Tuesday, August 10, 2010


I am so thankful for all of the comments and readers that have come over from other's blogs to give us words of encouragement, prayer, and support. I haven't been able to respond to each of you, but know that I have read every word of your comments. I truly appreciate the overflow of love that we have received. If you are new to my blog, I hope you will stick around as our journey with Hypoplastic Left Heart Syndrome is just beginning. If you want to go back to where it all began, we received our diagnosis on April 20, 2010. You can look back through my archives and read from that point on to understand the journey we have been on so far, and where we will be going from here.

Here are a few things to be praying for.

1. Yesterday, I had my last regularly scheduled OB appointment. I'm about 2cm dialated and getting softer. I was concerned that Mr. Joshua had decided to flip after a night of intense movements last week. The doctor checked to make sure he is head down. Sweet Joshua is nice and cozy under my ribs, so the doctor had to really push hard while checking me. It caused me to bleed pretty intensly which freaked me out- but he said it was just from my cervix and nothing else. I was pretty crampy last night, and he warned me that it could send me into labor. Today I'm feeling pretty good, except I'm still spotting a bit and have an occasional cramp here and there. Just pray that I continue to feel good until Monday. Also, pray that once we are there, that Joshua is indeed head down. I really don't want a c-section.

2. Something that I'm really praying hard for (and would love for you to join me) is for Joshua after delivery. Like I've posted before, they are going to take him immediately and get an IV going in his belly button/umbilical cord. They are going to administer a drug through that IV to keep his PDA valve (I may not have a clue what I'm talking about, so if I'm wrong with this information- please correct me) in his heart open. If that valve closes before surgery, Joshua will have some serious problems. One of the side effects of the drug that they will give him is apnea. If the drug causes Joshua to have episodes of apnea, they will ventilate him until surgery.

Shane and I have discussed that if Joshua is ventilated, we will not allow Caleb and Hannah to see him. We don't want to scare them. Both Caleb and Hannah are so excited to meet their little brother. I want them to be able to see him, touch him, and kiss him before surgery. I also, selfishly, want to be able to spend some time being his mother without having him sedated, ventilated, and relying on machines. I also want him to not be dependant on machines as much as possible. I've read about the effects of extended periods of ventilation and I just don't want to take chances of more complications. Please join me in praying that Joshua will not need to be ventilated.

Once again, thank you all so much for your love, support, and most importantly prayers. We are humbled by every kind word and every prayer on our behalf.


Hope's Blog said...

You are constantly in my thoughts and prayers. I know the time is drawing closer and I am remembering that time myself. I will add your specific prayers to my list.

I wanted to let you know as well that my boys (2&4) saw Hope before and after she was intubated and it didn't bother nearly as much as I thought it would. I will continue the prayers for him not be intubated right away (Hope wasn't intubated until day 15...one day before her Norwood). It is more common for them to be intubated rather than risk anything happening...just to forewarn you, not to make you sad.

Enjoy your last few days and talk to him like crazy. Tell him all your hope, dreams, and plans for him. He will be here with you soon enough.

Veronica said...

I will be praying.. I'm 6 weeks behind you with our induction date of 9/22 for our HRHS son. I plan to let my kids come up and see him the evening of the birth. Even if he has a vent, I will explain to my kids that he is just getting some help with air... I think they will be OK with it... I really want them to see him before we transport for the first surgery.
I'll be following you and Joshua daily, praying hard.

Stefenie said...

You know that I will be sticking around and always here to offer you any support you may need as you embark on this journey. {{{HUG}}}

I know that you are worried about your other kids seeing Joshua with a tube. I too worried about that when we had Logan but the staff encouraged us to allow Wyatt to come visit. They really helped with the entire situation and it wasn't scary for Wyatt to see Logan on the vent or hooked up to numerous lines. He had lots of questions but the staff made him this amazing book with pictures they took of Logan and his room to help alleviate any anxiety that he may have had. Of course it is your choice as their mother what you want to do but don't let the tube get in the way of letting them see their sibling. I have many pictures of Wyatt sitting in a chair by Logan's bed smiling, holding his hand and talking to him as if there wasn't anything wrong with him. He was almost four at the time. I honestly think it made him feel less scared about everything because he could see his brother and know that he was ok. He constantly worried about Logan being away from him and us.

Always praying!!

Avery Tales said...

I will pray that he doesn't need to be intubated immediately and that you get that much-needed snuggle time with your sweet Joshua. You are an amazing Mommy and your journey inspires me. I know that God has sweet Joshua in His hands.

lmpd0617 said...

Due to a failed induction, Olivia was born via c-section after 40+ hours of labor. But she was born very pink and screaming her little head off. I got to see her for a minute before they took her off to the NICU before they started the Prostaglandin drip (to keep the PDA open). The only difference was our hospital immediately intubated her as a precaution with the drip instead of waiting to see if the Prostaglandin would cause any issues.

In all, she was intubated for about 2 1/2 weeks and didn't really seem to be worse for wear. I feared oral aversion when we started bottle feeding because of the long intubation but to my pleasant surprise she did just fine. Please feel free to email me or check our blog if you have any additional questions. I tried to be as open as possible as we were going through everything.

We're praying for you

Anonymous said...

If you are taking votes - I too vote for allowing your other children to see Joshua (tubes and all!) At our hospital we had a social worker that helped us with the Child Life Dept. They had a doll that they were able to show our son (who was 2 at the time) so he knew ahead of time about the tubes. Also, I would like to suggest that you be allowed to tour the CVICU (cardiovascular intesive care unit) BEFORE you see your son after the OHS. We did and it helped A GREAT DEAL! I truly had no idea what to expect but they allowed us to briefly peak in and see infants who had OHS and were now hooked up to all these machines. MUCH MUCH less frightening then if we had not been prepared. Sending prayers and thoughts your way. May you find the amazing peace that comes from knowing God is holding your precious child in His arms and is guiding everything the way He has already planned. Know that you are NOT alone - there are many people praying for your precious miracle.

Shannon Egan
cp: McKenzieLayneEgan

The Real Life of a Red Head said...

You ladies bring up something I didn't really think about. We had just assumed that it would be too much for Caleb and Hannah to see. I think I will ask the social worker or nurses if they have anything to help us prepare them to see Joshua "all hooked up" if we end up going that route. Thanks for the comments and support!

kirsten michelle said...

It's so amazing to see the outflowing of love and support here!! Jill, I am so eagerly anticipating you getting to meet this baby and will be here to help pray you all through this. You can bet I'll be keeping tabs as much as I can so as to stay abreast of baby Joshua's progress. I can't believe you get to meet him so soon!!

Love and blessings to you all. Praying for wisdom, healing, and peace ...

Chris, Diana, Elena, and Sadie said...

If you haven't heard the story of Jayken Beal, then check out beforethemorning.net. He was also an HLHS baby. His story is amazing, and the song written for him makes me cry every time I hear it! Our family is praying for you. Anderson First Friends Church will be praying for you as well.

Erika said...

I just found your blog too and I will really be praying for all of you. I have a sweet little boy named Joshua too, so hearing that your little one shares the same name really touched my heart in an extra way. You have an amazing story and I can only imagine how many lives already have been & will be touched by you & your little Joshua. ((HUGS)) & prayers. ~Erika

Kathie said...

Lots of love, hugs, and prayers for you! 4-1/2 years ago I was in your shoes. Now she is a happy, healthy, spunky girl who just happens to have half a heart. You'd never know though. Also she wasn't intubated for a couple days after birth, so I will pray that it will be the same for Joshua!

I vote also for letting your other kids visit even if Joshua is intubated. Amelia just visited her baby cousin in the hospital who was intubated (for a completely different condition) and she wasn't bothered by it at all. All she could talk about was how cute baby Jaxon was.

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