Wednesday, December 30, 2009
Yesterday, she also kept me informed throughout the day of their flight status. During the evening, she was texting me and sending me pictures which I really appreciated!
Tuesday, December 29, 2009
Monday, December 28, 2009
This year has been decidedly different. I realized the week before break that my only concern was whether I had planned something special for our family so that Christmas didn't feel like just another day of the week. So far, the two weeks off from school feels much longer than normal. I've enjoyed the down time, with lots of time to relax.
The week before break, it was very cold. Tyler and Wayne enjoyed freezing water to make a big ice block that Tyler used as an ice hat.
Early last week, Tyler and I spent a couple of hours at the zoo. It was good to get some time outside while the weather was in the 50's. The next day, we spent an afternoon at Exploration Place (our local science museum for kids) with some of our closest friends. They boys loved the time at the water table.
Afterward, we took Tyler for his second H1N1 vaccination. It is putting it mildly to say that he was not a fan. This was his 4th separate vaccination appointment in a 2 month time span...I think that was the problem (as well as the fact that he had to have the injection of the H1N1 and seasonal flu vaccine instead of the mist). Anyway, I'm glad he's done with vaccinations for awhile.
That evening, we opened our stockings. Then we watched a Christmas movie, Tyler put on his new pj's from Grandpa Miller's and we slept by the Christmas tree.
Christmas morning, we enjoyed brunch together, then Tyler opened his presents. Grandpa Ted came over to join us for Christmas day and Saturday, along with a large cooler of food and some things to do. Wayne and I enjoyed going to see a movie, Up in the Air, while Grandpa babysat and tried to teach Tyler chess. :) I hear that Tyler had a little trouble staying focused. Then Grandpa and Tyler went to see The Princess and the Frog.
It all feels a bit surreal, since it has happened so quickly, and since last evacuation was canceled. She has been more stable, can now regulate her body temperature, can suck (which hopefully will help with relieving pressure) and is often off of oxygen. They should be arriving in South Bend tomorrow, the 29th, around 5 pm!!!!
We are praying for safety, comfort, and that it could all go smoothly. Lynette's blog update gave more specific prayer requests...and indicates her excitement about it all. "I have never felt so patriotic in my entire life in my love for home."
I wish I were there to greet them! :)
Tuesday, December 22, 2009
Almond Toffee - From Women of Great Taste
1 cup butter (no substitute)
1 1/3 cups granulated sugar
Pinch of salt
3 tablespoons water
1 tablespoon light corn syrup
1 cup coarsely chopped almonds, toasted
1 bar (7 ounces) milk chocolate
1/2-3/4 cup finely chopped almonds, toasted
Generously spray or butter a half-sheet cake pan. In a heavy saucepan over medium high heat cook butter, sugar, salt, water and corn syrup to hard crack stage (290 degrees) stirring constantly (I stirred frequently, not constantly) with a wooden spoon. Immediately remove from heat and stir in almonds. Pour into prepared pan and spread mixture to the edges. Cool for at least a few minutes. Microwave chocolate until melted. Spread over toffee and sprinkle with remaining almonds. Chill for one hour. Break into pieces and store in an airtight container.
Makes 2 1/2 pounds
Monday, December 14, 2009
This time, things have been a little...harder. Morning/all day sickness, heartburn, congestion, sleeping, and contractions (and some other things) have all been more ... difficult or intensified this time around. She feels low, and heavy and I feel like it's harder to get around. I did find out that she is head-down.
My sister-in-law, Carrie, has told me that she had a similar experience (with her first being easier than her second) but that her third pregnancy was not as difficult again. Another Mother of 3 told me the same thing. It has made me curious whether this is more common, or whether I have just found a few moms with similar experiences.
I don't mean to complain - I mean, don't get me wrong, I feel like I have been doing plenty of that lately - but that's not what I'm getting at. But, I wonder whether anyone else has had a similar, or very different experience with their comfort level and the order of their pregnancies. (By the way, we are definitely not having a third).
As Tyler would say, I'm just so curious.
Tuesday, December 8, 2009
Sunday, December 6, 2009
Tyler's Preschool Christmas Program was on Friday. It took lots of encouragement, and the promise of a new puzzle, for him to practice and perform the songs. He looked nervous, especially on the first song, Jingle Bells. He was a sheep in the Nativity, and didn't really do anything but stand on his hands and knees the whole time. This is the last song. We got a kick out of his subdued hand motions.
To show you how much he loves singing, here's the conversation we just finished...
I told Tyler that we should go Christmas caroling.
Tyler, "What's that?"
Me, "You go sing Christmas songs to people."
Tyler, "That sounds horrible!"
Saturday, November 28, 2009
Thursday, November 26, 2009
Olive's infection has cleared and she is back to breathing room air. She also had a strong sucking reflex for the first time, so they may be able to begin trying to breastfeed later in the week.
Thanks for all of your prayers, love and support! You all are so amazing!
I know that I gag easily, but these days it can be a bit ridiculous. Don't misunderstand- I don't feel ill like at the beginning of this pregnancy, but lately, my gag reflex is almost embarrassing. Snot, (even my own), can make me gag. This week at school, I gagged and had to leave a classroom after a student ... passed gas. And, I threw up in the bathroom sink because someone before me left a ... smell. I know, lovely things to discuss. This morning, on the way to the YMCA, I had to do some deep breathing in the car to stop gagging because...I drank OJ and water before I left?? Then, at the Y, I gagged when I saw someone who was very sweaty. WHAT!? I don't have any idea what that was about. Anyway, I was telling Wayne about my weirdness (who just rolls his eyes and laughs at me) and decided I'd share it with you. Because, what is better to discuss on Thanksgiving than gagging?
OK, I'll get back to putting up Christmas decorations and leave you be. Hope you're having a wonderful holiday :)
"Most of the time, your cardiovascular and nervous systems are able to adjust to the many changes taking place in your body, but occasionally they can't, and it can make your head spin. Dizziness or lightheadedness can be caused by a variety of things, such as standing up too fast, lying on your back, low blood sugar, anemia, and overheating."
Tuesday, for the first time, I did feel dizzy and light-headed throughout the morning, and I thought it was really weird. Then, my weekly email came yesterday. Aha! Oh the weirdness that pregnancy can cause.
Along with the same email was a little bit about the baby getting hiccups. Good timing as well since I've felt more hiccups this week. They feel very low and I'm hoping this means she is head down. We shall see.
Wednesday, November 25, 2009
Sunday, November 22, 2009
Saturday, November 21, 2009
I told Tyler I had seen a picture of him holding baby Jillian.
He said, "I held her more than one time. I had lots of practice for holding my new sister."
He paused, as though it had dawned on him, "I forgot...you're pregnant!"
He also, apparently, bonded with his Daddy on this trip. The other night, I hollered at Wayne to come upstairs.
Tyler looked at me and said, "Don't yell at Daddy. That's my Daddy. Be nice to him. He is the best Daddy in the whole United States of America." :)
They had a great time. I am thankful that they could join in this special family time! And I'm also happy to hear that Jillian (and her parents) continue to do very well.
Olive has developed an infection from the temporary drain and has to be on two IV antibiotics again. The nurses are again having trouble starting an IV on her.
Tomorrow an opthamologist has to assess Olive's eyes again. Sounds like a very uncomfortable procedure. They put metal clips on her eyelids and pull them back - which makes Olive cry. :(
They are still planning to fly to Grand Rapids on November 24th! :)
Friday, November 20, 2009
Tuesday, November 17, 2009
Monday, November 16, 2009
Sunday, November 15, 2009
-Adapted from Taste of Home
1 T or so olive oil
Scrub the potato and cut into thin slices, about 1/16 inch-thick. (I used my mandolin). Lay 3 paper towels on a plate. Toss the potato slices in olive oil and arrange on the paper towel. Do not overlap. Sprinkle with salt. Microwave for 3 minutes. Turn and microwave for 2-3 minutes more until the potatoes are dry. Sprinkle on a little more salt. (I did 3 minutes/side and they were golden brown and crunchy). Let cool for at least a minute before serving.
OK, does it make it better or worse that I made these after I went to the YMCA tonight? :)
Saturday, November 14, 2009
Friday, November 13, 2009
"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.
Woo Hoo! Sweet little Olive - we love you so much. What encouraging news!
Thursday, November 12, 2009
Wednesday, November 11, 2009
Last evening, Wayne told me that he thought it'd be great if he and Tyler could go make an extended weekend visit sometime soon. We discussed whether I could go too - and decided I should stay here. I, rather impulsively, suggested that they tag along with his parents.
So, last night we got them all packed up and at 5 this morning, they headed to Hesston to meet up with Wayne's parents. I must admit, I miss them already. I've never been away from Tyler for more than two nights.
But, I also know they'll have a great time. I'm jealous of the time they'll get to spend together, and of holding new, sweet little Jillian. We looked at pictures last night, and Tyler declared that she is "adorable" and I must agree.
So, while they're gone, I'll work on getting some things done, relax and try not to miss them too much. :)
"Mommy, you are so precious. I love you more than any person in the whoooooole world."
A few nights ago, he suddenly looked worried, and followed up with,
"What if some day, I meet someone that I love more than you? Will you be sad?"
Stinker. I love him so much too. :)
Tuesday, November 10, 2009
Friday, November 6, 2009
Wednesday, November 4, 2009
Mom posted an excerpt from a book, I assume, titled High-Tide Grief is Not the Time to Speak Solutions.
I was touched by both.
Olive had a rather uneventful day today which we always are happy about. She is on room air with her oxygen, and though she is ready to come off the ventilator the doctor has decided to keep it in until her surgery is finished.
She has had very few seizures today (I only saw one), and has been able to control her body temperature much better. The neurosurgeon asked for the nurses to clamp her drain for 24 hours to assess how much her head grows during that time. 19 hours later it is still measuring the same at 32.5 cm, so this is also good news.
She has been comfortable most all of the day, except for the last time I visited her and she was getting poked and poked while they searched for new veins. The poor little dear! I had to leave so that I wouldn't make the nurses feel like someone was breathing down their necks, and will go back and visit her again in 30 minutes.
We are still waiting for a bed to open up for her at the NICU at the government hospital. The doctors are hoping that happens tomorrow, but they can't make any promises.
I left the hospital today and walked around in the sunshine for the first time since we have arrived a week ago. I forgot how healing just smelling fresh air and grass can be after being in a hospital for so long. I think I will try to make a habit of it.
Thank-you for your words of love and encouragement and continued prayers.
Tuesday, November 3, 2009
Yesterday we had lots of meetings with the doctors discussing the next best step for Olive. A week ago when her temporary drain was put in the plan was to transfer her home to a hospital in the States once they took the drain out and she stabilized. We have been looking into options of getting Olive back to the States via air, but it seems as if those options continue to not be working out. Some of this is due to the number of stops a smaller plane would need to make and issues with changes in pressure. We have also looked into going with a commercial flight and taking along a doctor and nurse from here, but their have been issues with getting a stretcher on the flights (for her isolette) and oxygen issues and policies with the airlines.The other option would be to use an air ambulance service, but the cheapest option we can find is a minimum of $170,000 US dollars.
The doctors at our hospital are very well trained in medical evacuations and the specific requirements Olive would need to make a transfer at this point. They are suggesting for us to keep her here to do the VP shunt surgery. This is a major surgery where they place a shunt in her head that drains down her neck all the way into her peritoneum (in her abdomen). These shunts can stay in for a few years at a time if there are no complications. Usually doctors will wait as long as possible to do this surgery in small babies because of the risk of skin break down being greater the younger the baby is. However, in this circumstance the doctors think this would be the best option for Olive at this time.
The hospital we are at is very aware of our financial situation and the cap on our insurance so we have been working together to come up with the most ideal option for both Olive's care and our finances.The doctors here at Samitivej have a connection with a government army hospital here in Bangkok and one of the top neurosurgeons there (who works back and forth between private and government hospitals). He was trained in Australia and speaks great English, and the doctors here have full confidence in him. He has agreed to take Olive's case. If Olive is transferred to that hospital the cost of the surgery will drop significantly. They also tell us that this hospital has a better equipped NICU then the one we had Olive at in Chiang Rai.
So...after much thought and talking with a neonatologist in the States, we told the doctors this morning that we would like her to get the surgery done at the government hospital and then we will see how it goes having her there. If we feel we would rather have her at the private hospital again after seeing how they care for her at the government hospital, then we will go ahead and transfer her back here to Samitivej. If she is here at Samitivej I know she will always have one nurse focusing only on her, and that there will be no visiting hour limitations...and that they really encourage skin to skin and helping me begin trying to breast-feed her as well. But we will see...maybe the staff at the Army hospital will be wonderful too and we will feel confident in their care for her.
They are saying Olive will need to stay in the hospital after the shunt surgery for another month, and then after that they would like us to stay at a hotel or apartment close by and practice caring for her on our own (breast-feeding...etc) for another month. Then if she has any issues during that month they can help us or if she would have any complications. After that time is up, if we feel confident in caring for her and if she is stable (if she can regulate her body temp and is off oxygen, and eating well) we could take a commercial flight home. Craziness.
So...i guess we will be here in Bangkok for another two months or so. This is not what we were expecting, but it seems to be our only current option and I think I can speak for both of us in saying that we feel a peace about it.
Rusty is in Chiang Rai tying up loose ends and packing up a few more things since we originally thought we might be leaving for home in the next few days. He will return tonight to be back in time for Olive's surgery. So the journey continues...thank-you to all of you who are walking it with us.
Olive has been stable. The doctors think her apnea was maybe do to fluid overload in her lungs from replacing the fluid they were taking out of the drain. They put her back on the ventilator just for a few days to help her rest and help her gain weight easier. They said they can take it out today, but recommended keeping it in until her surgery is over since they would need to put it back in for the surgery anyways. She is having fewer and fewer seizures so that is good too. Today she seems to be very comfortable. Pray that her brain would be able to expand again after the intense pressure it experienced from the fluid in her head...this is a concern the doctors talked with us about. Please continue praying for damaged cells to be made new...
Monday, November 2, 2009
Apple-Raisin Bread Pudding
Prep: 20 min. Bake: 40 min.
3 tablespoons butter, melted
1 loaf (1 pound) day-old cinnamon-raisin bread, cubed
3 cups chopped peeled tart apples
2-1/2 cups milk
3/4 cup sugar
3 teaspoons vanilla extract
2/3 cup sugar
1 tablespoon cornstarch
1/8 teaspoon salt
1 cup cold water
1 tablespoon butter
1 teaspoon vanilla extract
Pour butter into a 13-in. x 9-in. baking dish. Combine bread cubes and apples; sprinkle over butter. In a large bowl, whisk the eggs, milk, sugar and vanilla. Pour over bread.
Bake, uncovered, at 325° for 40-45 minutes or until a knife inserted near the center comes out clean. (I left it in for an additional 10 minutes, and the knife still had butter on it, so I pulled it out. It was done).
Sunday, November 1, 2009
Tyler woke up yesterday, after weeks of anticipating Halloween, and said excitedly, "today we can be really creepy." We made "creepy food" to celebrate.
Tyler (Darth) and his friend, Oliver, (football player) enjoyed trick-or-treating together last night.
Saturday, October 31, 2009
Lynette and Rusty's friend, Libby, has updated her blog.
Here is Lynette's update from her blog:
Olive continues to remain stable, and look more and more comfortable. She had another ultrasound this morning and the neurologist was very pleased with the results of the fluid that has been removed. Because she is responding so well they have decided to remove 10 ml of fluid every 4 hours now. Her head is both looking and measuring smaller. She continues to be off oxygen and is breathing in room air. There continues to be some seizure activity which they are monitoring, but they say it is getting to be less and less.
We feel so grateful to be here at this hospital with Olive receiving such wonderful care. They even have her little head resting on water pillows.
If you are interested in seeing more pictures than I have on this blog,
click here for pictures from Chiang Rai
click here for pictures from Bangkok
click here to get to the Olive Hope Care Fund
Thank-you for the amazing love and support we feel from friends, family, and those we have never even met. I wish we had the time to write back to all of your comments, but know that we read them regularly and they mean so much to us.
Thursday, October 29, 2009
And, from Lynette's blog post:
A Window Into Our World
Wednesday, October 28, 2009
the past three day craziness.
Dear friends and family,
Much has happened since my last post. Life has been such a rollercoaster changing hour by hour, so I have only been updating immediate family because our time has been so limited.
Since my last post we were working towards moving Olive to Chiang Mai and waiting on a bed opening up in the NICU at the government hospital since the private hospital refused to take Olive calling her a "hopeless case."
Two days ago Olive became less stable and was having constant seizures for almost a 30 hour period. Rusty had gone to Chiang Mai with his mom the evening the seizures began to work with the consulate to get Olive a US passport, Social Security #, and birth certificates taken care of.
Here is the timeline of the last three days...
Monday night: Rusty and Colleen go to Chiang Mai. After leaving Olive begins having seizures and looking uncomfortable. The doctor was trying to up her milk intake to maximum intake to help her gain weight, but she wasn't tolerating it well and was throwing up and had a swollen little belly. Her head circumference had increased 2 cm on that day...I was starting to feel worried of what we were going to do if a bed didn't open up soon at the government hospital in Chiang Mai.
Tuesday morning: We get a phone call of someone who wishes to remain anonymous who would be willing to help us get Olive back to the States (miracle #1),
Rusty meets with the US consulate in Chiang Mai who cancels all of their morning plans to focus on getting Olive's passport, SS # and residency as Michigan, and birth certificate finished all FREE of charge and finished by noon (miracle #2).
Meanwhile in Chiang Rai our doctor is saying that if Olive can't keep her milk down that she can't be transferred to Chiang Mai even IF a bed opens up. She is also having lots of seizures and our doctor thinks she shouldn't go. We are BEGGING her to let her go just to get this fluid relieved to help her with the seizures and to get her at least to a place where they have the resources and ability to surgically help her. Rusty then starts talking with our insurance about getting her medivaced to a private hospital in Bangkok where SOMEBODY can help her. This is approved and they say they will come later in the evening to get her.
Tuesday Afternoon:Rusty (who is still in Chiang Mai) is feeling super encouraged everything that has come together during the day.
Meanwhile I am in Chiang Rai next to Olive's bed watching her have constant seizures that are not being controlled by her anti-seizure medicines. She is now not able to have any milk because of her seizures so she is back on an IV and her veins keep blowing so she is getting poked so many times. My heart is getting more and more worried and breaking watching her look so miserable...and her head keeps growing.
THEN the doctor comes in and tells me that Olive has a severe case of pneumonia they just found. She thinks it is most likely from her aspirating milk from throwing up the night before. She tells me she thinks she shouldn't go to Bangkok because she is unstable. She also mentions that if we don't give Olive antibiotics for the pneumonia that the infection will most likely take her in a few days and this is her suggestion. Being next to Olive for the last 24 hours and watching her look so miserable I felt like maybe this is where we are supposed to step back and stop forcing her little body to work so hard. That maybe we should just let her go, let her be with Jesus where her body will be made whole and she will no longer be in any pain. Tears are flooding as I call Rusty and tell him the news the doctor just told me. We cry together on the phone and Rusty says he is leaving Chiang Mai now and will be there soon.
Tuesday Evening: I tell our doctor that we need the evening to talk together and pray about not giving Olive antibiotics and we will tell her our final decision in the morning. Colleen decides not to fly out after-all, thinking she will want to be there for the funeral. Rusty and Colleen drive back that evening and cancel the medivac team for that night and puts them on hold until the morning. Rusty and I call a neonatologist in the States to talk through our current confusions we find ourselves in. We go to sleep crying that night feeling a deep sense of sadness and trying to find that still small voice that seems lost...exhausted.
Wednesday Morning: Rusty goes to the hospital to talk with our doctor with Libby and our friend Blah. Rusty is preparing to tell the doctor that we are planning on not giving Olive the antibiotics and letting her go. However, when he arrives Olive is peacefully sleeping without any seizures. The doctor comes in and tells him that maybe Olive doesn't have pneumonia after all and instead that she has some sort of chronic lung disease that means she may need to be on a ventilator for the rest of her life...and that we should let her go.
Rusty gets upset about her misdiagnosis about the pneumonia and tells the doctor that today Olive is leaving Chiang Rai and we are getting her to a facility in Bangkok where somebody can begin relieving the pressure in her head. The doctor says she isn't stable enough and Rusty says he would rather risk leaving and help her somehow. He calls insurance and a medivac team is approved and will arrive in late afternoon.
Libby and I drive home to our house and pack up our things in case we go from Bangkok directly to America. We have one hour to pack up and then drive back to the hospital. No clue whether we are leaving for one week, one month, one year, or for good. Mixed emotions and a feeling of numbness of not wanting to grieve good-byes here if the future is so unclear.
Wednesday Evening: Rusty and I say our good-byes to the wonderful nurses in the Chiang Rai ICU that we have grown to love. We leave with Olive in a small plane and medivac team to Bangkok. Olive remains stable during the transfer.
Once we arrive at this AMAZING hospital we are met by a team of doctors (neonatologist, neurosurgeon, cardiac specialist, and internist) who are ready to care for Olive (all of whom speak amazing English).
They tell us to relax and they assess her, talk together, and do a bedside ultrasound. Then we all met together for a consultation meeting and they go through the different options of treatment at this stage and suggest doing a ventricular tap (a temporary drain in her head to relieve some of the fluid that stays in for 5 days). We explain to them our insurance issues as well so that they understand we are working towards getting her back to the States as soon as she is stable enough to get her on Medicaid, and they are very understanding.
Last night they went ahead with the temporary drain and everything went well. She is in her own ICU room with a nurse and doctor caring for her at all times. They discount the price for us to sleep in the hospital in a room down the hall from Olive and tell us we can visit her at any time and if the doctor needs to talk he/she will come and knock on our door. Amazing.
Now we are having meetings to discuss evacuation options in the next 5-7 days, and back-up plans in case she is not stable to go at that point. The staff at this hospital have been incredible with helping us talk through issues with insurance, evacuation issues, explaining in detail their findings about Olive from tests they are running. They also talk to her like she is a little sweet baby and look at her closely..smile at her. She is being treated like a little person with value, and it means so much to us.
Also, about the chronic lung disease...they are saying she may have issues or she may not. They say she may need to have a little oxygen for another month...or another 2 years, but that she will not need to be on a ventilator at this point. Quite a different story then we heard from our last doctor.
We are so thankful to be here in this place, at this moment. I could keep going, but this is getting to be MUCH to long for your weary eyes to read.
I will try to post again tomorrow.
Wednesday, October 28, 2009
Me, "Do you know what a girlfriend is?"
Me, "Do you know how you get a girl to be your girlfriend?"
Me, "So, if you don't know what a girlfriend is, or how to get one, how do you know you want her to be your girlfriend?"
Tyler, "I don't know...how?"
Me, "I think that's a good question to ask your Dad."
Yikes. Why do I ask those questions?!
Yesterday morning we received this heartbreaking news from Lynette:
Olive is not doing well. She has been having continuous seizures for the last 24 hours and they are having a difficult time controlling them with medication. She also has pneumonia again and her vital signs haven't been stable today.
And then last night I got an e-mail from Lynette that Olive had stabilized again! Praise God!!!
Then an update from Lynette:
The 3 of us are flying to Bangkok to a private hospital and 4:30pm Thailand time. It is a big risk! But we feel like it is the only way Olive can get the care that she needs right now. Please be praying for us.
This morning I got a text from my mom after talking to Lynette's mom, who had just spoken with Lynette (it's amazing how fast we can share information!) to say that the transfer had gone well.
A little bit later, the following update was posted:
Well we made it! Had a team of doctors waiting for us, they are great. Olive is getting her poor little head tapped to relieve the pressure as I write. Thanks so much for your prayers. We now have a couple of days for the doctors to get to know Olive and try and help us make good decisions for her future. She is in her own room, with her own nurse! We are thankful. Rusty and Lynette.
Olive is such a champion!!!!
MOST unfortunately, AETNA, in a moment of infinite wisdom and completely unchecked power, has LOWERED their cap on Olive's care now that she is no longer in a government-run hospital. If you can, please consider making a donation in any size at http://apps.facebook.com/causes/363622/12775863?m=cc366e79 or https://www.paypal.com/cgi-bin/webscr?cmd=_s-xclick&hosted_button_id=8619844. Anyone who donates (in any amount) by November 6 will be entered in a drawing for a free laptop!
Tuesday, October 27, 2009
Monday, October 26, 2009
This morning we walked over to the hospital prepared to be moving Olive to Chiang Mai today to begin getting consultations from neurosurgeons there about what the next step is to care for her ever growing head. After arriving it became clear that there was no bed currently available in the NICU at the government hospital in Chiang Mai...and now they are saying they aren't sure when one will open up.
We talked with our doctor here and with a doctor in Chiang Mai about possibly temporarily moving her to a private hospital in Chiang Mai until a bed opens up at the government hospital. After our doctor here called the private hospital in Chiang Mai she told us they won't accept Olive into their care because she is classified as a "hopeless case."Great. We really appreciate your help and care.
So what exactly are we supposed to do with Olive when her vitals are stable and the pressure in her head increases day by day? I guess just continue waiting and praying for a bed at the government hospital.We have a wonderful head doctor from the government hospital working to get her in ASAP, but there is really nothing he can do until a bed becomes available for her...which hopefully will be in the next two days. We are hoping to get her under his care when she moves to Chiang Mai. He studied in the States, speaks amazing English and had a pre-term baby of his own while in the States. He seems to think he would like to assess her first in person and then decide what the next best step is...to send her to Bangkok...to help her in Chiang Mai...or if its possible to get her to the States.
Last night we spoke with another WONDERFUL neonatologist from the States who thinks the best thing we can do at this point is get her home to the States ASAP and on Medicaid, or to proceed with some temporary measures in Chiang Mai to relieve the pressure, then continue trying to get her home (most likely to a hospital in Indiana or Michigan).
Now the question is how do we get her home if that is what is best for her? Tomorrow morning Rusty will be meeting with the U.S. Consulate in Chiang Mai to begin working on Olive's passport as well as researching options about flights back.
On a lighter note, we have been having lots of fun with our nurses here at the ICU in Chiang Rai. Today when I was sticking more milk that I had pumped in the freezer they were laughing at how much I had stored up compared to how little Olive can drink. I told them they should start drinking it with their morning coffee...to which they were appalled and thought better if I just make Rusty drink all of it, or to have him use it as a face mask. :>)
You have all been SO wonderful with your words of love and encouragement, your incredible generosity, and your prayers. Couldn't ask for a bigger support team during this time.
Sunday, October 25, 2009
4 individual pot pies (We couldn't finish two of them between the three of us).
3 whole (6 split) chicken breasts, bone-in, skin-on
3 tablespoons olive oil
Freshly ground black pepper
5 cups chicken stock, preferably homemade
2 chicken bouillon cubes
12 tablespoons (1 1/2 sticks) unsalted butter
2 cups yellow onions, chopped (2 onions)
3/4 cup all-purpose flour
1/4 cup heavy cream
2 cups medium-diced carrots, blanched for 2 minutes
1 (10-ounce) package frozen peas (2 cups)
1 1/2 cups frozen small whole onions
1/2 cup minced fresh parsley leaves
For the pastry:
3 cups all-purpose flour
1 1/2 teaspoons kosher salt
1 teaspoon baking powder
1/2 cup vegetable shortening
1/4 pound cold unsalted butter, diced
1/2 to 2/3 cup ice water
1 egg beaten with 1 tablespoon water, for egg wash
Flaked sea salt and cracked black pepper
Preheat the oven to 350 degrees F.
Place the chicken breasts on a baking sheet and rub them with olive oil. Sprinkle generously with salt and pepper. Roast for 35 to 40 minutes, or until cooked through. Set aside until cool enough to handle, then remove the meat from the bones and discard the skin. Cut the chicken into large dice. You will have 4 to 6 cups of cubed chicken.
In a small saucepan, heat the chicken stock and dissolve the bouillon cubes in the stock. In a large pot or Dutch oven, melt the butter and saute the onions over medium-low heat for 10 to 15 minutes, until translucent. Add the flour and cook over low heat, stirring constantly, for 2 minutes. Add the hot chicken stock to the sauce. Simmer over low heat for 1 more minute, stirring, until thick. Add 2 teaspoons salt, 1/2 teaspoon pepper, and heavy cream. Add the cubed chicken, carrots, peas, onions and parsley. Mix well.
For the pastry, mix the flour, salt, and baking powder in the bowl of a food processor fitted with a metal blade. Add the shortening and butter and mix quickly with your fingers until each piece is coated with flour. Pulse 10 times, or until the fat is the size of peas. With the motor running, add the ice water; process only enough to moisten the dough and have it just come together. Dump the dough out onto a floured board and knead quickly into a ball. Wrap the dough in plastic and allow it to rest in the refrigerator for 30 minutes.
Preheat the oven to 375 degrees F.
Divide the filling equally among 4 ovenproof bowls. (I used my Chantal bowls - they are 5 1/4" by 2 1/2" and hold 2 3/4 cups). Divide the dough into quarters and roll each piece into an 8-inch circle. Brush the outside edges of each bowl with the egg wash, then place the dough on top. Trim the circle to 1/2-inch larger than the top of the bowl. Crimp the dough to fold over the side, pressing it to make it stick. Brush the dough with egg wash and make 3 slits in the top. Sprinkle with sea salt and cracked pepper. Place on a baking sheet and bake for 1 hour, or until the top is golden brown and the filling is bubbling hot.
Saturday, October 24, 2009
"Thanks to so many of you who have responded to Rusty and Lynette's request for some assistance in researching options for them. We have gotten a ton of very helpful information over the past few days. Rusty asked me to write an update, just so people would know what they have figured out thus far . . .
Rusty was able to get in touch with the second in command at the U.S. Consulate (whose wife "incidentally/providentially" had a preemie baby in Thailand recently as well). He was very helpful and is working right now on all of the citizenship, birth certificate, etc. end of things.
They have decided they will move Olive to Chiang Mai (3 hrs from Chiang Rai) on Monday. They will pay for this transfer from the Olive Hope Care Fund as Aetna will only cover one transfer and this is not the one we want them to cover!! There is a very good Neonatal Surgeon in Chiang Mai, who was trained in the U.S. and speaks English well. Once they get there they will sit down with him and figure out the best option for relieving the pressure on Olive's brain. They will also discuss next steps in terms of if they should remain in Thailand or return to the U.S.
We have gotten some very helpful information about Medicaid and it looks like Olive will qualify if/when she comes to the U.S. They'll also likely need to apply for Social Security Disability for Olive, so we are continuing to investigate the options there. If you have any contacts in the SSA -- please let us know.How Olive would come to the U.S. is another matter entirely . . . PLEASE PRAY THAT AETNA WILL APPROVE THIS MEDICAL EVACUATION (if that is what the MD recommends) AND WILL COVER IT IN FULL!!!! It is very frustrating (to me at least) that Rusty and Lynette have been paying privately for this insurance for such as time as this and now there is only coverage for a small fraction of the costs they are facing . . .
Thanks to all of you who have given to the OLIVE HOPE CARE FUND. Rusty and Lynette are so blessed and overwhelmed by the generosity of so many of you. Here is the link if you would like to donate: http://apps.facebook.com/causes/363622/12477196?m=8c55b813God continues to sustain them through this journey . . . please continue to pray and if you have any additional information you think would be helpful, please let us know!
Tomorrow (10/25) is Olive Hope's one month birthday!
Psalm 139:13-16 (adapted for Olive) For you created Olive's inmost being; you knit her together in her mother's womb. We praise you for she is fearfully and wonderfully made; your works are wonderful, we know that full well. Olive's frame was not hidden from you when she was made in the secret place. When she was woven together in the depths of the earth, your eyes saw her unformed body. All the days ordained for Olive Hope were written in your book before one of them came to be . . ."
Friday, October 23, 2009
Thursday, October 22, 2009
A need for Olive:
Lynette and I are faced with some decisions in the next couple of days. It looks like Olive will need a shunt soon. We have been advised to have her moved to Chiang Mai (2.5 hours away) We are trying to figure out our options before making this decision. We need to know if Olive would be eligible for Medicaid in the States. We have a cap on our insurance, and are wondering if we should try to get her home to America asap. Does anyone know how this would work for a baby born overseas to come into an American hospital? Does it depend on the State? If anyone knows someone that has the answers to these questions can you put us in touch with them? Does anyone know someone who works for Medicaid? our email is firstname.lastname@example.org. Thanks for all your help and prayers. I bring this to you, cause many have asked if there is anyway you can help. To have some of these answers would help us alot.Olive is again stable today. Her head grew alot over the night. She had another CT scan today. We need to relieve her pressure asap.
Wednesday, October 21, 2009
This morning we met with our neonatologist to discuss what the next step will be for dealing with Olive's growing head. The neurosurgeons here in Chiang Rai don't have experience doing this surgery on such a little baby, and it looks like the best option will be to move her to a hospital in Chiang Mai (three hours away). We are waiting to hear back from the government hospital there as to when a bed will open up for her in the NICU and then we will most likely be packing up and moving our headquarters there. This could be in a day, or a week. We will be very sad to leave our nurses and doctor here, but it looks like this is the best option for Olive.She had another good day today.
We love you guys,
Tuesday, October 20, 2009
I am very thankful for Mom's brief visit (and of course, Tyler was very excited about Grandma's visit too since we don't get to see one another often enough). She came last evening, and left this afternoon. It was wonderful to be able to process both of our thoughts and feelings about everything that has been going on.
Monday, October 19, 2009
Here is just a brief update on today...
Olive's vitals have been dropping and rising all day. This morning her heart rate was down to single digits as well as her blood oxygen level. We thought she was gone and then this afternoon things have become more stable. We are emotionally exhausted. Tonight I will be sleeping at the hospital with Olive.
Sunday, October 18, 2009
Saturday, October 17, 2009
Friday, October 16, 2009
Rusty's sister, Stacia, is there visiting. Her FB update is:
October 16 -- 1970: my parents lost their first baby, Shawn Mitchell, also while they were on the mission field. 2009: happy 3 week birthday Olive Hope! "Lord, you have been our dwelling place throughout all generations. . ."
And yesterday, was:
I am watching the gospel of Jesus here in Thailand through my brother and sister-in-law and it is a painfully beautiful thing to behold . . . watch this to see what I mean . . . http://www.youtube.com/watch?v=PTc_FoELt8s
Rusty's other sister, Shawna, posted this FB update:
Olive is 3 weeks old today! She is still very sick but they are loving every precious moment they get to share with her. Rusty said "she stole my heart, and I told her she can keep it no matter what."
Thursday, October 15, 2009
Wednesday, October 14, 2009
Tuesday, October 13, 2009
Sunday, October 11, 2009
On his actual birthday, the 6th, he and Wayne spent a few hours at All Star Sports where they played arcade games and rode on go-carts. In the evening, we let him pick where he wanted to eat, and he chose Pei Wei.
This is the first year that he has really anticipated his birthday and he was so thrilled to turn 5 - he thinks he is really a big boy now! In fact, this week, he put on pajamas and asked whether he looked like a "baby" in them. He said, "I wore these when I was 4. Do they make me look like a baby?!"
Last night, we enjoyed having a few family friends over for a birthday party. We had planned a picnic at the park. But with temperatures topping out in the lower 40's, we opted to stay in. The kids did a great job of entertaining themselves.
Saturday, October 10, 2009
Thursday, October 8, 2009
Wednesday, October 7, 2009
Tyler: "School is not about fashion."
Me: "School is not about fashion?"
Tyler: "Yes, school is not about fashion. It doesn't matter what you wear. School is about learning and taking turns."
Me: "Where did you hear that? TV...school?"
Tyler: "No, I just thought about it."
So, later I just had to follow up...
Me: "Tyler, what is fashion?"
Tyler: "Hmmm... Let me explain it.
It's clothes that are pretty...and stylish."
Me: "Are you sure you didn't hear that somewhere?"
Tyler: "I think Ms. Juli my teacher said that...I'm not sure, it could be my imagination."
Yeah...I'm pretty sure Ms. Juli said that. :)
Baby Olive had a quiet peaceful day. We cried with the neurosurgeon and neonatal Doctor in a meeting in all Thai Language. Lynette was our interpreter. Olive is back on colostrum and we decided to give her more touch. We also asked Lynette to take a much needed rest. Tonight she held Olive against her skin before she went home for the night.
And a poem Lynette posted:
Like The Water by Wendell Berry
Like the water
of a deep stream,
love is always too much.
We did not make it.
Though we drink till we burst,
we cannot have it all,
or want it all.
In its abundance
it survives our thirst.
In the evening we come down to the shore
to drink our fill,
while it flows
through the regions of the dark.
It does not hold us,
except we keep returning to its rich waters
willing to die,
into the commonwealth of its joy.
Here I am, crying again. Feeling emotional. For hurts that I cannot heal, problems that I cannot fix. Lynette was 3 weeks ahead of me in her pregnancy, both of us with girls. I can't put into words how I feel - the guilt I have for still being pregnant, knowing that my dear sister is hurting, and needing to be so strong, and just the heartbreak of it all.
Even people who don't know Lynette and Rusty have expressed their love, have been praying and showing incredible care and concern... and I think we are connected by our understanding of the intensity of the love between a parent and a child that begins even before their birth, and is amplified the minute we hold them in our arms. I have been so touched by the outpouring of love and support.
Tuesday, October 6, 2009
Monday, October 5, 2009
9:15 Swimming lessons - Tyler reported that they "scooped ice cream" (aka front crawl), played red light/green light on kickboards, and dove for rings.
11:15 Doctor appointment for Tyler's 3-week cough (Dr. thinks he might have asthma and/or a sinus infection. Antibiotics prescribed and nebulizer rented).
1:00 Chest Xray to rule out pneumonia (No pneumonia)!
Now, we're huddled in for a chilly/drizzly evening with some barbecue. Yum.
Sunday, October 4, 2009
Please pray for
*the bleeding on her brain/swelling to lessen and heal
*protection as she is taken through the hospital for the ultrasound in the morning (our Sunday evening)
*wisdom and direction for Rusty and Lynette as they meet with the specialists to determine the best way to proceed with Olive's medical care.
Thank you again for all of you who continue to hold Olive and her parents up in your thoughts and prayers.
Saturday, October 3, 2009
A few weeks ago, my Dad was able to make a quick weekend visit. Tyler still remembers why - Dad's last living uncle died. We really enjoyed our time with Dad. We made it to the state fair for the first time since we moved out here. Tyler rode his first fair rides, enjoyed his first Pronto Pup (and I as well - it's a big corn dog), and enjoyed seeing the exhibits, especially "cow milking" (a pretend cow) station. Sunday, Dad shared a book with Tyler that he had read as a kid that Dad's cousin Yvonne had thoughtfully sent along called the Biggest Bear. We enjoyed doing a little shopping and eating before we had to send him off.
Last weekend, we enjoyed a visit from Wayne's sister, Rachel, and her husband, Hollins. Rachel had a Hesston reunion, so they stayed in Hesston. We didn't get to see them as much as we normally get to when they visit. But, we enjoyed the time we did have with them. We ate some delicious meals and went mini-golfing. We also enjoyed an evening with Dave & Teneesa Stuckey and family Friday evening.
Of course, I had also gotten the call last Friday that Lynette had baby Olive. Starting out this week, I was feeling a bit haggard. It has felt like a long week, with all of its ups and downs, and it is so good to have the weekend here. Some nights, the worries made sleep difficult. My boys, friends, family and coworkers have all taken good care of me though.
So that's what has been going on around here. There is much that is good, and so much to be thankful for.
I am getting ready to crawl into bed but just wanted to leave a quick update from the day.
Olive still had bowel sounds this morning, and another stool so the doctor decided to start giving her colostrum (1 cc four times/day). So far she is digesting it and having no residual before each feeding. Her heart rate and blood oxygen levels stayed in the normal range and she was only on about 30-35% oxygen.
We are going to bed tonight with grateful hearts. Thank-you for all of your prayers, and so many words of encouragement.
Tonight one of my Thai friends who came to visit from Chiang Mai (Ichaya) is staying at the hospital with Olive for the night shift. Yet another thing to be thankful for.
Love to all of you!!!!
Please continue to pray. Pray for healing, especially for Olive's little brain. She has a brain ultrasound scheduled on Monday to take another look. I'm so thankful to hear the good news about her ability to digest colostrum! Pray for rest for Rusty, Lynette and my parents. Pray for wisdom as each day they may be faced with making difficult medical decisions. What a heavy weight to bear.
Friday, October 2, 2009
Mom's facebook update at 9:50 pm:
I just did an "all nighter" with Olive Hope. Spent most of my time praying and singing. Olive had another bowel movement and the seems to be a bit better. She had a fever during the night, but did well with the new minerals, etc given he...r. There is hope she may be given colostrum today!
Lynette's facebook update at 10 pm (10 am in Thailand):
Dr. said she still has great bowel sounds and they will try to give her a little colostrum today and see how she responds!!!
"Ms. Juli is pretty bossy." (Ms. Juli is his teacher)
Wayne asked, "well, why do you think Ms. Juli is pretty bossy?
He replied, "well...she kind of acts like she's in charge of the whole school."
Ha! I just hope he doesn't tell her that. :)
Tonight, out of the blue, Tyler asked,
"What is Mennonite?"
This led to a brief discussion, with many questions, of anabaptism and pacifism.
And just now, after his shower:
"What is Mennonite, and why is it Superman's only weakness?"
Oh my little Olive...you are so precious to me. Your little toes to your chin-and those tiny little fingernails. Every part of you was perfectly formed. I am heartbroken to not have you inside of me where you belong right now...getting your nourishment from my body rather than from this IV hanging next to your little isolate.
I can't stop thinking about you when I am near you or away. I pray each day that Jesus would be the hands holding you close when I'm unable to. Today I've been feeling sick so I'm scared to get close to you, but everything in me wants to be holding you close to me and singing to you. Olive there are so many people praying for you around the world. So many people bringing requests to the FAther that your little body would continue to be renewed and restored. I am praying for a release of pressure on your little brain, for the swelling to decrease, and for the damaged cells and blood vessels to be made new and healthy. I've also been praying that your precious little eyelids would be able to close--and today they did!!! You were opening and closing your little eyes intentionally. The nurses heard bowel sounds over the last two shifts and I was told this morning that you had a stool. I almost jumped on the doctor when she told me because I was so excited. The doctor says that when you stop having gastric contents come out of your ng tube that they can give you some colostrum that I have frozen. Today you only had a little come out this morning... I am hoping and longing for the day when I can cuddle with you in my own bed...without all of these tubes coming out of you...and give you the milk my body has been making for you. I am dreaming of the day when I will be able to hear your little lungs breathing on their own...to hear the sound of your little cry. Grandma and Grandpa Miller are here now and have already fallen in love with you. Grandma has even been trying to give you little foot treatments which we are not surprised about. :>) Bethany, Libby, Jan, Janya, Sherry, Grandma, Grandpa, Daddy and I have been taking turns sitting next to you so that you don't feel alone...and so that your mother can rest knowing someone will call me if you are having any problems. The nurses here are taking such good care of you. I told them your name yesterday and they told me that they call you "Lucy." I laughed when I heard that, but still think its pretty cute. You are my little love, my little Olive Hope and I hope you can sense how loved you are. Bethany gave me these verses yesterday that we taped onto your bed and I have been reading them over and over. "I will lie down and sleep in peace, for you alone, O LORD, make [Olive] dwell in safety." Psalm 4:8 "...He who watches over you will not slumber; indeed He who watches over [Olive] will neither slumber nor sleep." Psalm 3:4
Thursday, October 1, 2009
Rusty posted this morning:
Olive's platelet count was very low today. They also found more infection in her blood. No bowel sounds yet. Lynette is having a hard time sleeping and starting to feel a bit sick, but thankful that her parents have arrived safe and sound.
Wednesday, September 30, 2009
I have continued to be amazed and encouraged by the loving support that has been extended to Lynette, Rusty and Olive. My aunt Kathy has been great about keeping me informed if she finds out anything new...and my dear cousin, Melissa, called me to today to make sure that I had heard the encouraging news about Olive's day today...(I hadn't then, and it's always nice to get a heads up on good news).
Lynette's Facebook post today at 2:27 pm (2:27 am for her):
Another day without much drama...which is exactly what we were needing today. I was able to catch up on being behind with sleep while Rusty, Bethany, and Jan stayed at the hospital with Olive. Rusty was able to hold her for an hour and sing with her.
I came in from 3 pm-1am and had time singing to her, holding her skin to skin, and praying over her.
Our BIG prayer request is that she would have bowel sounds so that they can begin giving her the milk and colostrum that I have been freezing. She has only been on an IV with dextrose and some other electrolytes and is soooo little and skinny. The Dr. says that there are many factors at the moment for why she has to be NPO (nothing by mouth), but the biggest fear is that if we give her nutrition before her gut is ready, she may get necrotizing enterocolitis (http://kidshealth.org/pare
Please pray that little Olive would be free of this complication. Please pray Carrie's prayer over her...that her damaged cells would be reversed and replaced with new healthy cells.
She is also still anemic, hyponatremic, and jaundiced. The Dr finally ordered her to be on eye drops and eye ointment to prevent her eyes from drying since she can't close them on her own.
Libby is spending the night with her at the hospital and my parents will arrive tomorrow morning.
We are so encouraged by the number of people praying for her. The support we feel from each of you has literally been lifting us up when we are at our lowest points. Thank-you.
Here was a little note that encouraged us from Pastor Koemen...
"Our prayer is "O Live!" May the One who formed the eye, the ear, the tongue, continue to form the lungs.
Sunday in Bellevue CRC the text was I Kings 19: 7: The angel of the Lord came back a second time and touched hm and said, "Get up and eat, for the journey is too much for you.
So Elijah ate angel food a second time, and in the strength of those two meals of bread and water, he was able to go for 40 days and 40 nights. God has sent his angels. They have human names, like Jan Boyd. They appear in your pictures. They are sustaining you. And they will continue to sustain you because, in truth, the journey is too much for you. What a beautiful thing! So, let them ease your burden and bear the load with you. This is how, sometimes, the hardest and most severe trials are also the places of deepest, richest, most priceless joys and blessings.
In Christ our Healer,
Pastor Koeman and Mrs. Koeman"
Tuesday, September 29, 2009
Dear loved ones,
Yesterday was such a special day. We were both able to spend hours holding little Olive on our chests spending time talking to her and singing over her, We have been overwhelmed by the e-mails, phone calls, facebook messages, and visitors. We are being held up by the prayers of so many we know and love, and also by many who have heard the news who we don't even know personally.
Today has been like each day so far since little Olive Hope has arrived...filled with moments of joy, moments of fear, moments of uncertainty, sadness, hope and thankfulness.
This morning she had an ultrasound done to assess the level of intracranial hemorrhage that she had the other night. There are four levels--one being the least severe with little long term complications and four being the most serious and highest risk of long term complications. Olive had a level four intracranial hemorrhage. The doctors are telling us that if she makes it she will certainly have serious cognitive and motor damage..(mentally handicapped, cerebral palsy...and the list could go on). There is also a high risk of blindness due to the high concentrations of oxygen they have had to keep her on. She is also still anemic so she is getting blood transfusions. And this morning she was very jaundiced so we had to keep her under a photo-therapy light most of the day. Because of her brain damage she is no longer able to blink her little eyes. They remain open ALL the time unless we reach and blink them for her. They only have her on IV so far and say she can't have any breast milk until they hear bowel sounds. My milk has come in, so as of now I have been pumping and storing it in the freezer.
Our hearts are aching for this little one. We are willing and ready to care for a little girl with handicaps if Jesus chooses to give her to us. Part of us is also hoping and longing to see a miracle. Another part of us feels very afraid...of all the unknowns to come. She has had every possible complication and to the most severe level thus far...and yet there is something in me that keeps holding onto some sort of hope. And another part of me that doesn't want her little body to suffer any longer. Thoughts are going and coming in all directions.
We have been asked today if we want them to continue aggressive treatment measures, or if we would like to stop those treatments and simply let her go. Yesterday I thought we were feeling ready to let her go because of how much misery she was going through...and now we have been through two days of holding her and seeing her vital signs increase...and I'm not ready yet to let her go.
All this to say...decision making has felt difficult, but today has been a day when I am going to bed with hope for life for this little one...
And just enough strength to make it through this day by threads. And exhausted.
Jesus has indeed been drawing us closer and closer to Him through this journey...our only place to find any hope in this circumstance.
We can feel your love and support all around us.