How about at yesterday....yesterday we were planning on going home in about a week. Yesterday we were planning on getting a g-tube today. Yesterday we were able to hold sweet Joshua. Yesterday he would make eye contact and was on his last wean of methadone.
Today....
Today he crashed. His heart rate went down to 32. Today I held a blue, unresponsive baby in my arms and panicked. Today any hope of coming home in the next week was taken from me. Today I watched my baby be poked 18 times in hopes of finding a vein that was strong enough for an IV. Today my baby was put back on heavy duty drugs to keep him from pulling the vent out of his mouth.
I am no longer going to say that I am ok. I'm not. I'm grieving all of the progress we've made, and the hopes of going home to my family again. I'm beyond stressed about how we are going to pay for another month or two of kids in full time childcare when I'm not working. I'm feeling helpless, hopeless, and depressed. I feel like I don't have an ounce of energy left in me to take things even minute by minute. I feel like I'm a walking zombie- every ounce of energy, sanity, and hope sucked from me. I've got nothing left to even think.
We are looking at at least another months stay here. We are looking at another withdrawl time. We are looking at the possiblity of another open heart surgery in the next few weeks. We are literally looking at our baby, laying lifeless and hooked up to the very machines that have given me anxiety over the past few weeks of being here. I have another picture of my child etched in my mind that is surely going to haunt my dreams- this time was 10x's worse than the last.
There is so much that I want/need to tell you about today, but just don't have the energy to type out. Just know that things were so bad, that we were told on 2 seperate occasions that by 2 seperate doctors that they have no idea how our child is still alive.
Right now we are going to try to extubate him tomorrow. We will see how he does. We will have blood tests back over the next 24 to 48 hours to see if there is any kind of infection. If there is no infection, the doctors have NO IDEA what caused him to crash and to do so as quickly as he did.
The surgeon and cariologist came to talk to us. They are concerned that Joshua's O2 sats have been too high. After things become more stable, we will look at the possiblity of a shunt revision (he has the largest size shunt in his heart, and they are thinking he needs a size smaller- which they initially tried in the OR but weren't satisfied with the smaller one.) Another option is the possibility of doing the 2nd stage surgery, the Glenn, when he's 2 or 2 1/2 months old instead of at 6 months old. IF we are going to be here another month or two I could at least be ok if I knew that we didn't have to come back in February for his 2nd surgery.
Tonight, I'm numb. I'm exhausted, frustrated, and grieving. I'm on the verge of tears constantly, and I'm crying out to God.
I'm also so so so thankful for your prayers. I know for a fact that is why Joshua is still alive. Jesus has been holding him. Thank you for rallying around us and loving us and supporting us. I am drawing on your words of encouragement, prayers, and messages for my strength.
I will update tomorrow as soon as I can.
32 comments:
Oh Jill, my heart is broken for you! I am lifting all of you up to the Lord - especially Baby Joshua. As you said, Jesus has Joshua in His strong arms.
Big heart hugs,
Pam
Jill,
I wish I had something inspirational to say to you in your time of need, but I don't. I cannot imagine what you went through in the last 24 hours but we are here and praying for you and of course Joshua. He's a fighter and he continues to show that over and over again. I hope that you find some peace tonight.
Hugs,
Lisa
I'm so sorry Jill. I wish that I lived closer to you so that I could offer my help with your children or something or just to come sit with you even! If nothing else, at least know that you all are DEFINITELY in my prayers.
I wish there was something I could write that would make the last 24 hours bearable, but I know there is nothing. I am so sorry you had to go through so much and wish Joshua didn't have to go through it either. I will be saying extra prayers for Joshua and your family.
There are no words to take away the pain you're feeling, the images of Joshua etched in your memory, or the broken dreams of bringing him home sooner rather than later. But please know you and Joshua are covered in prayer all across the nation and/or world! I know how disappointing a setback can be when you have a different image in your head of how things should go. Chase was recovering nicely from his Norwood when they took him to the OR for a "quick & simple" bronchoscopy, after which he crashed and they had to reintubate him, do chest compressions, etc. It was devastating to say the very least! But God was holding our sweet boy at that difficult time just as He is holding your precious Joshua.
The words that keep spinning through my head to share with you are actually from the chorus of a song I wrote for Chase. I hope they bring you some level of comfort:
"And God said,
Rest in Me, Trust in Me,
For I know the plans I have for you, My child.
My peace I bring, in the midst of the storm;
You'll find hope, in My promise of peace."
God bless you, sweet heart mama. Please don't hesitate to contact me if you need to talk or vent with someone who understands exactly what you're going through. Heart hugs to you and all of your family!!!
Jill, your blog updates and FB statuses always come to my Blackberry. I don't know how I did not know about this sooner. Please know that I will be praying for your family and baby Joshua. I have also updated the CBFM page and asked for all to join me in prayer for your family. This is a hard knock. Just know, that GOD is BIG ENOUGH. God is big enough for everything that you need. He just is big enough.
Love ya'll and we will be praying.
Stephanie
Oh Jill I'm so sorry. I've been in your shoes. When Bodie was 2 months old, going back into the OR for a shunt revision and pacemaker. He coded twice that day. When they were talking about doing his Glenn early because he was just so weak he wouldn't last until 6 months. When we almost lost him a third time while I was in the room. When they told us he wouldn't go home before the Glenn and if he did make it to the Glenn, it wouldn't make him that strong. When he crashed again and we realized it was MRSA in his blood and we would be in the hospital at least 6 weeks longer on IV antibiotics. So I KNOW how you're feeling. We too were told by doctors that they no idea why Bodie is still alive.
But look at Bodie now. He DID make it home before his Glenn. He spent 2 whole beautiful months at home. And he flew through his Glenn and was home 5 days later. So...HAVE HOPE. These cardiac kids go downhill fast, but when they figure out what's wrong, they turn around fast, too. HAVE FAITH - God has big plans for your Joshua. And we will be praying for all of you right now.
All I can say Jill is cry out to Jesus. How well do I know the feelings of hopelessness, helplessness, of just praying on my knees for one more minute. Know that miracles happen every single moment. Joshua is proof of that. Cling to that in your time of need. My heart aches for what you and your family are going thru.
Shannon Egan
Jill, oh, I can't even begin to imagine. Even though I have my own "HLHS stories"....yours just breaks my heart. I just ache for you. And at the same time, I so admire you. You were made FEISTY for a reason. Your fire shows through even when you are down. You've got this. It's day to day, hour to hour, minute by minute...I realize...but you have this. Don't lose hope. Your faith will bring you through. I'm not telling you anything you don't already know, but I know it's good to sometimes be reminded. Hang in there doll. Someday you will look back on all this and just be purely amazed. As for the Post Traumatic Stress....yes, that is very real. I am certain my husband and I have both dealt with it after our fighting for Blake's life and then the loss of Tristan's. It will pass. Your older children will be your greatest therapy. If you need to cry to another HLHS mom, my number is 540-810-0489.
With love and compassion,
Christie
I'm so sorry to hear that sweet Joshua has had such a difficult past few days. We're continuing to pray for you and for Joshua and sending some strength for the next few days as well.
my number didn't post...hmmm...catch me on FB and I'll send it to you there.
I am under Christie Hammond Huggins on FB.
Jill, God is hearing you! I am sending so many prayers your way. You are not alone and have an army of people praying for Joshua. You are entitled to every emotion you feel right now and I just want you to know I'm thinking about you guys constantly!
Neysa (Mason's mom)
oh, i know exactly how you're feeling today. i've been there sooooo many times with asher. :'( the only thing that got asher and me through was/is God. when asher was going through one of the scariest time of his life (HR of 27, BP was super low and he had all the worst signs of failure, then his pacemaker site got infected post-op), i looked back over asher's life, and recalled all the miracles God has worked over the last 3+ years. it gave me the courage to look around. don't even try to look ahead, because you don't know... but God knows. rest in His love, and look for the little miracles happening all around you. meanwhile, i'll be praying for you both. <3 you are Loved, and so is Joshua. <3
We are holding you close in prayer. I simply have no words.
Joshua feels your love. :-)
I am another heart mom who you do not know (I found your blog from Adventures from a Funky Heart), but know that I am thinking and praying for Joshua and your family. I pray for the strength to get you through this.
My heart hurts so much for you and your family.
Jill I wish there was more I could say or do other than just pray.
I want to help. I wish I could take away some of your stress for you.
Love and Prayers!! Chrissy
I'm so sorry to hear about the recent developments...you and your family are in my prayers.
Not even knowing you personally my heart aches for you. Prayers for a better tomorrow, and more answers. Prayers that Joshua keeps up his fight!
Hang in there Jill. Our son had the Glenn at 11 or 12 weeks, I think the youngest at his hospital. We spent Easter weekend in the hospital (the first of many)
If you haven't yet, ask the hospital social worker to help you fill the gap for childcare.
One day at a time, there are many battles ahead, but you have to win this one.
Our prayers are with you and Josh. I'm all teary eyed thinking "it's not fair!" It's never fair. Owen had his Glenn just shy of 3 months and I can't tell you the stress that took off of us. Not worrying about a tiny shunt and all the things that could go wrong because of it was a blessing.
Josh is amazing to pull through two crashes and it's he's definetly got someone looking out for him!! Prayers and hugs!!!
I came to your site through Steve at Funky heart. Your post could have been me about 6 years ago. My Jillian had her first surgery at 6 days old, continually de-sated and it was determined that her shunt was too big. She lived at the hospital for three months until the surgeon felt she was big enough for the Glen. We lived two hours away from the hospital and had two daughters at home. My husband and I traded off every few days so that one of us could be home with the older girls and get a break from the hospital. It about did us in. Jillian was so sick and we almost lost her. She came home 7 days after her glen - the shunt that was too big just made her so sick - as soon as the did the Glen she thrived.
I hope that things start getting better for your baby and that you can hold on to some hope that he will get better. I will send good thoughts your way.
Dina
I am so sorry that this is happening to Joshua and to your family. You are in my thoughts and prayers.
Jill,
I am heartbroken for you. I wish that I could make it all better and ease the pain you are feeling right now seeing Joshua hooked up to the vent again and fighting for his life. All I can do is cover you and Joshua in prayer. I know that our God is a merciful God and He is holding all of you right now.
It's OK to break if you need to Jill. No one expects you to be super woman or this brave non emotional Mommy. You LOVE Joshua and you love your other kids. You are up against what seems like this impossible mountain to climb. It is understandable that you have reached your limit right now. Allow us to carry some of that burden for you. Let it out so we know how to pray for you and your family.
Hang in there Jill. There's still some fight in that beautiful boy!! There is ALWAYS hope!! Remember that!
Keep Fierce, keep fiesty and Keep Strong because LOVE is our strongest suit, and your suit is bullet proof.
you really ought to pray about & look in to putting a ChipIn button on your blog. i know you're not looking for "handouts" but this would give people a secure way to donate whatever they can to help out with your expenses while you're dealing with all of this. i know if there was a button on your blog, i'd be able to donate like $20 at least, and a little here & a little there adds up. maybe not much, but even if it's just covering a tank of gas or a few meals... that's a tank of gas or a few meals you don't have to worry about.
Jill, we don't know each other, but I have a daughter with HLHS. She is 21 months now, but sure had so many challenges with each surgery. She was in the hospital 2 months post Norwood and 5 weeks post Glenn. I can so relate to how you feel tonight. We did not know if our little Grace would be coming home with us. But we prayed and we had many people praying along with us. There is so much power in prayer. And so we pray with you...for you. We will continue to follow Joshua's journey and keep him in prayer. God bless you! Sherry (www.heartofgrace.net)
I don't know what to say. Just praying and loving you.
I am praying for God to hold you and support you and give you peace. This CHD journey is a struggle sometimes (okay, a lot of the times!) but God does perform miracles. Ava had 3 open-heart surgeries in 3 months (2 of them jsut weeks apart) and had a too-big shunt. She didn't get her Glenn until age 5. The too-big shunt ended up being a blessing in sustaining her for five years although in the earliest months it darn near killed her.
Stay strong, keep leaning on God, know that you have prayer warriors pleading on your behalf. I hope you, and Joshua, have a better day today.
melissa
Oh Jill. I have been sharing your story everywhere, and asking for prayers. I am praying myself. I am so thankful Joshua is still with us.
I think about your family so often. Sometimes I cry and sometimes I smile. I always wish there were more I could do.
God is so good. I am in awe of the power he is showing through your tiny baby boy.
I love you!!!!
We are praying for all of you.
Jill, I know that you are having a very hard time right now, my husband and I have been praying for your beautiful boy since before he was born. I found your blog through whenlifehandsyouabrokenheart. We have become very attached to your blog and want you to know that it will get better. Our son went through some of the same issues after his partial norwood. We are just sick to hear that someone outt here feels as bad as we did during the 3 months we were in the hospital with Julian. We don't have alot, but I agree with the lady that was talking about donations. I will check on you again tomorrow.
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