Wednesday, September 2, 2009

The Toughest Day of My Life

Aleah had a rough night. Kristen and I saw her around 9 pm last night and then Kristen visited her again around midnight. Everything was about the same as it had been during the afternoon. The nurses were hopeful that Aleah would remain stable and have a good night.

Unfortunately, at 4 am the nurse arrived in our room to tell us that Aleah had taken a turn for the worse. All the progress she had made in the first 24 hours of her life had reversed. She was a very sick little girl.

Aleah had developed a pneumothorax (a small tear in the wall of her lung resulting from her rapid respiration rate). The tear allowed air from her lung to escape into the cavity surrounding her lungs, which created an air pocket. If the air pocket were to burst, her lung would have collapsed. Fortunately, the air pocket did not increase in size over the next few hours.

The neonatologist ordered an echocardiogram (an ultrasound of the heart) to determine if there were any heart defects – this was of particular interest considering my cardiac history with congenital aortic stenosis. The results indicated that, thankfully, Aleah did not have any congenital heart defects – what a great praise!!! It did, however, show that she was suffering from Pulmonary Hypertension (PH), which means that the blood vessels inside her lungs that bring blood into and take blood out of the lungs were constricting so much that blood flow was not occurring.

The question then became what to do to treat the PH. The neonatologist suggested that they insert a breathing tube down Aleah’s throat into her lungs so that she could be fed 100% pure oxygen from a respirator.

Before this happened, our Pastor, Dr. Harvey Whaley, visited the Intensive Care Nursery with us to see Aleah. Kristen and I sang “Jesus Loves Me” to her through our cries. Dr. Whaley placed his arms around us and comforted us during those precious moments. The next time we would see Aleah, she would have the breathing tube down her throat, would be heavily sedated and would be medically paralyzed. Dr. Whaley then prayed for Aleah, and as soon as Dr. Whaley began his prayer, Aleah calmed right down as if his voice soothed her. She had been breathing so hard that when she would inhale, the imprint of her ribs could easily be seen through her skin. It was at this very moment that we knew that the power of God’s mighty healing hand was upon Aleah – we knew that she felt the Lord’s spirit just as we did. It was a moment that Kristen and I will take with us the rest of our lives. It was at that moment that I felt that whatever the outcome, God had a plan and that we had to trust in Him to do what was best in this situation.

Kristen and I waited in our room while Aleah had the breathing tube inserted. Kristen pointed out a passage in the Bible – Psalms 61. She opened her Bible to this passage earlier today, and this is what it says –
“Hear my cry, O God; Attend to my prayer. From the end of the earth I will cry to You, when my heart is overwhelmed; Lead me to the rock that is higher than I. For You have been a shelter for me, A strong tower from the enemy. I will abide in Your tabernacle forever; I will trust in the shelter of Your wings. For You, O God, have heard my vows; You have given me the heritage of those who fear Your name. You will prolong the king’s life, His years as many generations. He shall abide before God forever. Oh, prepare mercy and truth, which may preserve Him! So I will sing praise to your name forever, that I may daily perform my vows.”
This passage spoke to us both deeply. Over the past few weeks we have been preparing for the children’s choir season and the music theme is “God as a strong tower.” Immediately upon reading the scripture our minds were filled with the tunes from our music. We were comforted and calmed with the words from these children’s songs that not only Mark and I have memorized, but Alivia and Avery sing daily, too! This music is all the girls have wanted to hear in the car, over and over! Again, we can see how the Lord has been preparing us for this very moment. We are humbled. God can use anything, even children’s music, to help provide peace to those who have faith.

We called my cardiologist at Duke to discuss what was going on and to get her opinion on Aleah’s treatment plan. Dr. Armstrong agreed that Aleah’s treatment was on target and that she felt strongly that Aleah’s lung disease was in no way related to my congenital heart disease. We also determined that Dr. Armstrong and the neonatologist at WakeMed went to medical school together at Duke, were great friends and played on the same intramural basketball team while in medical school. We could begin to see the pieces of this whole puzzle falling into place. We also realized that the Duke cardiologist on site at WakeMed was Dr. Armstrong’s fellow, which meant that he was trained by her. Again we felt peace and the Lord’s hand at work. All of these “coincidences” were more than just that – we again could see God’s plan unfolding before our eyes – they were not coincidences at all!

Meanwhile our family began arriving to offer us care and support. Aleah’s breathing tube was placed, and the neonatologist inserted surfactant into the breathing tube. Surfactant is a naturally occurring substance in the lungs that allows for lubrication of lung tissue when the lungs inflate and deflate. Aleah’s body had not produced enough of this substance. The hope was that after this treatment, her lung function would increase – unfortunately, it did not. Aleah had no response to the treatment. We were absolutely stunned and did not know what to expect next.

The neonatologist came in to our room with a facial expression that told everything. Aleah was in dire trouble, and she needed help fast if she was going to survive. Her options for a positive outcome were running out. Dr. Dunn explained that there was only one remaining option for treatment at WakeMed. If this final plan did not improve her breathing , the final option of treatment that could be offered was to quickly transport Aleah to Duke Children’s for advanced neonatal life support. This life support, known as ECMO, is only offered at a handful of hospitals in the United States, and Duke Children’s is one of those hospitals. The treatment would consist of removing Aleah’s blood from her body and cycling it through a heart-lung machine to both filter out the blood and replace the carbon dioxide with oxygen. The machine would then pump that blood back into Aleah’s body for circulation. This would give Aleah’s heart and lungs a chance to rest, but the treatment would also potentially result in many long-term side effects. Kristen was devastated just hearing the words. ECMO is not something she ever imagined hearing in the same sentence with her child’s name. Having seen children on this advanced life support and knowing how very critical a child must be to receive this treatment was more than she could handle. Thankfully, at just the right moment Vanna Fox and Jim Kelly, dear friends of ours, arrived with hugs and support. Jim and his wife Tara have been through similar situations when their twins were born prematurely at Duke. Just seeing Vanna and Jim reminded Kristen of all the miracles that happen daily and the families that find a way to get through it.

While precautionary transport arrangements to Duke were being made (by now, it was 11 am), Aleah received that last and final treatment option at WakeMed – infusion of nitrous oxide into her airway. We needed a miracle. The nitrous oxide would relax the blood vessels and tissues in the lungs so that normal blood flow would start. We prayed so hard that this would work, and by the grace of God and a very large miracle, it did begin to work!!!

Immediately, Aleah’s prognosis went from imminent death, if her condition did not improve quickly, to a long and fulfilling life. Praise the Lord!!! She was certainly not out of the woods, but she was on her way to recovery.

The afternoon continued – we had many visits (too numerous to even count) from family and friends, which helped keep our spirits up throughout the day. Aleah was on at least four known prayer chains from faithful prayer warriors at multiple local churches. E-mails were flying as friends and family were realizing what a great need Aleah had for medical care and the healing power of prayer.

By 5 pm, Aleah’s need for supplemental oxygen decreased from 100% early in the day to about 65% - the goal is to get to 21%, which is the oxygen saturation rate of normal room air. It was at this time that Kristen and I had an overwhelming sense of peace come over us. We trusted Aleah was going to be okay. That’s not to say that her recovery will be overnight. She has a somewhat lengthy recovery process ahead of her, but we have no doubt that she will continue to get better!!! The next 48 hours are critical and will determine Aleah’s ultimate prognosis.

This day has been the hardest day of my entire life – I have cried uncontrollably while almost hyper-ventilating, have consoled my loving wife as she has done the same, have passed the point of extreme exhaustion and have given God the glory for it all. I have nothing to complain about – I have my little baby, my wife and our two other girls (Alivia and Avery) – that is all that matters right now. I am so blessed!!!

So, as I close this very long posting, I thank you for your prayers today and would ask that you continue to pray for Aleah and for our entire family. We need your love and support more than you could ever know. Our lives are truly blessed and enriched by your thoughtfulness and concern!

We Love You.
Mark (& Kristen)

1 comment:

  1. Mark and Kristen,
    My name is Melanie Simpson, I am Karen Shuter Woelke's sister. Karen emailed/called me this morning to fill me in on your sweet Aleah's situation and boy, how big and great is our God?! Jeff and I just had our 4th child on 8/5/09, Ryan Kemp, at 35 weeks. While he seemed fine for the first few hours, it became apparent that he was in respitory distress. He was sent about 20 min. away to a level 3 NICU where he remained for 3 weeks and 2 days having been on a ventilator, feeding tube & more. We were just discharged last fri. Reading you post was so much like filtering back through our own emotions, fears, hopes, and conversations with God. It is so difficult to feel at once helpless to do anything for your child and at the same time find hope in God's promises and plans. Jeff and I are praying for you all: healing and comfort for Aleah; peace and assurance for you and Mark; for your other daughters, no fear and that they could feel well cared for while you two spend the time you need to with Aleah. I pray that you would do as Lamentations urges us, "Arise, cry out in the night, as the watches of the night begin; pour out your heart like water in the presence of the Lord" - God is big enough to handle our questions, anger, fears, sadness, doubt, all of it. Praying for you all! Melanie Simpson