October 3, 2006
Dear Friends and Family,
Yesterday, one of our precious nurses shared with us how fortunate we are to have such a wonderful support network. Our family and friends have been (and continue to be) devoted and steadfast. Alison’s primary nurse mentioned that babies with the best family support rarely have such faithful family and friends. As the weeks continue to multiply, most people lose focus – but not you! This is a long road, and we are so very blessed to have you along for the journey. We thank God for you!
We must apologize that our updates have not been as regular as we would like. We have been trying to work more. We have also been fortunate to have several family members and friends in town to visit.
Langston’s parents, Grandmother and Granddaddy, live four hours away in Bossier City. It has been such a blessing for us that they have been able to drive down almost every other weekend to visit. Alison is their first grandchild and it is very hard for them to see her struggle.
Their unconditional love is evident when they gaze upon her sweet little face. Alison is blessed to have them in her life. Granddaddy and Uncle Doug came down this past weekend for a visit. It was exciting that Alison was feeling good and spent some valuable awake time gazing into her grandfather’s eyes. Thank you, Lord, for all the special moments you have given us.
Alison is visited daily by Stephanie’s parents, Ma-mere and Pa-pere. We are fortunate that they live close by and visit often. Pa-pere visits in the wee hours of the morning on his way to work. He says he goes to make sure the nurses are still awake (yea, right!). Ma-mere comes to massage Ali’s arms and legs every day to help mobilize the fluid that collects in her tissues. The physical therapists say this will help exercise her extremities and speed her recovery. Ali loves her daily spa treatment!
Last Wednesday, Alison had her first “field trip” outside the NICU to Radiology for a CT scan. It was quite an adventure to disconnect her from her IV fluids, continuous feeds and chest drainage tube.
She also had to be removed from her ventilator and was hand-bagged (a respiratory therapist steps in for the ventilator) the entire time. The funny thing is Alison always responds well to hand-bagging. She seems to know she is getting extra-special attention!
We were fortunate to be able to observe the test and witness the amazing medical technology and equipment available at Woman’s Hospital and the superb skill of the technicians, nurses and respiratory therapists. Overall, Alison’s excursion was uneventful and she was back in her room dozing away within an hour. Thank you, Lord!
We received the initial report regarding the CT scan. The doctors said that no obvious malformations or tumors are present in her chest cavity. Thank you, Father! Alison will have a small biopsy of her lymphatic tissue sometime later this week or early next week to see if any abnormalities can be found through her tissue samples. The pulmonologist told us he will be sending both the CT scan and the biopsy to a specialist at Texas Children’s Hospital for a second opinion. Please pray that the Lord would provide His wisdom and insight to Alison’s pulmonologist and the Texas specialist.
Friday, we met with a geneticist. The neonatologists asked him to look at Alison and rule out any congenital or genetic disorders. His overall assessment was that “you can’t pass on what you don’t have.” As a precaution, her doctors plan to run a kerotype (check of Ali’s chromosomes) to rule out any potential hidden problems. The geneticist explained that Alison’s current condition may be a direct result of the anemia at birth. He believes that her condition is a mechanical issue of the vestibular (circulatory) and lymphatic systems (fluid removal)—healed only by time, proper medical care and prayer. We know the perfect prayer warriors—you! He feels that Alison will not show any long-term problems from her rough start. Thank you, Lord! Please pray that the Lord’s mercy, protection and healing touch would continue to be upon our daughter.
Late Monday, the head nurse made the decision that Alison was stable enough to no longer need a dedicated nurse. In her early days, Alison had two dedicated nurses. Since then, she has had a nurse assigned just for her care (24 hours a day/seven days a week) due to her critical condition. Now she shares her primary with one other baby. Although this is hard to see the reduced attention to our daughter, it is a blessing that reinforces her continued recovery. We truly thank the Great Physician for His continued care!
Today, Alison completed the transition from IV fluids to full milk feeds. She is still on Portagen (a special milk formula for chylothorax - the fluid in her pleural spaces).
We hope to transition her to breast milk sometime soon. The doctors are making changes slowly to help limit any possible effect on her pleural effusions.
Alison seems to be tolerating her feeds well. Thank you, Lord! She has had some problems with spit-ups, but nothing significant. If she continues to do well, the doctors plan to remove the PICC line (IV) from her left leg tomorrow. She has had the line since the day she was born (over eight weeks). Please pray that Alison’s need for IV lines will decrease and that she will not need a new PICC site inserted. Please pray that Alison would be able to accept her mother’s milk soon. Please pray for the Lord’s wisdom to be upon Alison’s medical team.
Alison spent four hours on her tummy today for the first time in her short life. One of her nurses had tried to put her on her tummy before, but she would not tolerate it. Her tummy time allowed for some of the mucus in her lungs to become dislodged and removed. It also seems to have helped her digestion of her feeds and encouraged her intestines to work overtime. It also allowed some of the fluid in her tissues to work loose. We were also able to rub her back for the first time. No sores or redness could be seen; and the pressure sore on the back of her head is almost well. Thank you, merciful Lord! Please pray that the Lord would continue to allow us to place her on her tummy to help with her healing.
Over the last few days, Alison has gone through her typical stages of third-space swelling (the outer tissues and muscles), increased ventilator support, the need to drain her right pleural space and then reduced ventilator support. Alison’s right chest tube continues to stop up due to the thick protein clots that are in her pleural fluid. This requires the neonatologists to attempt to dislodge the clots or completely replace the chest tube. Fortunately, the amount of overall fluid is decreasing. Her x-rays show that Alison still does not need a chest tube on the left side and the amount of fluid on the right side is slowly decreasing. Please pray that Alison’s right chest tube would cease clotting (so any fluid can drain), that her right pleural space would dry up, and that the right chest tube can then be removed. Please pray that the Lord would continue to strengthen and heal Alison’s lungs so they can shine once the chest tube is removed.
Some of the fluid that is draining from her right pleural space has been cultured twice and has come back positive for an e-coli infection each time.
The doctors are not sure how this would be, but are treating her with an oral antibiotic and an inhaled antibiotic. Please pray that the e-coli infection will be healed and will not spread to other areas of her body. Please pray that the Lord would protect Alison’s body from any and all infections.
We are both trying to work more and still try to maximize our time with Alison. This is inhibiting our ability to write more updates, so please be patient with us. We value and desire your prayers for our daughter. We are trying to adjust to a schedule of posting an update twice a week. We are still working out the kinks. J Please pray that the Lord would reveal extra time for us to keep Alison’s wonderful prayer warriors involved and up-to-date with our prayer needs. Please pray that the Lord would give us needed rest and strength.
You remain a tremendous blessing to our Alison; you are a tremendous blessing to us as well. We truly appreciate your continued willingness to stand in the gap for our little Alison. Yesterday marked eight weeks our precious Alison has been with us. We praise our Heavenly Father for each day He chooses to bless us with. With Alison’s continued progress, we continue to find ourselves on our knees in thanksgiving for the Lord’s mercy and kindness, our support network and you.
Blessings to you,
Stephanie and Langston
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