Olive went into surgery this morning around 11:00 am. The procedure took about 1.5 hours and everything went well. They intubated before the surgery and her feedings have been stopped since 4 am. She hasn't woken up much since the surgery because they have been giving her a little morphine to keep her comfortable. If things continue to go well, she will most likely come off the ventilator tomorrow. We will keep you posted on her progress.
Thank-you for your many prayers for her today. We spent the day with close friends and family and we are so grateful to be here surrounded by so much support.
Thursday, December 31, 2009
Wednesday, December 30, 2009
home with a plan for surgery in the morning.
We are home and so thankful to finally be here.
The days up until leaving were filled with packing and lots of planning to put everything together for the trip home. We said our good-byes to the other NICU parents we had become close to over the last two months and were touched by their kind words, gifts, and desire to stay in touch. Olive said good-bye to some of her fellow NICU buddies and nurses who took such good care of her.
Before leaving Bangkok four of the nurses we had grown to love from the government hospital came to meet us and say good-bye at 1:30 am and came with us to the airport at 3:00 am.
Two of our friends, Chad and Becky Dale surprised us by meeting us in Atlanta and we were able to spend about 30 minutes together before we flew to South Bend and they continued home to Seattle. We just went to Burma together a few months ago and it was so special to see them again.
This is the Thai doctor and nurse who flew us home. These were the same two who had flown to Chiang Rai to pick up Olive and take her to Bangkok for her first medical evacuation, and also cared for her while she was in the private hospital in Bangkok.
We have also been able to sleep down the hall from Olive in Ronald Mc Donald rooms which has been such a blessing.
Last night they did another CT scan on Olive and this morning we met with the neurosurgeon to discuss the results. The plan is to go ahead with the surgery tomorrow morning (Thursday) at 11:00 am. The neurosurgeon who will be placing the VP shunt is retiring on January 1st. After hearing about Olive's story from Dr. White, he agreed to place the shunt as his final surgery. We have been told he has a reputation of being meticulous with sterility and because of this has an extremely low infection rate with his surgeries. It is hard to deny that God has been working out all of these details.
The meeting this morning was a difficult one. The neurosurgeon said there is significant damage in the back of her brain, and in other areas as well. Hearing this in perfect english was harder than we expected. I wish we could stop hoping for a better prognosis, and just be able to expect the worse case scenario, but that has been impossible to do. Its so hard to imagine these things when she is just a little baby. Then the feelings of guilt return...wondering if there was something I could have done differently to prevent my pre-term labor and prevent this brain hemorrhage.
We can both look back and see God moving and working in many ways through bringing Olive into our lives so early...but it still doesn't take away the pain. Or the reality that this is no longer a dream that we will wake up from. This is real life. Life has changed dramatically, and even though we know we will get through it the fears for the future often feel much too heavy.
My biggest fear isn't how drastically this could change our lives, but rather the thought of growing old and dying before Olive...worrying who will care for her and continue to give her the love she will need.
The neurosurgeon said he cannot tell us what her prognosis will look like, but based on statistics with children like Olive, her outcome will most likely include having serious disabilities. We asked difficult questions, but many of the answers are still unknown at this stage in the journey.
Though this day has been scattered with tears and questions without answers, are hearts are feeling so much peace to be here in this NICU and close to friends and family. So thankful to have Dr. White caring for Olive and the wonderful nurses here.
More to come tomorrow...we would love your prayers for her as she goes into surgery. They said that she will go on a ventilator before the surgery and may be on it for 1-2 days until she recovers from the anesthesia. She has been doing well on only room air, so we are encouraged by that.
thank-you for all of your prayers, love and support.
The days up until leaving were filled with packing and lots of planning to put everything together for the trip home. We said our good-byes to the other NICU parents we had become close to over the last two months and were touched by their kind words, gifts, and desire to stay in touch. Olive said good-bye to some of her fellow NICU buddies and nurses who took such good care of her.
This is the Thai doctor and nurse who flew us home. These were the same two who had flown to Chiang Rai to pick up Olive and take her to Bangkok for her first medical evacuation, and also cared for her while she was in the private hospital in Bangkok.
After a fairly stressful flight, 24 hours later we arrived in South Bend and were met by family and friends. I wish I had a picture of the crowd of close friends and family that were there waiting to meet us. We were emotional messes-- so thankful to be home with such love and support around us.
Dr. White was also waiting at the airport to meet us--even on his 60th birthday. He then drove the Thai medical team to the hospital, and woke up in the wee hours of the morning to take them back to the airport...far above and beyond his job description.
The atmosphere at Memorial NICU feels very different than the last three NICUs we have been in. The biggest difference has been how much value they place on parents spending time with their babies. We are able to visit Olive and hold her 24 hours a day. The grandparents can also visit anytime without us being there and hold her. Any other friends and family can visit with us, but cannot touch or hold her.
We have also been able to sleep down the hall from Olive in Ronald Mc Donald rooms which has been such a blessing.
Last night they did another CT scan on Olive and this morning we met with the neurosurgeon to discuss the results. The plan is to go ahead with the surgery tomorrow morning (Thursday) at 11:00 am. The neurosurgeon who will be placing the VP shunt is retiring on January 1st. After hearing about Olive's story from Dr. White, he agreed to place the shunt as his final surgery. We have been told he has a reputation of being meticulous with sterility and because of this has an extremely low infection rate with his surgeries. It is hard to deny that God has been working out all of these details.
The meeting this morning was a difficult one. The neurosurgeon said there is significant damage in the back of her brain, and in other areas as well. Hearing this in perfect english was harder than we expected. I wish we could stop hoping for a better prognosis, and just be able to expect the worse case scenario, but that has been impossible to do. Its so hard to imagine these things when she is just a little baby. Then the feelings of guilt return...wondering if there was something I could have done differently to prevent my pre-term labor and prevent this brain hemorrhage.
We can both look back and see God moving and working in many ways through bringing Olive into our lives so early...but it still doesn't take away the pain. Or the reality that this is no longer a dream that we will wake up from. This is real life. Life has changed dramatically, and even though we know we will get through it the fears for the future often feel much too heavy.
My biggest fear isn't how drastically this could change our lives, but rather the thought of growing old and dying before Olive...worrying who will care for her and continue to give her the love she will need.
The neurosurgeon said he cannot tell us what her prognosis will look like, but based on statistics with children like Olive, her outcome will most likely include having serious disabilities. We asked difficult questions, but many of the answers are still unknown at this stage in the journey.
Though this day has been scattered with tears and questions without answers, are hearts are feeling so much peace to be here in this NICU and close to friends and family. So thankful to have Dr. White caring for Olive and the wonderful nurses here.
More to come tomorrow...we would love your prayers for her as she goes into surgery. They said that she will go on a ventilator before the surgery and may be on it for 1-2 days until she recovers from the anesthesia. She has been doing well on only room air, so we are encouraged by that.
thank-you for all of your prayers, love and support.
Monday, December 28, 2009
Coming home..
If all goes as planned we will be landing in South Bend on December 29th at 4:58 pm. It has been a draining day getting all the details together but we are hopeful that soon and very soon we will be home.
Please pray for Olive's safety on the way home.
Pray for her little ears as we go up and come down.
Pray for things to go well with the airline...
I have never felt so patriotic in my entire life in my love for home.
Please pray for Olive's safety on the way home.
Pray for her little ears as we go up and come down.
Pray for things to go well with the airline...
I have never felt so patriotic in my entire life in my love for home.
Saturday, December 26, 2009
Feeling Gitty.
Well, looks like our own little Christmas miracle may come true. Things are in the workings and so far going smoothly for us to return home on the 29th of December! Everything just came together yesterday, but we are still sorting out details.
Looks like we will be ending up in South Bend, IN at Memorial Hospital. Dr. White, the neonatologist there, has been walking this journey with us since the beginning. Since Olive's birth he has told us to call him anytime of the day or night with questions, answered our e-mails and given us advice in our hardest of moments. He even volunteered to fly to Thailand to help us get home safely. Doesn't he sound too good to be true?
We are trying not to get our hopes up too high until we are actually on the airplane, but it's hard not too. We would be returning with one Thai doctor and one nurse on a commercial flight that will allow us to have oxygen on board.
Feeling pretty gitty this morning.
Looks like we will be ending up in South Bend, IN at Memorial Hospital. Dr. White, the neonatologist there, has been walking this journey with us since the beginning. Since Olive's birth he has told us to call him anytime of the day or night with questions, answered our e-mails and given us advice in our hardest of moments. He even volunteered to fly to Thailand to help us get home safely. Doesn't he sound too good to be true?
We are trying not to get our hopes up too high until we are actually on the airplane, but it's hard not too. We would be returning with one Thai doctor and one nurse on a commercial flight that will allow us to have oxygen on board.
Feeling pretty gitty this morning.
Friday, December 25, 2009
Reflections on Christmas from Rusty
The last few days have been filled with many different emotions. Holiday season makes both us really homesick, knowing family is together and wanting to be with them. However, being away has also made me thankful for what I do have. We were able to skype with our families which meant a lot.
Yesterday I walked around Bangkok and watched people celebrating Christmas. There was a sense of Christmas, but it just didn't feel the same. There are beautiful lights and huge Christmas trees-- even Santa and his reindeer. It had the feel of Christmas, and carols were being played, but the words were meaningless to most of those celebrating. I want them to know what this holiday is all about. "O Holy Night" was playing yesterday as I walk around the mall. For the first time I really listened to the words of this song and was moved by power they hold. The words brought tears to my eyes, reminding me of why I get out of bed in the morning.
His birth brought us hope--the very thing we cling to when our lives seem confusing or disappointing. Where would I be without hope? I am so thankful for the hope that Jesus has given me. We have been so thankful for our friends and family who have come around us in a way that humbles us. I'm grateful to be Olive's dad. I never thought such a little person could steal my heart like she has. In her short three months of life she has already taught me so much and I'm sure she will continue to in the years ahead.
If you are walking through a hard time this Christmas season, I hope that reading or singing this verse of "O Holy Night" will touch you as it has me.
The King of Kings lay thus lowly manger;
In all our trials born to be our friend.
He knows our need, our weakness is no stranger,
Behold your King! Before Him lowly bend.
Behold your King! Before Him lowly bend.
Truly He taught us to love one another,
His law is love and His gospel is peace.
Chains He shall break, for the slave is our brother.
And in His name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise.
If you are walking through a hard time this Christmas season, I hope that reading or singing this verse of "O Holy Night" will touch you as it has me.
The King of Kings lay thus lowly manger;
In all our trials born to be our friend.
He knows our need, our weakness is no stranger,
Behold your King! Before Him lowly bend.
Behold your King! Before Him lowly bend.
Truly He taught us to love one another,
His law is love and His gospel is peace.
Chains He shall break, for the slave is our brother.
And in His name all oppression shall cease.
Sweet hymns of joy in grateful chorus raise.
Thursday, December 24, 2009
Wednesday, December 23, 2009
An advent prayer for Christmas.
We just got a LOVELY christmas package in the mail today from a bunch of our friends in Seattle. SOOOO special.
In the package they included this Advent Prayer by Henry Nouwen that I loved and wanted to share.
Sunday, December 20, 2009
thankful.
Crawling into bed tonight just feeling thankful for how things have been going lately. We are grateful to have a neonatologist caring for Olive who speaks such good english and can explain procedures and diagnosis so well with us. Ever since she took over doing the tapping to relieve Olive's fluid we have felt so much more at peace. The primary resident also caring for Olive speaks great English and they have been very patient with all of my many questions.
Going to sleep feeling thankful for having Oilve in a facility where they can do all that needs to be done for her hydrocephalus issue.
Going to sleep feeling thankful for having Oilve in a facility where they can do all that needs to be done for her hydrocephalus issue.
Thursday, December 17, 2009
the practical update.
This morning the doctor tapped Olive's head for 36 ml of fluid. She is talking about starting to do tapping more regularly...about every 4 days or so. Also her protein level in her CSF fluid continues to drop and was at 243 today (the goal is for it to get below 100).
Yesterday we were asked to consider moving Olive out of the ICU and either into a private room or into the well baby nursery. This was suggested as a way for us to save money as well since it is cheaper to move her to the nursery.
Today I was asking a NICU mother about her experience in the nursery for a few days last week and suggested not to go. She said her baby had a distended abdomen for a few days before they addressed it, and that there is a smaller amount of nurses caring for more babies.
The other option to moving her into a private room also has downfalls. If we move to a private room there would primarily be a first year resident and third year resident caring for Olive. It all just feels a little early to move her out of the NICU and honestly I feel like maybe they are just tired of all of our questions and spending so much time visiting Olive. She has though, been much more stable lately. Its days like today when my homesickness creeps up and for a minute all I want is to be home in my own culture.
When we told the doctor we would like to stay in the NICU for now she said that would be ok...for now. She did say that if the NICU gets crowded with new cases that we will have to move out for the risk of infection.
Yesterday we were asked to consider moving Olive out of the ICU and either into a private room or into the well baby nursery. This was suggested as a way for us to save money as well since it is cheaper to move her to the nursery.
Today I was asking a NICU mother about her experience in the nursery for a few days last week and suggested not to go. She said her baby had a distended abdomen for a few days before they addressed it, and that there is a smaller amount of nurses caring for more babies.
The other option to moving her into a private room also has downfalls. If we move to a private room there would primarily be a first year resident and third year resident caring for Olive. It all just feels a little early to move her out of the NICU and honestly I feel like maybe they are just tired of all of our questions and spending so much time visiting Olive. She has though, been much more stable lately. Its days like today when my homesickness creeps up and for a minute all I want is to be home in my own culture.
When we told the doctor we would like to stay in the NICU for now she said that would be ok...for now. She did say that if the NICU gets crowded with new cases that we will have to move out for the risk of infection.
the due date.
I reached my due date two days ago and have been asked by a few people if this has been hard for me. It's actually been the opposite...more thankfulness of still having Olive with us. Our close friend in Chiang Rai named Gee, made Olive a beautiful tiny wooden coffin on the day the doctor told us she was dying in October...the day her heart rate dropped to single digits so many times. Luka and others even dug her grave in Huisan Akha Village on that same day only to be refilled in the coming days. That little coffin is sitting in our house in Chiang Rai, and is an incredible reminder of grace.
The past few days have been hard for both of us. Loved ones close to us also going through incredible lows and difficult journeys in their own parts of the world. Through the mess we are trying to step back and find some perspective.
It's been interesting how many times faith has come up in conversations with nurses, the hotel manager, at the salon, and restaurants. I've been encouraged many times to go pray at the temples or spirit houses for protection over Olive, and to make merit. The other day one of the NICU nurses was telling me about Buddhist beliefs and asking me about Christianity...mainly asking why things like this happen, and how we explain it in our faith.
From a Buddhist standpoint it is pretty clear cut. Everything that happens in this life is a direct result of the choices we made in our past lives. Like one little old lady told me in Chiang Rai, "you made Olive very sad in your last life, so this is how she is coming back to get back at you. This is a trial that will eventually pass. What will be will be. Your job is simply to accept it."
When my friend asked me why these things happen from a Christian's standpoint I kind of froze thinking.."it's so complicated, how can I explain this" and then remembered the quote ""If you can't explain it to a six year old, you don't understand it yourself." So we talked some about Job, and how God allowed Job to be tested and for his world to fall apart simply to test that his love for God would remain steady--even in the midst of incredible pain.
I've been thinking about this lots in the last few days. I've felt so numb and tired lately. It's so easy to be consumed by our own circumstances and lose site of everything around me. Having a personal pitty party about wanting to get home also doesn't benefit anyone, or help those wants become a reality. There are still needs all around me...right here. Other parents whose children are sicker than Olive in the NICU that need support. I don't want to miss out on seeing those things. I read this verse tonight and was reminded of how true this is.
“Remain in me, and I will remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me.” -John 15:4
My hope is that tomorrow morning when I wake up, and when I crawl into bed tomorrow night that I would be drawn to Jesus...the one who is "all kinds of beautiful", infinitely valuable, all satisfying and everlasting. That He would be my treasure when everything else gets gray and blurry.
The past few days have been hard for both of us. Loved ones close to us also going through incredible lows and difficult journeys in their own parts of the world. Through the mess we are trying to step back and find some perspective.
It's been interesting how many times faith has come up in conversations with nurses, the hotel manager, at the salon, and restaurants. I've been encouraged many times to go pray at the temples or spirit houses for protection over Olive, and to make merit. The other day one of the NICU nurses was telling me about Buddhist beliefs and asking me about Christianity...mainly asking why things like this happen, and how we explain it in our faith.
From a Buddhist standpoint it is pretty clear cut. Everything that happens in this life is a direct result of the choices we made in our past lives. Like one little old lady told me in Chiang Rai, "you made Olive very sad in your last life, so this is how she is coming back to get back at you. This is a trial that will eventually pass. What will be will be. Your job is simply to accept it."
When my friend asked me why these things happen from a Christian's standpoint I kind of froze thinking.."it's so complicated, how can I explain this" and then remembered the quote ""If you can't explain it to a six year old, you don't understand it yourself." So we talked some about Job, and how God allowed Job to be tested and for his world to fall apart simply to test that his love for God would remain steady--even in the midst of incredible pain.
I've been thinking about this lots in the last few days. I've felt so numb and tired lately. It's so easy to be consumed by our own circumstances and lose site of everything around me. Having a personal pitty party about wanting to get home also doesn't benefit anyone, or help those wants become a reality. There are still needs all around me...right here. Other parents whose children are sicker than Olive in the NICU that need support. I don't want to miss out on seeing those things. I read this verse tonight and was reminded of how true this is.
“Remain in me, and I will remain in you. No branch can bear fruit by itself; it must remain in the vine. Neither can you bear fruit unless you remain in me.” -John 15:4
My hope is that tomorrow morning when I wake up, and when I crawl into bed tomorrow night that I would be drawn to Jesus...the one who is "all kinds of beautiful", infinitely valuable, all satisfying and everlasting. That He would be my treasure when everything else gets gray and blurry.
Tuesday, December 15, 2009
squid and boiled rice.
Last night the nurses decided Olive needed a little photo shoot while she had her nasal cannula off and ng tube out. Olive was getting tired out as evidenced by the pictures, and it ended with her dosing off. The doctors are saying maybe another two weeks until they will know if she will need to undergo surgery or not for the VP shunt. Tomorrow she will have her head tapped again by the neonatologist. Olive did well breast-feeding today which was a pleasant surprise to her usual grumpy response to it.
We are trying to learn how to be content in the midst of this time of waiting. We find ourselves in a season where everything is out of our control, so all we are left to control is our outlook and where we turn to find our strength.
The nurses have been so kind at the hospital. I think every day this week someone has brought me food to take home for dinner or to share with them. This morning I was invited to eat boiled rice soup with fried squid and dried shrimp for breakfast. Not my usual breakfast, but a sweet gesture.
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We are trying to learn how to be content in the midst of this time of waiting. We find ourselves in a season where everything is out of our control, so all we are left to control is our outlook and where we turn to find our strength.
The nurses have been so kind at the hospital. I think every day this week someone has brought me food to take home for dinner or to share with them. This morning I was invited to eat boiled rice soup with fried squid and dried shrimp for breakfast. Not my usual breakfast, but a sweet gesture.
src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEjovUU2yWpF6XspIYUEWG8cf17hd4T4Vp0isuDHSng4-cBf_RELxHUtMRcci4-uug8QC4EBosDlojRCKqShdqm9fjoC0Vu8aEBAThHtXxJ2ZO18B-khyphenhyphen46eESPcOmXYrxxiVXXfjRz85zU/s400/PC140010.jpg" border="0" alt=""id="BLOGGER_PHOTO_ID_5415485273227930050" />
Sunday, December 13, 2009
Swapping beds.
A few days ago Olive moved out of her isolette and onto bigger and better things. I keep thinking she is looking so much bigger and chubbier until I put premie clothes on her and she is still swimming in them. Lots of thoughts running through my head, but not enough time to share them tonight.
Friday, December 11, 2009
A long awaited cry.
For the first 1.5 months of Olive's life we never heard her cry. We often wondered what her little cry would sound like someday, and if we would even get a chance to hear it. In this video she is getting weighed and powdered up by one of the nurses we love, and clearly not impressed.
Olive now weighs 1.95 kg (4.29 lbs) , which means she is very close to 2 kg (4.4 lbs) (the goal weight for the VP shunt surgery).
After my post about needing blood we got a phone call from a willing donor who knows mutual friends of ours in Chiang Rai. Today Olive is starting the first of three blood transfusions after her hemoglobin was at 8.5 g/dL (normal is 10-14 g/dL) and her hematocrit was 25% (normal is 30-42%). This morning the neonatologist tapped her head and removed another 25 cc of CSF fluid. Everything went well with the procedure. Olive also was moved out of her isolette a few days ago and into her own little bed now that she is able to maintain her body temperature better.
We are falling more in love with her each day.
Olive now weighs 1.95 kg (4.29 lbs) , which means she is very close to 2 kg (4.4 lbs) (the goal weight for the VP shunt surgery).
After my post about needing blood we got a phone call from a willing donor who knows mutual friends of ours in Chiang Rai. Today Olive is starting the first of three blood transfusions after her hemoglobin was at 8.5 g/dL (normal is 10-14 g/dL) and her hematocrit was 25% (normal is 30-42%). This morning the neonatologist tapped her head and removed another 25 cc of CSF fluid. Everything went well with the procedure. Olive also was moved out of her isolette a few days ago and into her own little bed now that she is able to maintain her body temperature better.
We are falling more in love with her each day.
Tuesday, December 8, 2009
Life goes on...
Things have been going better since our talk about our concerns with the neurosurgeon last Saturday. The neonatologist tapped Olive's head on Monday morning, and will continue to observe her closely and do the tapping from now on.
One piece of news we recently were told is that there is a 60% chance they will have to put a VP shunt in (from her head to her abdomen) and a 40% chance that they may NOT need to if the hydrocephalus resolves on its own. The doctors now are monitoring her CSF fluid (cerebrospinal fluid) and waiting for her protein levels to drop back to a normal level. Once the protein levels drop we will observe if that helps her CSF fluid to absorb normally. If her head circumference continues to grow after the protein levels normalize then we will go ahead and place the VP shunt. The doctors are saying the time frame on all of this is within the next 2-4 weeks.
On monday we had a meeting with Olive's doctor from the private hospital we transferred from and he spoke very highly of the neonatologist who is caring for Olive at the government hospital. He agreed we should remain here if things continue changing for the good, but said they will welcome us back at any point.
Breast-feeding has not been going too well. The first two days she latched on well. However, the nurses started giving Olive bottles the other night, and ever since her taking a bottle she isn't latching on well and she gets very frustrated with having to work for her food rather than it just trickling into her mouth. I asked if they could hold off on giving her a bottle for another week while I try breast-feeding, and if we can't get it down then we can go the bottle route. It would just save me time in the future if I could breast-feed her and I didn't have to pump all the time-- but life will go on if we go the bottle route.
Other than this, things are going alright. The one nurse who didn't like me visiting so often continues to show her annoyance with me by giving me the silent treatment. After having a conversation today with the head nurse I learned that maybe this wasn't the first time she has been aggressiveness with other parents. Today I asked that she would not be assigned as Olive's nurse anymore. Pray for me as I sort through how to deal with this situation in a loving way, because at this moment my patience is wearing thin. I will say though, that every other nurse on that unit has been wonderful.
Olive has been anemic so in the next few days she will be getting blood transfusions. We are in need of a donor with A+ blood. If anyone reading is in Bangkok with A+ blood and is willing to donate tomorrow, December 9th, please call my cell (0812850742). We are at Pramongut Hospital (The Army Hospital).
Thank-you for your continued encouragement, prayers, and love.
Lynette
One piece of news we recently were told is that there is a 60% chance they will have to put a VP shunt in (from her head to her abdomen) and a 40% chance that they may NOT need to if the hydrocephalus resolves on its own. The doctors now are monitoring her CSF fluid (cerebrospinal fluid) and waiting for her protein levels to drop back to a normal level. Once the protein levels drop we will observe if that helps her CSF fluid to absorb normally. If her head circumference continues to grow after the protein levels normalize then we will go ahead and place the VP shunt. The doctors are saying the time frame on all of this is within the next 2-4 weeks.
On monday we had a meeting with Olive's doctor from the private hospital we transferred from and he spoke very highly of the neonatologist who is caring for Olive at the government hospital. He agreed we should remain here if things continue changing for the good, but said they will welcome us back at any point.
Breast-feeding has not been going too well. The first two days she latched on well. However, the nurses started giving Olive bottles the other night, and ever since her taking a bottle she isn't latching on well and she gets very frustrated with having to work for her food rather than it just trickling into her mouth. I asked if they could hold off on giving her a bottle for another week while I try breast-feeding, and if we can't get it down then we can go the bottle route. It would just save me time in the future if I could breast-feed her and I didn't have to pump all the time-- but life will go on if we go the bottle route.
Other than this, things are going alright. The one nurse who didn't like me visiting so often continues to show her annoyance with me by giving me the silent treatment. After having a conversation today with the head nurse I learned that maybe this wasn't the first time she has been aggressiveness with other parents. Today I asked that she would not be assigned as Olive's nurse anymore. Pray for me as I sort through how to deal with this situation in a loving way, because at this moment my patience is wearing thin. I will say though, that every other nurse on that unit has been wonderful.
Olive has been anemic so in the next few days she will be getting blood transfusions. We are in need of a donor with A+ blood. If anyone reading is in Bangkok with A+ blood and is willing to donate tomorrow, December 9th, please call my cell (0812850742). We are at Pramongut Hospital (The Army Hospital).
Thank-you for your continued encouragement, prayers, and love.
Lynette
Sunday, December 6, 2009
Hoping for a change...
Yesterday we met with the neurosurgeon and his team. We shared all of our frustrations with Olives' care so far, and our concern with her remaining here without a better plan in place.
Before leaving after the meeting he tapped Olive's head and removed 20 ml of fluid.
Our neonatologist had training in the States before and she has agreed to do tapping every two days to remove fluid. This seems to be a good option, better than waiting for the neurosurgeons to come who are extremely busy.
Tomorrow the neonatologist is going to do another tap. Rusty and I have agreed to give this hospital another 3-4 days and see how things go after having our meeting with the neurosurgeon and see if things improve. They are saying that if the protein continues to decrease in her CSF (cerebral spinal fluid), and she reaches 2 kg (4.4 lbs) then they would go ahead with the VP shunt surgery.
thanks for your continued words of encouragement and prayers.
Before leaving after the meeting he tapped Olive's head and removed 20 ml of fluid.
Our neonatologist had training in the States before and she has agreed to do tapping every two days to remove fluid. This seems to be a good option, better than waiting for the neurosurgeons to come who are extremely busy.
Tomorrow the neonatologist is going to do another tap. Rusty and I have agreed to give this hospital another 3-4 days and see how things go after having our meeting with the neurosurgeon and see if things improve. They are saying that if the protein continues to decrease in her CSF (cerebral spinal fluid), and she reaches 2 kg (4.4 lbs) then they would go ahead with the VP shunt surgery.
thanks for your continued words of encouragement and prayers.
Friday, December 4, 2009
Another day...
Olive did well overnight. Today after arriving at the hospital the head nurse asked us to talk to her in her office. She said she that last night she heard about last night's incidence with the nurse being rude and wanted to apologize. Apparently this isn't the first time this nurse has been aggressive with parents in the NICU. She told me that she communicated with all the nurses that we are able to visit from 8 am to 8 pm, and that the nurse will be written up for her impolite behavior.
We got a random phone call from our doctor at the private hospital just checking in. When we talked about our concerns, they suggested we talk directly with the head neurosurgeon about these issues and spoke very highly of the neonatologist and neurusurgery team at the government hospital.
We originally moved Olive to this hospital because the doctors at the private hospital spoke very highly of the neurosurgeon here. As much as we have grown to love the residents here, we are not willing for Olive to continue to be an experiment for them to learn on, especially with procedures that will may affect her brain and long-term outcome. Since arriving here we have had two poorly done lumbar punctures, and another poorly placed drain with mistakes made when removing it.
All this to say, tomorrow we have a meeting set up with the head neurosurgeon to talk about what the plan will be to continue removing fluid from Olive's head, and to request him to be the one to do these procedures or the same person to do it consistently.
This evening after visiting hours ended, we went with one of the NICU nurses to see Christmas lights downtown Bangkok in celebration of the king of Thailand. We had a really nice evening out together.
Sleep is beckoning me...
We got a random phone call from our doctor at the private hospital just checking in. When we talked about our concerns, they suggested we talk directly with the head neurosurgeon about these issues and spoke very highly of the neonatologist and neurusurgery team at the government hospital.
We originally moved Olive to this hospital because the doctors at the private hospital spoke very highly of the neurosurgeon here. As much as we have grown to love the residents here, we are not willing for Olive to continue to be an experiment for them to learn on, especially with procedures that will may affect her brain and long-term outcome. Since arriving here we have had two poorly done lumbar punctures, and another poorly placed drain with mistakes made when removing it.
All this to say, tomorrow we have a meeting set up with the head neurosurgeon to talk about what the plan will be to continue removing fluid from Olive's head, and to request him to be the one to do these procedures or the same person to do it consistently.
This evening after visiting hours ended, we went with one of the NICU nurses to see Christmas lights downtown Bangkok in celebration of the king of Thailand. We had a really nice evening out together.
Sleep is beckoning me...
Thursday, December 3, 2009
Get us out of here!
Rough and frustrating day.
This morning after we arrived to the hospital we were told we needed to leave the NICU while the neurosurgeon tapped Olive's head. Midway through the procedure the neonatologist came out to tell us that the neurosurgeon had changed his mind and decided to put in a temporary drain that would stay in for seven days. She told us the procedure was almost finished, and we started asking many questions. For one, why was he doing a different procedure than he had discussed with us yesterday without talking to us first? Especially because we had talked with him yesterday about our concerns with placing a temporary drain when Olive still has lingering signs of her infection (her WBC count and protein aren't yet back to normal since her meningitis). We were told by a neonatologist we trust from the States that this is not an ideal procedure given her current labs.
After he finished the procedure he came and talked to us. He said that the research shows the same rate of infection between intermittent tapping and a temporary drain...not what we have heard from other sources.
Throughout the day Olive's oxygen level wasn't as well as normal so they decided to increase her oxygen. She also had an increased heart rate with no signs of infection so they thought she was having pain from the procedure...things that didn't happen with the drain the last three times.
The doctors and nurses told me they would like to keep her in the incubator for the afternoon so that she could rest. I was feeling pretty frustrated as to why she couldn't rest in my arms so I asked the head doctor again and she said it would be ok to hold her. After holding her her oxygen saturation went up on its own and we could take her off of the oxygen they were giving her.
They had put tape all over her head to keep this drain in place and some of it was coming off and I could see the catheter from the drain was starting to come out. The neurosurgeon had tried to secure it with the nipple off a bottle and that was filled with moisture from Olive sweating. Warm and moist...a perfect breeding ground for bacteria.
So I showed the doctor that the catheter was coming out and pointed out the moisture. All the residents came over to look and after calling the neurosurgeon they decided to remove the drain later tonight to prevent infection. They decided to take out an additional 20 ml before removing it. In the morning they had only removed 5 ml...which I am still confused at why they would remove such a little amount.
The resident came to remove the drain. After the resident started draining the fluid, we noticed the tape on her head getting wet...not a good sign. By the time everything was finished and we were cleaning up the tech came to test the CSF fluid and pointed out that there were 53 ml of fluid in the container. That means that instead of draining the 20 ml of fluid as planned, somehow she didn't notice it continuing to drain and she ended up draining about 48 ml of fluid in a two minute period.
Earlier today they told me the max they can drain is 10 ml/kg every four hours. That would mean 17 ml of fluid every four hours. Clearly you can see this wasn't ideal. The doctor tried to play it cool and I was nervously looking at Olive. Her fontanel was extremely sunk in after everything was over. The resident then told the neonatologist what had happened and the neurosurgeon. They said the biggest things they worry about it dehydration, low blood pressure, and electrolyte imbalances. I have also been told before that they cannot remove the fluid too quickly or it can have serious implications on the brain.
I didn't want to put Olive back in her isolette tonight.
Then one of the younger nurses came over and said in Thai, "Mother, you can hold her for ten more minutes and then you need to go home so that we nurses can work." So the nurses can work? Am I really bothering you that much by sitting here and holding Olive as she sleeps in my arms? Ten minutes later she returned to give me a lecture about visiting Olive too much and getting in the nurses way. I told her that I didn't understand, because the head nurse gave us the ok to visit her outside of the normal visiting hours. I said that it didn't seem to bother anyone but her. She said it would be better if we came less like the other parents and that our daughter's situation is better than the other babies in the room.
I wanted to tell her that I didn't want to be here. That Olive was supposed to go back to the States last week, but she got meningitis from her drain and couldn't leave. I wanted to tell her that in the NICU in America that the parents can visit 24 hours and research proves the benefits of it.
Let's just say that by the end of our conversation I was in tears and walking home.
Who knows what tomorrow will bring...but I am praying lots of prayers that Olive will be o.k. tonight despite the circumstances of today.
This morning after we arrived to the hospital we were told we needed to leave the NICU while the neurosurgeon tapped Olive's head. Midway through the procedure the neonatologist came out to tell us that the neurosurgeon had changed his mind and decided to put in a temporary drain that would stay in for seven days. She told us the procedure was almost finished, and we started asking many questions. For one, why was he doing a different procedure than he had discussed with us yesterday without talking to us first? Especially because we had talked with him yesterday about our concerns with placing a temporary drain when Olive still has lingering signs of her infection (her WBC count and protein aren't yet back to normal since her meningitis). We were told by a neonatologist we trust from the States that this is not an ideal procedure given her current labs.
After he finished the procedure he came and talked to us. He said that the research shows the same rate of infection between intermittent tapping and a temporary drain...not what we have heard from other sources.
Throughout the day Olive's oxygen level wasn't as well as normal so they decided to increase her oxygen. She also had an increased heart rate with no signs of infection so they thought she was having pain from the procedure...things that didn't happen with the drain the last three times.
The doctors and nurses told me they would like to keep her in the incubator for the afternoon so that she could rest. I was feeling pretty frustrated as to why she couldn't rest in my arms so I asked the head doctor again and she said it would be ok to hold her. After holding her her oxygen saturation went up on its own and we could take her off of the oxygen they were giving her.
They had put tape all over her head to keep this drain in place and some of it was coming off and I could see the catheter from the drain was starting to come out. The neurosurgeon had tried to secure it with the nipple off a bottle and that was filled with moisture from Olive sweating. Warm and moist...a perfect breeding ground for bacteria.
So I showed the doctor that the catheter was coming out and pointed out the moisture. All the residents came over to look and after calling the neurosurgeon they decided to remove the drain later tonight to prevent infection. They decided to take out an additional 20 ml before removing it. In the morning they had only removed 5 ml...which I am still confused at why they would remove such a little amount.
The resident came to remove the drain. After the resident started draining the fluid, we noticed the tape on her head getting wet...not a good sign. By the time everything was finished and we were cleaning up the tech came to test the CSF fluid and pointed out that there were 53 ml of fluid in the container. That means that instead of draining the 20 ml of fluid as planned, somehow she didn't notice it continuing to drain and she ended up draining about 48 ml of fluid in a two minute period.
Earlier today they told me the max they can drain is 10 ml/kg every four hours. That would mean 17 ml of fluid every four hours. Clearly you can see this wasn't ideal. The doctor tried to play it cool and I was nervously looking at Olive. Her fontanel was extremely sunk in after everything was over. The resident then told the neonatologist what had happened and the neurosurgeon. They said the biggest things they worry about it dehydration, low blood pressure, and electrolyte imbalances. I have also been told before that they cannot remove the fluid too quickly or it can have serious implications on the brain.
I didn't want to put Olive back in her isolette tonight.
Then one of the younger nurses came over and said in Thai, "Mother, you can hold her for ten more minutes and then you need to go home so that we nurses can work." So the nurses can work? Am I really bothering you that much by sitting here and holding Olive as she sleeps in my arms? Ten minutes later she returned to give me a lecture about visiting Olive too much and getting in the nurses way. I told her that I didn't understand, because the head nurse gave us the ok to visit her outside of the normal visiting hours. I said that it didn't seem to bother anyone but her. She said it would be better if we came less like the other parents and that our daughter's situation is better than the other babies in the room.
I wanted to tell her that I didn't want to be here. That Olive was supposed to go back to the States last week, but she got meningitis from her drain and couldn't leave. I wanted to tell her that in the NICU in America that the parents can visit 24 hours and research proves the benefits of it.
Let's just say that by the end of our conversation I was in tears and walking home.
Who knows what tomorrow will bring...but I am praying lots of prayers that Olive will be o.k. tonight despite the circumstances of today.
Wednesday, December 2, 2009
The little champ.
Had a really good day with Olive today. This morning the opthamologist came and looked at her again and said he is still very pleased with the results and doesn't think she will be needing any further treatment. They will keep doing weekly checks to make sure things continue to stay on track with her vision.
This afternoon we started breast-feeding. Olive latched on like a little champ, and once she was on her eyes got huge and she looked really excited and unsure what to do about the milk coming out into her mouth. I was laughing at her little expression and trying not to scare her with my shaking. Her vitals stayed good, and she had no issues with her oxygen level dropping so the neonatologist gave us the go ahead to continue trying a little each day.
Today I also met with both the neurologist and neurosurgeon. Starting tomorrow morning they will do daily tapping to remove fluid from her head. From what I understand they just use a syringe and will remove between 10-30 ml of fluid each time.
Rusty will return tonight from Chiang Rai. He had a really good time connecting with friends there.
love,
Lynette
This afternoon we started breast-feeding. Olive latched on like a little champ, and once she was on her eyes got huge and she looked really excited and unsure what to do about the milk coming out into her mouth. I was laughing at her little expression and trying not to scare her with my shaking. Her vitals stayed good, and she had no issues with her oxygen level dropping so the neonatologist gave us the go ahead to continue trying a little each day.
Today I also met with both the neurologist and neurosurgeon. Starting tomorrow morning they will do daily tapping to remove fluid from her head. From what I understand they just use a syringe and will remove between 10-30 ml of fluid each time.
Rusty will return tonight from Chiang Rai. He had a really good time connecting with friends there.
love,
Lynette
Tuesday, December 1, 2009
Today's news...
I spent the day at the hospital with Olive today. Today she was pretty drowsy and not acting much like herself. This evening her oxygen saturation was on the low side of being o.k. so the residents decided to do another lumbar puncture. I was feeling anxious about having another resident do the procedure since the last two times they didn't do the best job because Olive was squirming, and only removed 6 ml of CSF fluid.
I'm trying to find the balance of protecting Olive from being a resident's case to practice on, and being a patient's mother who isn't super annoying. I realize I am at a teaching hospital, but I am not a fan of Olive being someone's case to practice on...(insert nervous sigh here).
They removed 15 cc of fluid this time and everything went well. After the procedure she seemed more like herself and spent a good 20 minutes alert and flinging her little limbs around. I held her for another hour before walking back to the apartment.
Tomorrow the neurosurgeons are planning on placing another temporary ventricular drain to remove more fluid.
The head neonatologist said it would be o.k. for me to begin trying to breast-feed Olive tomorrow, so I'm hoping things go o.k.
Rusty was able to be home for the rice harvesting at the AYDC in Chiang Rai today. All the parents of the kids came to participate so he was able to connect with a lot of them and share in eating some dog for lunch. : >)
The weather in the north is much colder than here in Bangkok. He is sleeping in a sleeping bag and comforter in Chiang Rai, and I am sweating down here in Bangkok as I listen to Christmas music.
Still no word on another flight being available to go back to the States anytime soon.
love,
Lynette
P.S. We have five breast pumps donated for the NICU in Chiang Rai, so we are set!
I'm trying to find the balance of protecting Olive from being a resident's case to practice on, and being a patient's mother who isn't super annoying. I realize I am at a teaching hospital, but I am not a fan of Olive being someone's case to practice on...(insert nervous sigh here).
They removed 15 cc of fluid this time and everything went well. After the procedure she seemed more like herself and spent a good 20 minutes alert and flinging her little limbs around. I held her for another hour before walking back to the apartment.
Tomorrow the neurosurgeons are planning on placing another temporary ventricular drain to remove more fluid.
The head neonatologist said it would be o.k. for me to begin trying to breast-feed Olive tomorrow, so I'm hoping things go o.k.
Rusty was able to be home for the rice harvesting at the AYDC in Chiang Rai today. All the parents of the kids came to participate so he was able to connect with a lot of them and share in eating some dog for lunch. : >)
The weather in the north is much colder than here in Bangkok. He is sleeping in a sleeping bag and comforter in Chiang Rai, and I am sweating down here in Bangkok as I listen to Christmas music.
Still no word on another flight being available to go back to the States anytime soon.
love,
Lynette
P.S. We have five breast pumps donated for the NICU in Chiang Rai, so we are set!
Monday, November 30, 2009
Poor Pooch.
This poor pooch lives across from our apartment building here in Bangkok. And yes...that is a giant tumor hanging from his belly and dragging onto the ground.
Living it up in Bangkok.
Olive had another lumbar puncture done today, and only 6 ml was removed because she was being squirmy and the resident couldn't keep the needle in. She only had 6 ml removed a few days ago too. From what I hear from a neonatologist from the States, normally you release around 15 ml-30 ml at a time, so I'm hoping they know what they are doing by releasing such a small amount.
In other news...
Her protein level and WBC count in her CSF decreased more today (this is good news). Tonight she is getting a blood transfusion of packed red blood cells cause she was a little anemic. She was sucking away on her little pacifier when I left her tonight.
Rusty left for Chiang Rai this morning and will be there until Wednesday night taking care of some business with the sponsorship program and visiting friends.
So, I figure now that I'm all alone in Bangkok its time to live it up!
"Living it up" will most likely consist of visiting Olive at the hospital everyday, going out for a cappuccino with whip cream, and if I'm feeling real wild and crazy I might even start writing thank-you notes.
In other news...
Her protein level and WBC count in her CSF decreased more today (this is good news). Tonight she is getting a blood transfusion of packed red blood cells cause she was a little anemic. She was sucking away on her little pacifier when I left her tonight.
Rusty left for Chiang Rai this morning and will be there until Wednesday night taking care of some business with the sponsorship program and visiting friends.
So, I figure now that I'm all alone in Bangkok its time to live it up!
"Living it up" will most likely consist of visiting Olive at the hospital everyday, going out for a cappuccino with whip cream, and if I'm feeling real wild and crazy I might even start writing thank-you notes.
Speechless.
We are speechless at the amount of items and money that was donated for the Auction for Olive. Thank-you to each of you who participated in this. We are overwhelmed by the generosity we have seen from so many during this time.
Breast Pumps.
If you or anyone you know has a manual breast pump that you don't use anymore (and works well) and you would like to donate it the NICU/Pediatric ICU in Chiang Rai, please e-mail me at: rustylynette@mac.com and let me know. We are trying to come up with about four breast pumps to give them.
Often times the mothers are from Laos or Burma and have no money to buy any sort of pump while their baby is in the ICU and will not have any money to purchase formula once their baby is discharged if their milk supply dries up.
Our friend Libby is in the States for the holidays and could bring them back with her. So, if you are interested in helping, let me know and I will send you a mailing address to send the pump to.
Thanks!
Lynette
Often times the mothers are from Laos or Burma and have no money to buy any sort of pump while their baby is in the ICU and will not have any money to purchase formula once their baby is discharged if their milk supply dries up.
Our friend Libby is in the States for the holidays and could bring them back with her. So, if you are interested in helping, let me know and I will send you a mailing address to send the pump to.
Thanks!
Lynette
Sunday, November 29, 2009
Spa Fish.
This is walking distance from our apartment. For only $2.91 you can soak your feet in a tub of little fish that nibble off the dead skin on your feet. Creeptastic!!! We took Libby to go when she came down to visit. The two of us had a hard time staying calm with hundreds of little fish nibbling on us.
Saturday, November 28, 2009
CT Scan Results
Today Olive's neurosurgeon came to look at her recent CT Scan (done yesterday) and explain the results to us. Her brain tissue continues to expand, and the clot from the previous hemorrhage continues to liquify. We are excited for every good news we get about her brain tissue continuing to expand, even if it is little by little. Olive also still has communicating hydrocephalus which means they can continue doing lumbar punctures every few days to relive the pressure in her head.
As far as the results of her lumbar puncture, the CSF fluid contains no more bacteria or organisms so that is good news. The glucose level in her CSF fluid is also back to baseline. However, her protein and WBC count are still not back at the normal level. He said that this increase in protein causes her CSF fluid to be more viscous, which is why we need to wait to put in the VP shunt. If we did it now, the increased protein level could cause the shunt to clot and not work properly.
SOOOOO...the neurosurgeon is saying that we will wait on the WBC count to level out as well as the protein. Once those two lab values are in place we will consider putting in the VP shunt...maybe in another two weeks or so. And hoping that her weight is closer to 2 kg (4.4 lbs) by then.
If an opportunity to return to the States would arise before the surgery we would jump on it. Otherwise we will plan on being here for the surgery and recovery.
Last night I tried breast-feeding Olive with the help of the nurses and she was starting to get the hang of it. However, this morning when the neonatologist found out he wasn't too impressed. He says that it is very important for us to know her intake and output at this point, and he would like to wait on that. So...today there was no more of that.
Today I was looking at photos of Olive in her first days of life and couldn't believe how much she has changed in two months. She has been through so much in her short little life, especially to think that my due date isn't even until December 15th. We are so grateful for each day we've had with her and for the days ahead.
As far as the results of her lumbar puncture, the CSF fluid contains no more bacteria or organisms so that is good news. The glucose level in her CSF fluid is also back to baseline. However, her protein and WBC count are still not back at the normal level. He said that this increase in protein causes her CSF fluid to be more viscous, which is why we need to wait to put in the VP shunt. If we did it now, the increased protein level could cause the shunt to clot and not work properly.
SOOOOO...the neurosurgeon is saying that we will wait on the WBC count to level out as well as the protein. Once those two lab values are in place we will consider putting in the VP shunt...maybe in another two weeks or so. And hoping that her weight is closer to 2 kg (4.4 lbs) by then.
If an opportunity to return to the States would arise before the surgery we would jump on it. Otherwise we will plan on being here for the surgery and recovery.
Last night I tried breast-feeding Olive with the help of the nurses and she was starting to get the hang of it. However, this morning when the neonatologist found out he wasn't too impressed. He says that it is very important for us to know her intake and output at this point, and he would like to wait on that. So...today there was no more of that.
Today I was looking at photos of Olive in her first days of life and couldn't believe how much she has changed in two months. She has been through so much in her short little life, especially to think that my due date isn't even until December 15th. We are so grateful for each day we've had with her and for the days ahead.
Thursday, November 26, 2009
No more infection!
Olive had another lumbar puncture today and the results were very good. No more bacteria found in the sample. She has been much more active and breathing on room air again without the help of any machines, so we are feeling very encouraged about this.
Rusty spent the morning holding her, and at lunch we swapped and I spent the afternoon holding her. Tonight after I put her back in her isolette she was crying, irritated and flinging her limbs in all directions. I took her back out and thought maybe she needed to be burped, but that didn't seem to help all too much. She probably cried for a good 15 minutes without calming down. Then I noticed her trying to shove her hand in her mouth, so I stuck my finger in her mouth and she started sucking away. We gave her a pacifier and she was suddenly comforted and fell asleep. This is the first day she has had a strong sucking reflex, so we are excited. We may be able to start trying to breast feed later in the week if she continues to stay strong and breath well on her own.
Rusty spent the morning holding her, and at lunch we swapped and I spent the afternoon holding her. Tonight after I put her back in her isolette she was crying, irritated and flinging her limbs in all directions. I took her back out and thought maybe she needed to be burped, but that didn't seem to help all too much. She probably cried for a good 15 minutes without calming down. Then I noticed her trying to shove her hand in her mouth, so I stuck my finger in her mouth and she started sucking away. We gave her a pacifier and she was suddenly comforted and fell asleep. This is the first day she has had a strong sucking reflex, so we are excited. We may be able to start trying to breast feed later in the week if she continues to stay strong and breath well on her own.
Wednesday, November 25, 2009
We still have much to be grateful for.
Life has continued moving since the last post. Today we celebrated Olive's two month birthday, and were reminded of the many things we do have to be grateful for.
-One of the things I've been most thankful for during this time is my relationship with Rusty. Though we have been awfully stressed out by the many different circumstances that have come up, we seem to be growing closer and closer. I can't imagine walking through this alone. I'm thankful to be doing it with my best friend and that we can even make each other laugh in the hardest of moments.
-I'm also thankful to have Olive in a hospital where she has access to the surgery and procedures she needs. Thankful to have her here in Bangkok at a hospital with doctors and nurses who are doing their best to care for her. Tomorrow morning she will undergo another lumbar puncture to relieve some of the fluid in her head (her head circumference increased in the last two days). I'm thankful she slept through her first lumbar puncture and I'm praying that tomorrow will be as painless as the first time.
-I'm thankful to have such a big support base of friends and family around the world. So many of you have played a role in supporting us in a time that could otherwise feel so lonely. We have also been overwhelmed by the generosity of so many. Both the Olive Care Hope Fund and the Olive Hope Auction have blown our socks off.
-I'm thankful for the health Rusty and I are experiencing. Yesterday I made an appointment to visit the doctor suspecting I was on my way to be getting mastitis. After a day of resting, pumping extra, and applying heat packs I'm feeling much better.
I have many more things I could write but for now sleep is calling out my name...
good-night friends,
Lynette
-One of the things I've been most thankful for during this time is my relationship with Rusty. Though we have been awfully stressed out by the many different circumstances that have come up, we seem to be growing closer and closer. I can't imagine walking through this alone. I'm thankful to be doing it with my best friend and that we can even make each other laugh in the hardest of moments.
-I'm also thankful to have Olive in a hospital where she has access to the surgery and procedures she needs. Thankful to have her here in Bangkok at a hospital with doctors and nurses who are doing their best to care for her. Tomorrow morning she will undergo another lumbar puncture to relieve some of the fluid in her head (her head circumference increased in the last two days). I'm thankful she slept through her first lumbar puncture and I'm praying that tomorrow will be as painless as the first time.
-I'm thankful to have such a big support base of friends and family around the world. So many of you have played a role in supporting us in a time that could otherwise feel so lonely. We have also been overwhelmed by the generosity of so many. Both the Olive Care Hope Fund and the Olive Hope Auction have blown our socks off.
-I'm thankful for the health Rusty and I are experiencing. Yesterday I made an appointment to visit the doctor suspecting I was on my way to be getting mastitis. After a day of resting, pumping extra, and applying heat packs I'm feeling much better.
I have many more things I could write but for now sleep is calling out my name...
good-night friends,
Lynette
Photos.
Some of Olive's nurses here at the Army Hospital.
This is Olive's neonatologist Dr. Nitipaan
Libby was in Bangkok hanging out with us all day before she flew home to the States for the holidays. She is going to be sorely missed.
Note the tiny pudge growing under her chin. She now weighs a whopping 3.7 lbs...she weighed about 2.8 lbs at birth. The nurses had to put the IV in her head again (not to be confused with another drain) because they weren't able to find a vein in her legs or arms.
Today we celebrated Olive's 2 month old birthday with the nurses and doctors with an ice cream cake.
This is Dr. Uwee and she is one of the residents that cares for Olive. Dr. Uwee is sweet as pie.
Monday, November 23, 2009
Negative Nancy
Another day of ups and downs. Woke up this morning with a pit in my stomach having no clue what the doctors decision would be if we would be able to make our flight tomorrow or not. This morning after arriving we learned that she had a stable night and has been stable throughout the morning.
The opthamologist came and said he was happy with the results of her laser surgery and will come back to look at her eyes again in five days from now if we can't return to the States.
Around 9:00 a.m. they did a lumbar puncture to remove 10 ml of CSF fluid to help relieve some of her intracranial pressure and also to evaluate how well she is responding to her antibiotics. The team of one doctor and two nurses who would be traveling to the States with us came to look at her around noon and told us based on her vital signs that they think everything is a go. They said they just needed to evaluate the results of the CSF fluid. So, about one hour later they returned with the results with a concerned look on their faces. Apparently the glucose level was very low, and protein was higher than it should be. They didn't think she was fit to fly. They said they would consult with the infectious disease specialists to get a final opinion.
The team of infectious disease specialists said they were concerned about us not having a ventilator onboard the aircraft in the case of Olive having continued apnea. They also worry that if the meningitis continues to progress that she will start having more frequent seizures. They told us that meningitis can cause deafness, severe developmental problems, as well as seizure issues in SOME cases. Not very comforting news to hear.
So...all of the doctors involved in Olive's case are telling us she cannot fly. We had our hopes up so high to have Olive at such a great hospital, and to be near family and friends as we continue walking through this journey. All the details had come together for the flight home after so many e-mails and phone calls of coordinating.
So here we are...lots of tears today, anger, and disappointment.
Today I'm feeling angry at God, and wondering why there continues to be more and more bad news. I can see lots of ugly places in myself too in all of this. I want to be grateful for the good things He is doing...like the positive report on Olive's eyes, and the simple fact that we are included in the small percentage of people in this world to have access to this level of healthcare.
I do miss my close friends that could just sit down beside me and grumble with me.
love to all of you...
Lynette
The opthamologist came and said he was happy with the results of her laser surgery and will come back to look at her eyes again in five days from now if we can't return to the States.
Around 9:00 a.m. they did a lumbar puncture to remove 10 ml of CSF fluid to help relieve some of her intracranial pressure and also to evaluate how well she is responding to her antibiotics. The team of one doctor and two nurses who would be traveling to the States with us came to look at her around noon and told us based on her vital signs that they think everything is a go. They said they just needed to evaluate the results of the CSF fluid. So, about one hour later they returned with the results with a concerned look on their faces. Apparently the glucose level was very low, and protein was higher than it should be. They didn't think she was fit to fly. They said they would consult with the infectious disease specialists to get a final opinion.
The team of infectious disease specialists said they were concerned about us not having a ventilator onboard the aircraft in the case of Olive having continued apnea. They also worry that if the meningitis continues to progress that she will start having more frequent seizures. They told us that meningitis can cause deafness, severe developmental problems, as well as seizure issues in SOME cases. Not very comforting news to hear.
So...all of the doctors involved in Olive's case are telling us she cannot fly. We had our hopes up so high to have Olive at such a great hospital, and to be near family and friends as we continue walking through this journey. All the details had come together for the flight home after so many e-mails and phone calls of coordinating.
So here we are...lots of tears today, anger, and disappointment.
Today I'm feeling angry at God, and wondering why there continues to be more and more bad news. I can see lots of ugly places in myself too in all of this. I want to be grateful for the good things He is doing...like the positive report on Olive's eyes, and the simple fact that we are included in the small percentage of people in this world to have access to this level of healthcare.
I do miss my close friends that could just sit down beside me and grumble with me.
love to all of you...
Lynette
Sunday, November 22, 2009
Dear Meningitis, I hate your guts.
Today had lots to tears to accompany it. The organism that they found in Olive's CSF fluid is Staphylococcus Aureus...which means she has meningitis. This was the first news we heard upon arriving at the hospital this morning. We also found out that one of the people we thought was a resident is actually on staff here which has made us feel better.
Throughout the day Olive has had episodes of Apnea where she stops breathing and her heart rate drops. With the help of a little oxygen and patting her on the back, scratching the bottom or her feet, or rubbing her little cheeks her numbers eventually climb back up. The doctors are contributing this to her infection and say that hopefully by tomorrow night or Tuesday morning the clinical signs will start getting better once she has a few days of antibiotics in her system.
The problem with all of this is that we need her to be stable to take her on the flight planned for Tuesday morning at 11:00 am. Everything is set up and in place...except for Olive's current health status.
Tomorrow morning the doctor who would be traveling with Olive if we go to the States, is coming to the hospital to take a look at her and her labs to decide if she is fit to fly or not. They will be doing a lumbar puncture on Olive in the morning to assess the level of her current infection and also to remove 5 ml of CSF to help decrease her intracranial pressure. According to one neonatologist we have been talking with in the States, if they are able to control her infection by Tuesday and her vital signs stabilize she should be able to still make this flight.
Another issue that we haven't yet been able to discuss with her neurosurgeon is how they are going to go about reducing her intracranial pressure now that she has an infection...(insert a deep tired sigh here).
We are crawling into bed tonight feeling emotionally drained and down in the dumps. I'm not sure what you should be praying for at this point...maybe for the antibiotics to destroy all of the bacteria in her system so that her clinical symptoms improve by tomorrow? Or maybe pray that if this doesn't happen we will have the strength to embrace the next step if that means we need to stay here longer.
Love,
Lynette
Throughout the day Olive has had episodes of Apnea where she stops breathing and her heart rate drops. With the help of a little oxygen and patting her on the back, scratching the bottom or her feet, or rubbing her little cheeks her numbers eventually climb back up. The doctors are contributing this to her infection and say that hopefully by tomorrow night or Tuesday morning the clinical signs will start getting better once she has a few days of antibiotics in her system.
The problem with all of this is that we need her to be stable to take her on the flight planned for Tuesday morning at 11:00 am. Everything is set up and in place...except for Olive's current health status.
Tomorrow morning the doctor who would be traveling with Olive if we go to the States, is coming to the hospital to take a look at her and her labs to decide if she is fit to fly or not. They will be doing a lumbar puncture on Olive in the morning to assess the level of her current infection and also to remove 5 ml of CSF to help decrease her intracranial pressure. According to one neonatologist we have been talking with in the States, if they are able to control her infection by Tuesday and her vital signs stabilize she should be able to still make this flight.
Another issue that we haven't yet been able to discuss with her neurosurgeon is how they are going to go about reducing her intracranial pressure now that she has an infection...(insert a deep tired sigh here).
We are crawling into bed tonight feeling emotionally drained and down in the dumps. I'm not sure what you should be praying for at this point...maybe for the antibiotics to destroy all of the bacteria in her system so that her clinical symptoms improve by tomorrow? Or maybe pray that if this doesn't happen we will have the strength to embrace the next step if that means we need to stay here longer.
Love,
Lynette
Saturday, November 21, 2009
Infection.
Yesterday the doctors were pleased with how Olive's laser eye surgery went. After being on anesthesia she was throwing up so she had to be NPO (have nothing by mouth) for the day. Today they have her back on feedings, but she still needs to be on an IV again.
This morning we arrived to the hospital to learn that the doctors were getting ready to test her CSF (cerebral spinal fluid) for any organisms to assess for infection (a common complication of the drain in her head). The test came back as positive for bacteria so they had to remove the drain immediatly and start her on two different IV antibiotics. We were hoping she would be free from infection and that the drain would be able to stay in until the day we left for the States, so now we are unsure how exactly they will handle this.
Now that she is getting IV antibiotics she needs an IV in all the time. Olive has the smallest most fragile veins, so getting an IV in her is VERY difficult. Tonight the nurses tried about 6 times unsuccessfully. We held her and sang to her for while before handing her back to them and heading home. I'm hoping by now they have an IV in her.
Tomorrow the opthamologist will come to assess her eyes again which I'm not looking forward too. They put these little metal clips on her eyelids to pull them back for he examination and it looks so uncomfortable. She crys every time they do this...poor little thing. We know that it's all for her good though.
At this point they are saying she should still be able to go home on the 24th despite the current complications. Rusty has been busy on the phone with the nurses and doctor who will be accompanying us, those helping with the flight back to the States, and with insurance. We are so thankful to those of you who have given to the Olive Hope Care Fund. It has made it possible for us to pay for the doctor and nurses accompanying us to the States as well as their plane tickets back to Thailand.
We have heard so many good things about the DeVos children's hospital in Grand Rapids and are anxious to get her there sooner than later. At the hospital we are currently at, we rarely see an attending doctor...I think we've seen one twice since arriving 1.5 weeks ago. Otherwise its all residents making the decisions. I think they are very good at what they do, but I would feel much more comfortable if I got to see an attending at least once a day.
The last two days have been rough emotionally for both of us and we are feeling pretty drained. We wish so badly life could be easier for Olive. She is a little fighter, but she's also a weak little thing who I wish could just be cuddled like a normal little baby without dealing with all the daily procedures that make her so uncomfortable.
Life these days continues to be unpredictable. Trying to look for things to be thankful for each day and not be swallowed up by the things that seem overwhelming and out of our control.
Much love,
Lynette
This morning we arrived to the hospital to learn that the doctors were getting ready to test her CSF (cerebral spinal fluid) for any organisms to assess for infection (a common complication of the drain in her head). The test came back as positive for bacteria so they had to remove the drain immediatly and start her on two different IV antibiotics. We were hoping she would be free from infection and that the drain would be able to stay in until the day we left for the States, so now we are unsure how exactly they will handle this.
Now that she is getting IV antibiotics she needs an IV in all the time. Olive has the smallest most fragile veins, so getting an IV in her is VERY difficult. Tonight the nurses tried about 6 times unsuccessfully. We held her and sang to her for while before handing her back to them and heading home. I'm hoping by now they have an IV in her.
Tomorrow the opthamologist will come to assess her eyes again which I'm not looking forward too. They put these little metal clips on her eyelids to pull them back for he examination and it looks so uncomfortable. She crys every time they do this...poor little thing. We know that it's all for her good though.
At this point they are saying she should still be able to go home on the 24th despite the current complications. Rusty has been busy on the phone with the nurses and doctor who will be accompanying us, those helping with the flight back to the States, and with insurance. We are so thankful to those of you who have given to the Olive Hope Care Fund. It has made it possible for us to pay for the doctor and nurses accompanying us to the States as well as their plane tickets back to Thailand.
We have heard so many good things about the DeVos children's hospital in Grand Rapids and are anxious to get her there sooner than later. At the hospital we are currently at, we rarely see an attending doctor...I think we've seen one twice since arriving 1.5 weeks ago. Otherwise its all residents making the decisions. I think they are very good at what they do, but I would feel much more comfortable if I got to see an attending at least once a day.
The last two days have been rough emotionally for both of us and we are feeling pretty drained. We wish so badly life could be easier for Olive. She is a little fighter, but she's also a weak little thing who I wish could just be cuddled like a normal little baby without dealing with all the daily procedures that make her so uncomfortable.
Life these days continues to be unpredictable. Trying to look for things to be thankful for each day and not be swallowed up by the things that seem overwhelming and out of our control.
Much love,
Lynette
Friday, November 20, 2009
Eye Surgery
I don't have much time to update, but wanted to let you know that Olive's laser surgery went well this morning. She has been pretty weak all day and throwing up due to the sedation medicine, but overall she is ok.
Thursday, November 19, 2009
Eye Surgery in the Morning.
This afternoon we were with Olive at the hospital when we were told today they were going to do the routine eye examination on her to assess for blindness. Rusty and I were both feeling pretty nervous and praying throughout the day that this would turn out better than our last doctor in Chiang Rai predicted.
Three residents came in to check her and then called for the head opthamoligist to come and assess her. After he arrived he told us that based on the findings she will need to undergo immediate treatment by laser or cryotherapy surgery in the morning. The doctor told us that if they were to wait too long, or not do this surgery that she will be blind in the very near future. If they go ahead with it they can prevent this complication, but as with anything there are risks of doing this as well. Another retinal specialist came to confirm the diagnosis.
If all goes well she will still be able to leave for the States on Tuesday.
We have been in contact with a neonatologist from DeVos Children's Hospital, and another neonatologist from South Bend, IN, and our brother-in-law who is an anesthesiologist. All agreed the best thing to do is to go forward with this surgery.
So here we wait..anxiously and nervously...but still grateful to be in a place where she can receive the care that she needs.
Much love,
Lynette
Wednesday, November 18, 2009
More photos.
If you are interested in seeing more recent photos of Olive from today you can click on this link: http://www.facebook.com/album.php?aid=41879&id=1054808187&l=4cb8f58a8b
Tuesday, November 17, 2009
Coming Home?
Its been a few days since our last update. Most of our time has been filled with being at the hospital holding Olive and spending time with her. There are many financial benefits (more affordable care) of being here at the government hospital, but along with the benefits come the downsides. The doctors here are overworked, which means sometimes you have to wait for their availability for procedures, wait for a spot in the operating room, etc. She has been without a drain in her head for the last six days, and each day her head circumference has continued to increase. Yesterday we were told by the residents that the doctor was coming to put in another drain around 2:00 pm. After waiting at the hospital, we finally got a phone call around 7:00 pm that he had other surgeries and wouldn't be available for 24 more hours. Today I was told he was coming to look at her at 1:00 pm, and instead he came at 6:30 pm. We've been trying our best to practice our patience...especially since there is not much else we can do. At this point we are hoping that Olive continues to remain stable and if so Olive will be flown back to the States around the 23rd of this month with one Thai doctor and two Thai nurses at her side.
Tonight the neurosurgeon inserted another ventricular drain and the plan is to keep it in until we leave on the 23rd. If she were to get an infection from the drain, then our plans may change once again, and we may be staying here longer.
Thank-you for your continued support and prayers.
Love,
Lynette
Friday, November 13, 2009
thank-you.
Since beginning this journey six weeks ago we have been overwhelmed by the kindness of so many of you. The prayers, the notes, e-mails, phone calls, hospital visits, and financial gifts have meant so much to us. Some of our friends are planning on holding an Auction for Olive online at the end of November, and we have been humbled by all of those who have decided to participate and all of the creative ideas.
So, from the deepest parts of our hearts, thank-you.
So, from the deepest parts of our hearts, thank-you.
Another Ultrasound.
This morning the neurosurgeon did another ultrasound and he was pleased with the results. He said that her brain tissue is continuing to expand and he was also pleased with how active she has been. For the last two days she has been breathing only room air, so that is also good news!
They are considering trying to switch all of her medicines to go through her ng tube and remove her IVs now that she is getting 22 ml of my milk 8 times a day. This way they won't have to keep poking her.
We are feeling encouraged as we crawl into bed tonight.
love,
Lynette
They are considering trying to switch all of her medicines to go through her ng tube and remove her IVs now that she is getting 22 ml of my milk 8 times a day. This way they won't have to keep poking her.
We are feeling encouraged as we crawl into bed tonight.
love,
Lynette
Thursday, November 12, 2009
Olive has moved once again.
The last few days have been a rollarcoaster of ups and downs and we have had little time to be online. I mentioned in the last post that there was a possibility of us heading to the States at the end of this week on a commercial flight, but that looks like it may not work out once again due to technical difficulties with the oxygen we will need along the way. However, there appears to be another possibility hovering in the distance to fly Olive home in 1.5 weeks. Yesterday a bed opened up for Olive at a government hospital and she was transferred yesterday morning.
Tuesday night I flew up to Chiang Rai for 24 hours to pack up our things and say good-bye to our friends there. I woke up at 6:00 am to spend some time with the kids at the AYDC before they left for school at 7:00 am. They all had lots of questions for me about Olive, and when they would get to see her. After that I spent the morning/afternoon talking and packing up our things with Ghan, Blah, Ae, P Thim (some of my close Akha friends) and Libby at my house. In the afternoon/evening we spent time with the older kids from the AYDC in town, stopped in to visit the NICU nurses at Chiang Rai Regional Hospital, then off to a quick dinner with more close friends before going back to the airport to fly to Bangkok. I was unable to see everyone I was hoping to see, but the time was very limited. The day was full of emotions. A deep thankfulness for the friendships we have made here in Chiang Rai...anxiety for not being near Olive during her transfer to the government hospital...and then all of the unknowns hanging in the air about what the future will hold. At this point we are unsure if we will be going back to the States on a short or long-term basis. It will all depend on what Olive's needs will be in the future. It's hard to know how to process things when the future is so unknown. Time to return to the reminder that all we can do is take things one day at a time--one hour at a time.
Last night I landed in Bangkok about 11:15 pm and Rusty met me at the airport. We then went to the government hospital so that I could see where Olive was. When I came in she was crying and the nurses were all busy. Olive just started crying this last week more consistently when she is in pain or uncomfortable. I realize this is a good and normal sign, but also really hard to see when you aren't able to make her feel better. She had an IV inserted into a vein in her head because they were having issues getting it in her legs and arms. The nurses were friendly, but very professional and kindly reminded us that it was okay to be there for a few minutes but that it was not visiting hours. We walked home feeling anxious to have her in a new place once again.
Yesterday after transferring Olive to the army hospital Rusty broke down crying in front of the nurses and was just feeling overwhelmed...feeling sorry for Olive...worried about having her in a new place once again. This morning when we came in to see Olive the head nurse told us that we are going to be able to visit her any time we would like, and said they know our situation has been very stressful. The head nurse told me that she spent 2 months studying in Chicago at UIC...the same school I graduated from for my nursing degree. Today has been wonderful. The nurses are very kind and have been encouraging us to hold Olive as often as we would like. It's been fun to be back in a government NICU setting where we can mingle and chat with the nurses.
We had a meeting with the neurosurgeon this morning and he agreed that he would like to postpone placing the VP shunt (major surgery) as long as possible (ideally until she reaches 4.4 lbs.) and he will continue to try temporary measures to relieve the pressure in Olive's head in the meantime. He said he thinks Olive is stable enough to go ahead with the major surgery now, but will wait longer to lesson the risk of complications.
Olive has been breathing well on room air all day, so we are encouraged by this.
We are so thankful for your prayers, verbal support, and incredible generosity.
Much love,
Lynette
Tuesday night I flew up to Chiang Rai for 24 hours to pack up our things and say good-bye to our friends there. I woke up at 6:00 am to spend some time with the kids at the AYDC before they left for school at 7:00 am. They all had lots of questions for me about Olive, and when they would get to see her. After that I spent the morning/afternoon talking and packing up our things with Ghan, Blah, Ae, P Thim (some of my close Akha friends) and Libby at my house. In the afternoon/evening we spent time with the older kids from the AYDC in town, stopped in to visit the NICU nurses at Chiang Rai Regional Hospital, then off to a quick dinner with more close friends before going back to the airport to fly to Bangkok. I was unable to see everyone I was hoping to see, but the time was very limited. The day was full of emotions. A deep thankfulness for the friendships we have made here in Chiang Rai...anxiety for not being near Olive during her transfer to the government hospital...and then all of the unknowns hanging in the air about what the future will hold. At this point we are unsure if we will be going back to the States on a short or long-term basis. It will all depend on what Olive's needs will be in the future. It's hard to know how to process things when the future is so unknown. Time to return to the reminder that all we can do is take things one day at a time--one hour at a time.
Last night I landed in Bangkok about 11:15 pm and Rusty met me at the airport. We then went to the government hospital so that I could see where Olive was. When I came in she was crying and the nurses were all busy. Olive just started crying this last week more consistently when she is in pain or uncomfortable. I realize this is a good and normal sign, but also really hard to see when you aren't able to make her feel better. She had an IV inserted into a vein in her head because they were having issues getting it in her legs and arms. The nurses were friendly, but very professional and kindly reminded us that it was okay to be there for a few minutes but that it was not visiting hours. We walked home feeling anxious to have her in a new place once again.
Yesterday after transferring Olive to the army hospital Rusty broke down crying in front of the nurses and was just feeling overwhelmed...feeling sorry for Olive...worried about having her in a new place once again. This morning when we came in to see Olive the head nurse told us that we are going to be able to visit her any time we would like, and said they know our situation has been very stressful. The head nurse told me that she spent 2 months studying in Chicago at UIC...the same school I graduated from for my nursing degree. Today has been wonderful. The nurses are very kind and have been encouraging us to hold Olive as often as we would like. It's been fun to be back in a government NICU setting where we can mingle and chat with the nurses.
We had a meeting with the neurosurgeon this morning and he agreed that he would like to postpone placing the VP shunt (major surgery) as long as possible (ideally until she reaches 4.4 lbs.) and he will continue to try temporary measures to relieve the pressure in Olive's head in the meantime. He said he thinks Olive is stable enough to go ahead with the major surgery now, but will wait longer to lesson the risk of complications.
Olive has been breathing well on room air all day, so we are encouraged by this.
We are so thankful for your prayers, verbal support, and incredible generosity.
Much love,
Lynette
Monday, November 9, 2009
A poem about an unexpected journey.
This is a poem sent to me by a friend of our cousin Cindy. I wept as I got to the end.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
WELCOME TO HOLLAND
by
Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
Sunday, November 8, 2009
Update.
Well, a few days ago the doctors told us that Olive is doing better than they expected after removing her first temporary drain. She is able to control her body temperature much better, and is off the ventilator--though still getting a little oxygen. They said because of this, that evacuating her to the States is another possibility again since she wouldn't have to be in an isolette on a stretcher (which was a previous issue for taking her on a commercial flight.
They are also saying that they would like to ideally wait on putting in the VP shunt until she gains more weight (2 kg or 4.4 lbs).
Over the last 2 days her head circumference continued to grow so yesterday they placed another temporary 7 day drain. If she remains stable there is a chance we will take a commercial flight with her to the States along with a doctor and nurse at the end of these seven days. If she would get an infection, or her condition would deteriorate at all, then we will plan on staying here in Thailand for her next treatment.
We are still waiting on a bed at the government hospital to open up.
Today we are supposed to have a meeting with the director of the hospital to discuss a plan of care for her at this point. Some good news is that Olive's neurologist said that her brain tissue is beginning to expand again a little after removing the fluid. The more it expands, the better her prognosis for the future will be.
We will keep you updated when we are a bit more certain what is going on ourselves.
MUCH LOVE,
Lynette
They are also saying that they would like to ideally wait on putting in the VP shunt until she gains more weight (2 kg or 4.4 lbs).
Over the last 2 days her head circumference continued to grow so yesterday they placed another temporary 7 day drain. If she remains stable there is a chance we will take a commercial flight with her to the States along with a doctor and nurse at the end of these seven days. If she would get an infection, or her condition would deteriorate at all, then we will plan on staying here in Thailand for her next treatment.
We are still waiting on a bed at the government hospital to open up.
Today we are supposed to have a meeting with the director of the hospital to discuss a plan of care for her at this point. Some good news is that Olive's neurologist said that her brain tissue is beginning to expand again a little after removing the fluid. The more it expands, the better her prognosis for the future will be.
We will keep you updated when we are a bit more certain what is going on ourselves.
MUCH LOVE,
Lynette
Friday, November 6, 2009
Time to fatten her up.
Yesterday the doctors took Olive off of the ventilator and also removed the drain from her head. She still has her IVs, PICC line, and the ng tube in her mouth, but we are happy to have less. Tonight the neurosurgeon told me that with that drain in they removed about 400 ml of fluid out of her head. Craziness. Now that her drain is out we have been able to hold her as often as we like. Her head circumference has not increased over the last 48 hours, so this is good news. One of the biggest goals for the doctors a this point is to keep fattening her up. She now weighs 1.490 kilograms (3.3 lbs) and the goal is to get her to 2.0 kg. (4.4 lbs).
I can't help but think how cute and turtle-ish she is looking these days.
I can't help but think how cute and turtle-ish she is looking these days.
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