Friday, January 16, 2009

Intubated....AGAIN!

Yesterday at 11:15am I called to check on my Angel and was told she was doing great. She had a bath and handled it very well. Her weight was still 2 lbs 5 ozs and was on 35% O2. Imagine my suprise to walk in at 4:45pm and find her Bubbles gone and not for the better. Soli had to be reintubated yesterday. They are not sure what is wrong. They suspect an infection and have started antibiotics. Preliminary bloodwork says no infection. Best case senerio is that she has refluxed and asperated some milk into her lungs. Luckily when she started going downhill the dr was there assessing her and made the decision to intubate her rather quickly. She seems to be doing better right now that she is back on the vent. She is getiing 60 Breaths per minute by the vent and is on 60% or higher O2 and as of last night she was making no attempts to iniciate her own breaths. She was allowing to machine to do it all for her. I knew something was wrong, there was no fight in her. They moved her across the room because theyhad a transpot coming in. Talk about holding my breath! I held mine the entire move because they had to disconnect the Vent and manually bag her for the move.

Morning update: Soli has been weaned a bit on the vent settings and is at 50% O2. She is tolorating her feeds which are at 22.5ml every 3 hours by NG tube. The good news is that thru all of this she has gained 6 OZS in the past 24 hours! Little Miss Soli is 2 lbs 11 ozs! Yea she shocked her nurse too (who weighed her several times to make sure it was not a mistake.)

This is shocking to me as I seemed to have fallen into a false sence of security in the past week. Everything was going great and we were looking at coming off the bubbles. This is not what we had in mind when we said she would come off the bubbles. So a step back yesterday and another realization of how fragile she is and how quickly things can change.

More and more I feel as though I am supposed to submit and tell God that I give her up to him and trust in him that he knows what is right. But the truth is I am afraid. I am afraid that if I tell him that she is his that he will take her from us. But I am afraid at the same time that if I do not he will take her for not giving her to him and trusting his will. I guess in a way I feel I am in a no-win situation. So instead I keep praying asking him to tell me what he wants me to do. I think I know but am not listening because it is not what I want to hear.

I am lost. My inbox send me the should be happy you are X weeks pregnant. It tells me all the things that should be going on with me and my baby. I used to have 3 of them coming to my inbox and I changed one of them one day to reflect her birth. Yesterday I got the Your child is 5 weeks old email. It tells me all the things my 5 week old should be doing. I am stuck, not sure where I belong. I am supposed to be 30 weeks pregnant yet I am the mother of a 5 week old. There should be a mix one for parents of preemies because the pregnancy one only throws in my face what my body should be doing and the 5 weeks one only shows me what I am missing not having a "normal" baby. GAAAD I should just unsubscribe to all of them....

15 comments:

heather said...

so sorry about the setback dani! i will continue to keep soli and yourself in my prayers! hang in there mama!

Anonymous said...

(((HUGS))) Dani! I am praying for you ALL today! I know it seems very confusing and hard right now... but try to remember that God LOVES Soli & He brought her to you & this earth for a reason! As hard as it is for any of us to realize... God still loves our babies even more than we do! He created her & has known her from before she began to grow in you! He knows every hair on her head & she is the very apple of His eye! (So are YOU!) Our heavenly Father is a loving & faithful God! His word says that whenever 2-3 are gathered, whatever they agree on in prayer together will be done... We are together in spirit... and have agreed in prayer already that God would heal her & stregthen her! I believe He will!

Whatever the purpose, God will use every circumstance for good & He will comfort, strengthen you & even use you to help others throughout the whole thing!

Call me if you need to talk! I love you!

~Joy

Anonymous said...

Dani, I am from your DDC on Baby zone, and I am keeping up with your and little beautiful Soli via your blog.
I think your little girl is a fighter and you know that, take the hesitation and fear out of your self and be as strong as she is and stronger.. She is also feeding off your strength and she needs to know that mommy is strong willed' as well so that will keep her going...

Dani your daughter is a blessing she is strong, and I pray for her and wish I could give her all the strength in the world to over come this up hill road she is on... I believe she will win... Stop thinking about the things that have happened to her room mates this week or the other little ones that come in that are worse, just as bad or maybe better than Soli.. You need to remain focused on Soli and the GOOD, think positive, think great things that she has already over come and think of the future because she WILL fight and she WILL come home with you and she WILL be living proof of the power of God and Prayer.

Be her fighter, be in her ring don't come out of her corner for a second to talk to the ref or try to figure out what the ref wants- just be there for HER and stay by her side cause she will win this fight.. She is a survivor...

My thoughts and prayer are with Soli,
Your friend -
MarchDDC ann2006
Anne

Sandra said...

Soli is in our thoughts and prayers and you too momma, stay strong. She's a fighter!
~Sandra (DDB)

Amy said...

Dani, having been there before with both of my preemies, I know how hard it is to know what it is that God is wanting for you and for your child. I know how frustrating the setbacks can be and how much it hurts as a mother to watch your child who should be at home, full term, doing normal baby things as they lie in an isolette fighting for their life, how much it hurts to walk out of the hospital each day without your baby.

There is one bible verse that got me through some of the tougher times, and I'd like to share it with you in hopes that it will bring you some peace as well.

Trust in the Lord with all your heart; and do not lean on your own understanding. In all things acknowledge him, and he shall direct your way. [Proverbs 3:5, 6]

As hard as it is, believe that God has a plan for your sweet Soli and that He won't ever give you more than He thinks you can handle. My prayers are with you and Soli today and every day. (((hugs)))

katiesmomma said...

Soli has come so far.. If God was going to take her i feel as he would have already. the fact she gained so much shows her fight is back. She has so much to live for. i know it is scarey.. and even scarier for you b.c she is how old i was when i had colton yet she is 5 weeks old. Everything is in Gods hands...He isnt waiting for you to do or say anything besides fight for your child and be strong so she feeels it1

Lowcountry Mom said...

(((((((hugs)))))))))) I'm a new follower of Soli's story, and just wanted to say that we're praying for you guys. I'm a 2x Mom of preemies too, and my youngest was born at the same birth wt. as Soli. NICU is so tough, especially the whole roller coaster aspect of it...........

Just keep the faith, that's all you can do. Believe that God is watching over her, and over you and your family, and continue doing all that you do to be strong for her. I'll be praying that this intubation is the last one, and that her NICU road is smooth and straight from this point on.

Whitney Buckley said...

I didnt know if you would remember me or not as it has been 2 years since i've been on the baby zone boards. I ready your blog today and just felt I needed to say something. What you are going through hits so close to home its hard to read. I remember feeling the same way when my son Jaxon was in the NICU and PICU. We had times he was doing so well. He made it through his open heart surgery and the drs were all so proud of him. Then one night he coded and couldnt come back from it. I feel like God prepared me though, even when I fought it. I had a feeling 2 days before he died that I would not be taking my little boy home. The drs did everything they could until finally I had to ask them to stop. There was nothing more that would help him and I didnt want him to suffer longer than necessary. That was the hardest decision of my life. God has been my strenght through all of this and continues to help me get up in the morning. Thursday Jan 22 Jaxon would have been 2. I am praying for you and your family but the most important piece of advice i can give you is this. Everything happens for a reason, God will not take your baby girl for resisting his will or any other reason but the only reason he needs. He knows what our life has in store for us. I thank him everyday. Knowing what Jaxon would be suffering through if he had survived breaks my heart. Instead he looks over all of us every day to make sure we are safe. Enjoy your time with her because like you said. We are promised nothing. If you need anything please dont hesitate to let me know. Even if you just need an encouraging word.
Whitney
bsymomma04@yahoo.com

Mama_Ashley said...

Prayers and hugs for you and Soli!!!

Amy said...

I saw the package I sent you was delivered today. I hope you like everything! :)

Dani said...

OMG Amy! I love all the hats and the blankies and the dress you made for Soli!! I took her purple blanket and a few hat to the NICU for her and when they change her bed nect her blanket will go on her bed. As soon as she is a bit more stable they will put her hats on her too. I will take a picture and post them s soon as I can. Thank you sooooo much!!

Reveda said...

Hi Dani from India,
I am a father who writes a blog for my daughter as her narrative and always follow your blog. All I want to say is that- whatever you are writing on your blog or the comments left by people are nothing but unsaid prayers to God to lend strength to Soli so that she could fight her battle. I have no doubt whatsoever in my mind about her being able to withstand and pass this test of God. Her fight can only make me wonder what a profoundly strong person she would become when she would reach her teens.

I have read somewhere a very good and meaningful piece which meant to convey that- One only needs to make an honest wish with a clear hearted soul and once wish is made- the forces of universe starts to conspire to make those wishes come true. You have made a wish, your readers have made a wish and aboveall Soli has made a wish to God. Her fight and keenness to live & through & register a win in these trying moments is what makes it the most profound wish.

I wanna see Soli write her blog one day sometime in near future is my wish....
Take care
Best
Alok- Reveda's father

Reveda said...

Soli and her fight-

My post today-

http://reveda.blogspot.com/2009/01/soli-and-her-fight.html

please do visit and leave your prayers

Amy said...

Dani,

I'm SOOOO glad that you like everything and I can't wait to see her with her blankie and some of her hats, etc. Continued prayers going out for you and your sweet girl! :)

Reveda said...

How is Soli now?