Tuesday, June 2, 2009

"Holding On To Hope"

So, I am 32 weeks now. Hope is now 4 and 1/2 pounds! We didn't know if she'd ever get this big, but she's growing at a normal rate. Also, up until now, we've been seeing a pretty large growth on her face next to her nose. The doctors never could tell us what this was, or what caused it, but we don't have to worry about that anymore, b/c on today's ultrasound, it was gone! Yes, just gone! He couldn't really explain it, but it definitely wasn't there anymore, and her legs and arms are reading at almost 35 weeks! She's got her mommy's legs! I swear she hates these ultrasounds, every time we get one, she kicks the probe the whole time! The girl that was giving it to me couldn't believe it.
So today we spoke to our high risk doctor, genetic counselor, and a neonatologist. We thought we had our decisions made, but they gave us so much to think about. They were wanting to know what we wanted them to do for her, and we realized, we weren't quite sure yet. One thing we need to decide is if her heart rate starts dropping, do we want an emergency c-section. I hadn't thought of this, and am torn about what to do. They were explaining to us that if I did, I wouldn't be able to hold her, and I'd be really out of it, and probably wouldn't remember much of her delivery at all. Due to this, I'm pretty sure c-section is ruled out. I can't imagine missing her only moments alive, or not being able to hold her as soon as she's born. I wouldn't even be able to get out of bed and go to the NICU to see her if that were the case. Vaginal delivery is very important to me, but they're not sure if I'll be able to due to the size of her head. (it's reading 34 weeks) One suggestion was to get induced a little earlier, so that her head wouldn't be as big as it would be if I waited. I just pray everything works out as far as this goes, I would hate to miss the experience of a normal delivery.
Now to our biggest decision, do we want her put on life support if need be? This is where we're really torn. According to the neonatologist (NICU worker) if she's not already breathing on her own and they put her on breathing tubes, it would only be prolonging the inevitable. We'd either have to turn around and take her off of it, or she'd probably never be able to breathe on her own. He said usually the only reason they would put a baby on life support is if they think they can somehow change the outcome or help the baby by doing so, but in our case, he doesn't think it would help matters, however if that is our wishes, they would do so. He said he anticipates her being able to breathe on her own, then the only issue would be feeding, due to the clefting. He said they'd put her on a tube for the time-being, just until we could hopefully get her to take to a special feeding bottle. He said that usually if baby's lungs are formed properly, which hers are so far, they don't have problems breathing. So hopefully, feeding will be the only issue. But we have to make a decision as to whether to put her on life support if things don't go well. We thought we had already made this decision, but after all we heard today, we are torn. Scott said these appointments take so much out of him, and it's true. So here we are, approaching our due date, praying for wisdom to know what to do for her. I hope everyone will keep praying for us as we try to come to some decisions, pray for little Hope to keep doing good, and feel free to let me know how you feel about all this.


  1. The Lord is working, and we're still praying! The good Lord will be continue to be with you, helping you to make the right decisions throughout your journey with Hope.

  2. After reading your journey with Chloe and now Hope, I am in awe of your "awesomeness" You may not think so, But GOD is working thru you to show the people that you "touch", that he is truly AROUND....EVERYWHERE. I am praying for you and that GOD gives you and Scott the strength and courage to make the right decision, and when you do, BELIEVE that there are alot of people behind you.....Praying for you, thinking of you..... As your mom said above, the LORD is with you in all theses decisions. Praying for you, Scott and Hope.
    Nikki Johnson (Friend of your Mom's)

  3. Hello. My son is now twentyone months old and he has alobar holoprosencephaly. He is far from in a vegetative state. He smiles, laughs imitates some things. He is very visually attentive and attempts to play with toys. Unfortunately the drs do not have a very good understanding of the disorder or the impact good and bad that it has. I hope you have found some hopeful stories. Certainly the cards are stacked against your weenie one however all 'hope' is not lost. I am thrilled I have found your blog and will continue to follow and will rejoice with you when Miss Hope arrives. As an aside my son (whom I did not give birth to) was born vaginally however he does not have hydrocephaly) I do also have a daughter with hydranencephaly whose head measured at the ninetyfifth percentile at birth and she was a vaginal birth. Wishing you all the best!

  4. I found you through baby April's blog. I have been reading about your journey so far and I am amazed at your strength. I am praying for you and your family that God will continue to strengthen and comfort you. Both of your girls are "fearfully and wonderfully" made and God has a plan, no matter how painful it has been, to bless you through them. Your story has blessed me, too.

    Prayers and hugs from Alabama!

  5. Praying for Hope to have a live birth & that you will have time to meet & enjoy her.

    Love from Oklahoma,

  6. I'm new...I need to read more to fully understand but...I am SO very sorry that you are having to make these decisions. My heart is heavy for you. I want you to know that...I am adding you to my list...I will be praying for direction, peace, and protection over the life of your little one.

  7. Ruth & Scott,
    I'm continuing to pray for you both, as well as baby Hope. God can do amazing things. I didn't share this story with you before, but my Grandmother has a disease they cannot cure, they can treat its symptoms. In any case, it attacked my grandmothers vocal box which took her voice, for several years she wrote everything and while on the phone she would have to yell which still sounded like a very faint wisper. We prayed for her daily, and after 2 surgeries still there was no improvment, but we continued to pray, and one day a few years ago I got a phone call, and I said "hello Aunt Nettie" to who I though was my great aunt, but the voice on the phone said "No Lindsey this is your grandma, God anwsered our prayers" I cried so hard, and I'm crying as I type this. God truley can provide us with miracles. Sometimes they are small and sometimes they are life changing. Hope will always be a miracle in your life, no matter how long or short her life may be. So keep your faith strong. I feel so blessed to have met you, and I will pray that God continues to work and heal Hope, as well as give you strength and wisdom.
    Best wishes always!

  8. Hello! My name is Nicole and I found your blog through "April Rose". I just wanted you to know that I am praying for you and that God would give you the strength and comfort that you need at this time.
    I am almost 27 weeks pregnant and we were told that our little boy has Meckel Gruber~ a rare genetic disorder and will most likely not make it through the birthing process and if he does it will only be for a short moment. You can read our story on our blog: theargoblog.blogspot.com
    I know it is hard to speak to people who have NO idea what you are going through. I just wanted you to know that there is someone else out there that feels your pain and that you are not alone.
    Blessings to you and your family,

  9. Just another Mama who found your blog through April Rose's. Our unborn daughter was diagnosed with Trisomy 18 & although our diagnosis is different than yours, I can relate to the agony of thinking through all the decisions we would have to make regarding her delivery. Pure agony. The Lord ultimately took care of those for us as Olivia died 3 weeks ago at 28 weeks pregnant.

    It sounds like Hope is doing well by growing & having a good prognosis for her breathing. The best advice I ever came across regarding making these decisions is just to 'let your baby lead'. Praying for you & these decisions. I know they are just so, so hard to make.....

  10. Praying for you, I just can't imagine!

  11. I just found your blog. I'll pray for your little girl! What a difficult decision.

  12. Found your blog through April's momma...I'm praying for you and your little girl.

  13. Praying for peace for you and your family. You are so brave to share your story. May you be blessed in Jesus' Name.


  14. Hi beautiful girl. Thank you so much for stopping by my blog. I wanted you personally come and say hi and let you know that I am praying for you. You have a beautiful blog, two beautiful girls and I look forward to seeing what God has planned for you.

    Come back and visit again.

    God Bless.

  15. praying for you and baby Hope,,God bless from Florida


Maternity Photos By Lindsey Tomlinson