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Laken Jean Holt<o:p></o:p>
Born July 17, 2006-Became an Angel on November 28, 2006<o:p></o:p>
Our Precious Angel, Our beautiful Gift from God<o:p></o:p>
Zellweger Syndrome<o:p></o:p>
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In the early morning hours of July 17th 2006, our wait was over as our sweet little girl was coming to join us. We waited the past nine months just wondering what she was going to look like and excited about her being here with us. Our son Logan, who was six at the time was so excited to be having a sister to play with. My labor and delivery went pretty fast compared to having my son, which was very hard. Laken came very easy and I was amazed at how good I felt afterwards. When she was delivered I never had a worry cross my mind there might be a problem as I had had three ultrasounds done while I was pregnant and all were good. I had taken good care of myself from the beginning as we had planned the pregnancy. Same with my first child he was and is very healthy. I would soon realize something just wasn’t right. She was taken over to a bed after delivery and was given oxygen. They worked with her for a few minutes and the nurse brought her to me to hold. As I held her for maybe two seconds she was starting to turn blue and the nurse swiftly took her and the doctor continued to work with her. She was taken to the nursery and later we got to go see her. She was so beautiful, I just wanted to grab her, kiss and love on her, and take her home. She weighed 7lbs 8oz. As the morning went on we waited for some news from the doctors about why we couldn’t bring her to our room or even hold her and why she was dependant on oxygen. The news we received later that day was not what we wanted to hear. We were told that she had some seizure activity occur and that she could possibly have Down Syndrome. My husband Jimmy and I were devastated to be hearing such a thing. I never realized how serious her condition was. She did not look like a Down Syndrome baby. We thought they were all crazy. This was not happening I thought, I went to the hospital so happy and excited about having her, now my heart was aching for her. I couldn’t believe it. After some discussions about her condition, arrangements were made to have her flown out to Arkansas Children’s Hospital in Little Rock, about three hours away. I checked myself out of the hospital, and as we were coming out of the hospital doors, my baby girl was being flown away from us. Just seeing my baby leaving in that helicopter, when she should be with me was just cutting me to pieces. My emotions were out of control, the drive to Little Rock seem to take forever.<o:p></o:p>
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Laken was in the NICU at ACH for 25 days, during those days I stayed with her as much as I possibly could. What time I wasn’t with her, I pumped milk for her, so she would get the best nutrition possible. They ran so many tests on her. Everyday seems like they would take blood from her. Her little body was considered floppy due to her weak muscle tone and her head had to be tilted to one side or the other in order for her to breathe. We had no answers for the first week. During the second week, they thought they knew what was wrong. I remember asking the neurologist to show me Laken’s MRI scan and to tell me what he thought was wrong and how they would help her. I needed to see it for myself. As we looked and discussed the scan, my heart sank. He said with all the symptoms they had discovered, they thought she had Zellweger Syndrome. I thought what in the world is that, I had never heard of it. I asked, “How bad is it?” He just looked down to the floor and said “Bad“. He would not go into detail, as the final test results would not be ready for about a month. As the week went on, I insisted to know more and found out about the horrible prognosis of ZS. I could not stop crying, it felt like my heart was being ripped right out of me. I thought about our son who was so excited to have Laken and to think we would have to lose her and what emotions he would have. All we wanted to do was to take her home, as soon as possible, so we all as a family could love on her and be with her for as long as possible. The doctors told us as soon as she underwent surgery for her feeding tube and we learned how to feed and give meds to her, then we would be able to take her home. And we did. The day we brought Laken home with us was such a wonderful day even though she was very sick. She was happy and grinning and looking around the house. It was quiet, unlike the hospital noises. She had very good hearing. She knew when you were talking to her or making any noises. We learned lots of things about how to care for our little girl. She was on several different medications. Her seizures were mild, but we had a lot of scary days where she would have apnea spells with them. The pulse ox monitor would go off and we would try to move or rub her to get her to breathe, we always had extra oxygen close by to use if that did not work. We had several times to where she would start to turn blue before we got her back to breathing again. The suction machine was also very needed, her swallowing was not good and we had to suction her frequently. Some days were better than others. During this time we received the final results on her condition, yes it was confirmed to be ZS. I was with her everyday and my most special memories are when I could wrap her up in a blanket, cuddle her real close to my chest, kiss and caress her, and rock her to sleep. I miss her so much. I always love talking to her as I fed her, seeing those beautiful blue eyes looking at me. I can still see those sweet eyes in my mind everyday. <o:p></o:p>
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At two and a half months old, Laken seemed to be getting better, her seizures were very small to none and her breathing was good and had no apnea spells. She seemed to feel really good. She was really alert and looking around a lot. She no longer needed the oxygen and was gaining more weight. We had a lot of good days together. I guess at this time I was thinking maybe she will be one of those who out live the prediction. I just couldn’t think of life without her. It just seemed like a nightmare that I couldn’t wake up from. I guess I was in denial. As I would hold her in my arms, I could not absorb what was going to happen in the coming weeks ahead. She was doing so much better than before. I tried to stay happy for her and keep myself going so I could care for her needs. <o:p></o:p>
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At four months old, she seemed to be struggling to breathe. We thought she maybe had a cold, her chest was a little congested and we had to do a lot more suctioning. She was put back on oxygen after her doctor visit. We had to increase her oxygen level every other day, it was the most it had ever been. I gave her Tylenol for the mild fever and for any pain she might be having. She had been on the oxygen for only a week when our precious little girl my “Sugar” as I called her, was called to heaven. That day I will never forget as long as I live. My heart sank like a rock and my eyes were like a river with tears. My hopes and dreams for Laken were coming to an end. With my husband sitting beside me, I held her in my arms and hugged and kissed on her. As she took her last breath, she giggled out it was followed by a coo sound and at that moment I knew she had seen those heaven doors open for her and she was ready to enter in. Our Laken was a wonderful blessing to us, our family and friends, and our community. I thank God for giving her to us. I know without my faith and trust in God I could have never faced it at all. <o:p></o:p>
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I Love you “Sugar” Laken, your always in my heart and on my mind every second of the day. Our little Angel, we miss you so much. I know your safe up there. We will be with you again. <o:p></o:p>
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Thank you for allowing me to share our Laken with all of you. <o:p></o:p>
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Melissa Holt, <o:p></o:p>
Wife to Jimmy, Mommy to Logan and Angel Laken<o:p></o:p>
Arkansas<o:p></o:p>
