p.m. July 3 in Oklahoma City. She weighed 3-pounds, 2-ounces and was 14-inches long.

She is doing well. As of July 4 she was on C-pap oxygen, but breathing on her own. Her colour is a healthy pink and she has a beautiful little head of hair. In fact, she's just beautiful.

I spoke with Micayla this morning, and she said tests on Faith's heart came back with optimistic results. There are no major defects beyond PDA, which, to the best of my understanding, is something that can shrink in babies -- but since Faith is small and premature, she has been given medicine to help with this.

I was blessed to see Micayla interact with Baby Faith in the NICU, and Faith was immediately calmed by her mother's presence and touch. Cliff is such a proud daddy, and he, too, has been able to hold and interact with his little girl.

Micayla is doing well after her C-section, and Cliff is right there by her side, doing well.

On behalf of Cliff and Micayla, I want to thank you all for your prayers and well wishes. I know it means a lot to them. Also, I ask that you please hold them there.

In closing, I want to say Cliff and Micayla are handling this with a spirit of faith, grace and optimism that truly touches my heart. They are amazing people.

I am not entirely sure how to work the message board, but I am leaving my e-mail address at the bottom of this page, and if anyone has any messages they'd like passed on to Micayla and Cliff, I'd be more than happy to print them out and take it to them. They will probably not be leaving the hospital for a few more days.

Fawn
 

- - - -

Update: 6/19/2007

The Dr. has now placed me on home rest. Today I am exactly 32 weeks and counting! Faith's omphalocele has continued to grow, it is now over 20 cm in diameter. At our appt. a week and a half ago( June 8th), her growth had continued to decline and she was diagnosed with IUGR. She was down to about the 4%ile and had declined each week for the preceding 6 weeks. ( She may be such a little thing- but I know she is a fighter!) Her kidneys also had a small amount of fluid on them and her amniotic cord flow was not very good. This was when the Dr. decided that I needed to be on rest at home.

I was also diagnosed with Gestational Diabetes and have started a meal plan to control my blood sugar. The Dr. also talked with us about Faith's stability in the womb and if the chances would be better for her outside the womb. He said we would try to make it to 34 weeks, based off of weekly appt.'s to check her growth and biophysical profile. He prescribed a steroid shot( 2 doses) to get her lungs matured so she could have a better chance to survive outside the womb.

Thus far, the meal plan is working without having to take insulin. It would also appear that the bed rest is working because Faith had improved cord blood flow at our appt on June 15th. She actually scored an 8 out of 10 on her biophysical profile! Go Faith!

The days have really seemed to slow down. We are anxiously awaiting the day that she will arrive. My mother, who is in Kuwait as a CIV serving at a base, has been contacted through the Red Cross in an attempt to get her home in time for Faith's birth so that she can help me. My Father and Stepmother and my Husbands Parents are all waiting for the word that it is time so that they can come help.

We will continue to keep you posted! Thank you for your support and encouragement!