Sunday, June 27, 2010

Joshua's First Week Explained

For those of you who are interested, I wanted to give you a brief idea of what Joshua's first week of life (and beyond) will look like. This is all according to plan for now, but you know how life goes- things are always changing. Just is just a general idea of what we have been told the first week will be like.

Sunday, Aug. 15- Shane and I will head down to Indy. We plan on checking into the hospital hotel at around 3:30ish. We will relax and enjoy each other's company that evening. Possibly find a decent restaurant to go to for dinner, or meet up with some friends who live in the area. We will then head to bed somewhat early so we can be well rested for the next day/weeks.

Monday, Aug. 16- Arrive at the Women's Hospital at 6:30am to be induced. Our goal is for a natural (vaginal) birth. Induction will start as soon as we get registered and settled into our room. If labor is anything like it was with Hannah, hopefully Joshua will make his appearance later that evening. (My biggest fear is having to have a C-section and having to recover from that as well as go through the next few days/weeks of hospital living- I'm giving that one to God though.)

Immediately after he is born, we will get a peek at him, and then they will take him to the NICU (Neonatal Intensive Care Unit) and start his umbilical cord IV. They will administer a drug (I forgot the name of it, but I think it starts with a P) that will keep the valve in his heart (called the PDA) open. This valve is open while he is in the womb, which allows his heart to function properly and blood to flow through his body properly. Once he is born and his heart has to work on it's own, that valve starts to shut. We don't want that valve to close. Due to the sensitivity of the IV, the doctors have told us that we probably will not get to hold Joshua until after the critical recovery time in the PICU (Pediatric Intensive Care Unit). (Although, I've heard that some parents have gotten to hold their baby as long as he has been swaddled really well and the nurses are ok with it. For as much as I want to hold him, I want to do what is best for him, not me.)

One of the side effects of the drug that they will give him can cause apnea. (He could potentially stop breathing) If apnea occurs they will have to ventilate him as soon as possible to help him breathe. If he is ventilated, there will be no possibility of holding him until after recovery.

Wednesday, Aug. 18 or Thursday Aug. 19- We will be transfered to Peyton Manning's Children's Hospital (PMCH).  Joshua will have his first Open Heart Surgery (OHS). It is a 5-6 hour long surgery (depending on any complications that may arrise). After he is out of surgery he will recover up in the PICU. The PICU will be our home for the next few weeks. The first 24-48 hours after the surgery are the most crucial. If When he makes it through those first few days, the chances of survival increase greatly. We will be in the PICU at PMCH for approx. 2-3 weeks until we are released from the cariologist.

Once we are released from the Cardiologist at PMCH, we will then be transferred back to the Women's Hospital NICU where our main focus will then be feeding and gaining weight. We will also work on any therapies that he may need- developmental, occupational, etc. We will also probably get Joshua's G-tube placed and working (a button like contraption that goes directly to his stomach through his belly for feeding).This will also be the time where I focus on learning how to care for Joshua when we are home. This time period at the NICU usually lasts another 2-3 weeks depending on how well Joshua does.

Hopefully then, sometime in October, we can bring Mr. Joshua home and begin to adjust to living as a family of 5.

It's going to be a hectic few months, but after we get through them, life will return to a new normal for us.

If you are interested in coming for a visit during our stay in Indy, just ask. I'm not sure what our time will look like there and I'm more than happy to have visitors, just not sure when.

I will continue to update as the time gets closer adn more information is available! Thank you all so much for your continued prayers and support.

3 comments:

The Cox Family said...

PGE - Prostaglandin

Why does he have to have a g-tube? Are they going to try and bottle/breast first and if he doesn't do well put one in or are they just going to do it?

The Real Life of a Red Head said...

Becky- They will try feeding first, but a lot of times these babies have a ton of problems with aspirating and all that good stuff. They will do a G-tube after every attempt has been made to to feed him regularly. These babies also tire out extremely easily between the first 2 surgeries because they are only working on a half a heart and things are modified so heavily, that they want the babies energy to go to digesting the food and gaining weight instead of the sucking and swallowing. We'll see what decisions we have to make. Wouldn't it be awesome if he doesn't need one?! :o)

Anonymous said...

I have to say that the g-tube was the best decision we ever made. Meds are a snap to give (no guessing how much was spit up, struggling to get your baby to take it in the first place and baby only gets positive oral stimulation), it alleviates the stress of getting your baby enough to eat (let's face it these babies have bigger battles to overcome) and shorter hospital stays (the quicker you can get out of that germ infested place the better!). Your child will eventually orally eat but in the big picture here it is not important. Far from it. Getting a g-tube is not failure but rather a head start. When the time comes to introduce solids there is no reason that you can't put some down the tube too. My daughter spent the first year of her life fighting hard just to be here so she received no to little oral eating. It was what was best for her but as a result she has no interest in eating but that doesn't mean her nutrition is poor. Quite the opposite! I make her blended foods with whole natural foods and oils. She "eats" better than anyone I know. She receive no formula or laxitives just whole good food and she is thriving because of it. I'm so glad that you are embracing the g-tube and it has already been discussed. So often doctors don't mention this real possibility to parent and set them up to feel like they failed their child. Good for you...I'm off my soap box now :)

 
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