Wednesday, September 29, 2010

Day 134

I have attempted to update the blog several times over the past few days. I find myself at a loss for words or news on where we stand. Honestly we don't know. Bella is back on cpap, almost as soon as I typed the words in the last post saying that she was on high flow cannula for now we got the news they had to switch her back to cpap. She is still requiring 100% oxygen from that as well. She has been extremely tired and working hard to breathe over the last few days. Today she seems to be more alert and comfortable. We hope that continues. It seems that we are back to "watch and wait" and I am reminded again to turn it over to the Lord.

It also seems that we are in need of another care conference with our doctors to give us an idea of what our options may be from here. We have heard the term "trach" over the past few days for the first time regarding Bella. I have started research on this and feel like while we are not quite there yet, we should start prayerfully considering this option. Here is some info on this procedure:

"A tracheostomy is a procedure that creates an opening through the neck into the airway through which a tube is placed. The tube, called a tracheostomy tube, allows air to flow into the lungs and allows the airways to be suctioned.

In preemies, tracheostomies are usually performed when premature babies cannot breathe on their own for long periods of time. Tracheostomies allow patients to be mechanically ventilated without a tube in their mouth or nose, and allow mechanical ventilation to stop and start more easily. Tracheostomies may also be performed when babies are born with conditions that make breathing or clearing the airway difficult or impossible. "

This procedure would allow us to bring Bella home sooner. It could be removed once her condition (lungs) improves, which would hopefully be in a few years. Personally after doing my homework on it I am not as scared as when I first heard of it. It requires much more training on our part on how to take care of her and some homehealth nursing but I know God isn't going to ask us to do anything we are not capable of doing. I would do anything to see her breathe comfortably and continuously so if that means bringing a little portion of the NICU home with us to get her home then so be it. But like I said I don't think we are there yet however as soon as I finish writing this blog the news could change....Another struggle with the idea of the "trach" is that we would have to have Bella transfered to Vanderbilt Children's Hospital- the place that refused to try to keep me from going into labor, the place that gave me the option to abort her but no option to save her, the place that took 7 hours to get an ultrasound done when I had gone in thru the emergency room with preterm labor signs.... This is yet another step in our faith journey that we will have to take, we will have to walk forth in comfort that the Lord walks before us AND I will have to be there with her 24 hours a day while she is there. I know some wonderful people that work at Vanderbilt so I hate to "bash" that hospital but I am certain had they been in my position they would also be hesitant.

In preparation of a hypothetical move to Vanderbilt I am organizing medical information on Bella's history to date. I am reminded, amazed and completely gracious for how much she has overcome in the past four months. Looking at this list of everything she has been thru takes me back to the moments after her birth when we did not know she was even alive, to the weeks after that when we did not know if she would make it and it brings me back to now. Where I sit here today as a mother that has been given the blessing of holding, feeding, bathing and caring for this precious, beautiful girl that was given a 5 % chance of survival. We will continue down the path that God has set for us, we will continue to pray, we will continue to believe and she will continue to be the greatest gift we have ever recieved.

We are also still praying for my Aunt Daisy in Memphis, who is still on the ventilator and showing little improvement and for Maddie, who is still at Vanderbilt Children's Hospital fighting a bacterial infection in her blood stream and the many complications that come along with that. I pray that the families of both can close their eyes as I have my own and feel the powerful peace and warm embrace of a wonderful God.


Much love to you all

Telisha


4 comments:

  1. I can understand your trepidation, but the upside to this would mean that Bella is progressing. You will also be working with nurses who make it a mission to save babies like Bella every day, all day long -- completely different part of Vanderbilt from what you were seeing. I pray that Bella will be stronger soon and ready to go home with you soon. I am also praying for Maddie
    and Aunt Daisy. If you come to Vanderbilt, I can treat you to lunch in the cafeteria, or perhaps somewhere better nearby.
    Love you, Lee Ann

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  2. Prayers continue for you all. My heart goes out to you and I am reassured that God will continue to watch over and protect you. I am in awe of your faith-may it continue to get stronger. Bella could not have asked for a better mom and family.
    In Him, Sheri

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  3. We've been around the block at Vandy, and while they haven't exactly knocked it out of the park at each encounter, I can't say enough good things about the NICU. In fact, I think our experience in the NICU spoiled us for medical care anywhere else! The NICU is ranked 13th in the NATION, they have all the specialists you need on had, the attendings are always nearby, and like Lee Ann said, the nurses there are following a calling to help save the sickest babies in the region. (But I know that your nurses are phenomenal as well!) In my experience, if parents push (respectfully), you have lots of say in your child's care. Also, it may be helpful for you to know that you can always refuse residents or students. We were on the nurse practitioner team (so we had NNP's instead of residents), and they were a.m.a.z.i.n.g. Anyhow, I'm happy to talk with you more about Vandy and tips and tricks if you do end up transferring, but first I'll be praying for clarity for you, Chris, and the care team!

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  4. Prayers continue for Bella, Ms Daisy and little Maddie. Hold tight to your Lord's hands T. He will show you what to do and what to decide, Bella is a strong little angel and she is here for a very special reason. I pray she will not need a trach but if that is the case then you need not worry the Lord will provide whatever she needs. And she can come off the trach as her lungs develop.The company I work for have alot of children we care for in their homes with special needs such as a trach, O2 therapy, ROM exercises, transferring them from their beds to strollers or wheelchairs and going with them to Dr Appt and school as well. They specialize in children. The little girl I care for is at home with her grandmother, who is totally disabled as well. She was only 14 oz when she was born at Vanderbilt 28 years ago. She came home with a trach but only had it a short time and no longer requires it. She is a very happy child and a joy to work with and care for . Our nurses are very loving and attentive to the children's needs and the parents rest comfortably knowing they are well taken care of 24 hours a day 7 days a week. So if the need arises that she will need nurses rest assured there are alot of great ones out there to help out. God will watch over her and your family because he loves all of you so much. He knows the powerful love and faith you all hold to and He will Take care of his children. He has huge plans for Bella though we know not what they are. She is an inspiration to all of us and she will do great things in this world to show his power and his love. Bella has traveled far down her path he has chosen but there are still so many rainbows yet to be discovered on her journey and Your Lord is awaiting the chance to show them to Her and her family. So continue to hold tight to his hands dear for the guidance and strength he gives to you and your family. If you stumble as we all do from time to time he will forever be there to pick you up. God Bless Bella and her beautiful family and God Bless the little children.

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