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Wednesday, April 11, 2012

Day 16 in the PICU

Pin It Monday Bryan was with Ivy in the room and I ran the kids to school and took Lexi to dance. My niece is here for a few days and was dying to see Ivy (and mommy was already missing her terribly) So after dance we headed right over to the hospital. 

Lexi had fallen asleep on the way over so I sent Rylee and my Niece Michaela in first. A few minutes later when I entered the room I began talking while I washed my hands and my baby girl who was very much still asleep and out of it, opens her eyes WIDE!!! She heard her mama and there was no mistaking she knew who I was. 

God knew I would need that to get me through what lay ahead for the day. As I walked over to her bed (She is in a new room now, they moved her because she and the girl next door are pretty critical cases and having them right next door to each other makes nurse pairing for breaks and such, very difficult)

I immediately noticed that most of her lines and cords were coming from the left side of the bed. She always has bundles of things coming from both sides but it was very open looking (maybe 4 or 5 things) on the right side. I had this overwhelming desire to figure out how to scoop her up. I wedged my way in and easily cradled her in my arms. I was standing and holding my sweet little hero! 

Her machines started beeping, her blood pressure rose, but she was completely relaxed and gave me another much needed confirmation that she knew who I was. It's tough not to wonder a little... after all she was only home 4 weeks before the hospital stay that is now up to 2 weeks and 2 days. If we have to start over with our attachment and bonding then we have no problem with that, but being able to just pick up where we left off would sure be a giant gift!!!!!

It was only about an hour later that she began showing signs of distress and very quickly she was hooked back up to the cpap machine and mask. 

By late afternoon they felt she was working way too hard and they immediately put her back on the ventilator. 

Sadness to my heart, you know, thats 3 steps back... but what she needed at this time.

By the evening I became a bit.... frustrated by the fact that they know her diaphragm is the cause of all this trouble her lungs are having so really why on earth are they waiting to see if it will fix itself? I said it last week when they re-intubated and I will say it again, she needs a pacemaker, she already had the ventilator in and was ready to go... why do they keep waiting to fix this? Im not a doctor, I'm just mom so I wait and wonder. We did finally hear this morning that the diaphragm nick is actually a severed nerve. Ivy's diaphragm is paralyzed, it's no wonder her lung is unable to function and remains collapsed.

The diaphragm is the most important respiratory muscle. During repirapiration, the diaphragm contracts and moves  in a pistonlike fashion. This motion forces the abdominal contents down and forward, increasing the vertical dimension of the chest cavity. In addition, the ribs lift the lateral aspect of the diaphragm during inspiration, causing the transverse diameter of the thorax to increase. As the diaphragm contracts, pleural pressure decreases, facilitating lung inflation. Normal diaphragmatic function accounts for 75% of air movement during normal respiration and is responsible for 60% of minute volume in the supine position. 

They would have done emergency surgery last night but she had been fed via the NG tube so it left us waiting with hope that they could squeeze her in today. 

This morning when I walked in the nurses told me that she was mad. Mad? They said she was kicking her legs and seemed agitated. I walked up to her and said her name and her eyes POPPED OPEN! She was way way down on her meds and it was obvious. She looked at me with more focus and she reached for her breathing tube with both hands in splints and no use of her fingers and she looked at me and shook her head NO. Bottom lip flipped and yes, mine flipped too! She was pleading for me to get that discomfort out of her throat. She settled right down when I lay my head on her bed close to her face giving her lots of mommy kisses and wispering in her ear. I told her all about how much of a hero she was to me and how we have never left her side and how we never ever will. I told her that she had new bunnies and chocolate and jammies and books and and toys and cards and stuffed animals waiting for her when she woke up. I told her that I loved her a hundred times and the nurses called the nurses who called the nurses to see how this baby in room 5-101 had gone in to a complete state of calm serenity when her mommy came in and comforted her. I asked the nurses to keep her sedatives far away and to let me do the calming from here out. They agreed that that was certainly best for Ivy.

But as usual things never remain the same for long in Ivy's room... it's the room of miracles and the room of constant events.

She was sound asleep for about and hour, or as sound as one could get with every machine in the room always beeping and the alarm of the respiratory machine (so loud!!) sounding. She started to cough so the nurse started suctioning. 8 syringes later she felt something was wrong. Cloudy white junk was filling her syringe. She called for emergency assistance, before I knew it their were 3 doctors and 6 nurses in the room and it was growing to many more. They felt she may have coughed up her tube or it was clogged with those secretions. Her sats all dropped so low that the doctor didn't want to wait to find out. They ex tubated and re intubated. She is supposed to have surgery around 3pm to place the pacemaker and plicate the diaphragm. With blood stained lips and ice cold legs, hands and feet, wrapped in her blankies, sarebear by her side, eyes open but in a complete daze, she continues to have the comfort of the one who created her, holding her in the palm of his hands, getting her through each and every hard step she takes and reminding us to be still and just know!!

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Suzanne said...

Just wanted you to know that I'm praying for your sweet family. Found your blog through Catherine's Chatter- I'm in South Carolina.

Paige said...

Mary, I know this has to be excruciating for you and your family to watch your sweet baby go through this. God knows exactly what is happening and will continue to pull her through. I have been praying for her all morning not knowing what was going on, so know that God is calling a lot of people to pray even though we may not know the details. I will be praying specifically for her surgery this afternoon and for God's guidance of the surgeon's hands and wise decisions. May God give you peace sweet Mommy!!

Anonymous said...

Wow !! was getting worried with no updating!! God ,Bless this precious baby girl loved by you most of all and so very many of us here on earth. Guide her doctors to do the best for this sweet one. Be with this little ones family , keep them all close to you and keep your loving arms around them all. We praise you Wonderful Father for creating all of us ! Most of all, watch over this baby Ivy Joy and keep your loving arms gently around her and let her know that she is so LOVED! Blessings and prayers, Cathy in Illinois

Mary and John said...

will be praying for Ivy, especially today, hoping for miraculous repair of the diaphragm during surgery. How my heart continues to ache to hear of all you and Ivy are going through. Will have Ivy added to our church prayer sheet tonight. Ps 139 - He hems you in from behind and in front and covers you with His hand. Stand strong in His mercy and grace alone! Mary in Iowa

Michelle P. said...

Hi, Mary. I have been following your blog after hearing about Ivy Joy on "First a Pearl Then a Ruby".

I just wanted you to know that we have been praying for your littlest one and for your entire family. The Lord has placed you all on our hearts and we continue to lift you up to Him in prayer.

Michelle Parker - in Texas

Catherine said...

Oh Mary, Your Ivy is so strong...and so is her Mommy!!!

Praying, praying, praying for all of you!

Anonymous said...

Thank you for posting, Mary. I've been checking for updates and became very worried. I can imagine you are exhausted and posting is not high on the priority list, though. We continue to pray for your beautiful heart baby and send our very best to you.

Antinette Mama to Hadley (here in cloudy Seatttle!)

DiJo said...

OK... I am going to have to put my big girl panties on too... I so badly want to give you a hug, and be there to serve you!!! You are a hero Mary!!!!! That makes two in that tiny room!!!! THANK YOU for posting this update!!!! We will be praying specifically for more miracles!!!!!

We love you over here in MN!!


Carmen said...

Keep leaning on Him and know that there are many praying for your family.

Kristy said...

I'm sobbing my eyes out and praying for your little miracle! Charity has a doctor appointment at the same time so I will have Ivy on my heart. Praying for wisdom for the doctors and continued peace for you. God knew what he was doing when he made you Ivy's mama!! So thankful for the reminders that He has gone before us and prepared the way! Love you!

Brooke said...

First time to comment, but I want you to know that I've been praying for your precious Ivy each. and. every. day! She is AMAZING and God is doing miraculous things through your tiny doll. Thank you for sharing and updating even when I know it must be oh so hard to rehash.

Isaiah 53:5
But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was on him, and by his wounds we are healed.

Praying complete healing for your beautiful Ivy who has clearly brought thousands SO much JOY!!! xoxo! Brooke

sierrasmom said...

I read your Prayer Request at my Women's church group meeting last night. I mentioned how despite all you are wanted to make sure we all thanked the One who loves us most!! I told of Ivy's surgery and your amazing faith. Needless to say there are more women in NY now praying for Ivy!! Praying for healing and for careful guidance of the doctors hands!!!
Kathie in NY

Sandra Church said...

Praying for you and for sweet Ivy. Sandra, mommy to Macy from Hangzhou

Rebekah said...

I am heartbroken for Ivy and all that she is having to endure. So thankful that she has her Mama by her side during this time.
I am continuing to lift up your sweet girl in prayer. Praying that the complications disappear and that her little body is able to start recovering.
Praying for your family, as I am sure this is taking quite a toll on all of you.

Teachn18 said...

Praying, praying, praying!!!!

jennifer said...

Wow...I can't even imagine the emotional roller coaster you are on. I can't even imagine how hard that must be. I am praying for you both. I'm so glad you are posting all of this. It will be so important to be able to go back and see just how far God brings Miss Ivy!


KeithJonesBlog said...

So tough! I am just praying for you guys. I keep praying that God will deliver Ivy through this so amazingly that anyone who says the name Ivy Joy won't be able to finish it without thinking "PRAISE GOD!"

What a blessing that she is part of the Sammons family.

Michele said...

Praying for Ivy and the doctors to make the repairs that they need to in order for her to make a full recovery. May she be resting comfortably in your arms by the time you read this.
All our best,

Anonymous said...

Praying for precious Ivy this afternoon in Georgia!

Teresa said...

Praying that God wraps his arm around your family and precious Ivy and holds you all close!! I'm praising God that they know what the issue has been and they are going to be able to make the repairs that Ivy's little body needs! Then, be ready, because your precious baby girl is going to be more than ready to be getting out of her bed, snuggling with her mama and doing all the things little girls love to do!! Hugs and Prayers from Indiana:)

John G. said...

I was getting worried with no post. Thank you for updating us.

We are praying today for Ivy's surgery. We will keep her in our prayers and on our mind till we hear again.

Prayers and BIG hugs from CT.

Lee and Sarah VanGrunsven said...

She is a little hero, a little fighter Mary! She has gone through so much in such a short amount of time, my heart aches for her...and YOU:(
As always, in our prayers and sending our love!
Lee and Sarah

Lesanne said...

All our thoughts and prayers are with you and your sweet little Ivy,
Leslie and Julianna (age 6; home from Kazakhstan 5 years)
P.S. Julianna told me she's sending Ivy get well hugs.

Jen said...

My girls and I are praying!

dajmommy said...

Continuing to send up prayers for you all. He is truly holding Ivy in the palm of His hands. Don't forget that. Much love from Oregon.

Gale said...

Mary, You and I are not actually friends, but we are sisters in Jesus Christ, and I have been praying daily for you and that sweet baby girl. I am so sorry for all sweet Ivy has endured, and the pain and frustration you have felt as a mom. Please know that everyone who is reading your blog faithfully recognizes the roller coaster effect of this journey. Please know that prayers are uttered in my home many times a day for Ivy. It is also quite sobering to think that had you not adopted her when you did, well, we won't go there. God bless you and give you unbridled strength to advocate for Ivy. Prayers~

Christina said...

Always reading your updates and always praying.

jeanette said...

I check in almost every day..just don't always have time to post...but today wanted to make sure you knew we're praying! Praying the surgery went miraculously and that her diaphragm is fixed and will heal!

Sharon Ankerich said...

I know you just continue to do what you have to do and so thankful to be there doing it! I just want to comfort you in the attachment process~ you are strengthening your attachment every single moment you are there with her~ laying with her, holding her, whispering to her, calming her~ she KNOWS her mama and God is whispering to her as well. He is holding her tight and know you all are never ever far from our prayers. Blessings and love!!!! XOXO

Jo said...

My children will oftentimes come to me with a medical question before consulting a physician. As mothers, I think we have much more common sense about a lot of things. So, when the doctor verifies what you have already been saying, it just reinforces what we always knew; that is, being closer to a situation, most of the time, gives us an edge over what a doctor would "medically" want to do. Praying for your strength, courage, and stamina!

Anonymous said...

That was so touching about you just whispering to her. Oh please make sure to whisper to her about all the people that are praying for her and also think she is a hero! God must have such important plans for Ivy because it is amazing how hard she is fighting! (((hugs))) and prayers.


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