I have been deeply impacted by people’s responses. It confirms what we knew and fills us with joy despite our sadness. I felt God tell me that Kaitlyn’s destiny will encompass many people. I think I actually blogged this in one of my early entries. It fills me with joy to hear people glorify our God.
I may speak prematurely but for now I believe that destiny is two fold. We seek and activate our destiny by walking in faith and obedience. But I also believe that part of our destiny is fulfilled when we rest in God because it’s not only about what we do but who we are.
Kaitlyn was a baby whose spirit and testimony has touched many. Just as Paul and I were her advocates during her time in hospital, we are the voice telling her story. Kaitlyn’s story is her God given destiny.
Tuesday, December 22, 2009
Perfection
This word had been prayed and spoken over Kaitlyn so many times. Our pastors and a few people committed to pray for us met every Monday night to pray for Kaitlyn when she was still in my womb. At the time we received this word to mean we were praying Heaven onto earth to bring healing and perfection in her body. However as I look back on her short life I realize that this word means that our love for her is perfect. In the end, the Word says that God is love…we place our eyes on our God and know that as we rest in His love that we see perfection.
God’s Wisdom
Our Community Group had prayed over us God’s wisdom on Wednesday night. God answered this prayer through the voice of my mother on Thursday morning. God’s wisdom is different from our own wisdom because God’s wisdom also holds mystery. I had mentioned earlier that Kaitlyn’s name means, `pure’. Well Kaitlyn’s Korean name, Gee Hae, means God’s wisdom. We are only able to embrace this because we know that God is good all the time and trust in His great love for all of us.
Monday, December 21, 2009
We are all Heaven Bound
I've been waking up at early hours of the morning to pump. I was expressing milk for Kaitlyn but now I'm trying to stop production...it's at these early hours of the morning that I have been thinking and writing. I have many more thoughts I would like to share, however, I haven't had the time to post them as we have also been busy deciding on how we wanted to take care of Kaitlyn's body. I hope that you will continue to follow Kaitlyn's story as God is continuing to speak to me. Kaitlyn has impacted me in such a way that what was a drought in my life is now a floodgate of revelation.
We know that our citizenship is in Heaven. I remember having a conversation once about what the big deal was about Heaven. It was like talking about a trip to some foreign county I knew nothing about. But since then life has been like one of those Lonely Planet guides. Through our experiences God reveals Himself if we are willing to hear and see. These revelations should lead us to ponder about and eventually yearn for Heaven where we spend all eternity with God.
That week Pastor Steve had come to speak to us. It was the day after Kaitlyn smiled at him. I was tired and my glasses were irritating my nose. I took them off but when I looked back up at Pastor Steve I couldn't hear him clearly. I have to explain that I am profoundly deaf in my left ear so when there is surrounding noise it helps me to read lips. Later God spoke to me through this to say that as much as I am seeking to hear His voice, I need to look to Him too.
On Kaitlyn's last day I kept looking at the monitor to check how her heart was doing. I kept looking for signs of the promise of life. I had to be sure. You can ask Linda if you have the pleasure of meeting her. I kept asking her over and over whether she thought that Kaitlyn's numbers were stabilizing. Because the nurses had told me to look to see what Kaitlyn was telling me I began to entertain doubt and confusion. As the Rock wore off and she began to open her eyes and move I began to think, maybe she's telling us she still has the strength to keep going. Throughout the day I was filled with anxiety and stress. Then I remembered what God had spoken to me about. To keep my eyes on Him. Not only to try hear His voice for direction but to look to Him only. I had to take my eyes off the numbers, I had to take my eyes off my little Kaitlyn and look to Him.
We have faith and peace that Kaitlyn is in Heaven. I chose the name Kaitlyn because it meant, `pure'. At first I chose this because even if she had Trisomy 21, I wanted to speak this word over her life, that she is pure; perfect.
I believe that God gave Kaitlyn a special assignment. It was short and she fulfilled it. For some of us we have to spend a lifetime searching for God or working out our salvation. But God allowed Kaitlyn to remain pure as a babe and complete her mission. This mission was simply to touch the lives of many...that Christ's glorious light may shine and lead people a little bit closer to home, to Him. Sometimes in our search for truth and identity we overthink things and get frustrated or feel lost but it's usually simpler than we think. We just have to keep our eyes on Christ. He is always about relationship and He always touches people's lives in big and small ways. I know that Kaitlyn's spirit and all that God is doing has touched the lives of many.
We know that our citizenship is in Heaven. I remember having a conversation once about what the big deal was about Heaven. It was like talking about a trip to some foreign county I knew nothing about. But since then life has been like one of those Lonely Planet guides. Through our experiences God reveals Himself if we are willing to hear and see. These revelations should lead us to ponder about and eventually yearn for Heaven where we spend all eternity with God.
That week Pastor Steve had come to speak to us. It was the day after Kaitlyn smiled at him. I was tired and my glasses were irritating my nose. I took them off but when I looked back up at Pastor Steve I couldn't hear him clearly. I have to explain that I am profoundly deaf in my left ear so when there is surrounding noise it helps me to read lips. Later God spoke to me through this to say that as much as I am seeking to hear His voice, I need to look to Him too.
On Kaitlyn's last day I kept looking at the monitor to check how her heart was doing. I kept looking for signs of the promise of life. I had to be sure. You can ask Linda if you have the pleasure of meeting her. I kept asking her over and over whether she thought that Kaitlyn's numbers were stabilizing. Because the nurses had told me to look to see what Kaitlyn was telling me I began to entertain doubt and confusion. As the Rock wore off and she began to open her eyes and move I began to think, maybe she's telling us she still has the strength to keep going. Throughout the day I was filled with anxiety and stress. Then I remembered what God had spoken to me about. To keep my eyes on Him. Not only to try hear His voice for direction but to look to Him only. I had to take my eyes off the numbers, I had to take my eyes off my little Kaitlyn and look to Him.
We have faith and peace that Kaitlyn is in Heaven. I chose the name Kaitlyn because it meant, `pure'. At first I chose this because even if she had Trisomy 21, I wanted to speak this word over her life, that she is pure; perfect.
I believe that God gave Kaitlyn a special assignment. It was short and she fulfilled it. For some of us we have to spend a lifetime searching for God or working out our salvation. But God allowed Kaitlyn to remain pure as a babe and complete her mission. This mission was simply to touch the lives of many...that Christ's glorious light may shine and lead people a little bit closer to home, to Him. Sometimes in our search for truth and identity we overthink things and get frustrated or feel lost but it's usually simpler than we think. We just have to keep our eyes on Christ. He is always about relationship and He always touches people's lives in big and small ways. I know that Kaitlyn's spirit and all that God is doing has touched the lives of many.
It's not over
I have many more thoughts I would like to share. We have been busy taking care of the final arrangements for Kaitlyn and busy organizing her memorial celebration so I just have not had the chance to post my thoughts. Please keep following Kaitlyn's story. It's not over!
Thank you to my family and friends in Sydney who have been calling, writing and thank you Angela and Michael for the beautiful flowers.
For those wanting to send flowers please consider making a donation to Children's Hospital. I say this with care because I would hate for people to feel obliged. There will be more details to follow regarding this.
Thank you to my family and friends in Sydney who have been calling, writing and thank you Angela and Michael for the beautiful flowers.
For those wanting to send flowers please consider making a donation to Children's Hospital. I say this with care because I would hate for people to feel obliged. There will be more details to follow regarding this.
Friday, December 18, 2009
TBA
Due to unforseen circumstances we will announce a date to save for Kaitlyn's memorial. On Monday I might know what date to save once some details are sorted out to allow Cath and Ron to be able to join us and celebrate Kaitlyn's life with us. I will be sure to blog ahead of time to allow people time to save the date during this busy Christmas season.
I would also like our nurse Linda Dart to join our celebration and would like to co-ordinate around her rotation.
It’s a one way ticket to Heaven
To clarify, we made Kaitlyn comfortable as she breathed her last breaths. We allowed her to do what she was meant to do. We could not allow machines and drugs to continue to sustain her breath if God was calling her home. We can not fight God. After coming to peace with this, we knew we could walk through the fire and hold our baby and watch her pass away. Not everyone has the gift of holding their loved one as they pass on so we are truly honoured and privileged.
We did not cry as she breathed her last breath. We had our hand on her heart as it beat slower and slower and finally stopped. We gazed upon the peace in her face. I prayed out loud, even in front of the doctor and nurses in the room…as foolish as it sounded I prayed that God would raise her from the dead with the same power that raised Christ from the dead. I did this so I would not regret that I failed to pray this prayer in fear of looking foolish. Looking back I realize that I prayed this out of emotion…had I looked to God I would have known His will and prayed according to this, “go in peace”. I wonder if people think that our God is powerless when He doesn’t come and perform the miracle we cry out for. But I know that God is bigger than me and that His grace is sufficient for me. I know that He says it’s ok…I prayed as any mother would.
Time and time again I have learned that we suffer and struggle when we fight God. I’ve also learned that these lessons never get easier even when I’ve learned that when we let go and stop fighting God that there is peace. I believe we could not squeeze a tear out as we let our daughter go because we had peace. This peace gave us confidence and strength to endure what no parent should have to experience. We were finally ready. Kaitlyn was already ready and waiting, just as God was waiting to receive her.
We want people to know that we are going to celebrate her life. Although it was 35 days her on earth, her life in heaven is eternal.
We did not cry as she breathed her last breath. We had our hand on her heart as it beat slower and slower and finally stopped. We gazed upon the peace in her face. I prayed out loud, even in front of the doctor and nurses in the room…as foolish as it sounded I prayed that God would raise her from the dead with the same power that raised Christ from the dead. I did this so I would not regret that I failed to pray this prayer in fear of looking foolish. Looking back I realize that I prayed this out of emotion…had I looked to God I would have known His will and prayed according to this, “go in peace”. I wonder if people think that our God is powerless when He doesn’t come and perform the miracle we cry out for. But I know that God is bigger than me and that His grace is sufficient for me. I know that He says it’s ok…I prayed as any mother would.
Time and time again I have learned that we suffer and struggle when we fight God. I’ve also learned that these lessons never get easier even when I’ve learned that when we let go and stop fighting God that there is peace. I believe we could not squeeze a tear out as we let our daughter go because we had peace. This peace gave us confidence and strength to endure what no parent should have to experience. We were finally ready. Kaitlyn was already ready and waiting, just as God was waiting to receive her.
We want people to know that we are going to celebrate her life. Although it was 35 days her on earth, her life in heaven is eternal.
Garden of Gethsemane
Because Paul and I have so many thoughts and feelings, we will share this in increments so as not to overwhelm you with having to read essays – It's not over. Yes, we have that much more to share.
I don’t think I can say that this is the same as facing crucifixion and all that Christ faced but I know what it’s like to face death and pray to God, “Please take this cup away, not my will but your will.”
At 3am I called to check in with our nurse, Christina, as Kaitlyn had been in a very fragile state since her surgery onTuesday when her heart stopped for 9 minutes. Overnight her heart rate had been dipping down into the 70s. Her previous surgeries showed Kaitlyn’s heart rate had been in the hundred-teens. A healthy newborn heart rate is expected to range from the 120-160. In the 60s a baby’s heart rate is considered the same as a flat line as there is not enough oomph to pump the blood around the body sufficiently. Her profusion was the worst we have ever seen it. This meant that her body was stressed and was drawing all reserves to her vital organs. This was evident in her profusion. You test this by pressing on the skin to blanch it and see how quickly the colour comes back. Her blood pressure was high at times but her heart rate would dropp. This labile dance was unpredictable and most likely a consequence of brain injury. The made it difficult for the doctors and nurses to know how to adequately medicate our baby's pain. She began to not tolerate morphine as her heart rate would drop too low for comfort and so the medical team decided to with hold morphine. Our baby was paralyzed with a drug called Rock for short. At times it was evident that she was conscious under this paralytic and we hated this. We hated knowing that our baby was probably anxious and we hated not really knowing if she was experiencing pain or discomfort and was unable to show us. Usually nurses will follow the baby’s cue by either watching the numbers (such as an accelerated heart beat along with accelerated blood pressure) or by watching facial expressions…however in our case, Kaitlyn’s vital signs were not behaving predictably and she was frozen, unable to show us anything. To convey how serious her state was you have to know how she was after previous surgeries. Her heart rate and blood pressure was more stable and predictable, allowing the medical team to adequately keep her comfortable…so as much as we hated the fact that she had to have surgeries, we felt reassured that her doctors and nurses were able to read her cues and keep her comfortable.
Again I go into this much detail about her condition so you know how sick our baby was. Of course this did not make our decision any easier. We have had this conversation with doctors many, many times, too many times, throughout Kaitlyn’s life. The doctors asked if we wished to terminate when ultrasounds and tests pointed to the likelihood of a genetic defect and a congenital heart defect. This decision was easy to make. We simply held onto our values, that any life, all life is to be preserved. However, the need to confront death became increasingly difficult when we met and bonded with our daughter. Our little baby showed she had such complex health issues. Each time the doctors sat us down, too many times to count on one hand, our discussions about Kaitlyn’s long term care and prospects for life became more difficult and intense. As parents we have faced the single most difficult decision in our life. We have been asked to decide whether our daughter should or could continue to live.
After talking to Christina I understood what people had been telling me. With every good intention the medical staff had been telling me we would know when the time came to let Kaitlyn go, that she would be telling us it was time. I would just nod my head but I didn't understand. At that moment in my heart I understood what this meant.
I prostrated myself before God and prayed. In that moment I knew that true surrender was death. Is this not the case in all things? That we have to die to our natural fleshly man in order to surrender to the Holy Spirit. I surrendered Kaitlyn to God. I thanked God for allowing me to carry her in my womb and for allowing us to meet her, to hold her, to caress her head. I mourned and grieved her. After this I had a peace…throughout our journey to get to this point I truly believe we were led my God. He gave us a peace that transcends all understanding as we leaned on Him without reservation…I guess this also reminds me of a picture I had when we were praying for Kaitlyn before she was born. I saw myself on a trapeze…and God was before me, asking me to let go of the security of the trapeze bar and to leap into His arms. To trust in Him completely.
I called my mother after this…I wanted to talk to her before Kaitlyn passed away. God showed me that we can never be independent…we can never totally figure things out on our own…that God by His love and grace, places answers in the most unlikely places…that he places answers in the people that surround us. I believe my mother was the mouthpiece of God…as she told me, “Don’t cry, you have to let her come home to Me”, “ Her home, is Heaven”, “You don’t own her, you are simply a steward, that I love you so much that I entrusted her to you”, “Kaitlyn is MY beloved daughter”, “I am asking you to relinquish her to me”, “Don’t cry, I know, I know all things”, “ You are suffering more than Kaitlyn because you refuse to let go”, “Trust me”.
God’s grace has been upon us this whole time. People say Paul and I are so strong…so it’s true that when we are weak, He is strong. Who can be strong in such a time as this…it’s truly all our God. We are thankful for God’s grace, for allowing Kaitlyn to continue the good fight. We thank both God and Kaitlyn for allowing us the time to come to peace with our decision and to be liberated to make the decision. It was already decided by God but because of His mercy and love, He allowed us to find peace and freedom first.
I don’t think I can say that this is the same as facing crucifixion and all that Christ faced but I know what it’s like to face death and pray to God, “Please take this cup away, not my will but your will.”
At 3am I called to check in with our nurse, Christina, as Kaitlyn had been in a very fragile state since her surgery onTuesday when her heart stopped for 9 minutes. Overnight her heart rate had been dipping down into the 70s. Her previous surgeries showed Kaitlyn’s heart rate had been in the hundred-teens. A healthy newborn heart rate is expected to range from the 120-160. In the 60s a baby’s heart rate is considered the same as a flat line as there is not enough oomph to pump the blood around the body sufficiently. Her profusion was the worst we have ever seen it. This meant that her body was stressed and was drawing all reserves to her vital organs. This was evident in her profusion. You test this by pressing on the skin to blanch it and see how quickly the colour comes back. Her blood pressure was high at times but her heart rate would dropp. This labile dance was unpredictable and most likely a consequence of brain injury. The made it difficult for the doctors and nurses to know how to adequately medicate our baby's pain. She began to not tolerate morphine as her heart rate would drop too low for comfort and so the medical team decided to with hold morphine. Our baby was paralyzed with a drug called Rock for short. At times it was evident that she was conscious under this paralytic and we hated this. We hated knowing that our baby was probably anxious and we hated not really knowing if she was experiencing pain or discomfort and was unable to show us. Usually nurses will follow the baby’s cue by either watching the numbers (such as an accelerated heart beat along with accelerated blood pressure) or by watching facial expressions…however in our case, Kaitlyn’s vital signs were not behaving predictably and she was frozen, unable to show us anything. To convey how serious her state was you have to know how she was after previous surgeries. Her heart rate and blood pressure was more stable and predictable, allowing the medical team to adequately keep her comfortable…so as much as we hated the fact that she had to have surgeries, we felt reassured that her doctors and nurses were able to read her cues and keep her comfortable.
Again I go into this much detail about her condition so you know how sick our baby was. Of course this did not make our decision any easier. We have had this conversation with doctors many, many times, too many times, throughout Kaitlyn’s life. The doctors asked if we wished to terminate when ultrasounds and tests pointed to the likelihood of a genetic defect and a congenital heart defect. This decision was easy to make. We simply held onto our values, that any life, all life is to be preserved. However, the need to confront death became increasingly difficult when we met and bonded with our daughter. Our little baby showed she had such complex health issues. Each time the doctors sat us down, too many times to count on one hand, our discussions about Kaitlyn’s long term care and prospects for life became more difficult and intense. As parents we have faced the single most difficult decision in our life. We have been asked to decide whether our daughter should or could continue to live.
After talking to Christina I understood what people had been telling me. With every good intention the medical staff had been telling me we would know when the time came to let Kaitlyn go, that she would be telling us it was time. I would just nod my head but I didn't understand. At that moment in my heart I understood what this meant.
I prostrated myself before God and prayed. In that moment I knew that true surrender was death. Is this not the case in all things? That we have to die to our natural fleshly man in order to surrender to the Holy Spirit. I surrendered Kaitlyn to God. I thanked God for allowing me to carry her in my womb and for allowing us to meet her, to hold her, to caress her head. I mourned and grieved her. After this I had a peace…throughout our journey to get to this point I truly believe we were led my God. He gave us a peace that transcends all understanding as we leaned on Him without reservation…I guess this also reminds me of a picture I had when we were praying for Kaitlyn before she was born. I saw myself on a trapeze…and God was before me, asking me to let go of the security of the trapeze bar and to leap into His arms. To trust in Him completely.
I called my mother after this…I wanted to talk to her before Kaitlyn passed away. God showed me that we can never be independent…we can never totally figure things out on our own…that God by His love and grace, places answers in the most unlikely places…that he places answers in the people that surround us. I believe my mother was the mouthpiece of God…as she told me, “Don’t cry, you have to let her come home to Me”, “ Her home, is Heaven”, “You don’t own her, you are simply a steward, that I love you so much that I entrusted her to you”, “Kaitlyn is MY beloved daughter”, “I am asking you to relinquish her to me”, “Don’t cry, I know, I know all things”, “ You are suffering more than Kaitlyn because you refuse to let go”, “Trust me”.
God’s grace has been upon us this whole time. People say Paul and I are so strong…so it’s true that when we are weak, He is strong. Who can be strong in such a time as this…it’s truly all our God. We are thankful for God’s grace, for allowing Kaitlyn to continue the good fight. We thank both God and Kaitlyn for allowing us the time to come to peace with our decision and to be liberated to make the decision. It was already decided by God but because of His mercy and love, He allowed us to find peace and freedom first.
Peace
Kaitlyn Faith Ham went to be with our Lord Jesus Christ. Our beautiful daughter passed away on December 17, 2009 at 9.53pm. She went for a piggy back ride with Jesus and we have absolute peace she is in Heaven with her heavenly daddy. We know that God loves her MORE than we can possibly love her. We thank God for entrusting Kaitlyn to us. We hold onto the gift of having conceived her spirit. God and Kaitlyn gave us a beautiful gift in allowing us to know her, hold her and fall deeply in love with her. For those who never met Kaitlyn or got to hold our baby, we know you encountered her beautiful warrior spirit. She is brave, courageous and so strong. Her heart continued to beat for 37 minutes. Once again she surprised the doctor and nurses but then again why should we be surprised, we knew how strong she was and we knew she loved to surprise us all.
We know that Kaitlyn is at peace and because of this we have peace.
We got home at 3am this morning. As we drove away from Children's Hospital we asked if we had spent enough time with our daughter...and our answer was that it will never be enough but we are thankful for the time we had.
I woke up at 8am this morning and had so many words and thoughts in my head I had to type, type, type...I typed everything in a Word document. I will share this on our blog when I am ready.
Although many wish to send their condolences...we appreciate this and hope that you understand if we do not respond right away.
We are now preparing her memorial service to celebrate her life...this is most likely to be held on Monday or Tuesday evening...so please save the date! We are excited to share this event with you all!
We know that Kaitlyn is at peace and because of this we have peace.
We got home at 3am this morning. As we drove away from Children's Hospital we asked if we had spent enough time with our daughter...and our answer was that it will never be enough but we are thankful for the time we had.
I woke up at 8am this morning and had so many words and thoughts in my head I had to type, type, type...I typed everything in a Word document. I will share this on our blog when I am ready.
Although many wish to send their condolences...we appreciate this and hope that you understand if we do not respond right away.
We are now preparing her memorial service to celebrate her life...this is most likely to be held on Monday or Tuesday evening...so please save the date! We are excited to share this event with you all!
Wednesday, December 16, 2009
Through The Line of Fire
This is an email from my friend in Sydney and I wanted to include this testimony in Kaitlyn's blog...as Ps. Sonya says, "do it again Lord".
Hi clara, I was reading the Colour brochure that came out recently for 2010 and it gathered different women's journeys...and how they overcame challenges in His name. There was one story which i wanted share... I am sisterhood My name is natalie And this is Bella Grace's story Location: London, England Family: husband Mark, son Joshua and baby girl "Bella Grace" Reality: the moment our precious Bella was born, i knew something wasn't right. The specialists soon confirmed that Bella had been born with down syndrome. Shattered dreams: like all parents we had hopes and dreams for our little girl, dreams of what she would grow to be and experience. Suddenly we had to view her future differently. Resolve: to take hold of "God's plans" for his little girl. Those first weeks were difficult, tests and more tests, but church friends and family began surrounding us. This community of friends offered help and support, prayed that God would have His way in her life, that we would know His peace in the tormoil. Something began to happen: we took Bella home and further tests and check ups continued over the following weeks. After a while Mark commented that he thought Bella's face was changing. The miracle: one day one of the specialist phoned. They were extremely puzzled and confessed that they hadn't made this kind of mistake before, but according to their tests Bella did not have, or no longer had the condition. She was a perfectly healthy baby! Every sign of down syndrome had gone! Today: Bella is growing and responding. We are so grateful to our amazing friends and church who stood with us in faith and more so to an amazing God, who really is able to accomplish the impossible when we trust and believe. Clara, hope this story encourages u...it looks so much better in the actual brochure. Take care... And i LIKE ur long and detailed blogs! ^^ Love jul
"Life is not measured by the number of breaths we take but the number of moments that take our breath away". This is a quote that Virginia shared with me...the reason I am including all this in Kaitlyn's blog is because people have been commenting on our strength...but it's through you all that God is also strengthening us. This quote sums up how we feel about Kaitlyn.
Today we had a 2 hour intense meeting with the ICU Intensivist, Dr. Pittfield (these names may not mean anything to you but we want to remember these people's names as they have impacted us significantly during this difficult time) our nurse Linda Dart (we love her), Lori (the Ethicist), Linda (Hospital Chaplain) and the fellow...sorry she is lovely but I forgot her name. I think the way Dr Pittfield framed the purpose of this meeting was significant because it is the way that he related the medical information to us testified to his summary...to paraphrase what he said, "the purpose of the medical team and our recommendations (as difficult as it is to hear their recommendations) is to help you go through the process you need to go through to face the decisions that you are facing."
One of the biggest lessons I am learning as Kaitlyn's parents is how to advocate for her...I think this is another lesson on how to walk in the authority God has given us. It has been intimidating relating with the doctors but I'm learning that we have to use our voice to advocate for Kaitlyn who has no voice. That we have to bold and ask the hard questions...I feel that the more questions we ask, the more light we shed over this dark issue of life and death.
I would like to go back into the ICU to be with Kaitlyn...I will continue this blog later. (Clara)
Hi clara, I was reading the Colour brochure that came out recently for 2010 and it gathered different women's journeys...and how they overcame challenges in His name. There was one story which i wanted share... I am sisterhood My name is natalie And this is Bella Grace's story Location: London, England Family: husband Mark, son Joshua and baby girl "Bella Grace" Reality: the moment our precious Bella was born, i knew something wasn't right. The specialists soon confirmed that Bella had been born with down syndrome. Shattered dreams: like all parents we had hopes and dreams for our little girl, dreams of what she would grow to be and experience. Suddenly we had to view her future differently. Resolve: to take hold of "God's plans" for his little girl. Those first weeks were difficult, tests and more tests, but church friends and family began surrounding us. This community of friends offered help and support, prayed that God would have His way in her life, that we would know His peace in the tormoil. Something began to happen: we took Bella home and further tests and check ups continued over the following weeks. After a while Mark commented that he thought Bella's face was changing. The miracle: one day one of the specialist phoned. They were extremely puzzled and confessed that they hadn't made this kind of mistake before, but according to their tests Bella did not have, or no longer had the condition. She was a perfectly healthy baby! Every sign of down syndrome had gone! Today: Bella is growing and responding. We are so grateful to our amazing friends and church who stood with us in faith and more so to an amazing God, who really is able to accomplish the impossible when we trust and believe. Clara, hope this story encourages u...it looks so much better in the actual brochure. Take care... And i LIKE ur long and detailed blogs! ^^ Love jul
"Life is not measured by the number of breaths we take but the number of moments that take our breath away". This is a quote that Virginia shared with me...the reason I am including all this in Kaitlyn's blog is because people have been commenting on our strength...but it's through you all that God is also strengthening us. This quote sums up how we feel about Kaitlyn.
Today we had a 2 hour intense meeting with the ICU Intensivist, Dr. Pittfield (these names may not mean anything to you but we want to remember these people's names as they have impacted us significantly during this difficult time) our nurse Linda Dart (we love her), Lori (the Ethicist), Linda (Hospital Chaplain) and the fellow...sorry she is lovely but I forgot her name. I think the way Dr Pittfield framed the purpose of this meeting was significant because it is the way that he related the medical information to us testified to his summary...to paraphrase what he said, "the purpose of the medical team and our recommendations (as difficult as it is to hear their recommendations) is to help you go through the process you need to go through to face the decisions that you are facing."
One of the biggest lessons I am learning as Kaitlyn's parents is how to advocate for her...I think this is another lesson on how to walk in the authority God has given us. It has been intimidating relating with the doctors but I'm learning that we have to use our voice to advocate for Kaitlyn who has no voice. That we have to bold and ask the hard questions...I feel that the more questions we ask, the more light we shed over this dark issue of life and death.
I would like to go back into the ICU to be with Kaitlyn...I will continue this blog later. (Clara)
Tuesday, December 15, 2009
The Kingdom vs. The Natural
Kaitlyn had a rough night struggling with her breathing. This morning they called us as we were getting ready to go to Lauryn's preschool Christmas concert. They decided to reinterbate her and told us that she was stable enough for us to go to Lauryn's concert. Once we got to the school the doctor called again to say that Kaitlyn was deteriorating and the ENT surgeon required consent to do whatever it takes to save her.
Kaitlyn came out of surgery at about 1pm today. However, the doctor said that there were major complications. This time they had to use a lazer to cut out some scar tissue in her trachea. The ENT described her trachea as a an hour glass shape. Kaitlyn was born with a narrowing and a floppy trachea. In the narrowed area the trachea was collapsing in and out as she breathed. This caused a web of scar tissue was to form. The ENT had to remove this scar tissue cauterising as he worked...a piece of tissue fell down causing a blocked airway. Kaitlyn flatlined for 9 minutes during which they performed chest compressions, however they could not find a pulse to indicate that her heart was able to pump sufficient oxygen around her body. This means her brain may have suffered some injury. We don't know the extent of that damage. They have done an ultrasound on her brain, no significant damage has been found however some damage may not be evident except through watching her development...we're claiming the word PERFECTION still...
We decided to eat lunch and again got a call from the hospital to say that Kaitlyn was continuing to deteriorate. The doctors called us in for a meeting to discuss Kaitlyn's care in careful consideration of her recent setback and her continuing health complications.
When Kaitlyn went into surgery, once again I placed her in God's loving arms, and I felt God tell me that even when she's in our arms...that she is still in His loving arms. I think God was just stretching my vision.
Once again we find ourselves at a crossroad where our faith is stretched to the max. The doctors have given us the choice to go to the Canuck's Hospice and allow Kaitlyn to pass away in peace. The other option is to have her exterbated on Sunday and see whether she can breath on her own. Although the ENT can not predict the outcome he feels that this is can be a cycle where the scar tissue continues to form...so they are asking us when is enough enough. Both Paul and I are struggling with this decision.
The Chaplain at the hospital has been a part of all our big meetings, both today and that previous Friday when we had the big scare. She reframed things for us a little differently and said that God gives and takes breath. She also said that doctors give artificial breath. So we have to discern whether we are doing more than God...she also said that going to the Hospice can be a gift...I don't know if I agree with the latter perspective...I don't know when death is a gift...but her first perspective definitely gave me something to think about. I guess we need to discern whether this is a losing battle and whether continuing the fight is really taking control over the situation vs. my previous perspective that the decision to take her life is being in control...I'm glad that God is God because these decisions sure are hard.
Pastor Steve came by just to talk to us and support us. Clara and I have decided not to intervene again if something were to happen to Kaitlyn. Our poor little girl has gone through so much already in the past month. However, please continue to contend for full healing and restoration.
Please pray for us, we need wisdom, discernment to hear God's voice during this difficult and critical time.
U Turn
We received a call this morning from the hospital saying that Kaitlyn was having problems with her breathing during the night. They told us that they were going to re-intubate her. Then another phone call came saying that she was going to the OR. The nurse on call told us that Dr. Kozak found a lot of scar tissue in her trachea and used a lazer to clean it up. She'll be returning to the ICU with a tube down her throat. She's still in the OR ... we'll keep you updated.
Please keep Kaitlyn in your prayers
Please keep Kaitlyn in your prayers
Monday, December 14, 2009
Writing Writing Writing
Ivan asked Paul who writes the blog...I do most of the writing. As you can see from the previous entry...pics and vids...that's Paul's entry. He says I write too much, he is skim reader. I'm writing this so we can remember every detail. We regret not journaling Lauryn's life which has been just as amazing.
Paul likes to make his children work for everything, as you can see this is starting out early for Kaitlyn...she has to push weights to enjoy her soother...he also likes to make Lauryn boogie woogie before giving her anything.
Paul likes to make his children work for everything, as you can see this is starting out early for Kaitlyn...she has to push weights to enjoy her soother...he also likes to make Lauryn boogie woogie before giving her anything.
Kaitlyn is having a quiet day...she hates sitting in dirty diapers and gets worked up. This morning she started crying so I checked her diaper...she got so worked up crying that her heart rate starting dropping. The nurse said that for Kaitlyn when she gets into this state, it's like us trying to take a deep breath through a skinny straw. I just tried it with my Starbucks straw...so I guess it has to be skinnier than that.
Depending on who you speak with you get different reports. Our nurse yesterday was concerned about Kaitlyn's belly and liver because bloodwork showed that her liver enzymes were higher than usual. This caused me to worry that she may still have problems with her liver. But I just spoke with the GI who said that it's ok for this to fluctuate and it's not high enough for them to be concerned about. The GI team are actually quite happy with her liver function and hope that as her transient anemia resolves itself that her bilirubin will go down and that her liver and spleen will return to it's normal size.
Today I met another couple from Fort St John. They have been in the ICU for two weeks because their eleven year old son who also has Down Syndrome has pneumonia. This is the first real person I have met who also has a child with Down Syndrome. She came over to meet Kaitlyn.
Please pray for Kaitlyn to astound the doctors and nurses with supernatural weight gain. But not too much! Just the right amount.
Sunday, December 13, 2009
One Month Milestone
Whenever the phone rings and we see the ICU phone number we panic...this morning on our way to the hospital the nurse called to say that she was concerned about Kaitlyn and her philosophy is that if she concerned then she thinks that the parents should know. Kaitlyn was having a hard time breathing this morning so they gave her some medicine for the swelling in her upper airway and some morphine to settle her. She has been sleeping since. I was going to go to church today but I decided to wait by her bedside in case there was more drama today. I really want to hold her but it's more important for her to get some sleep.
The doctors and nurses here are very thorough and I like that they aren't in rush to boot us out. We have been her for a whole month already. I remember at 2 weeks thinking that we had overstayed our welcome but the doctor reassured me that they will take care of Kaitlyn no matter how long that takes. Now I know and trust that they are providing her with the best care. Our nurse thinks that they will hold on to Kailtyn in the TCU for a little bit longer. They want her to gain weight. She is currently 2.3kgs and the Children's ward does not take babies under 2.5kgs. Because Kaitlyn's health is compromised, she has to use more energy to sustain herself so gaining weight will take more effort for her than other babies. They have doubled the amount of formula supplementing her feeds.
The nurse is also concerned about her belly that looks like it's getting bigger. Because baby's use their diaphragm to breath, her swollen belly is placing more pressure on her upper respiratory system. Last night they were able to wean her high oxgen flow from 7 to 5...but this morning they put it back up to 7. Fortunately the nurse had warned us that this is a process where often it's one step forward,two steps back.
In spite of all these obstacles Kaitlyn is a fighter.
HAPPY ONE MONTH KAITLYN!
Today we went to visit Ed and Mel and their new baby girl, Evangeline. I got to hold their precious little baby and Lauryn asked me why I was holding this baby and couldn't hold Kaitlyn. She's so smart. On the way to the hospital today we drove past a mosque with spires and domes...and Lauryn said that it was just like in Jasmine...meaning Aladdin.
The doctors and nurses here are very thorough and I like that they aren't in rush to boot us out. We have been her for a whole month already. I remember at 2 weeks thinking that we had overstayed our welcome but the doctor reassured me that they will take care of Kaitlyn no matter how long that takes. Now I know and trust that they are providing her with the best care. Our nurse thinks that they will hold on to Kailtyn in the TCU for a little bit longer. They want her to gain weight. She is currently 2.3kgs and the Children's ward does not take babies under 2.5kgs. Because Kaitlyn's health is compromised, she has to use more energy to sustain herself so gaining weight will take more effort for her than other babies. They have doubled the amount of formula supplementing her feeds.
The nurse is also concerned about her belly that looks like it's getting bigger. Because baby's use their diaphragm to breath, her swollen belly is placing more pressure on her upper respiratory system. Last night they were able to wean her high oxgen flow from 7 to 5...but this morning they put it back up to 7. Fortunately the nurse had warned us that this is a process where often it's one step forward,two steps back.
In spite of all these obstacles Kaitlyn is a fighter.
HAPPY ONE MONTH KAITLYN!
Today we went to visit Ed and Mel and their new baby girl, Evangeline. I got to hold their precious little baby and Lauryn asked me why I was holding this baby and couldn't hold Kaitlyn. She's so smart. On the way to the hospital today we drove past a mosque with spires and domes...and Lauryn said that it was just like in Jasmine...meaning Aladdin.
Saturday, December 12, 2009
Addict
We noticed that Kaitlyn's eyes were red rimmed, that she was sneezing and yawning a lot. Since moving to the Transitional Care Unit we are meeting new nurses who do not know Kiatlyn yet so we mentioned it a few times to the nurses. When we called to check in on Kaitlyn last night the nurse told Paul that they think she is having withdrawal from the morphine. They are now giving her 0.01 mcg whenever she appears agitated. I noticed today that she has not yawned or sneezed once while we have been with her!
Now that Kaitlyn does not have the tube in her throat we are at liberty to pull her out of her crib whenever we want without assistance from the nurses. We are also more involved with her care which means we change her diapers which are courtesy of Children's Hospital while we are here!
Today we have Lauryn her with us. Since we are in the TCU they more lenient and Lauryn is allowed in with us. In the TCU there is a small playroom and there are less patients on this side. It's nice to be together like this.
I try to hold Kaitlyn as much as possible to make up for lost time. Most of the time she is just asleep in our arms. They have those swinging rocker chairs so we end up falling asleep with her.
Kaitlyn loves her soother. She may turn out to be a thumb sucker like her big sister. I know that I was tied to my soother till I was too old for it. It must run in my blood!
For those who are shy bloggers, I encourage you to write a comment, one day Kaitlyn will read her story and will read and see for herself how much she is loved and supported!
Now that Kaitlyn does not have the tube in her throat we are at liberty to pull her out of her crib whenever we want without assistance from the nurses. We are also more involved with her care which means we change her diapers which are courtesy of Children's Hospital while we are here!
Today we have Lauryn her with us. Since we are in the TCU they more lenient and Lauryn is allowed in with us. In the TCU there is a small playroom and there are less patients on this side. It's nice to be together like this.
I try to hold Kaitlyn as much as possible to make up for lost time. Most of the time she is just asleep in our arms. They have those swinging rocker chairs so we end up falling asleep with her.
Kaitlyn loves her soother. She may turn out to be a thumb sucker like her big sister. I know that I was tied to my soother till I was too old for it. It must run in my blood!
For those who are shy bloggers, I encourage you to write a comment, one day Kaitlyn will read her story and will read and see for herself how much she is loved and supported!
Friday, December 11, 2009
THREE POINT TURN
sorry , I typed up a blog THREE times the day before yesterday because I kept losing our internet connection...I think this is also in line with my title...
Wednesday was a huge turning point...I think doctors were surprised to see her turn that corner. It's now Friday and she is in a transitional ward which is still a part of ICU but now that she require less intensive care they still want to keep an eye on her before giving her the all clear to enter the Cardiac Children's ward.
The first miracle is that she is now off the ventilator. This machine was doing all her breathing for her. I hated that tube. It was absolutely necessary for her to live but it was also the cause of all her throat difficulties. The second miracle is that when Dr Kozak removed the tube and looked down her throat he was, "delighted" with what he saw. He did not have to do any surgical procedure to remove any scar or swollen tissue.
Our third miracle is that we heard good news from the GI (Gastro-Intestinal) team. They said that her liver is shrinking. Because her liver is enlarged it was sitting lower in her abdomen than normal. They measure it by seeing how many fingers below the ribline the liver is sitting at. From birth it was about 6 fingers below the ribline. On Wednesday GI reported that it was now 4 fingers below the ribline. We are so happy to hear this because her enlarged liver and spleen made her abdomen look really swollen. It also means that the damage to her liver wasn't so great that it was irreversible. Praise God!
Now that the tube is out, Kaitlyn has a high flow oxygen prong in her nose which helps to keep her lungs from completely collapsing. This is because she doesn't quite have the energy reserve to breath completely unassisted. They will gradually wean the oxygen flow as she gets stronger. She can not go to the ward with the high flow prong as this is ICU equipment. She also needs to gain weight. They are now supplementing her feeds with a bit of high calorie formula. The doctors anticipate that she will graduate to the ward early next week!
Thank you to all for your prayers!
Wednesday was a huge turning point...I think doctors were surprised to see her turn that corner. It's now Friday and she is in a transitional ward which is still a part of ICU but now that she require less intensive care they still want to keep an eye on her before giving her the all clear to enter the Cardiac Children's ward.
The first miracle is that she is now off the ventilator. This machine was doing all her breathing for her. I hated that tube. It was absolutely necessary for her to live but it was also the cause of all her throat difficulties. The second miracle is that when Dr Kozak removed the tube and looked down her throat he was, "delighted" with what he saw. He did not have to do any surgical procedure to remove any scar or swollen tissue.
Our third miracle is that we heard good news from the GI (Gastro-Intestinal) team. They said that her liver is shrinking. Because her liver is enlarged it was sitting lower in her abdomen than normal. They measure it by seeing how many fingers below the ribline the liver is sitting at. From birth it was about 6 fingers below the ribline. On Wednesday GI reported that it was now 4 fingers below the ribline. We are so happy to hear this because her enlarged liver and spleen made her abdomen look really swollen. It also means that the damage to her liver wasn't so great that it was irreversible. Praise God!
Now that the tube is out, Kaitlyn has a high flow oxygen prong in her nose which helps to keep her lungs from completely collapsing. This is because she doesn't quite have the energy reserve to breath completely unassisted. They will gradually wean the oxygen flow as she gets stronger. She can not go to the ward with the high flow prong as this is ICU equipment. She also needs to gain weight. They are now supplementing her feeds with a bit of high calorie formula. The doctors anticipate that she will graduate to the ward early next week!
Thank you to all for your prayers!
Thursday, December 10, 2009
Global TV & Kaitlyn
* photos updated *
* blog was updated but internet connection was lost *
A small film crew from Global TV came by to film for the annual Children's Hospital Miracle Weekend. I got to pose with Kaitlyn. She did most of the work, I just held her soother in. I realized, while the guy was filming, that I had some hangnails. My cuticles are gross too. (This is the result of all the handwashing we have to do here at the hospital). I was excited to be a part of this b/c as parents, you dont realize how much you need something until it's necessary. The children's Hospital staff are amazing, the docs are amazing, the facilities are amazing, the supplies are amazing ... without all this, we'd be in dire straits when it comes to caring for Kaitlyn.
As mentioned above, Clara had typed up something for the blog but it was lost. we'll be updating/typing again soon.
Wednesday, December 9, 2009
The Waiting Room
Kailtyn went into OR this morning at 8.30am to have her breathing tube removed and the swelling in her trachea examined.
...we're waiting to see Kaitlyn. We bumped into Linda (our favourite nurse) at Starbucks. She said that she saw Kaitlyn in the ICU without her tube. That means that things must have gone well in the OR this morning! Praise God! I'm so excited to see her without that dratted tube. The doctors are doing their rounds so we are just waiting in the waiting room. In this day and age you don't have the pace the room, you can just blog! On our way in this morning I had a moment of anxiety...I can see how being anxious can make you feel like you're doing something when you really are helpless. But a split second later I felt my spirit tell me to rest...it's much easier resting than worrying!
Yesterday we got to hold Kaitlyn. The nurse also modified a pacifier. She is so cute! Apparently you suck in a lot of air as well so she spat up. It freaked me out because I didn't know she could do that with the tube in her throat. It looks like she might be a spit uppera...gosh when Lauryn was a new born I remember wondering what I'm supposed to do with all the burp cloths I had because I had so many of them and didn't even need to use them, not once! Looks like I'll have to dig them up for Kailtyn!
Lauryn had fun on her birthday yesterday...she licked off all the pink icing from her cupcake like a little kitten! She got a stamp set as gift and God please help me...there are 40 rubber stamps...and last night she wanted to sample every one of them!
We're going to head in to see our little one!
...we're waiting to see Kaitlyn. We bumped into Linda (our favourite nurse) at Starbucks. She said that she saw Kaitlyn in the ICU without her tube. That means that things must have gone well in the OR this morning! Praise God! I'm so excited to see her without that dratted tube. The doctors are doing their rounds so we are just waiting in the waiting room. In this day and age you don't have the pace the room, you can just blog! On our way in this morning I had a moment of anxiety...I can see how being anxious can make you feel like you're doing something when you really are helpless. But a split second later I felt my spirit tell me to rest...it's much easier resting than worrying!
Yesterday we got to hold Kaitlyn. The nurse also modified a pacifier. She is so cute! Apparently you suck in a lot of air as well so she spat up. It freaked me out because I didn't know she could do that with the tube in her throat. It looks like she might be a spit uppera...gosh when Lauryn was a new born I remember wondering what I'm supposed to do with all the burp cloths I had because I had so many of them and didn't even need to use them, not once! Looks like I'll have to dig them up for Kailtyn!
Lauryn had fun on her birthday yesterday...she licked off all the pink icing from her cupcake like a little kitten! She got a stamp set as gift and God please help me...there are 40 rubber stamps...and last night she wanted to sample every one of them!
We're going to head in to see our little one!
Tuesday, December 8, 2009
GOOD NEWS
I told you once before that I like the hematology doctors...they are always smiling but the best part is they always have good news and are always optimistic. This morning one of the hematologists that was at the round table meeting yesterday came by. She said that they are not going to go ahead with chemotherapy. Although her bilirubin levels are high they said they have seen children with higher levels and they were ok. The conjugated bilirubin is not as harmful at high levels as the unconjugated...the latter can cause brain damage. We learn something new everyday. The hematologists convinced the GI team that Kaitlyn will be ok, that her liver is working fine and that the side effects of chemo outway any benefit at this point. This is such good news because since the doctor mentioned it we have not been given an definitive plan, leaving us hanging in a limbo. Thank you for everyones prayers. We know that our family is covered by an amazing family and community.
Kaitlyn is stable. The nurse put some jammies on her and is modifying a soother. Kaitlyn is off morphine and seems relatively comfortable. This also means she is more alert so we get to see her beautiful eyes.
The plan is to take the breathing tube out first thing tomorrow morning. She has been on steroids to reduce swelling and give her the best possible fighting chance. I really believe it's going to come down to God coming through for her. Please keep her in your prayers today because it will happen first thing tomorrow morning at about 7am or 7.30am.
Gotta keep this short as it's Lauryn birthday today and we want to leave the hospital early to spend time with her on her special day.
Some people have not been able to wait for this chapter and have been calling...thank you for your love and concern...to everyone, your calls are not a bother...we appreciate everyone's support!
Kaitlyn is stable. The nurse put some jammies on her and is modifying a soother. Kaitlyn is off morphine and seems relatively comfortable. This also means she is more alert so we get to see her beautiful eyes.
The plan is to take the breathing tube out first thing tomorrow morning. She has been on steroids to reduce swelling and give her the best possible fighting chance. I really believe it's going to come down to God coming through for her. Please keep her in your prayers today because it will happen first thing tomorrow morning at about 7am or 7.30am.
Gotta keep this short as it's Lauryn birthday today and we want to leave the hospital early to spend time with her on her special day.
Some people have not been able to wait for this chapter and have been calling...thank you for your love and concern...to everyone, your calls are not a bother...we appreciate everyone's support!
Sunday, December 6, 2009
Cliff Hanger
It's now Sunday evening...sorry to keep you all waiting to hear how her surgery went. (That's the cliff hanger, just so the title doesn't have anyone anxious that Kaitlyn is in a critical situation again). Kaitlyn went into surgery at 11am. At around 1pm the surgeon, Dr. McDonald came out to tell us that the surgery went well. Given that they have closed one source of blood to the lungs I was expecting her Oxygen saturation numbers to come down from the 90% that it was previously sitting at...however, it is still hovering around 90%. The nurse told me to ask the doctor to discuss this. I pray and hope that her surgery was not in vain and that it was beneficial to her heart and body function.
We went to church today. Friends in Sydney, if you want to hear an awesome message please download Sunday, Dec 6th message from our church website, www.newjoychurch.com...I have yet to listen last Sunday's message which was dedicated to our family. I think both Paul and I were a little nervous about seeing so many people but it was good to see and be with our greater community. I'm not sure how Paul felt today about being at church but I felt God's presence...during worship I felt something tickling the top of my head...as if a breeze was blowing through my hair.
Tomorrow the doctors are going to have a round table discussion with all the specialists involved with Kaitlyn's case. This involves cardiology, oncology, hematology, GI (I met Dr. Guttman today)and the Intesivists (doctors of the Intesive Care Unit)...they are going to discuss the next steps and then discuss their plans with us afterwards. Please pray for continued hope for Kaitlyn's life. Despite the doctors having to prepare us for the worse, we have to stand defiant, strong and continue to believe in our God who defies the natural and normal realm.
Even though Kaitlyn is pretty sedated she is still sucking on her tube...I'm very encouraged to see her be a regular baby. One of the things that keeps me going and believing is a vision of picking her up one day. I will scoop her up under her arms and hold her without being anxious about tubes or her being too fragile...when we sit by her bedside, she's so close yet so far...but this picture makes me feel like it's not that far or impossible.
We went to church today. Friends in Sydney, if you want to hear an awesome message please download Sunday, Dec 6th message from our church website, www.newjoychurch.com...I have yet to listen last Sunday's message which was dedicated to our family. I think both Paul and I were a little nervous about seeing so many people but it was good to see and be with our greater community. I'm not sure how Paul felt today about being at church but I felt God's presence...during worship I felt something tickling the top of my head...as if a breeze was blowing through my hair.
Tomorrow the doctors are going to have a round table discussion with all the specialists involved with Kaitlyn's case. This involves cardiology, oncology, hematology, GI (I met Dr. Guttman today)and the Intesivists (doctors of the Intesive Care Unit)...they are going to discuss the next steps and then discuss their plans with us afterwards. Please pray for continued hope for Kaitlyn's life. Despite the doctors having to prepare us for the worse, we have to stand defiant, strong and continue to believe in our God who defies the natural and normal realm.
Even though Kaitlyn is pretty sedated she is still sucking on her tube...I'm very encouraged to see her be a regular baby. One of the things that keeps me going and believing is a vision of picking her up one day. I will scoop her up under her arms and hold her without being anxious about tubes or her being too fragile...when we sit by her bedside, she's so close yet so far...but this picture makes me feel like it's not that far or impossible.
Saturday, December 5, 2009
PDA Ligation
...at last, I watched as they wheeled our daughter away to the operating room. An hour behind schedule this morning, that's not too bad. The anethesiologist had quite the sense of humour...he said that they were taking her back in under warranty! :)
We're waiting in the waiting room with Lauryn...we'll keep you posted once Kaitlyn comes out of the OR...
We're waiting in the waiting room with Lauryn...we'll keep you posted once Kaitlyn comes out of the OR...
surgery update con't
ok. so we were told yesterday that the surgery would be at 9pm. then a doc came in and said that it'd be at 6:30 or 7pm. then it went back to 9pm. so we went to eat and then a phone call came saying that the surgery would be bumped to saturday morning at 10am. aiya. we've learned that nothing is exact or on time at the hospital. we'll keep you all posted.
Friday, December 4, 2009
surgery update
just found out that Kaitlyn's going in for surgery btwn 6:30-7pm. we'll keep you posted
for more information on the type of surgery, please read the link below
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
for more information on the type of surgery, please read the link below
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
Dec 4th - In His Loving Arms
We haven't been blogging everyday...some days we just can't squeeze it in...first priorities are our children...then there are everyday things that just need to get done, like grocery shopping, laundry and cleaning, esp. when you have a toddler who loves to create mess!
...so today there are two blogs.
Kaitlyn has developed her sucking reflex. I'm very excited about this because baby's with trisomy can have low muscle tone which can result in difficulty with nursing...but she's sucking on her tube which is in her mouth and down her throat. Kaitlyn may go into surgery for her PDA ligation at 9pm tonight...this means they have kept her stomach empty all day...so this sucking reflex may be a combination of just being hungry and reaching her due date milestone. Although she was scheduled to be delivered via c-section on Nov 17th, she surprised us all and arrived early on Nov 13th. Her real due date, however, was Nov 30th.
The GI (Gastro Intestinal) doctor (one named doctor Gutman!!!) think that her high bilirubin (Soo is that the right spelling?!?) may be caused by her transient anemia...it has another medical name but don't know how to spell it. Transient anemia is similar to luekemia but it is meant to get better on it's own...but the doctors are now talking about giving her some chemo therapy...they will talk to us more about it tomorrow. Please pray pray pray that it's not luekemia. Children with trisomy 21 have more prone to developing luekemia. Because Kaitlyn was born with transient anemia she has a 30% chance of developing luekemia in the first 3 years of her life. However the success rate for treatment is 80-90%. Still it just seems like too much for a baby to have to endure.
I was talking to my sister last night...who has been a great comforter and encourager (along with our awesome New Joy Community)...she was reminding me that Kaitlyn's middle name is Faith. And that standing firm in the midst of this trial is all about faith. Thanks for preaching it to me!
It's highly unlikely that my parents will read this blog, not because they don't care...but they just aren't computer or technology savvy...I haven't called them yet...not because I mean to be a bad daughter but I know I won't be able to talk to them without breaking down completely and I mean completely...the blubbering crying where you just can't talk...I just can't go there right now. My sister has been the middle man, updating my parents...why am I sharing this? As much as I am sharing this blog with everyone...it's also a way for me to journal everything we're going through; the good, the bad, the ugly.
As we pray for Kaitlyn before she goes into surgery. I pray and place her in God's loving arms...and I say to God...if He takes her I understand...and if He gives her back to us, that I will love her with everything we've got...so we entrust her completely into His loving arms knowing that He is trustworthy, good, faithful and most of all, that His love is perfect.
We just signed the consent for the surgery with the cardiac surgeon...she's now slated for 6.30-7pm.
...so today there are two blogs.
Kaitlyn has developed her sucking reflex. I'm very excited about this because baby's with trisomy can have low muscle tone which can result in difficulty with nursing...but she's sucking on her tube which is in her mouth and down her throat. Kaitlyn may go into surgery for her PDA ligation at 9pm tonight...this means they have kept her stomach empty all day...so this sucking reflex may be a combination of just being hungry and reaching her due date milestone. Although she was scheduled to be delivered via c-section on Nov 17th, she surprised us all and arrived early on Nov 13th. Her real due date, however, was Nov 30th.
The GI (Gastro Intestinal) doctor (one named doctor Gutman!!!) think that her high bilirubin (Soo is that the right spelling?!?) may be caused by her transient anemia...it has another medical name but don't know how to spell it. Transient anemia is similar to luekemia but it is meant to get better on it's own...but the doctors are now talking about giving her some chemo therapy...they will talk to us more about it tomorrow. Please pray pray pray that it's not luekemia. Children with trisomy 21 have more prone to developing luekemia. Because Kaitlyn was born with transient anemia she has a 30% chance of developing luekemia in the first 3 years of her life. However the success rate for treatment is 80-90%. Still it just seems like too much for a baby to have to endure.
I was talking to my sister last night...who has been a great comforter and encourager (along with our awesome New Joy Community)...she was reminding me that Kaitlyn's middle name is Faith. And that standing firm in the midst of this trial is all about faith. Thanks for preaching it to me!
It's highly unlikely that my parents will read this blog, not because they don't care...but they just aren't computer or technology savvy...I haven't called them yet...not because I mean to be a bad daughter but I know I won't be able to talk to them without breaking down completely and I mean completely...the blubbering crying where you just can't talk...I just can't go there right now. My sister has been the middle man, updating my parents...why am I sharing this? As much as I am sharing this blog with everyone...it's also a way for me to journal everything we're going through; the good, the bad, the ugly.
As we pray for Kaitlyn before she goes into surgery. I pray and place her in God's loving arms...and I say to God...if He takes her I understand...and if He gives her back to us, that I will love her with everything we've got...so we entrust her completely into His loving arms knowing that He is trustworthy, good, faithful and most of all, that His love is perfect.
We just signed the consent for the surgery with the cardiac surgeon...she's now slated for 6.30-7pm.
Dec 4
We weren't sure if Kaitlyn was going to have her PDA ligation surgery yesterday but in the end the docs decided to postpone till Friday...so we spent the day with Lauryn. We started the day with a trip to the Aquarium and then we stopped by the hospital. They allowed Lauryn into the ICU and the nurses were great...they let Lauryn help them pick out a blankie for Kaitlyn among handling some of the medical stuff...after a short visit we went to Sophia's princess birthday party. Lauryn dressed up as Cinderella, complete with dress and Cinderella shoes. The funniest thing was that Sophia was wearing the same dress and shoes...as Tai put it, "how embarrassing"...but maybe they did plan it that way! 
Kaitlyn's bilirubin level is up causing her to look yellow. The nurses are so considerate. They usually leave the lights out so the lighting doesn't highlight how yellow she is. When the lights are on she looks like the Simpsons who are also very yellow! Bilirubin is the broken down red blood cells that are meant to be secreted from the liver with the bile and out of the body with her stools. This is what gives our stool it's brown colour! (We are A-pluis students her in the ICU, we're learning so much). The doctors are going to do a series of different tests to rule out different causes for her high bilirubin levels. None of her symptoms correspond with the causes they are exploring but one thing I appreciate about the doctors here is that they are very thorough. They do not leave any stone unturned. Once they rule out all the simple causes they will explore some rarer causes that may be linked to genetics. Please pray that her bilirubin levels will drop and that her liver is functioning perfectly.
It's definitely difficult being the mother of two children let alone having one in ICU. We're torn between wanting to spend every moment with Kaitlyn and being a present for Lauryn. Every time we are with Kaitlyn we stroke her hair and talk to let her know we are there.
Yesterday was a short day with Kaitlyn. The nurses are careful to keep Kaitlyn sedated enough that she isn't active as she tends to wave her arms about and turn her head this way and that which is not good for her throat. But we're proud of her feisty nature!
Yesterday was a short day with Kaitlyn. The nurses are careful to keep Kaitlyn sedated enough that she isn't active as she tends to wave her arms about and turn her head this way and that which is not good for her throat. But we're proud of her feisty nature!
Kaitlyn's bilirubin level is up causing her to look yellow. The nurses are so considerate. They usually leave the lights out so the lighting doesn't highlight how yellow she is. When the lights are on she looks like the Simpsons who are also very yellow! Bilirubin is the broken down red blood cells that are meant to be secreted from the liver with the bile and out of the body with her stools. This is what gives our stool it's brown colour! (We are A-pluis students her in the ICU, we're learning so much). The doctors are going to do a series of different tests to rule out different causes for her high bilirubin levels. None of her symptoms correspond with the causes they are exploring but one thing I appreciate about the doctors here is that they are very thorough. They do not leave any stone unturned. Once they rule out all the simple causes they will explore some rarer causes that may be linked to genetics. Please pray that her bilirubin levels will drop and that her liver is functioning perfectly.
Wednesday, December 2, 2009
some medical stuff
After being at the ICU for this long, we've picked up a lot of 'medical lingo' i wanted to share and to remember the things that have happened.
Kaitlyn had a BT-Shunt surgery a few days after she was born (Nov16), hence the scar on her left side. She's recovering from that surgery. We were surprised to see how large the incision was but then realized that the hands of the doctor was large and she's so tiny. For more information, here's a link.
http://en.wikipedia.org/wiki/Blalock-Taussig_shunt
A few days after that her PDA valve reopened. PDA (Patent Ductus Arteriosus) not (Public Display of Affection) is a small valve that is open when the baby is in utero but then usually closes after a few minutes or a few days.
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
Kaitlyn is scheduled for surgery to close this PDA valve this Friday. It's a simple procedure but she'll end up having a scar on the other side. poor baby. The doctors are confident that doing this procedure is easy and that she'll pull through.
Kaitlyn had a BT-Shunt surgery a few days after she was born (Nov16), hence the scar on her left side. She's recovering from that surgery. We were surprised to see how large the incision was but then realized that the hands of the doctor was large and she's so tiny. For more information, here's a link.
http://en.wikipedia.org/wiki/Blalock-Taussig_shunt
A few days after that her PDA valve reopened. PDA (Patent Ductus Arteriosus) not (Public Display of Affection) is a small valve that is open when the baby is in utero but then usually closes after a few minutes or a few days.
http://www.nhlbi.nih.gov/health/dci/Diseases/pda/pda_what.html
Kaitlyn is scheduled for surgery to close this PDA valve this Friday. It's a simple procedure but she'll end up having a scar on the other side. poor baby. The doctors are confident that doing this procedure is easy and that she'll pull through.
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