Olive the turtle

Lynette posted an update on Olive.

Reflections from Mom and Lynette

Lynette both posted reflections on how she is processing what has happened and is happening with Olive.

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.

Sweet Olive

I copied this update from Lynette's blog this morning...



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.

Olive...the next step

Lynette added a couple of updates on her blog. I'm copying here what they're plans are, but go to her blog to see pictures of how much the tap has made a difference in just four days or so.

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...

Love,

Lynette

Apple-Raisin Bread Pudding

I made this bread pudding last night for dessert. I halved the recipe and used an 8x8 inch pan. It's good comfort food on a cold evening.

Apple-Raisin Bread Pudding

Taste of Home -

"Our six children love this for breakfast on a chilly morning, but try it for your next party. It makes the kitchen smell warm and cozy." Janelle Fahnestock, Lititz, Pennsylvania

12 Servings
Prep: 20 min. Bake: 40 min.

Ingredients
3 tablespoons butter, melted
1 loaf (1 pound) day-old cinnamon-raisin bread, cubed
3 cups chopped peeled tart apples
7 eggs
2-1/2 cups milk
3/4 cup sugar
3 teaspoons vanilla extract

VANILLA SAUCE:
2/3 cup sugar
1 tablespoon cornstarch
1/8 teaspoon salt
1 cup cold water
1 tablespoon butter
1 teaspoon vanilla extract

Directions
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).

In a small saucepan, combine the sugar, cornstarch, salt and water until smooth. Bring to a boil over low heat, stirring constantly. Cook and stir for 1-2 minutes or until thickened. Remove from the heat; stir in butter and vanilla. Serve with warm bread pudding. Yield: 12 servings (1-1/4 cups sauce).

Halloween 2009

Double click for a larger view. Tyler saw this collage. He said, pointing at the pictures of him wearing the white wig, "don't ever show those pictures to anyone, not ever." I just love his "scary" faces, though.

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.

Lynette's reflections

Lynette updated her blog with some reflections on God's faithfulness and love.

Olive on Saturday

Our little fighter, Olive, turned 5 weeks-old yesterday. :)

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.

Much love,

Lynette

Pictures from Bangkok

Libby Colleen Rusty Lynette

A rollercoaster 3 days

My mom posted an update on Olive's new hospital.


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.

Much love,
Lynette