Thursday, September 17, 2009
Friday, September 11, 2009
Wednesday, September 9, 2009
Tuesday, September 8, 2009
Kristen was back soon after 8am and spent the day with Aleah. Dr. Dunn returned from her labor day vacation to find Aleah a different little girl. She and others who have watched the progression were amazed. Just as there is no clear reason why or how Aleah got sick, there is also no logical reason why she was able to completely turn around in mere days. Everyone who has met Aleah has been touched by her story and her quick recovery.
Monday, September 7, 2009
Aleah Kathryn is doing great. She continues to make strides toward a full recovery--such a different story than what we were experiencing last week. In just a few hours she will be one week old. It is hard to believe that it has only been a week, for so much has happened in the past seven days. Thank you for those following our story and for the continued prayers. We firmly believe that you all have been a part of making her first week possible.
Today Aleah began nursing, decreased her need for oxygen and spent most of the day in Mommy or Daddy's arms. She is becoming quite accustomed to being held. We are trying to make up for the lost time from her first few days of life when we were not able to hold her. Meme and Papa also got to hold her today.
She is showing her "spirit" more and more. She reminds us so much of Avery (well, and her Mommy, too.) She is fiesty and determined to have things her way. While nursing, she decided she no longer needed her feeding tube and she pulled it out and then proceeded to try hard to get rid of the oxygen cannula. She must have tried 25 times to pull that out, too. When her nurse tried to replace the feeding tube, Aleah pulled it out at least 4 more times while the nurse tried to get it taped in place, until finally Daddy had to hold her hands down. After many trys and through her crys of protest, they successfully got all her tubes back in place! Did we mention it is great to hear her cry! Today was the first time we have heard her cry since just after she was born.
Thank you Dory for helping Alivia and Avery have a great day. We heard stories of playing hide and seek, making cards for Aleah, playing babies and dress up, and on and on.After dinner tonight, Kristen and her Dad went back to the hospital and were thrilled to find that Aleah had been moved to the intermediate stepdown unit. This is still technically the ICN, but is one step closer to home. And, since Aleah spent some of the day without her extra oxygen (while she was trying to pull it off her face), her nurse tonight was going to try an "air" test to see if she would tolerate breathing without any extra oxygen! (Determination ultimately gets you where you want to be.)
Thank you Christa for helping out tonight. Alivia had fun having big girl time with you painting finger nails and doing "girl stuff."
We finished the night with a trip to Krispy Kreme for hot doughnuts to celebrate. Papa was the hero when he walked in with hot doughnuts and of course a couple of chocolate covered sprinkle covered versions for Alivia and Avery. This was a middle of the night tradition that my Daddy started when I was little. Anytime he was out late at night after a rescue call or other trip to Raleigh, he would return with hot doughnuts. I carried this tradition with me through my college days introducing it to many close friends and now Mark helps the cause on occasion when we need a sweet treat late at night. Our girls love it, too! It was another full day and we are all exhausted. Happy Labor Day!
After church, we went to Kristen's Grandma's for lunch (a Sunday tradition), and enjoyed a delicious lasagna made by Kristen's Aunt Patty. We are trying desperately to keep some level of normalcy for Alivia and Avery. You will notice in the pictures above that Avery is insisting that "her baby" be in pictures until "our baby" comes home. Avery's baby even rides in Aleah's car seat in the car! (It certainly warrants a double take when walking beside the parked car--it looks like we left a real baby in the car.) Our hearts sank this afternoon when while playing with her baby Avery asked Alivia, "Livi, is your baby sick. Does she need to go to the hospital?" She then continued, "Mine is." It was precious, but filled us with sadness that our little girls, too, are going through so much.
After our visit at Grandma Polly's, it was back to the hospital. We stayed with Aleah for a few hours. When we got there we were amazed at her progress since last night. Her nurse had removed the ventilator completely and replaced it with a nasal cannula - a definite step in the right direction. Her IV in her hand and one IV in her naval had been removed as well. She had been completely weaned off of her medication that has been keeping her sedated, so she was a bit more alert than any other day thus far. We were able to hold Aleah for the very first time - what an emotional experience for us - it was simply great!!!
Aleah's nurse explained to us that Kristen can start nursing Aleah tomorrow (Monday). Her nurse is not scheduled to work again until Thursday, so she actually said her goodbyes to us since she felt that we will be able to go home before Thursday. Again, it was a great afternoon at the hospital.
We came home, had dinner and took naps. Mark got up around 10pm and decided to go back to WakeMed to visit Aleah again. Kristen wanted to go so badly, but realizing that her energy was all gone for the day (and considering that we had two sleeping girls at home), she decided to stay home so that she could get more rest.
We'll be back at the hospital Monday morning. Dory Johnson, a precious teenage in our church, is going to keep the girls for us on Monday so that we can go to the hospital and visit with Aleah. We will update everyone after that visit.
Thanks again for your prayers.
Saturday, September 5, 2009
Alivia and Avery were so very excited to have Mommy and Daddy home. Meme brought us lunch from McDonald's -- an extra special treat for the girls! We then began the process to transition back into our normal world. After lots of snuggling, naps and unpacking we were soon back on our way to visit Aleah.
Tonight Aleah had continued to make progress. Her ventilator oxygen level was down to 25%. Yes, for those keeping up, that means she only has to come down 4 % before being taken off the ventilator and breathing on her own. We are hopeful that will happen tomorrow! The level of her sedation was also lowered today and our little girl was much more alert tonight. We are thrilled with her progress!
Thank you Lord for giving us such a wonderful gift today. We are getting glimpses of our Aleah being able to come home, happy and healthy.
Additionally, Aleah's urinary catheter was removed this morning - the extra fluid in and around her lungs is gone, and her bladder is now functioning again. The doctor said that Aleah is exactly on the right path and that we can be assured that she will be fine! Praise God!!!
Kristen is being discharged this morning. We're planning to be home by around 1pm today. We're experiencing the feeling of being torn in two different directions at this point - home and the hospital - but we know that Alivia and Avery need to get back on a more regular routine at home. Because of them, going home is a bit easier since we know that they need us, too. Alivia and Avery are also excited to be coming home. But, they have had such a good time staying with MeMe and PaPa (Kristen's parents) and Christa, and we thank them dearly for taking such good care of our precious girls this week. Mark's parents have also helped tremendously this week - they raided the grocery store and brought lots of snacks for us to have, which Kristen then shared early this morning with some friends of ours from our Sunday School class. One of their family members was in labor just down the hall, and they were here all night waiting for their family's new arrival. Congratulations!!!
We are continually amazed with how far away people are reading the blog and praying for us. We read a comment this morning that one reader wrote earlier in the week. She lives just outside of Los Angeles, CA - Staci is a friend of Kristen's from way back when Kristen lived in Valencia, CA. Staci has been following our story and sharing it with her friends and family in California. And to think that only a month ago, I had never visited a blog site, much less posted entries to one.
Our week is coming to a close - it seems like an eternity since we came to the hospital initially on Monday night. We've loved a lot, cried even more, but most importantly have realized that God knew that all this was going to happen. He prepared us all along without us even being aware of what was happening. We will continue to keep everyone posted over the next week as we start the countdown for Aleah's arrival at home. As we say each time we post, thank you all for everything. We do appreciate your support.
Mark and Kristen
(2 of the most fortunate and blessed parents in the world)
Friday, September 4, 2009
"Why did labor start at 37 weeks and 5 days, if her lungs were not ready?" At this stage and size her lungs should have been fully developed.
"Why did a baby that appeared to merely be having a hard time transitioning from the womb to the world, suddenly after 24 hours make a drastic turn downward?"
Her blood tests from Tuesday revealed that Aleah had infection in her tiny body. A normal level would be .1 and her level was 3. Putting all the pieces together, they now believe that Aleah was developing a serious bacterial infection in her lungs before birth. If Aleah had not been born at the moment she arrived, it is very likely that the infection would have fully developed in utero and taken her life before she was born.
You look at a tiny newborn and wonder why God would allow her to struggle...and then you realize that a struggle is a gift, a chance at life, and supremely better than the alternative.
For much of my pregnancy, I had a strange feeling that something was not right. I did not talk about it often, but pondered the origin for months. In the weeks leading up to her birth I commonly used September 1st as a deadline. My plan was to have everything in place and ready for the baby by that time. Why September 1st? I didn't really have a reason, just thought that would be a good buffer "in case" Aleah would make an early arrival and it would give me a few extra weeks to finish up any last minute items. Little did I know that September 1st would be Aleah's birthday!
As the beginning of September approached I was getting very anxious about the birth and the baby's health -- often common in pregnancy, but to a much greater extent than I experienced with Alivia and Avery. I was nervous about everything from our joint family histories of birth defects and stillborns to the severe pain I was experiencing nightly for weeks, the swine flu outbreaks at Duke, and on and on. (Poor Mark...emotionally I needed lots of support.) I had shared my feelings of uneasiness with one of my doctors at my last OB visit. I just really felt like the baby needed to be born...and soon. I felt so strongly about this that I left the visit in tears, since ultimately she did not agree. I didn't know why, but I knew I needed to meet my baby and the sooner the better. Today I ran into the doctor who I had shared these feelings with. After updating her on the events of this week, she mentioned that often when things are not right a mother knows best. I knew. I just didn't realize that I knew. Looking back I believe God has been preparing me and strengthening me for the events that have taken place this week and the hard weeks to come. Even little things like starting this blog, were very important on my to-do list. And for those of you who know me well know that normally I would like to get to such things, but other items would take precedence. I never imagined that we would use this site to update friends and family on the health and milestones of our little one's struggle. Again, to God be the glory, for great things he hath done.
Mark and I are humbled at the extreme outpouring of well wishes, prayers and support we are continuing to receive from lands near and far. We know that Aleah is a gift from heaven and that great things she will accomplish. Her struggle for life is a testament to the grace of God. We hope that all who hear her story receive a blessing and a new outlook.
Please continue to keep our family lifted in prayer. Tomorrow I will be going home, without Aleah. It is hard to imagine and I know it will be a personal struggle for me. But I know who is in control and who holds the plans for my future and the future of my little Aleah.
Thursday, September 3, 2009
Aleah has made a complete turnaround from just 24 hours ago. It is simply amazing to see the difference in our little girl's health. It started about 3am Thursday morning. Kristen and I had tried to sleep, but we both were still full of adrenaline from the series of events of the day on Wednesday. So, we decided to visit Aleah once more before going to sleep. When we arrived in the ICN, Aleah's nurse immediately started talking to us about her progress. Her nurse was so excited!!! Kristen and I started singing to Aleah, and as soon as we opened our mouths, her eyes opened, and she focused her attention on us. Let me remind you that Aleah was still medically paralyzed at this point. I feel like the Lord helped Aleah open her eyes and look at us to simply say through her gaze - Hi Mommy and Daddy...I know that you're here...I can hear you singing...and most importantly, I'm going to be just fine!!!
Kristen and I both felt the peace of the Lord come over us immediately. We were very encouraged by this milestone. Most people think of a milestone as finishing a major goal in life such as graduating high school or college, landing that first job, getting married, etc. For Aleah, though, her milestones are measured in minutes (not years) and by accomplishments that many of us take for granted each day. Each minute that Aleah continues to improve is one step closer to a full recovery.
And speaking of a full recovery - that's exactly what the nurse taking care of Aleah on the day shift told us today - she said that Aleah WILL make a full recovery. In fact, if Aleah continues improving over the next few days at the rate she has been improving over the last 24 hours, then she may have her breathing tube removed by Monday and be home by the following weekend. And to think that some people say there is no God????
Our day continued to get better as visitors began arriving around 10am - some brought snacks for us to eat, others brought infectious laughter, but the most special visitors were our two oldest daughters, Alivia and Avery, and they brought lots of hugs and kisses (and some snuggling, too). Kristen and I started to have the conversation with our girls that we knew would be both hard, but necessary. You see, Alivia is very perceptive, and she had already started wondering why she had not been allowed to see her new baby sister. We bascially told our girls that their baby sister had a "bad cold" and that she needed help breathing right now, but that once Aleah got well, they could see and hold her. It seems that Alivia and Avery were both satisfied with this explanation, and they resumed coloring pictures in coloring books that one of my co-workers brought for them.
The afternoon continued without incident, and I actually left the hospital around 9pm to go get food from The Cheesecake Factory at Crabtree Valley Mall. By now, hospital food is no longer that appetizing, so I left to get dinner for Kristen and me. When I returned, I surprised Kristen with her favorite entree from Cheesecake, and we had a "date" sitting on the side of the hospital bed and eating our food. It is moments like these that I will cherish forever - even in the midst of chaos this week, we made time for each other to talk, share some grilled porkchops, and just relax a bit.
My night ended with a final visit with Aleah this evening. Her nurse informed me that they were again lowering the amount of supplemental oxygen running through Aleah's ventilator based on some very good results from blood gas checks. Again, very comforting news!!!
So that brings me back to my blogging session. Kristen and I have heard from many people today who have read the blog posting from last night - we have even had emails from good friends in Tennessee and Florida letting us know that they are praying for us. Wow!!! Knowing that many people are following this blog now, I want to take the opportunity to say thank you to everyone for your prayers, calls, gift cards to restaurants, and acts of kindness. I have even heard that our house has been cleaned by a very special friend (now member of our family) in anticipation of our arrival back home - you know who you are! All I can say is "thank you" and that we will gladly return the favors in the future.
In closing, I have one last thing to say tonight - God still performs mighty miracles. Believe in him and accept him as your savior (if you have not already), and you will never have to worry about being alone, scared, in a helpless situation, etc. Aleah is proof that God is present and that He has not run out of miracles yet (nor will he ever)!!!!
Mark (on behalf of Kristen as well)
Wednesday, September 2, 2009
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)
Tuesday, September 1, 2009
It has been a very long day. Kristen is doing great, but Baby Aleah has had a tough day. She was sent to the nursery soon after delivery to regulate her oxygen saturation. After several hours she was moved to the pediatric ICU. Mark had a chance to briefly hold her before her trip to the nursery, but Kristen has only been able to rub her chubby little legs, arms and cheeks. Her little head is covered with a hood to provide her the extra oxygen she needs. She is hooked up to several monitors and has an IV for nourishment. They cannot let her eat until her breathing patterns slow.
Her breathing is labored and after multiple visits with her today, we have yet to see her little eyes open. She has been sleeping most of the day, maybe due to the fact that she was awake kicking mommy through the contractions all day--and night--on Monday.
She is very precious and reminds us of her big sister Alivia. She has lots of dark hair with a little bit of blond mixed in. Based on her ability to kick, she will surely have a bit of her big sister Avery's feisty spirit. The two new big sisters came for a visit this afternoon and we had a great time, laughing, snuggling and hearing about their second day of preschool. Baby Aleah had helped Mommy pick out special new "pajamies" and a book for Alivia and Avery. They were able to see pictures of their new little sister, but will have to wait to meet her and give her hugs.
We are blessed to have three precious little girls. Although we know many babies in the ICU are much worse physically than Aleah, it is still very difficult to see your little baby in this way. Please keep Aleah and our family in your prayers. We will update you all as soon as we can. In our haste to get to the hospital, we forgot the cord to download photos, so be sure to check back for pictures in a few days.