<h6>(jump to updates: <a href="#upd20050117">January 17, 2005</a> or <a href="#upd20050402">April 2, 2005</a>) </h6>
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Leah Hagedorn was born on December 18, 2004 at 10:32 in the evening at St. Elizabeth Hospital in Covington, KY. She weighed 6 pounds and 3 ounces and was 20 inches long. Her parents are Andrew and Stephanie Hagedorn who are both 28 years old. Leah came to us about 4 weeks early and had a difficult delivery with her heart rate dropping to the low 80's every time mom pushed. She immediately started retracting and desating so the doctors thought it best to send her to the NICU for further evaluation. At this point we did not feel anything was wrong. I went with her to the NICU while mom rested and could see the concern on the nurses faces which was hard to bear emotionly especially given the lack of sleep from the past 24 hours of labor. At about 5:00 am on December 19th, the doctors thought it best the Leah be transferred to Children's Hospital in Cincinnati. Now we were really concerned.
While at Children's, Leah continued to desat and drop her heart rate, and it was thought that she was having seizures. They started her on Phenobarbital to help with the seizures which seemed to work. The next couple of days brought so many tests on Leah to try and find out what she had. An ultrasound of the head showed that she was missing her corpus callosum, but we were told was pretty common so we should not be too alarmed. Next, several EEG's were done which showed that she had slower than normal brain activity. We were starting to become alarmed but still had hope. Next, and MRI was done on her head. The MRI revealed that she indeed was missing her corpus callosum, but also had severl other abnormalities which included: an underdeveloped left front ventrical, problems with both her white matter and grey matter, some cysts and cortical dysplasia. You can imagine our concerns now as parents, but again we still had hope that all would be fine. Finally, Leah had an eye exam on Monday, December 27th, 2004 which showed the lacunae on the retina as well as some mild cataracts in both eyes. At this point they doctors had a pretty good idea of what Leah had and it was time for our meeting with all the doctors. On Wednesday, December 29th at 2:00 pm our angel was diagnosed with Aicardi Syndrome. You all can imagine our shock especially knowing the hard days to come still since Leah is only 2 weeks old.
Leah is not at home yet and probably won't be for several more weeks. The doctors want to do a sleep study on her and will most probably have to a G-tube put in before she comes home to us. We are being told on paper it looks as if she has much greater brain abnormalites as most Aicardi girls have so her time with us might be limited. This is hard for us to bear but we are taking it day-by-day and dealing with it. The good news in all of this is that we know that we can have a family some day and our chances of having another problem are extremely low. Right now our time with Leah is limited and precious and somehow we still remain hopeful but also feel that it might be best for God to take her and end her suffering. We don't know how many of you keep your strength and hope but I am sure we will find it in Leah once she is home with us.
Please keep us and Leah in your prayers as all of you are in ours.
Also, please feel free to e-mail us, it would help!
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UPDATE: 01/07/2005
Hello all who have taken such an interest in Leah's story. Stephanie and I are grateful for all the support, love, and kindness we have received in the many cards, phone calls and e-mails. This has been an extremely hard time for us, but we are now comforted in the fact that we know how the story is going to end. I must warn you, that it is not the end we were hoping for but we know now what we have to do and we felt that now is the time for all to know and pray with us.
Leah had a sleep study done earlier in the week to determine the causes of her apnea (the spells when she stops breathing and desaturates her oxygen levels). Going into this sleep study given Leah's condition we knew that there was no good news that would come out of it, what we did not know was what kind of decisions we, as parents, would have to make. In that fact alone, the worst news we could get from the doctors would in fact be the best news for us for the long-term because we would not have to make a difficult decision. Let me explain. Apnea could occur for several reasons, but the two primary reasons the doctors were looking for were:
1) She has an obstruction in her trachea (sometimes referred to as a floppy air way).
2) Her brain is not sending a signal to her lungs to breathe at times.
Under the first scenario, this problem could be solved by doing a Tracheostomy which is a procedure to put a tube down her throught and which would lead to a hole in her neck in which she would breathe from. Many children have this procedure done for either the short term or for life. It is a hard scenario to bear in the sense that you have to take into consideration the quality of life to come after a trach. I really don't want to get into that right now.
Under the second scenario, there really is nothing you could do to fix this problem other then putting Leah on a ventilator for her life.
Leah's sleep study showed that she had severe blockage and a severely underdeveloped trachea so for her to live, we would have to have a tracheostomy performed on her. However, her study also showed that she does indeed have central brain apnea which means her brain at times is not sending a signal to her lungs to breathe. The doctors instructed us that even if we went ahead and did the tracheostomy it is most likely that her brain issue would esculate further and ultimately it would not matter. Like I had said before, the worst news from the sleep study has turned out to be the best news for Stephanie and me. We do not have to make a hard decision about putting Leah through her first of what would be many possible surgeries to come. God has made the decission for us and is telling all of us that she is in his hands and care and that he will take her home.
The decisison Steph and I face now is whether to leave Leah at the hospital under a DNR order or to bring her home. We have discussed this in great detail and feel it is best for all of us to bring her home under hospice care. Our thoughts for this are that when she finally passes, we want to be with her here at the home we made for her, the home she has never seen, versus us getting a phone call from the hospital that she is indeed gone. Also, we want her spirit here in this house with us even though we know her spirit will always be with us. Also, she has touched so many people already and they have not even met her. Only a limited number of family members have even seen her face and touched her little hands. At home she can meet everyone and hopefully everyone who meets her will feel her power and love like we do and hopeully also feel the comfort in their hearts that she gives to Stephanie and myself. Leah truly is an angel sent down from heaven to help all of us and to give all of us a better understanding of ourselves, our lives, our families and friends, an appreciation of other people's suffering but most importantly a stronger connection to God. I know personally that I have struggled with my faith over the past many years, but the struggle has ended. You can just look at her face and touch her little hands and feel God's presence. He is indeed with us and Leah and I know now in my heart how important it is to believe and to let God into your heart. It is the only way to deal with this kind of situation and the sooner everyone does, the sooner the pain will begin to go away.
We don't know how long Leah will be with us and we will do all in our power here at home to help keep her here, but ultimately we know that the end is coming and that she will endure far less pain and suffering in her life than so many others.
This will probably be our last update for some time but please remember to keep us in your thoughts and hearts but most importantly pray for Leah to help her on her journey back home to God where she was meant to be all along.
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Update April 2, 2005:
First and foremost, thank you all who continue to pray for us and continue to tell others about Leah and our family. Your prayers have been heard and have definately helped all of us in this time of our lives. I apologize that it has taken so long for an update despite the many requests for one. In this week particularly it is amazing how much we are surrounded by death, controversy, but ultimately God's love and grace. Whether it has been the controversy surrounding Terri Schiavo (which we personally know hits all parents, friends and families of handicapped children very deeply), or the current situation regarding the coming passing of Pope John Paul, we see the power of love and prayer and the positve effects they can have on all of us. All Stephanie and I have do each day is look at our beautiful daughter and know that we are truly blessed and loved despite what pain it will ultimately bring us. The happy news in all of this is that sure there will be pain and sorrow and suffering but the greater gifts that Leah has given us more than make up for any pain and suffering to come. Leah has truly changed us and how we look at the world, and how we look at others and how we feel about the importance of God and Love and Family and Friends are in all of our lives. Anyone who has seen her, read about her, or held her knows that there is something greater at work and we are truly proud parents of a daughter that has already touched so many lives in such a short time.
Any way, let's fill all of you in on the last few months. From the moment we have brought her home, we have seen many positive changes in Leah. She has already reached several milestones that doctors thought she would never do. She is currently off of all oxygen, feeding tubes, and monitors. For all intensive purposes, one would never know anything is wrong with her. We are somewhat of a normal family right now. Leah has travelled to church on several occassions, has made multiple trips to both grandparents houses, has visited both of her great grandmothers, and most recently just returned from a two day trip to see her great grandmother on Stephanie's side and great grandfather. We really do not feel limited at all by her and are comfortable going about anywhere with her, whether it be the mall on many occassions or out to dinner. Leah has been gaining weight and currently weighs about 10 pounds and 3 ounces. This is remarkable in itself because doctors never thought that she would gain much weight and she has gained about 4 pounds in less than 4 months. Yesterday was a big day because our impression from one doctor was that she probably would not live past March and she is living and doing extremely well. We don't know if she is having seizures yet but are not too concerned about them right now if she is having minor ones. We plan on going in for a check-up in a couple of weeks to see if she might be. We know they are coming and are trying to be positive in dealing with them and not letting them ruin our lives with her. The warmer weather has been great and allowed us to take her on walks on several occassions. We can't wait for summer to come and to hopefully take her up to the pool and maybe, just maybe on a vacation to the beach. We could all use one of those right about now.
So, I guess, that is it for now. Again, we are sorry it has taken so long to write an update and please continue to ask for ones and please, please, please continue to pray. The power of love and prayer is truly amazing. There is no doubt in our minds that it is this overwhelming outpoor of prayer and love for us and Leah that has enabled her to make these milestones in her young life despite the grim news we had received upon leaving the hospital just about 3 months ago. Once again, thank you, all of you, for all that you have done. Even the people we don't know who are praying for us, we don't even now how to begin to thank you. You all are amazing people and it is comforting to know that there are so many good and loving people still in the world today when it seems that everything lately has been so negative.
Thank you much and God Bless!
Oh, and one more thing, her smile will melt your heart!
UPDATE: 9/15/2007
It has been a long time since we updated the page and I feel that we never gave our angel a proper goodbye. It has been 1 year and 4 months since our little angel went home and we all miss her so much. For some reason I felt inclined to visit the site today for the first time in probably well over a year and now here I am typing what I never thought I would be able to type. They say that the pain goes away with time and there is some truth to this but the missing of our little angels never goes away. I surround myself with her pictures no matter where I am and I even went so far as to have here forever tattooed on my body so no matter what, she will never leave my side and no matter what, I will always be able to see her beautiful face. It is a happy time for Steph and me because any day now we are about to give birth to our first child since Leah. Her name is Makayla and we all can't wait to meet this new angel. We have had so many tests done to feel secure about this child but you can never feel completely comfortable because we will not know until we know. Those painful memories of the day Leah came to us still are ever present in our minds but deep down in my heart I know Makayla will be just fine. Our Leah, who watches over us now, will ensure this. I often wonder if I will recognize Leah in Makayla and I do feel that there may be those little signs that only Leah had that will let me know that all is well. There is so much to say so I will try to keep this brief. First I think I will tell you all about the months after she passed and the hope that we got for the first time since she was born.
The night our little punkin passed was absolutely terrible. I was home alone while Steph was getting a much needed girls night out. Leah had been having a hard time for several months leading up to this inevitable day with constant pneumonia. When her oxygen saturation levels began to drop down to the single digits and heart rate began to drop steadily I knew something was not right. I continued to fight for her life as much as I could in hopes that I could save her again (she had done this numerous times in her life and each time somehow we were able to bring her back) but this time felt different. I felt completely helpless for the first time in her life and this was a feeling that I had never felt before and never want to feel again. I called Steph home immediately and prayed so hard that Leah would at least wait for her mommy to come home before she moved on home to God. I swear to you all, the moment Steph came running into the house, Leah knew and rallied. All her numbers returned strongly and we thought we had her back again. This was unfortunately not the case. I had called all the family and they were each on their way to our house. One by one family would show up and Leah would rally. Stephanie's mother was the last to make it to the home and shortly after that Leah took her last breath in my mother's arms. It was horrifying and beautiful. Her strong, life-long fight was finally over and she was at last at peace. What was more amazing was that Leah managed to stay here and wait for all to get there before she took her last breath. What amazing strength, love and courage our little one had. Leah passed away around 9:34 on May 10th. After several hours of the physical and emotional battle that we all went through I remember going outside shortly after 10pm by myself to take a breath and gather my thoughts. At this moment I looked to the sky and the cloudy night sky parted above our house revealing a glorious moon and one star. That was my angel and my first sign that all was well and she was home. I felt so joyous in that moment and I can't even describe the inner peace and happiness felt in that moment. This would not be my only sign to come from my angel.
The week after the funeral Steph and I headed to the beach to just get away and be with ourselves. As we pulled into the parking lot of the hotel there was a convertible BMW like Steph's father, John used to drive. John had passed away of a sudden heart attack about a year and a half before Leah was born (yes we have had a very hard 3 years). Well anyway, the license plate of this BMW said "LEA & J2". That absolutely blew our mind. Our Leah was home with Steph's father. The next day while lying on the beach I looked up in the sky and in the clouds the letter H was right above my head in blue. I looked next to it and there was an A. I looked next to that and there was an E. I remember thinking to myself that there was no way that there could be an L and low and behold there it was. The L was upside down but nonetheless it was right there in a row above my head. Leah's name was written in the heavens for all to see (though I am sure that I was the only one that noticed). A few weeks after we got back she came to me for the first time in my dreams. She was sitting in her car seat just smiling at me and looking at me. I asked her where she had been and she did not answer (obviously since she could not speak). I asked her if she was ok and she just smiled at me. I then asked her if she was with the angels and her smile got even larger and she began to bask in the most beautiful light I had ever seen. I just cried in the dream tears of extreme joy and woke up. She has visited Steph and me in several other dreams since her death and now she does talk to us. I have not seen her in awhile though.
It has been very hard for Steph and me following Leah's passing. It put extreme stress on both of us not having her there to the point where we almost separated. I urge all of you to not give up despite the stress and to hold on to each other in both the times your child is still alive and those horrible times after she has moved on. I have felt so selfish and just wanted her back with all of her symptoms and all. I miss taking care of her so much and have thought so many times that I would give anything to just have one more day to take care of her. I miss giving her all her medicines and feeding her though her G Tube. I miss comforting her in all those horrible seizures. I miss waking up in the middle of the night to the sound of her O2 saturation monitor going off. It is a terrible thing to miss and a terrible thing to realize all those times that I just thought it would be so much better for her and us if she would just pass on.
It is funny how life works and how the things that we dreaded doing, the day to day care that we have to give to our little angels ends up being the things we think about and miss the most. It is also terrible to forget how she smelled and to forget how she sounded. Some times in the middle of the night I wake up and hear one of her sounds but then realize she is not there. It is amazing to know how much our little angels touch us and how much they teach us of love. I never knew I could love anything so much as I loved Leah and I never knew I could miss anything so much as I miss Leah. She is so much better now but a part of Steph and me was lost forever when she passed. A year and half later things are much better but we have not forgotten our little angel and we miss her terribly. I suppose we always will despite how many kids we have and how many happy days we have ahead. I urge you all to hug and love on your little angels every day because we all know with this horrible disorder that there will come a day when we cannot and those days are hard ones. Any parent that has been through what we Aicardi parents go through and will continue to go through, know pain and love and heartache all too well, but I think most of us also find that looking back if we could have a choice not to have a child with Aicardi or not, that we would never choose not. I would never have chosen not to have and to take care of and to love our Leah. She has taught us all so much about love and life and what is important. She made me a completely different person and I owe her so much. I miss her terribly and long for the day that I will meet her again. I do go to bed every night with the hope that I will get to spend some time with her again in my dreams. It has not happened in awhile but I know she will visit me soon.
I ask all of you to keep smiling and keep loving your child. There are tough days ahead of you but getting the opportunity to truly care for Angels as we do is a blessing and not a curse. These children are the epitome of love as all of you know and they make all of us who come into their lives better people.
I have added the last picture of Leah we had before she died. It is also the picture of my tattoo that I have added as well.
I love all of you and pray for all of you and hope to someday meet some of you and your blessed children.
May God always bless you and your families!
Andy and Stephanie Hagedorn, Lucky parents who were honored enough to care for an angel!
