August 30, 2006
Dear wonderful friends and family:
I am writing this update from inside the NICU. This place is a world of its’ own. We could not ask for better care and attention for our little Alison. So many wonderful people are providing around the clock care for our angel - and they really work as a team. She has been seen by nine neonatologists, two cardiologists, two radiologists, two neurologists, and one endocrinologist. She has numerous respiratory therapists and nurses with her around the clock. Alison has the special privilege of having seven primary care nurses. These are nurses who specifically choose to work with Alison every chance they get. Please pray for these wonderful women who not only provide exceptional nursing care, but also act as second mothers – allowing me to get much needed rest.
Last Tuesday we had a big change in the NICU – we moved! The first two weeks of her life, little Alison was in an area called a “pod” that has spots for approximately six babies. As time progressed, the pod became noisier and the doctors recognized that Alison needed a location with less outside stimulation. That was when they decided to move her to an enclosed isolation room in a different area of the NICU. It took six nurses, therapists, and doctors (with several on standby) to move Alison with all of her equipment. What an ordeal! However, this has been a wonderful change for both Alison and us. The nurses can now control the outside noise by closing the sliding glass door and the lighting can be adjusted as needed without affecting other babies. The private room has also allowed us to spend more time at the hospital physically in the room with Alison, helping to assist with her care.
In addition to the move, we have had several other changes in the last few days. First of all, Alison is on another round of antibiotics to try to help fight her infection. Thanks to your prayers, recent tests have shown that her white blood cell count is gradually declining. The doctors have removed the infected umbilical line and are relying on other lines to test her blood gasses. Tests from the other IV lines are not as accurate and the doctors now rely on her monitored oxygen saturation levels. The neonatologists would prefer to have another location from which to draw her blood; but despite valiant attempts, her swelling has prevented them from inserting another arterial IV line. Please pray that a future attempt to insert an arterial IV line will be successful.
Late last week, an endocrinologist was contacted because of some possible problems with her thyroid. The doctors believe this may be a result of the swelling in her little body. Alison is now receiving medication to help regulate her thyroid levels. Please pray that her abnormal levels are only temporary and the medications will help to quickly resolve the problem.
Alison’s swelling has been the focus of many of her doctors. The cardiologist and neonatologists feel that her progression is being slowed because of the weight of the fluid on her chest and around her lungs. They have begun aggressive albumin and lasix therapies to help “flush” her system. Thus far, attempts have been quite successful and thanks to your diligent prayers and the Lord’s mercy, she is becoming smaller and smaller. Alison’s fluid output has been so great that she was urinating around her catheter and her doctor decided to pull it out earlier today. Praise God for His answer to our prayer and please pray for her continued diuresis.
Friday afternoon the neurologist examined Alison and made plans for another EEG later this week. She said her physical examination was not very useful due to Ali’s continued swelling and sedation. However, she was pleased with reports from the nurses that Alison is responding more to outside stimuli such as gagging when her ventilator is suctioned, grasping at our fingers, and tracking with her eyes. Please pray for continued neurological healing for our little Alison.
Alison has been weaned off of several of her medications, particularly those that keep her sedated. Unfortunately she is having trouble calming herself when she is aggravated and she has had several scary episodes where she dropped her oxygen saturation levels to lower than acceptable levels. Please pray that Alison will be able to adapt to the adjustments in her medications and that she will not require additional sedation to overcome the changes.
Despite the hard times, it is so much fun to see her moving around and showing a little personality (even when she is fussy)! This past weekend she gave us all a giggle when she started sucking and chewing on her lemon-flavored mouth cleaning swabs. She was so happy and content that her oxygen saturation levels rose significantly. I was thrilled when the doctor took one look at her with the swab in her mouth and said, “She looks hungry, maybe she is ready to eat”. So starting on Sunday, Alison began to receive the breast milk through an IV that I have been pumping since she was born. As a glorious answer to one of my most fervent prayers, she has been tolerating the feedings better than anyone expected and the doctors are slowly increasing the dosage so she can begin to rely on the feedings for her nutrition. Please pray that Alison will continue to tolerate the feedings and that the nourishment will help to improve her condition.
The doctors continue to try to wean Alison from her dependence on the nitric oxide gas. She responds better each time an attempt is made to turn off the gas, but she is still determined that she needs the smallest dose possible. Alison is now back on one of her blood pressure medications with the hope that it will assist the doctors to “sneak” the nitric oxide away. If that proves unsuccessful, they will try a more powerful medication. Pray that the doctors will be able to fully wean Alison from the nitric oxide and then slowly wean her from the other medications.
Alison continues to be on 100 percent oxygen, which the doctors have tried to lower several times. A concern with such an oxygen-rich mix is that it could damage her little eyes. It seems the oxygen can potentially damage the immature blood vessels within her eyes. Please pray that the Lord will protect her little eyes from any potential trauma.
Our little Alison continues to make small baby steps forward each day. She continues to struggle at times due to her tiny lungs. Between the anemia before birth, the immature lungs (six and a half weeks early) and the stress caused by the oscillating ventilator, our little girl has challenging moments. Yet, she is gaining strength each day and the doctors seem pleased with her overall progress. We are truly thankful to the Lord for each day that she maintains her forward momentum. Please continue to pray that the Lord will touch her little lungs and bless them with healing.
Thank you for continuing to stand in the gap for our precious Alison. You truly are making a difference in her precious life. You remain an important lifeline to the Lord on behalf of Alison, our family and the medical staff (who continue to care for our daughter on a daily basis). From our family to yours, we thank you.
Blessings to you,
Stephanie and Langston
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