Tuesday, August 17, 2010

Tiny new development

I was up at 3:30 this morning. I couldn't sleep. I tried not to think about going to see Joshua, but it was just too dang hard! I woke shane up and asked him if he would take me down to see him. He gladly (seriously) obliged! (Unfortunately, we are not allowed to hold him. The nurses have told us that the lines in his cord are too fragile and they don't want to risk jiggling them too much. I'm not sure if we will get to hold him before surgery or not.)

When we walked in, the nurse stopped us and told us there has been one tiny little change since we had last been in. They now have him on room air oxygen through his nose. Apparently he had just a few episodes of forgetting to breathe. Nothing major, but enough to make his stats go wild and enough to get him put on oxygen. I asked her if this was any indication that he would need to be intubated before his surgery and she said it very likely could be, but there really is no way of knowing until it starts happening more frequently.

He's also been curled up in a tiny ball since my first visit to the NICU. His feet are cold and somewhat purplish looking. The nurse said that it's normal, and that his core temperature is perfect. She also said that a lot of heart babies keep scrunched up like he is because it keeps the blood pressure up in his chest and head. She's not sure if that's why he's doing it, but that combined with the cold purpleish feet, could very likely be the reason why.

Other than those 2 things, he's doing beautifully. His blood pressure, heart rate, and oxygen saturation is all perfect. He's regulating his temperature on his own and he's not jaundiced. We are praising God for the small things, and trusting that He will continue to have His Hands on Joshua and the doctors and nurses caring for him.

I will continue to keep you updated as time goes on. Thank you so much for your continued prayers. We have a long and hard few days ahead of us.


Anonymous said...

Jill - welcome to the "NICU shuffle" Remember to cheer the small steps. If those doctors are anything like ours were you will come to hear the words "it all depends upon him" everything you speak to them. Everything is up to Joshua (and God) now.

Have you been able to hold him yet?

You are on our prayer list at Church and we continue to pray for you here at our home as well. My 2 & 4 year old children also include "baby Joshwaaah" (as my 2 year old calls him) in their nightly prayers. You have many people lifting your family up in prayer.

Shannon Egan

Hope's Blog said...

No intubation is always a good thing...just remember though that it is more common for them to be intubated than not. Make sure you ask the nurses all the time if you can hold him...sometimes they forget to ask you. Get used to the cold, purplish feet too...they don't seem to go away until after the Glenn.

I am continuing to pray for you, Joshua, and your whole family.

Thank you for the updates.

Carla Sue said...

Still praying and sharing the request with everyone who will listen. I am sure that God is holding Joshua in his hands. We love you and if you need anything, let us know.

Stefenie said...

Needing oxygen and requiring intubation are somewhat normal for new heart babies. Logan had the purplish feet because his O2 sats were low. Pretty common with cyanotic heart defects (blue babies as they are often called).

I know it is hard seeing changes when you just want things to not change yet but hang in there Jill! As the above commenter said welcome to the NICU shuffle. There will be days of going forward and other days of going backward. It happens whether you are in the NICU, PICU or step down units. You will quickly learn that you have to roll with the punches as they come and rejoice in the good that does come your way. Any little victory is a big one with these kiddos.

Always here for you Jill!!

Jenny Lincoln said...

It sounds like he's doing really well. As the other moms have mentioned, I think it is more common than not that oxygen and intubation are needed before surgery.
Keeping you in our thoughts and prayers Jill. I know how isolating this all can feel, but remember you are not alone. There are many of us out there who understand and know what you are going through.
Heart hugs,

Leah said...

For the Mom's that are posting here, thank you! It helps to read your experiences for those of us who haven't gone through something like this.
KUDDO's to all of you and God's Blessings always for you and your families.
Jill and Shane loving you and hoping you are getting lots of chances to hold your littlel miracle. Love to big brother caleb and big sister Hannah!
Prayers still flowing for Joshua and all of you for the days, weeks, months ahead. I'm a text away if you need anything (big or small).

Carolina Carters said...

I remember walking into the PCICU the morning after Derrick was born and seeing him on oxygen. I had been so hopeful and so happy that he was breathing room air after birth, and seeing him with oxygen broke my heart. I sat beside his bed and just cried and cried.

It's devastating to walk in see a change like that when you're not expecting it (especially when you have all of the pregnancy hormones going on!). A lot of HLHS babies don't breathe on their own until after the Norwood; they're intubated pretty much right away. It's a good thing that Joshua is getting this time to practice breathing on his own, even if it is with oxygen, he's still doing it himself. He's strengthening those little lungs and hopefully that will make it easier for him to come off of the vent after surgery. Even if he has to be intubated before surgery, he's had some practice so he'll be a step ahead! :)

Many, many prayers for Joshua, his medical team, and you and your family. I wish there was more to say or do to make things easier, but I'm praying that you can feel the support from all of us and most of all God's arms around you as he holds little Joshua in his hands.

Big heart hugs and prayers,

kirsten michelle said...

Oh Jill, this is all so good to read -- just all the little things that are going well with him. I'm praying for you, baby Joshua, and all your family every day. Many, many prayers for you will continue. You're an awesome mama!! BIG FAT HEART HUGS to you and Shane both!! :o)

Anonymous said...

Hooray for the small things!! They are also big! Praying for all of you!

Erika said...

It sounds like he's doing really well! I'll keep praying that he doesn't have to be intubated and that you'll get to hold him before his surgery! I am sure that has to be one of the hardest parts for you. ((HUGS))

Anonymous said...

Huge hugs and lots of thoughts and prayers, Jill! I have a few friends who gave birth to preemies and even micropreemies, so I've read about the NICU stuff for several years now. I think in the grand scheme of things, everything is going pretty well/normal for you all! I'll keep praying for you all during this journey! Be hopeful, and I hope you get to hold him soon! I agree with the above commenter... ask the nurses as much as you can! Sometimes they get so busy in the day to day stuff that they forget to ask whether you want to hold your baby!!

PS - this is Tiffany J from Xanga/Facebook... just using my new blog to login. :)

Love In the Name of Christ-Huntington said...

We all love you and your family Jill. Thank you for taking time to do the update. Lots of prayers going on here for all of you. Anything we can do, just ask. Take care and God's blessings.

Anonymous said...

Always ask to hold him. Beg the nurses and his doctors. Yes he has his belly line but it can be secured and you both need this. If he is vented he will be sedated. Be assertive. Trust me it won't be the last time that you will have to take control and demand to be heard. Praying right now for your family. Crystal in IL

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