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!
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