PROGRESS!

Sorry it has been a few days since our last update, but it has been a little chaotic.  I was discharged Monday at 4:30 from the hospital (it was supposed to be noon). Literally, in the last hours of my stay at the hospital, there became availability at the Ronald McDonald House. Huge relief! Unfortunately, the Ronald McDonald House doesn't have internet access. In combination with a crazy schedule, it has been difficult to update. I apologize.

Joshua's last few days have been really productive. All the doctors do their rounds in the morning hours between 7-9, so Matt and I try to get to the hospital by 8am (when the NICU opens). His neurosurgeon has been monitoring Josh's head to see if hydrocephalus has developed. The day after his surgery, his head size increased slightly. We thought that would be the beginning of a steady climb. However, by the next day, it decereased back to the original size. Since then, it has not grown AT ALL! God continues to show how faithful He is!! So, if it continues to maintain no growth, we will be going home with no shunt, which is exciting... a little scary, but most of all exciting. Typically if hydrocephalus is going to happen, it forms within a week of when the surgery for the closure is performed. Then, after that week, the possibility of needing a shunt goes down. After the first year of life, if no need for a shunt has presented itself, the possibility decreases dramatically.

They took the bandaid off of Joshua's incision two days ago. The neurosurgeon warned us that it wouldn't look pretty, and he didn't lie. However, he was really happy with the closure. When they do the closure, they try to pucker the skin as much as possible to prevent cerebral spinal fluid from leaking. So, even though it looks scary, the doctor is really happy with it. Of course it is really emotional to see Joshua's back look like that, but since the doctor is happy, and we're happy. It's about 4 inches long and is risen off of the skin about 1/2 an inch.  As Joshua grows, it will flatten out more.  They are keeping the incision clean by routinely washing it.  They also have what are called "mud flaps," (yes...that's what they are called and that's what they look like!) to protect feces from entering the incision.  It basically looks like saran wrap that sticks to his skin right below the incision.  The plastic is then folded back and sticks out of his diaper to prevent a rash.  His diapers are worn backwards so that it is easier to clean him up.

They are also continuing to catheterize him to see how much urine he is not empyting from his bladder.  They will allow up to 20 ml to be left in before they feel the need to be on a catheterization plan.  They begin by catheterizing every 4 hours.  Then they move to 6, 8, 9, and 12 hours.  He is now being catheterized every 12 hours because the amount of urine hasn't been too significant. This is great news because it means that we will most likely not need to go home on a catheterization plan!  Only time will tell.

Orthopedics have completed x-rays and have discovered that he has dislocated hips.  We haven't met with the doctors yet but they will tell us what treatment will most likely look like when we see them.  At this time we also have not noticed any movement in Josh's legs and feet.  Please, please, please pray for healing.

Originally the doctors told us that I wouldn't be able to breastfeed for at least a week after surgery.  When we talked to the neurosurgeon yesterday and he gave me the thumbs-up to start trying.  Of course I am not able to hold Joshua like I typically would but it is exciting to be able to start feeling more like a mom and less like an observer.  The only way we've been able to hold him is by laying him tummy down on a pillow up to this point because we can't put pressure on his back.  Today I got to have him nuzzled up close to me while he layed on his side.  These small victories mean the world to us. 

The nurses have been doing a great job of preparing us to take care of him.  We are starting to feed him more, change his diaper, and tomorrow we will learn how to clean his incision.  He's finally starting to feel like ours!

So as you can see, God has been doing some great things.  He has also continued to stretch our faith.  Thank-you everyone for your e-mails, calls and text messages.  We haven't been great at returning all of them because of time constraints but they have encouraged us in ways that words can't express.  It doesn't feel like we're alone here...we have all of you with us. 

Kim and Matt