Thursday, December 16, 2010

Day 212

Well I got a little ahead of myself on days but confirmed that this is day 212...Day 212 is filled with many blessings yet again. Bella LOVES her new trach. She has been awake and active for the past 2 days. I can't express how excited we are to have her back with the ability to move around without the fear of the ET tube coming out or her gagging on it. I just know she has to feel so much better!

Recovery from this surgery has been a success to say the least. Her oxygen requirements have gone down instead of up as we had been warned they may. She is on 47% oxygen today and still weaning. The tricky part now is weaning her off all of the sedation & pain meds she is on, this is a slow process. Even after her next surgery it could take several months to get her off of all of them. Our next step will be to get the upper GI testing done to see if she will in fact need a nissen in addition to a gtube. We are told this test should take place next week and hopefully the surgery for both if needed will be the following week. Both of these procedures will be how we feed Bella to deal with her reflux issues and avoid possible aspiration. As we know from past experience our plan here is dependant on her staying well and no other setbacks. We will approach this prayerfully and accepting yet again that God's timing is always perfect.

I haven't really had the chance to talk about what the trach actually means for Bella and for us. This is something that will be a part of her life and ours indefinitely. Some kids have it for 6 months, some for 2- 3 years and some for the rest of their life. There is no way of knowing where she will end up. What it means to us today is that Bella has a quality of life while being dependant on the vent. She is more mobile, can be held more easily and we can start to work on her needs developmentally. It means she can rest more comfortably and we pray start to grow and thrive. We had to accept that we will not hear her cry nor will she be able to fully talk with the trach in, it was a big pill to swallow but given the other options seems small in comparison. We will start working on our sign language now and gladly accept that this is another way we can grow & learn from our little angel. It also means that once she comes home that she will need to have 24 hour home health nursing at first. That is if Tenncare doesn't boot us when she gets home as they have so many others....that's another blog! It means that she CAN come home while still dependant on the vent, however with MUCH lower vent settings (this could also take a while...) No idea or talk of when she may able to come home, we don't ask questions they can't answer. We have been told that it would not be surprising if we remained a year. We are prepared for the long haul but hoping/praying for the best. A year out of our life seems like nothing when we look at the big picture that includes her!

I realized that along the way we have not fully updated anyone as to what any of this means long term for us as we have and still are only able to take it one day at a time. However I feel it is important for folks to know that what we consider "good" and "great news" now for Bella carries many special needs and even when we get home there is a long road ahead. I also think that it is important to know that we are completely at peace with where we are and for what is to come. She is as God has made her and that is perfect to us....We are only now starting to fill Dylan in on the details of what to expect with Baby Sister, we want him to be comfortable with everything before he sees her again. We are making a Baby Bella doll for him complete with a trach and later a gtube so he can see for himself.

Thanks again for your continued support. I say this often but it truly means alot to us to have so many folks that care so much. I get messages daily from folks that are not obligated to do so checking in on Bella and giving us encouragement. The Lord has truly surrounded us with the most wonderful people that we did not know that well going into this. It is a blessing!

Much love to you all

Sunday, December 12, 2010

Day 211

We couldn't be more excited to report a great weekend of recovery for Bella. There was some concern on Friday because her heart rate was running low. However after a few tests we found that her heart actually looks better than the last time we looked at it & her hypertension is showing signs of improvement. We believe (although many argued with us) that her sedation was a bit heavier than she needed but we got past it. We are so incredibly grateful to our primary nurses whom have pulled together to form Team Bella, insuring that she is getting great care to see her thru this recovery. They are amazing advocates for her & we really trust their expertise.
They are starting to cut back on some sedations & she actually woke up some this evening. Bless her heart she looked very confused but is handling it well so far. She remains on the same vent settings that she went into the surgery with which is amazing & we pray they keep improving from here.
She will remain on heavy sedation until Tuesday when we do her first trach change & can rest comfortably after that. We will start learning how to care for it soon after & are excited to get comfortable with all of her needs. This surgery & recovery were like those in the past where we truly felt every single prayer. Again we were impressed with all of the concern, support & thoughts sent our way from all of you...
I look forward to having time (don't know when that may be) to really sit down and blog again. Parenting two kids in two different locations has proven to be a challenge but Chris & I are doing the best we can to keep up! We have found that even though our world may be put on hold the rest of the world keeps going around us.But God has proven that He will never gives us anymore than we can handle as proven this weekend! So we continue our journey with a heart full of gratitude & a life filled with God's grace...Hope everyone is enjoying the beautiful snow & holiday cheer!

Much love to all

Thursday, December 9, 2010

Post Op Update

The good Lord has carried us thru once again! Bella made it thru surgery beautifully & so far so good for recovery. They tell us the next 48 hours could be rocky but she looks wonderful right now! She will be under heavy sedation for the next 4-5 days so that she heals properly. Tonight was the first time we have seen her without tubes & tape on her face in 2 months. We feel incredibly blessed tonight & eternally grateful for the overwhelming support & love from all of you. I am off now to stare at her beautiful little face & spend the evening praying for a successful recovery. More updates to follow soon...

Much love to all

Wednesday, December 8, 2010


Well folks it has been a blessed week since my last update. Bella responded beautifully to the steroids and prayers. We are going to surgery tomorrow at 3:30 for the trach!!!! We could not be more excited to get this done. Like with any surgery we are looking at possible risks but we trust that the Lord's timing is always perfect & He has led us to this day. We will trust & praise instead of worry & stress. Please keep Bella in your prayers as the next 4 days are crucial for a positive end result. I will update post op or before. Thank you all for the endless support, continued prayers & love.

Much love to you all