John Piper says "Life is hard and God is good" and I feel that really applies to me right now. So I think this past week has been the hardest of my life. Actually, each week gets even harder! I'm just going to be candid right now, I am flat worn out.
My weekend started out with my first shot at night shift. Although I loved the people and the atmosphere, I would have to say that Michael did not like me being gone. I did not handle the reverse sleeping order very well either. All of this to say, by Sunday morning I was running on strait fumes. Now let me back up a little. Thursday night was my first night on and I could barely take a nap during the day so I had a hard time making it. Friday, by the time I got Caleb dressed and off to school it was almost 9:30 (a good two hours after I got off). I finally got home, set my alarm for 4:30, and crawled into bed. I probably woke up 4 times and then woke up for good about 3:00! I went and picked up Lilly and Caleb, got ready for work, cooked dinner (NOT!!!), and waited for Michael to get home. He arrived home about 6 looking like dog poop. He was aching all over, and really didn't feel well. So i called my sweet sweet emergency line (Jenni) and she met me at the hospital with my little immunosuppressed Lilly while i went to work. Lilly remained with her and Courtney for the entire weekend. Saturday morning I got off about 8:30 and in need of some serious sleep. So I went to Lynne's, where she cooked me a huge breakfast, gave me some (good stuff) to sleep, and I went to the cave and passed out till 4:30!
Now, one would think that with that kind of sleep Sunday night would be a dream, right? NOT!!!! I was definitely ready to crawl in a hole and die. So finally my weekend of night shift was over, I went home and took a nap and was ready to get back to life as normal. I picked up Lilly around 1:00 where I discovered a pretty nasty looking rash on her back. We watched it over the day and it got progressively worse. The hematologist suggested that we take her to the ER to have her checked out. Of course by then the rash had spread everywhere and was looking quite scary. We spent about 3 hours in the ER when they shipped us off to Children's to get checked out. We spent Sunday night there where we were greeted by a team of eager professionals that was under the impression that we had some crazy skin falling off disease. #1 I'm glad they did not share their thoughts with me, #2 I'm glad that they did not transport me and #3 I'm glad that the nurses at Children's really know how to keep their cool. Now Lilly has this precious big green fluffy monkey that she loves to sleep with. It's her chemo monkey that goes to Children's with her for her treatments. She plays with it, and sleeps with it. It has to be the cutest stuffed animal I have ever seen! So while we were at Baptist the monkey got rolled up in linens and thrown out. It was a catastrophe!
So while all of this is going on, my boys at home have continued to get sicker. Caleb and Michael both woke up feeling horrible this morning and finally went to the doctor. Sweet Nina took over taking care of Caleb since Michael didn't feel up to it and they were both in the doctor at the same time. Both boys were diagnosed with H1N1 and have to be out of work/school the entire rest of the week. Lilly and I are still up at Children's with a whole entourage of support. Jenni, Courtney and Lynne are up here to keep me in good company.
As far as Lilly goes, she wound up having a reaction to the chemo that she has been receiving and they are deciding weather or not to put it on hold indefinitely. She has received no benefit from the treatments so far and they don't see the benefit of resuming it if she is having this type of reaction. They are going to be fitting her for a Styrofoam helmet sometime soon but rest assured, IT WILL BE DECORATED!!!! We will have to continue to keep a close eye on her and we will still need to keep her in a somewhat sterile environment until her immune system returns to normal. Lilly and I will not be able to return home to our favorite guys until at least the weekend. Hopefully her exposure was minimum and we will not wind up with the flu as well.
Now, all of my complaining is out of the way and I would like to thank a whole lot of people. Jenni, not only kept Lilly the entire weekend but she also came and sat with me in the ER and brought be to Birmingham where she spent the night and all of today. She really kept my mind off of things and brought some joy to my very tired heart. Thanks to Glenda, who in spite of him having the flu, is willingly and joyfully taking care of Caleb while mom is in the hospital and dad is at home nursing himself. Courtney, who drove all the way from Auburn today to bring P.F. Chang's for lunch, share her computer, love on my little Lilly and . . . BRING A NEW MONKEY!!! Thanks to Lynne for letting me sleep in her cave and making us some amazing meals while I was working. She is also here with me to stay tonight at Children's so I wouldn't be here by myself. Thanks to everyone who is lifting us up in prayer and loving on us in every way could possibly imagine. Where this is the hardest time in my life, it has been a time of immense blessing of support and love. But most of all I want to thank my sweet sweet husband. He has done without and given of himself in so many ways this weekend. He has been alone and been Mr.Mom all weekend. I wish I could be there for him to take care of him while he is sick.
Please continue to keep our family in your prayers, we are in need of it right now. Please pray for healing, endurance, and a new outlook on the situation. Where things seem hard right now, I know they are not hopeless. Please pray that I find joy in these situations.
1.18.2010
1.11.2010
Life as we know it!
While life in the past year and a half has been absolutely amazing, we have come across some of our hardest times. I have felt the need to update this blog for quite some time but it is hard to put into words all that we have experienced since I blogged last. For starters I would like to acknowledge how blessed that I have been. Blessed to have a husband, soul mate, friend and confidant that understands every part of who I am and accepts me. He knows when I really need help and when I'm just being lazy and helps either way. He is the best father and my kids are so blessed to have him as that. He grieves with me, laughs with me, holds my hand, prays with me. He is the perfect person to bounce off what the Lord is teaching me and he uplifts me when I cannot feel or hear the Lord at all. He cuddles with me and hugs me tight and holds me when I cannot hold back the tears. There is not a more perfect person on earth for me and for that I am grateful.
I am also blessed by the network of support that I have. What they have done for me I could have never imagined and still cannot fathom. It is such a clear picture of what the body of Christ is. My family and friends have come up around me in ways that can only draw me nearer to the Lord. Though this is by far the hardest time in my life, it is also the clearest that I have seen His majesty. I cannot even begin to express how thankful I am for all those that are in my life. The support that I have from my family, church, friends and coworkers have brought me to a place of complete humility. They lift me up in prayer, walk with me in the valleys, bring me food, give of their time and resources, love on my children as if they were their own, laugh with me, cry with me, go with me to appointments, give me hugs or leave me alone. I have never felt so loved in my whole life. My coworkers, in the short time that I have been with them, have offered all of the same support. They also hold me in their prayers, love on my children, accept me, work with me (even when times are hard), and understand the circumstances of things that would not usually be tolerated by someone new. I am so blessed to be surrounded by such an amazing group of women (and men)! If I have to go to work, these are the people that I WANT to work with. There is a new family at Baptist East that holds a very special place in my heart now and I cannot thank you enough for your support as well.
As far as my family as a whole goes, we are doing well. Michael is home a little bit more and we all love that! Caleb is now a little over 2 and is so smart. He is the funniest little guy that you could ever meet, and if I must say so myself, quite the charmer. He has a precious smile and twinkle in his eyes. The things that he comes up with bring constant joy to my life. He is so gentle and loving towards Lilly, she could not ask for a better big brother. I know that they will have a special bond growing up and I couldn't be more proud of them. Lilly is now almost 10months and is the most pleasant little baby. Praise be to God that she has no idea what is going on in her little body,(which I will explain at the end of this blog). Despite her ITP she is so joyful and happy. She smiles and laughs and it is so contagious. She is a beautiful little darling and I know that the Lord has great things in store for her. She is a tough little girl that could wrap just about anyone around her finger (including me!!!).
I know many of you do not understand what is going on with Lilly so I will try to explain it to the best of my ability. When I was pregnant with Lilly we had a scare that she might have Cystic Fibrosis. She had a grade 2 ecogenic bowl which they had told us was either CF or a blocked bowl that she would need surgery for. However, on March 24,2009 we dilivered an absolutely perfect baby girl with not a problem in the world. From the day she was born she has been the most pleasant creature I could have ever imagined. She rarely fussed or cried and was a complete pleasure to be around. Lilly had been the epitome of health without so much as a runny nose. She did have some minor bowel problems that would have been considered unusual for a breastfed baby but nothing of great concern. Towards the middle of October 2009 Lilly started to have what I would consider a rash. Not something that I would normally make a trip to the doctor about so I didn't. On Oct. 31 the rash got worse and Lilly was running a high fever so I took her in. While there I just asked the doctor to look at it just in case. He told me that the rash was no rash it was petichae which is where her blood vessels were leaking under her skin. She was diagnosed with ITP (Idiopathic Thrombocytopenic Purpura). He immediately called Children's and she was seen locally at the peds office almost every other day for over a week. Her platelet count was very low and they were deciding on treatment options.
First I will take a moment to explain what is normal, what role platelets have in your body, and how ITP works. In a normal body, adult or child, the platelets are usually between 150,000 and 450,000. These platelets are what allows your blood to clot and keep you from bleeding externally or internally. With ITP a person makes antiplatelet antibodies which attach to the platelets and destroys them. This causes the platelet count to be lowered. There is a website called www.itpkids.org that explains all of this and is a good resource for just about anyone to read and understand. In Lilly's case her platelets at initial diagnosis were around 30,000. She fluctuated down to about 12,000 a week later and that is when we decided on the first treatment option at Children's Hospital in Birmingham. Dr. Hawthorne recommended that we go ahead with treatments because she was continuing to drop. She received 2 consecutive treatments of IvIG which is a blood plasma dirivitive. Witin two days after those treatments her platelets went up to 139,000 and they considered it to be an isolated event that was corrected and we probably would not see again. One week after her IvIG treatments her platelets dropped to 50,000 and the next day down to 24,000 which then deamed the treatments ineffective.
The next step was a high dose of steroid threapy. We did 10mL/day of Predisolone for about a month and a half that had no effect other than makeing my once sweet, playful baby, into one that never smiled. She was fussy all the time, didn't sleep hardly at all at night, and was eating like a horse. She gained about 4lbs over that time period most of which was just swelling. When we realized that the steroids weren't working we opted for a treatment called Win Rho which is also a blood plasma dirivitive. She received that the week of Christmas and my understanding was that most children that didn't respond to IvIG or Steroids almost always responded to Win Rho. Unfortunately, not in Lilly's case. We started the weaning process off of the steriods and the Win Rho had no affect on her at all, in fact her platelets continued to drop. The sweet NICU nurses as Baptist East did her blood drawls to monitor her platelet counts in between trips to Birmingham. The week after Christmas the doctor decided to give one more IvIG transfussion just to buy time to decide what her next plan of care would be. At that point we were running out of options and nothing was working.
Last week they decided that the only two options left was a chemo treatment called Rituximab or a spleenectomy. Since Lilly is still so young and needs her spleen we are looking at every option around that. So we went with the Rituximab option. Before treatment her platelet count was 9,000. She received her first treatment last wed and it went very well. It's about an 8 hour transfusion and she slept and played through the entire thing. She didn't have any of the side effects that they had warned us about, although it doesn't mean that each treatment will hold the same. After our treatment on Wed though, Lilly had some nose bleeds that we had to take her to the ER for. It turned out that her platelets had dropped down to 4,000 and she had petechiae all over her body. We wound up having to do a platelet transfussion. The Lord was watching out for us though because we didn't have to transport her. There happens to be a pediatric unit opening up at Baptist East at the end of the month and there was an experienced PICU nurse available to do the transfusion. Her name was Cathy and she was incredible. Lilly did however, pull her iv out and bled all over my clothes. All of my coworkers from upstairs came down and visited, brought food and a change of clothes and provided an immeasurable amount of support. I don't know what I would have done without you guys. As for Lilly's demeanor in all of this, you would never know by looking at her that anything is wrong and I am so thankful for that. While each round of the chemo lasts 4 weeks we won't see results for awhile, but hopefully this will work. They have told me to expect more than just one round.
With these new treatment options we do have to make some lifestyle changes. The Rituximab will wipe out any antibodies in her system and she will be vulnerable to infections. All of her vaccines could possibly have to be repeated. We are having to treat her like a newborn now. I am thankful though that all of those around me are on board with the changes that have to be made. Some friends from church came over last week and cleaned my house, meals are being provided, and changes are also being made in the households where she stays. This will be a difficult transition for us but I know that the Lord is good and all of this will be for His glory. I hope this helps a little in the understanding of her condition and I will continue to post updates as things happen. Thank you so much for walking this journey with me and lifting us up in your prayers. They are felt and appreciated.
On a side note, during our first visit to Children's Hematology we also saw a GI specialist for Lilly's bowel problems. She was tested for CF and it was negative so that will never be another worry of ours. Also, her GI problems stem from a slight anatomical discrepancy that a little bit of prunes and Milk of Mag have worked wonders for.
I will try to start posting frequent updates as things unfold for Lilly as well as the rest of my family. I love all of you more than you will ever know!
I am also blessed by the network of support that I have. What they have done for me I could have never imagined and still cannot fathom. It is such a clear picture of what the body of Christ is. My family and friends have come up around me in ways that can only draw me nearer to the Lord. Though this is by far the hardest time in my life, it is also the clearest that I have seen His majesty. I cannot even begin to express how thankful I am for all those that are in my life. The support that I have from my family, church, friends and coworkers have brought me to a place of complete humility. They lift me up in prayer, walk with me in the valleys, bring me food, give of their time and resources, love on my children as if they were their own, laugh with me, cry with me, go with me to appointments, give me hugs or leave me alone. I have never felt so loved in my whole life. My coworkers, in the short time that I have been with them, have offered all of the same support. They also hold me in their prayers, love on my children, accept me, work with me (even when times are hard), and understand the circumstances of things that would not usually be tolerated by someone new. I am so blessed to be surrounded by such an amazing group of women (and men)! If I have to go to work, these are the people that I WANT to work with. There is a new family at Baptist East that holds a very special place in my heart now and I cannot thank you enough for your support as well.
As far as my family as a whole goes, we are doing well. Michael is home a little bit more and we all love that! Caleb is now a little over 2 and is so smart. He is the funniest little guy that you could ever meet, and if I must say so myself, quite the charmer. He has a precious smile and twinkle in his eyes. The things that he comes up with bring constant joy to my life. He is so gentle and loving towards Lilly, she could not ask for a better big brother. I know that they will have a special bond growing up and I couldn't be more proud of them. Lilly is now almost 10months and is the most pleasant little baby. Praise be to God that she has no idea what is going on in her little body,(which I will explain at the end of this blog). Despite her ITP she is so joyful and happy. She smiles and laughs and it is so contagious. She is a beautiful little darling and I know that the Lord has great things in store for her. She is a tough little girl that could wrap just about anyone around her finger (including me!!!).
I know many of you do not understand what is going on with Lilly so I will try to explain it to the best of my ability. When I was pregnant with Lilly we had a scare that she might have Cystic Fibrosis. She had a grade 2 ecogenic bowl which they had told us was either CF or a blocked bowl that she would need surgery for. However, on March 24,2009 we dilivered an absolutely perfect baby girl with not a problem in the world. From the day she was born she has been the most pleasant creature I could have ever imagined. She rarely fussed or cried and was a complete pleasure to be around. Lilly had been the epitome of health without so much as a runny nose. She did have some minor bowel problems that would have been considered unusual for a breastfed baby but nothing of great concern. Towards the middle of October 2009 Lilly started to have what I would consider a rash. Not something that I would normally make a trip to the doctor about so I didn't. On Oct. 31 the rash got worse and Lilly was running a high fever so I took her in. While there I just asked the doctor to look at it just in case. He told me that the rash was no rash it was petichae which is where her blood vessels were leaking under her skin. She was diagnosed with ITP (Idiopathic Thrombocytopenic Purpura). He immediately called Children's and she was seen locally at the peds office almost every other day for over a week. Her platelet count was very low and they were deciding on treatment options.
First I will take a moment to explain what is normal, what role platelets have in your body, and how ITP works. In a normal body, adult or child, the platelets are usually between 150,000 and 450,000. These platelets are what allows your blood to clot and keep you from bleeding externally or internally. With ITP a person makes antiplatelet antibodies which attach to the platelets and destroys them. This causes the platelet count to be lowered. There is a website called www.itpkids.org that explains all of this and is a good resource for just about anyone to read and understand. In Lilly's case her platelets at initial diagnosis were around 30,000. She fluctuated down to about 12,000 a week later and that is when we decided on the first treatment option at Children's Hospital in Birmingham. Dr. Hawthorne recommended that we go ahead with treatments because she was continuing to drop. She received 2 consecutive treatments of IvIG which is a blood plasma dirivitive. Witin two days after those treatments her platelets went up to 139,000 and they considered it to be an isolated event that was corrected and we probably would not see again. One week after her IvIG treatments her platelets dropped to 50,000 and the next day down to 24,000 which then deamed the treatments ineffective.
The next step was a high dose of steroid threapy. We did 10mL/day of Predisolone for about a month and a half that had no effect other than makeing my once sweet, playful baby, into one that never smiled. She was fussy all the time, didn't sleep hardly at all at night, and was eating like a horse. She gained about 4lbs over that time period most of which was just swelling. When we realized that the steroids weren't working we opted for a treatment called Win Rho which is also a blood plasma dirivitive. She received that the week of Christmas and my understanding was that most children that didn't respond to IvIG or Steroids almost always responded to Win Rho. Unfortunately, not in Lilly's case. We started the weaning process off of the steriods and the Win Rho had no affect on her at all, in fact her platelets continued to drop. The sweet NICU nurses as Baptist East did her blood drawls to monitor her platelet counts in between trips to Birmingham. The week after Christmas the doctor decided to give one more IvIG transfussion just to buy time to decide what her next plan of care would be. At that point we were running out of options and nothing was working.
Last week they decided that the only two options left was a chemo treatment called Rituximab or a spleenectomy. Since Lilly is still so young and needs her spleen we are looking at every option around that. So we went with the Rituximab option. Before treatment her platelet count was 9,000. She received her first treatment last wed and it went very well. It's about an 8 hour transfusion and she slept and played through the entire thing. She didn't have any of the side effects that they had warned us about, although it doesn't mean that each treatment will hold the same. After our treatment on Wed though, Lilly had some nose bleeds that we had to take her to the ER for. It turned out that her platelets had dropped down to 4,000 and she had petechiae all over her body. We wound up having to do a platelet transfussion. The Lord was watching out for us though because we didn't have to transport her. There happens to be a pediatric unit opening up at Baptist East at the end of the month and there was an experienced PICU nurse available to do the transfusion. Her name was Cathy and she was incredible. Lilly did however, pull her iv out and bled all over my clothes. All of my coworkers from upstairs came down and visited, brought food and a change of clothes and provided an immeasurable amount of support. I don't know what I would have done without you guys. As for Lilly's demeanor in all of this, you would never know by looking at her that anything is wrong and I am so thankful for that. While each round of the chemo lasts 4 weeks we won't see results for awhile, but hopefully this will work. They have told me to expect more than just one round.
With these new treatment options we do have to make some lifestyle changes. The Rituximab will wipe out any antibodies in her system and she will be vulnerable to infections. All of her vaccines could possibly have to be repeated. We are having to treat her like a newborn now. I am thankful though that all of those around me are on board with the changes that have to be made. Some friends from church came over last week and cleaned my house, meals are being provided, and changes are also being made in the households where she stays. This will be a difficult transition for us but I know that the Lord is good and all of this will be for His glory. I hope this helps a little in the understanding of her condition and I will continue to post updates as things happen. Thank you so much for walking this journey with me and lifting us up in your prayers. They are felt and appreciated.
On a side note, during our first visit to Children's Hematology we also saw a GI specialist for Lilly's bowel problems. She was tested for CF and it was negative so that will never be another worry of ours. Also, her GI problems stem from a slight anatomical discrepancy that a little bit of prunes and Milk of Mag have worked wonders for.
I will try to start posting frequent updates as things unfold for Lilly as well as the rest of my family. I love all of you more than you will ever know!
3.14.2008
Settling In
I think I am finally settling in to my new role as mommy. I planned for it, I wanted it, but I could never have known exactly what kind of amazing joy being a mommy could be. My every thought and move is centered around this amazing little boy. I pray that through the Lord's guidance that I can be the best mom that Caleb could ever have. I pray that I can teach him to be a protector while still protecting him. Caleb is teaching me what joy is, in his perfect little bundle of happiness and I know that the richness of this bond and emotion is merely a glimpse of how the Lord sees me and you.
10.01.2007
So, he's finally here and it has been the most precious thing I have ever experienced. The following pictures were all taken in the first week of his life and he looks totally different now. I will post newer pics as soon as my new camera cord comes in (which I have ordered)
9.13.2007
Baby is Coming!!
So we are incredibly excited to announce that Caleb will be joining us on Monday September 17th. I will be sure to post pics next week when I get home but so far baby is healthy. Sorry I haven't posted in awhile things have been crazy around here. Please be praying for us as we enter this new phase in our lives.
7.07.2007
Ugghhh!!!
As precious and fun as my sweet little Westie "Buster" is he has eaten my camera cord in 4 different places!!!I don't know what I am going to do without being able to upload pictures onto my computer. That means no updated prego pics, no cute pictures of Buster himself, what will I ever do?!?! I will be sure to get another before Caleb gets here so no worries,just wanted to vent. Camera cord or no I wouldn't trade that little rascal for the world. He has got to be the funniest, sweetest, most playful dog ever. I can't wait for him and Caleb to be able to play together.
6.24.2007
Baby is Perfect!
Well, we had another ultrasound yesterday and little Caleb is absolutely perfect!!! He is in the 50th percentile with everything and is turned head down (which he has been breach for at least 13 weeks)! Everything is fully developed and he is a very active little boy. If only his momma was doing as well. As of now I have a kidney infection, which has been the fourth one that I have had since I have been pregnant and I have a reverse placentae? don't know what that means but apparently I will experience all of my labor in my lower back. . .but if I can go through all of this to ensure that little Caleb is as healthy as possible then keep bringing it on. I can't wait to see his sweet little face and to just wrap him up in my arms and show him all of the love and support that his parents can possible give him.
Subscribe to:
Posts (Atom)