Friday, August 20, 2010

A spewing of information

Time here in the hospital seems to really drag, but then once you know it, another day is done and I am falling into bed in exhaustion. There is so much I have wanted to blog about, but being with Joshua and catching up on sleep has taken it's priority over blogging.

I'm going to try to write as much as I can about what we have experienced. I want not only to record it all for myself, but I know there are quite a few of you mommies who are getting ready to walk this road in just a few short weeks who would probably like to hear my perspective of things. I also know there are so many real life friends who read this who desperately want to know and understand what we are going through so they know how to pray or how to help.

Me: (I'll talk about my thoughts first...this is my blog after all! ha!)

I'm holding up surprisingly well. I've have a few minor breakdowns, but nothing major. I'm surprised at how much at peace I am about everything. I've not sweated the small stuff, I've not snapped at my husband (other than trying to convince him that he's not getting sick because he has a "tickle" in his throat), and I've truly given Joshua's life over to Jesus. I thought I would have been a weepy mess through all of this and I really have not cried except for a few times. The hardest parts for me where saying goodbye to him in the OR waiting room right before surgery, and explaining to Caleb why he coudln't see his "wittle brudder."

I can't even begin to describe the helplessness that I felt saying goodbye to Joshua before surgery. That is something that I have never truly felt until that moment. Literally, all I could do was tell him that I love him, and tell him that God loves him even more than I do. I told him to fight, but that if he didn't have it in him, that it was ok to go to the loving arms of Jesus- that we would be alright and would one day see him again. It was a sense of helplessness in it's truest form.

Right now, I am at peace. My heart aches when they tell me that he is doing "ok, not great, but not terrible either." I want so badly for him to be doing "great" but I also want him to go at his own pace and do what is best for him. I don't want him to fly through this recovery only to end up back where we are now becuase he moved too quickly. Everytime the monitor beeps, I instantly say a quick silent prayer and ask Jesus to hold him. Everytime I feel his cold hands and feet, I ask God to be near him. My day revolves around silent small prayers and deep breathes of surrender.

It's hard not being able to care for Joshua. I sit by his bedside, and touch his feet and his head, and that's all I can do. There isn't much else. He doesn't need diaper changes because of his cath, I can't hold him and rock him, I can't feed him. The only thing that makes me feel like I'm mothering him, is pumping (which is going great.) The only thing I can do for him right now is continue to take care of myself, and continue to pump milk for him. Truly helpless again.

Joshua: is doing well. Like I said earlier he is not doing "great" but he is doing "ok"  They have chosen to wait a few days to close his chest (He currently has what looks like saran wrap over his chest to keep it from getting infected, and keeps foreign objects and particles out of his chest cavity). His heart rate is in the high 190's which is really high, and his blood pressure is a little bit low. He's draining fluid well, and we are waiting for his kidneys to kick in completely. He is swollen, his arms and legs are cold because there isn't much circulation to them right now. He's been opening one eye, and he is responding slightly to our voices. His temperature is good, and he is still on the vent to help him breathe. They are adding another medicine to help try to get his blood pressure up a bit, and they are trying to drop a few medications a bit lower. He is currently on 4 total IV medications and 2 drugs to keep lines open, an antibiotic,  and "sugar water" to keep his sugar up and keep him hydrated.

Peyton Manning Children's Hopsital: This place is amazing. The nurses have all be great, the facilities are amazing, the doctors are highly skilled, and everyone has been super helpful in getting us what we need. For it being such a stressful time, we really have not had much stress in regards to needing anything. Anything we need, they help us get. The nurses that we've had so far have been wonderful, they laugh with us (or at us) and they make sure that we are taking care of ourselves. We've not had a single bad experience yet.

Caleb: I'll start this one off with a few Caleb-isms (I know how you've missed them.)

When walking back to the PICU after surgery, we walked down a few hallways with patient rooms. Caleb peeked inside one of the rooms and saw a man laying in his bed- he must have been asleep. Caleb very loudly said "DAD!!!!! That man in his bed....he was DEAD!!!!!" We were only about 2 feet from the man's doorway! We cracked up!

While we were at the women's hospital, and my parents were getting ready to take Caleb and Hannah back to their hotel, Caleb says "Just a minute. We can leave after I empty out!" He had to go pee. haha!

Shane: is doing alright. He has himself convinced that he is sick because of a "tickle" in his throat. He's gone out and bought all sorts of vitamins and crap to "fight off" whatever he has. I've not once heard himself cough, sniffle, or sneeze, so I'm trying to convince him that he's not sick and that the "tickle" is from the dry air of the hospital. He's about to drive me crazy with his "tickle."

He's been great advocating for Joshua and making sure to ask about what he doesn't understand. He brings a great sense of humor to the room and makes sure the mood stays light. He's such a great daddy.

Hannah: She's still just sweet as can be. She was able to see Joshua the night before surgery and she didn't really react. She's still too young to fully understand what is going on. However, when I went back to the waiting room with her, she looked at me and said "Baby Joshua no clothes on. He wear diaper and he TOOT!" While the kids were in here Joshua let out a big toot and Caleb and Hannah just thought it was the funniest thing.

I will be posting some more pictures later today. I really want you guys to see how he was transported from the NICU to the PICU. He looked so cute snuggled up in his little incubator box all strapped in. I also have a ton of just really cute pictures from presurgery of me holding him for the first time, daddy holding him, and other random things that I haven't gotten a chance to post about yet. I'm trying my hardest to record it all, but like I said, hospital time is much different than "outside world" time and it seems to get away from you quickly!


kirsten michelle said...

Love you, Jill!!

I'm so glad you're all doing as well as you are. I hope and pray baby Joshua continues to recover at his own pace and that your experience there continues to be positive. I pray hard for baby Joshua every morning & throughout the day.

Knowing James & I are about to go through this ourselves, I really appreciate this update -- knowing what you're feeling and what your experience is.

Hugs to you all!!

lmpd0617 said...

I can only offer you what I know from Olivia's experience post-Norwood, so please take what you will and hopefully it brings you some comfort. She too had her chest open post-op, at Hope with Dr. Ilbawi he leaves them open until they have purged off enough fluid to close them up rather than put the extra stress on their lungs and chest cavity by closing immediately after surgery.
Her chest was open approximately one week post-op and when they did choose to close her up, she didn't respond so well. As the fluid retention was the issue for not closing their chests, she actually peed out too much fluid and then didn't have enough to keep her bp to a stable level. So after the closure she had to get pumped full of fluids to blow up like a michelin man and pee them off all over. Scary because BP and HR were all over the place - but manageable.
As for pumps/meds - she had 12 or 13 at her worst (post chest closure) and they quickly went down from there. She had issues with BP and HR but they were managed with Sidenafil up until we were home for a few weeks and then they were discontinued because she didn't need them any longer. :)
While I understand wanting to hear that Joshua is doing great - think of it this way, you are now past the first 24 hours post-op and those are the most crucial with each procedure.
Heart Hugs!

Anonymous said...

Jill, relax. Just take a deep breath. EVERYTHING you are feeling is completely normal for the situation you are going through. Unfortunately, nothing any of us said could actually prepare you for this journey. It is something that you have to experience to understand. No matter how many times other heart parents chimed in to give tips, tell their heart stories, or just to let you know we were thinking of you - nothing can prepare you for that walk. One day, perhaps soon, you will be talking to another heart mommy who is about to take that journey. You will be both happy and sad all at once. Happy because you can help by telling them what worked for you and sad because you know what they will soon experience.

Joshua is blessed to have done so well. Cheer the small steps.

The best tip I received when we left the hospital was about all the medication we were going home on. I was a nervous wreck thinking I was going to somehow screw one up and it would harm her. A fellow heart mommy who was on her 4th surgery told me "get baggies. Label one AM and one PM (or whatever time you need to) draw up the meds in the syringes the night before - have someone double check. Then put them back in the fridge or high up so other little hands cant reach them." This made medication time in my house so much less stressful. They have these little blue rubber like stoppers you put on the open end of the syringe so nothing leaks out. Worked well for us.

Just thought I would share a tip that was so helpful to us. If it works for you - great, if not that is ok as well. You have to kinda feel your own way along the path.

Shannon Egan

Amy said...

I think like reading the comments of other heart Mommies as much as I like reading your updates. People are constantly saying that there will be forward steps and backward steps. So the fact that Joshua is doing "okay but not great" hopefully isn't quite as scary. From everything you've posted, it doesn't sound like the doctors are concerned, even if they are cautious. And Lisa brings up a good point: you're past the first 24 hours! YAY for small victories! You're on my mind and heart <3

leah said...

Jill - Thank you so much for sharing. And God love Caleb, he keeps it real lol. Love to you and Shane (take care of that tickle).

Molly Alisa Photography said...

Still reading, and praying. Your family is in my thoughts all day, and I pray for you when I wake at night.

I can't wait to see more photos.

Thank you for keeping us updated. Love you.

The Cox Family said...

Tell Shane that I ALWAYS get the "tickle" when I work. I think it's because it's cold in the hospital and the carpet and other stuff messes with my allergies. I worked the last two nights and my ears are itching today!

You guys are doing awesome and so is Joshua! I'm so proud of you. Love you guys!

BlessedMommy said...

Jill, our prayers remain with you! I can't thank you enough for taking time to let us soon-to-be heart mommies know how things are going for you, your emotions, and Joshua!

Thank You!
Mason's Mom

Amy Bennett said...

Jill, I've been reading your posts religiously, but haven't had a chance to respond just yet (and don't worry, before you know it, you'll be home too busy taking care of Joshua to reply to blog posts, too!). First off, congratulations - he is BEAUTIFUL! Second, take a deep breath. Other heart moms will tell you to get ready for a roller coaster, but you don't really get it until you're living through it. Bodie had a really hard time post Norwood. I want to say his chest was open maybe 3 days before they closed it. The evening after surgery (surgery was in the morning), he started desatting and they couldn't figure out why. They finally had to take off the "saran wrap". They decided it was putting too much pressure on the heart, so they put a little piece of plastic (it sounds like they just used something they had lying around, but I'm sure it was something slightly more sterile than that!) between the mesh and the heart to give it some space. And they had to give him a paralytic. Then, the day they closed him, he desatted again and they ended up having to pump him full of fluids and use a paralytic again. Both times were scary, but he pulled through. And so will Joshua. Just hang in there - there will be lots of ups and downs in the coming weeks and months. I finally learned to embrace the ups, because there truly no way to avoid the sadness of the downs. And trust in God, the ultimate physician, who has your sweet son's tiny heart in his hands.

Stay strong, keep pumping and hang in there mama! You can do this!!!

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