Surrounded by so many of you...

In the last 48 hours we have seen Olive go from sleeping solidly to being very alert and active. This in itself has been very encouraging news.

In other news we are seeing another problem developing with reflux after her feedings. She has been throwing up after most of her feedings while arching her back and crying inconsolably. We have been told this is a common problem for premies and even more common in infants with neurological problems. One of the ways you can prevent reflux after feedings is to elevate her head. However, we aren't able to do this with the leakage around her shunt. The longer her head is elevated the more swelling we see around her shunt tubing.

Dr. White is suggesting to try less invasive methods to treat reflux in the next few days (smaller and more frequent feedings, medication...etc), but said if these things are ineffective then she will most likely need to undergo surgery next week to solve this problem. Poor little peanut...her issues just don't seem to end.

Tonight I had dinner with my dad while mom stayed in the NICU holding Olive.  We went to Chili's and spent a good amount of our meal crying together talking through life the last few months, and the journey ahead. I was reminded of how grateful I am to be here surrounded by family and friends. A few months ago Rusty's childhood pastor (Ken Koeman) wrote and e-mail to us and these words from it resonate so well with life these days...

"And, in the meantime, we pray that those threads by which you are just barely hanging on, will become strings, then ropes, then cables.  We are so grateful for those who are gathered around you.  Remember that they are Jesus to you.  He is there, in them.  That is how real his presence is, in your fiery furnace." 

unexpected laser treatment.

This morning after arriving in the NICU we were asked to sign consent for Olive to undergo round two of laser eye treatment. The opthamologist came two days ago to assess Olive and noticed that while one of her eyes had been treated very effectively in Thailand, the other looked like only half of it had been treated. Since then, the doctor here has been in communication with the doctor who performed her treatment in Bangkok. The ophthalmologist in Bangkok told him that they weren't able to finish treating one eye because the power went out...what????? A small detail he failed to mention to us.

This afternoon she had laser treatment and everything went well. She hasn't woken up all day because of being drowsy from the sedation medication they gave her prior to the treatment.

This evening I went to hold her try a little kangaroo care and while holding her she stopped breathing. Usually she can come out of her apnea spells on her own, but this time she didn't and the nurse had to bag her. I learned later that this had also happened earlier in the evening. I'm not sure what is going on with her. The doctors aren't exactly sure either except that it seems to be caused by neurological problems.

Olive also been having some complications with her shunt. After arriving from Thailand the CT scan showed that she had fluid on top of her brain that most likely occurred when too much fluid was released at once during a previous tapping in Bangkok. The neurosurgeon set her shunt so that she would have increased pressure in her head to help that fluid on top of the brain move back into the ventricles. The fluid has since moved back in the ventricles but now it is leaking out around the shunt all the way to the peritoneum. We have been told this isn't a massive problem, but one that just needs to be monitored.

I'm going to bed tonight feeling pretty worried about her little head. I know she is under the care of excellent medical professionals, but I also realize that there is only so much they can do. Each day it seems we get more of a reality check learning about different problems she has and how this will affect her future. These informative meetings force me out of that safe place of denial I often like to rest in, but if I sit in the reality of it all for too long I get overwhelmingly sad.

I'm feeling so sorry for her little body and how much she has been through. These new episodes of apnea and dropping her heart rate continue to worry me. Wishing there is something I could do to make her life easier.

Lots of people have been reminding me that one day we will look back and understand clearer why things happened this way...I really hope so. I keep telling Jesus that someday He will have a lot of explaining to do to me to help me understand all of this.

update.

Over the last day and a half Olive has started to act a little more like herself. She is still having some of those episodes of apnea and bradycardia, but not nearly as often. The doctor is not sure if her episodes are due to them trying to wean her off of seizure medication (which have since been increased), or if they are the beginning symptoms of cerebral palsy. We were told that prior to these episodes Olive had a 90% chance of developing cerebral palsy, but now they would even assume a 99% chance.

As far as her head, today her head circumference grew a bit, and her fontanel was tense. Tomorrow morning she will undergo another CT scan to assess the fluid in her head. After the scan the neurosurgeon will know if everything is ok with the shunt, or if there are any complications.  If things are ok, he will then most likely reset the settings on the shunt with a magnet to have it release more fluid than it is currently releasing.

We are still recovering from jet lag and waking up at 4:00 am having conversations, but each day we are feeling more like ourselves. This week will be filled with meetings with social workers, physical therapists, occupational therapists and a nurse who teaches massage therapy for infants.

Olive has been having trouble feeding since arriving here. She has either been drowsy, exhausted, or irritable and hasn't done well bottle feeding.

We have been thankful for so many friends and family who have been supporting is in so many ways since coming home. It's been hard not to feel concerned when Olive hasn't yet returned to her pre-surgery little self, but we are hoping within a few days things will continue to improve.

thank-you for all of you who have been thinking of us and praying for Olive.

Much love,

Lynette

Not doing so well.

This morning Olive was taken off the ventilator and was doing o.k. until this afternoon when she started having seizures that were causing her heart rate and oxygen saturation to drop. Her seizure medicine has been increased since then so we are hoping this will help. She hasn't been back to herself yet. Still having pretty weak quiet cries and not fully alert.

Going to bed worrying about what may be causing these seizures since she hasn't had any since being in Chiang Rai, but also thankful to have her in his place where the care is excellent.

Please continue praying for her recovery.