And so we keep asking...

I was thinking today about a conversation I had many times with close friends before becoming pregnant with Olive. The conversation was about my fear of having a baby…all the things I would have to give up. How self-less you need to be. And that once you have a baby YOU will be the one in charge of caring for it—you can never give him/her back to their parents and drive home to sleep.

It’s interesting how quickly one can change perspective, and how drastically life has changed since having Olive…how much more ready I felt to be a mother after being breaths away from losing her. How willing I felt to give up my time and make life changes if it meant keeping her. And then came the fears of holding on too tightly to keeping her, and wanting to be able to let her go if that was what was best for her. And the times we tried to “let her go” and “give her to Jesus” and how she kept fighting and taking one more breath than we were expecting her to.

I think things happen for a reason, and believing that also helps me not drown in guilt that I did something to make Olive come so early. I have been struggling with those thoughts and feelings...the “what if I did this differently”...or “what if I listened to all my Thai friends advice rather than laughing at them when they told me…” Still I can recognize that those “what ifs” aren’t going to help me in dealing with what tomorrow will bring me, and they can't change the past.

So now I will continue to take a day at a time...an hour at a time.

Yesterday the neurosurgeon asked me if I knew about her case. I told him I had already been told that she had the worst kind of brain bleed and that her prognosis is very bad. He agreed and said that her brain tissue is so thin that she may not be able to do anything but lay in bed when she gets older. She may be blind, and she may be deaf. She may not be able to speak, or process information. He said he hopes this won’t be the case, and that sometimes things turn out better than doctors expect.

I've heard this about 15 times from our doctor in Chiang Rai, and other doctors in the States, but it just never feels like old news. Each time it feels like someone just punched me in the gut and knocked the wind out of me. I tried to hold myself together, but my throat tightened and my eyes welled up with tears. My mind blanked with the other questions I was planning on asking. The doctors and nurse tried to comfort me, but I just needed time to be alone and sob.

I believe that God still does miracles, and I will continue to ask for them. I also know that often He didn’t choose to heal the whole crowd, but only one out of the bunch…and I don’t know if Olive will be that one. But I will keep asking like she will be that one.

When He doesn't answer my big requests like, "Jesus, heal her brain...renew the damaged places" I start making my requests littler...like today, "Jesus, can you at least allow Olive to sense how much she is loved? Can you let her smile when she gets bigger?" And before I go to bed I will ask Him again to touch her, to surround her as she sleeps, and to do more than I can even ask or imagine.

Its hard for me to believe that you need to know the right way to pray--like its some kind of formula. In fact, when I hear that little children are praying for Olive before they get tucked in at night all around the world, it's those prayers I get most hopeful about. Those simple honest requests to Jesus with no fancy wording attached.

It’s been confusing to know where the line is drawn between denial and faith. It’s impossible not to hope for the best. I am willing to raise a disabled child and I will love her with everything in me. I think I already do.

Whether life brings us what we were hoping for or not I am still resting in the fact that God is good. That He is compassionate and gracious, and abounding in love. That Olive is a gift. And that someday far down the road this part of the journey we are on will make more sense then it does while we are in it and searching for our footing.

The little lady.

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.

The next big step.

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 DeVos Children's Hospital in Grand Rapids, MI 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 may not work out based on our doctor's recommendations of what would be required for that to happen.

Our doctors are suggesting that we stay here in Bangkok and go ahead with the VP shunt surgery sooner rather than later. 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 Olive's case, the doctors think that this would be the best option for her at this time.

The hospital we are at is 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 the government army hospital the cost of the surgery will drop significantly. They also tell us that this hospital has a better equipped NICU then the government hospital 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. They also really encourage parents being with the baby, skin to skin kangaroo care, and would help me try 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 them caring 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 begin caring for her on our own for another month. That way, If she has any issues during that month they can help us manage those. 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 fly home.

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

Changes for the better...

I took this first photo this morning after she has had the drain in for 6 days. The second photo was taken last week after the drain had been in for about 2 days. Her head circumference has decreased from 38 cm to 33 cm in the last 6 days. It's exciting to see the changes, even if they are a little at a time.