Friday, August 21, 2009

Baby steps forward

Today was an encouraging day in regards to our sweet little girls. We got news today of the weekly ultrasounds of the children's brains. While Ashlyn's seemed to be a little worse than it had been, they were able to do a spinal tap and drain 3 ml of spinal fluid from her which would help with the swelling in the brain. The real risk for Ashlyn is hydrocephalus which is known as "water on the brain". People with hydrocephalus have abnormal accumulation of cerebrospinal fluid (CSF) in the ventricles, or cavities, of the brain. This may cause increased intracranial pressure inside the skull and progressive enlargement of the head, convulsion, and mental disability. Hydrocephalus can also cause death. The MD didn't know if it would work for several reasons. First it is risky for the baby because of infection. Each time you prick a baby of this size it takes a while for the hole to heal risking infections. Second to me I don't think the MD thought he would get any fluid out from a spinal tap, but he did. He told me he was amazed with how much he got. And thirdly you never know if a baby that is Ashlyn's size can handle the stress that a spinal tap causes. It can cause her O2 to desaturate, and her heart rate to plummet. She tolerated it extremely well the MD said. So while her ventricles were beginning to fill with spinal fluid he was able to take quite a bit out for a little girl her size. Hopefully that took pressure off the brain. Ashlyn is tolerating her breast milk extremely well. She even had a bowel movement today for the first time. Rachel and Haley seem to be doing really well. They had to sedate Ms. Rachel because she is extremely active which drops her O2 saturations. Her oxygen saturation's are so much better when she is calm, and she doesn't have to rely on the vent as much, which is a good thing. Rachel is tolerating the breast milk pretty well too, which is a great thing. The Last thing I want the girls to have is NEC and/or short gut syndrome. Last but not least little Haley seems to be doing great. They haven't started her on breast milk yet, but they did start her on the saline water feeds, she seems to be tolerating that great. They will try her hopefully tomorrow on the breast milk and see how she does. So over all I feel strongly that these beautiful little girls are doing ok. Each day seems to bring different challenges, but they are fighting hard. I hope they continue to develop and one day I will be able to bring them home. Mommy needs these little princesses. This evening we traveled here to Austin in preparation for our graveside service of Kaitlyn, Dallin and Braden. It will be a very difficult weekend to bury our children.

27 comments:

  1. I read your blog each day. My husband and I raised 9 of our 10 children, losing one at 6 months of age due to an auto accident. Each one is precious, and my heart aches for you and the ones who have gone back to our Heavenly Father. Thank goodness for 'forever families' and eternal family sealings. Hopefully the remaining girls will grow and remain healthy and strong.

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  2. Dear Thomas and Amanda

    I pray God gives you both the comfort and peace that you need during this trying time that you are going through. I cannot begin to feel or understand the grief you are suffering at this time. My Senior Pastor once told us to love and protect our children because God only loan them to us for a season, and while they were ours we were to love and nourish them. I feel that God had all this in his plan for a reason though you may not know what his plan is now, just keep the faith and look up and know God has it ALL under control. His eyes are on the righteous.

    He will love, nurture and protect you and your precious little girls. He will always give the nurses and the doctors the ability and the understanding on what to do and exactly when to do for them. May God Bless You and Guide You through this time.

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  3. Thomas and Amanda,

    As I have been reading about your journey with your babies I wondered if they might develop hydrocephalus, because of some the problems they were developing. I have this condition as well, but didn't get diagnosed until I was 19. I was born with it, so if I can make it 19 years and not have a problem. I am sure God will watch over your babies, as he did with me. If you do get that diagnosis. Don't be scared! Technology has made it where there are more options and make it where you can have a full life. I am praying for your family.

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  4. I read your blog daily...checking to see how your miracles are doing. Again, I am sooooo sorry about your losses of your precious babies. I lost one of our twins (born at 23 weeks)so I can feel your pain. May God watch over you and your babies and give you AND them strength. Our family is praying very hard for you all. Hang in there. (HUGS)!!!

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  5. I along with lots of other people, check your blog first thing in the morning. I must know how those sweet little babies are doing each day. I am so glad to hear the girls are holding their own and getting stronger. It is so amazing what they can do with these little ones know days.

    My thoughts and prayers will be with you and Thomas this weekend as you lay Kaitlyn, Dallin and Braden to rest. God Bless you and your family. Sherri

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  6. I am so glad to hear your little girls are doing better. It's got to make you feel great that they are starting to take your milk. I remember the first day they started doing feeds of my breast milk. It actually made me feel so good, because I felt that was at least something "I" was doing for her. Keep strong and my prays are with you.

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  7. Praying for peace and strength for you this weekend and in the coming weeks. Praying for your 3 little princesses, for health, for NO INFECTIONS, no setbacks, NO NEC, weight gain gram by gram, tolerating feeds, and so much more! Have walked this journey with a friend and can't even imagine the emotions running through you. Know that you are being prayed for continually and that God KNOWS ALL!!!! With love and prayers, Danielle

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  8. I'm so glad to hear the little girls are doing well. What a blessing. My thoughts are with you this weekend. I know it will be a busy and emotional time, but if you get a chance while in Austin I would love to see you. God has a plan and you will be blessed if you follow Him. Kathryn & Family

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  9. My prayers go out to you this weekend as you bury your 3 children. I know it's been really hard leaving Houston and your 3 little girls.

    I believe that God will be watching over you and wrapping you in His comfort and love.

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  10. Thank you for the update. Our hearts travel with you to Austin and we continue to offer our prayers in your behalf.

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  11. I lost one of my triplets 8 yrs ago to prematurity at TWH! My heart and prayers are with you as you lay to rest 3 of His precious children. Our children are on loan from God for however long He sees fit, and sometimes it never feels long enough. I will continue to pray for your 3 daughters living to see another day, they are incredibly strong fighters! Homesick by MercyMe has always been my way of explaining how I feel regarding my children. Part of me lives in Heaven with my son, the rest here on Earth with my girls! God Bless you, your family, and your sextuplets!

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  12. Amanda and Thomas, I am very happy with the news! Your three little princesses are so strong! I am confident that they will continue to improve and go home with you. Go girls, go!!

    My prayers and love are with you during this journey, specially during this weekend while you lay your three angels to rest. I know it is hard; however, He needed them back for a reason. God bless all of you!

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  13. You guys are in my prayers, I wish you safe travels to Austin--I cannot imagine how tough this burial is going to be for you.

    I am praying for your princesses and for them to keep on the up and up!

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  14. It's great that your girls are doing so well. I'm so sorry about you loss. I know that knowing where they are, and that they are okay, helps but it's not the same as having them here. My prayers have been with you and your family and especially will be during this tough weekend.

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  15. i don't know when i was so happy to hear about poopy. Breast milk truly is a wonderful thing. Rachel just needs to get up and moving - she'll be your little live wire!
    Know of thousands of us who will be thinking of you as you lay the three babies to rest. This is only for a moment...
    love, Erma

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  16. Our thoughts and prayers continue to be with you as you say a temporary goodbye to three of your little angels.

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  17. I have never been so happy to hear about a baby pooping! :) They sound like they are doing wonderfully, all things considered. You are all in my thoughts and prayers constantly.

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  18. May God's peace be with you this weekend. As I can only imagine how hard it is going to be. Just remember they are home now and safe!

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  19. Thomas and Amanda,
    My heart aches for you!! Thomas has always been like a son to me and I want to be here for you as you go through this trial. Your faith is so strong. Hang in there!! Please let me know what I can do for you.I work in the Medical center and can be there for you anytime.
    Love,
    Mom "O"

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  20. I'm so glad to hear all of the good news about your girls. These baby steps are so exciting! I'm so grateful that God watches over us and these things aren't left to chance. We love you and will be thinking of you tomorrow.

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  21. My prayers are with you. I can't imagine how difficult this all is.

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  22. Hey guys. Glad to hear you had some ups after so many downs. We are praying so hard for your three tiny princesses. I know our Heavenly Father is looking after them while you are away. Our deepest sympathies are with you while you are in Austin. You both are so incredibly strong. We are still praying every day for you every day.

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  23. I think all the Stansels are fighters, including you and Thomas. We're still praying for you. May you feel the love of the Lord this weekend as you lay Kaitlyn, Braden, and Dallin to rest.

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  24. I am glad to hear that your 3 girls are doing as well as they are. We continue to have you in our thoughts and prayers. I hope all goes well in Austin. Love, Brad & Elizabeth

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  25. I'm thinking of all of you everyday and am uplifted to hear how well your three girls are doing. I pray that you will have them home by Christmas, if by the grace of God.

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  26. I've been following your blog for a few days now - so sorry to hear of your loss. What a relief and comfort it is knowing that your goodbye is only temporary, and that you will see your children again!

    While we're not the parents of multiples, we do have our own preemie, Connor, born at 26w6d this past December (2lbs, 6oz). Do I ever understand this NICU rollercoaster you've found yourselves on!

    Connor spent 120 days in the NICU (came home a month past his due date), had 3 surgeries, infection after infection (was septic several times), NEC, IVH (Grades 2 & 3), ROP, etc. We always seemed to get more bad news than good.

    We learned valuable lessons during those 120 days... when to trust medical advice, and when to question it, how to be an advocate for our son, and how to rely better on God and those around us.

    He finally did get better, stronger, and we finally saw the light at the end of our long tunnel.

    Connor came home without any monitors, but he did have numerous specialists to follow-up with, and 9 medications to schedule into our days. Slowly but surely, we're seeing specialists less frequently, and we're down to 2 medications (after just 4 months at home).

    Other than being small for his size, and needing a little bit of therapy to keep him on track with his development, Connor is doing amazingly well! Just have to monitor a few residual issues we hope he will grow out of in time. We count our blessings every single day!!

    Sometimes I still can't believe we survived our experience... but I know that our faith, and the support we felt from family, friends, and internet followers carried us.
    Stay strong - you CAN do this.

    My husband and I are happy to help in any way we can... even if you just need someone to talk to. Please feel free to contact us through our blog.


    Keeping your family in my prayers,
    Aimee

    http://sprik.blogspot.com

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  27. Thomas and Amanda,
    Your faith and trust in Heavenly Father is inspirational. Good luck to the three girls and especially Ashlyn. I developed hydrocephalus at 4 months and have lived a full and healthy life so far with no disabilities. There are many successful stories of children with hydrocephalus! God bless, Amanda

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