Shane and I are simply amazed at how well Joshua has done in general. No vent from birth, no ECMO, no major complications. It feels like we are living in a dream, but then I hear that small quiet whisper that Shane and I have been hearing from the beginning. "I will not take this from you, but it will be managable." God's promise to us from the very beginning.
I wanted to share some pictures from today with you. I will warn you, the first few are just him presurgery looking cozy and sweet as can be. The last few will be a bit graphic, so if you don't want to see him hooked up to tubes, swollen, with his chest open, you may not want to look. I debated about posting the last pictures. I don't want them to be too graphic but I do want you all to see what sweet Joshua has been through today. This surgery was not an easy thing for him to go through, and it's not going to be an easy recovery for him. I want you to fully understand how serious and life threatening this really is. I also want you to see how strong and what a fighting spirit Joshua has. We are just amazed at God's provision over the doctors, nurses, and Joshua's life.
Joshua was nice and cozy when we arrived at the PICU this morning!
Below is the PICU before surgery.
Joshua is snuggled under his blanket in there!
Below is Joshua's room after the surgery.
These next few pictures are of Joshua after surgery.
Be warned, he is swollen, hooked up to tubes and his chest is open.
15 comments:
Jill and Shane, I want you to know that I put Joshua and all of you today on Our Sunday Visitor's prayer list. I had done the same thing on Monday. Lots of people praying for him and you. Love you guys!
Thank you for sharing! This might be a crazy question, just trying to understand, how do they keep him from getting an infection or something with his chest open? I understand why they're waiting to close it, but do they have to do anything special to make sure he doesn't get something in there that's not supposed to be?
I'm so thrilled that he's doing great! I also sent around an email to the teachers and staff I work with to ask them to pray for you all.
You said you debated posting the last few pictures of Joshua but I am glad that you did. It makes the whole situation all the more real. I'm not going to lie, I have definitely felt the Holy Spirit working through this entire situation and it has moved me to tears many times in the past few days. I'm praying for you guys on a very frequent basis during the day. Joshua is proving to be a source of strength through all of this! :) Stay strong, little guy! We're all pulling for you! You are already doing awesome!
Jil - he looks amazing. I hope that the next 24-48 hours continue to go as well as surgery did today. Remember the shuffle....tiny baby steps and sometimes you take one backward. However, Joshua has already shown you how strong he is!
A amazing thing will happen in the next few days...one by one, all those tubes and wires will slowly go away (ok honestly most of them but not all of them) They will pull the vent once he is breathing over/thru it, the chest tube will come out when it stops draining and the RV lines and pacer wires will also come out. And his "tower of power" (the iv pole with all his meds attached) will slowly start to shrink when he is able to come off some meds.
May God continue to rain down His love and mercy upon your family. I hope your other precious children are holding up ok (This is not just Joshua going through this - it is the whole family as well) I know how hard it is to miss your other child(ren) as you sit beside the bed of your sick one.
Shannon Egan
ps - Jamie: Sounds strange to keep their chest open after surgery but it is due to swelling issues. Not sure the technical name but I called it "saranwrap"
Jill, I'm not sure if you remember me from the Xanga days, but I'm an IRL friend of Molly's. I wanted you to know that I've subscribed to your RSS feed so I could stay up to date on your little guy and pray for him.
Jill, thank you for posting this. I don't know if you encountered the same thing when you found out about Joshua's heart, but in the name of being hopeful and encouraging, some people act like an infant going through open-heart surgery isn't that big a deal (I heard: So they'll just fix him up, you wait a couple weeks and take him home!). These photos belie that assumption.
It helps James & I know what to expect, to know what we'll see. It helps us to pray for you and Shane and Joshua to know exactly what you're going through. Blessings to you all, and much love.
Brings back so many memories all at once, you never forget them. Joshua is a true champion - continuing to pray for you all!
even swollen, he is so beautiful. he reminds me so much of those early days with Blake. i pray all goes perfectly well. here is a prayer for him. you guys have weighed heavy on my soul today...
Dear Father,
Please hold Joshua in your hands. Whisper in his ears your comfort and your encouragement. If you can encourage your own son on the cross, you can encourage and show love to this sweet son as he fights to have a long, healthy life with his family. Lord, I pray you be with him and his family. I pray that you lay your hands on the doctors and nurses...having them fine-tuned to the needs and changes in Joshua. Hold him at all times because his parents are not allowed to hold him right now. Keep your touch with him so that he comes out of this without sensory issues or issues with being held and loved on. Let him know love now in an extra special way. Help the doctors to manage his pain without addiction. Ease his mind to fight anxiety. Lord, please protect him from infection. As you know, it's often the little things, not the big things, that make their lives so threatened. I pray that the mothers, grandmothers, sisters, brothers, friends, etc surrounding this family fully understand all that is going on. I pray they always "go with the flow" as this is not easy for anyone in a family. There will be extreme isolation that no one should take personally. It's a matter of life and death...it's a matter of risking a cold or avoiding a hospital stay. I pray that everyone will understand that there are really hardly any visitors allowed...for a very long time...and it's nothing personal. I pray against vocal cord paralysis from intubation...I pray for easy weans from the vent...I pray for quick recoveries without the need of too much oxygen so he can get as much time at home as possible in between surgeries....I pray for Your strength to be granted to these parents and this child....I pray so many things...so many details I could go on and on....Lord, let the holy spirit in me intercede and come to your thrown with all the specific prayers for this child. Let him come home without feeding tubes or nissens...let him lack sensory issues so he may just eat and not have complications from feeding issues. So much Lord, so much on my heart and in my soul for this family. Lord, may everything I didn't know about my child that I wish I had taken seriously or understood better that this family would understand. As they have, he has been lain at your feet to take care of. He is desired and loved by his parents. They want to fight for him and raise him. May they have a little boy that is strong and cognitively 100% okay through the entire process.
With all my heart, with all my soul...In Christ's name, I pray you answer in agreement with this family for Joshua. I pray all of these requests in Your Name and in Your Son's Name, Amen
Jill, I am also thankful for your openness and honesty. I knew that you would tell/show it like it is and it helps me to prepare for next month when my baby goes through the same thing, and also to pray even more fervently for your precious son's recovery. He looks very peaceful. Sending lots of strength and love~
One thing that most people do not understand about CHD is these kid's hearts are NEVER "fixed" they may be repaired, but they will NEVER have a normal functioning heart. Some chds require lifelong openheart surgery. Our daughter will have to continue to have them throughout her life. So, there is no "magical cure" where the dr waves some wand over them and they are free of chd. Once they have it - they have it for life.
Sorry, this is a big nerve bender for me. People will look at my daughter and say "oh, she is fine - she has been fixed" brings out the mama bear in me.
Shannon Egan
PS - Jill, check with your doctor - they should have a sign that you can put on Joshua's carrier that is shaped like a stop sign. It says "Please wash your hands before touching mine" we had to CONSTANTLY keep people from touching our daughter. Not that we took her out alot but this was usually at her dr appts! I know babies are like magnets to some people.
Thank you for the update. Like some of the other commenters, I feel so many memories come back of our daughter's surgeries! It sounds like he is progressing nicely, and I hope you and your husband are getting some rest and feeling the peace that passes all understanding. Our daughter was older, 3 for her 1st and 9 for her 2nd, so I don't know what all needs to be done for an infant after surgery (like our daughter had to get up and walk 2 days after surgery!!) but I will continue to pray he recovers and heals just like the doctors want him to.
I'm so glad things are going well. I hope you can escape the PICU dance as the nurses like to call it. It's the one step forward and two steps back these critical babies make. I don't know how your hospital works but ours always has an ECMO machine primed and ready to go when they have a Norwood baby fresh from surgery. It saved my daughter's life. We continue to pray for your family. ~Crystal in IL
The memories come flooding back anytime I see pictures of little ones all swollen, chest-opened, and on all those machines. I sit here crying as I remember it all...and I had to grab up Hope and give her a big hug and kiss. I know she looked the same not so long ago, but it is powerfully emotional.
You all remain in my thoughts and prayers as you move through this journey and get to go home as a family.
Jill, he looks great! I worked the last two nights so as I was about to give change of shift report yesterday morning I noticed it was 7am your time. So I started praying for you guys, and before I went to bed I prayed. I woke up to find that his surgery had gone well! God is amazing! Hope he had a good night last night!
I am glad you posted all pictures, both cozy and scary. All us heart mommies (or soon to be heart mommy like me) truly appreciate no sugar-coating!
I am praying for Joshua every day!!!
Neysa (Mason's Mom)
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