Phoenix is home!!!

It has been way too long again, sitting at Starbucks on my break time, before picking up dinner. I compose my blog entries in my head and then when I get the free moment, my fingers are off and racing. Phoenix came home last week on Thursday, it has been Wonderful, complicated, revealing and stressful in moments. It’s crazy to me how I forgot what it’s like to have a newborn and how quickly all that I thought I would naturally love to do, becomes overwhelming. I mean the simple things like holding and nursing, seem all consuming. Rowan was an intense and needy baby and Phoenix’ demeanor is much more content. But like all premature/ sick babies who spend time at the hospital, they are desperate for physical touch and time with their parents, as we were to be able to give that to him. It is however an adjustment, I guess I was thinking that life would be somewhat normal when I was done being pregnant , with Mike and got to bring Phoenix home, but instead I have felt all those “new MOM” emotions and thoughts of failing at this hard and beautiful work of Motherhood. Phoenix is all new in so many ways, and keeping up with the demands of his day to day are an insecure place to me. Yet I remind myself and know God has given me the strength, grace and hand picked Mike and I for this journey, which still perplexes me. SOOOOOO all that to say, I am learning all over again and asking God to teach me how to do it all.
Today, we had follow up appointments with Dr. Wang (plastic surgeoun) and Dr. Gennusso (neurosurgeoun). Mike and Rowan came with for the sake of helping me with paper work and support. Thank God they did. Phoenix doesn’t have a carseat ( he has a special car bed, which he lays on his side on in the car) and because of his fresh wound he can’t be in a carrier/ sling, so no free arms for me. AHHH, all the many luxuries I took for granted with Rowan. Therefore Mike had to fill out all the initial paperwork.
Good news from both visits , his shunt looks good, no more signs of leakage and it seems to be draining correctly, they removed the stitches from that. His Skin grapht is healing well, there is one area, that Dr. Wang is concerned with, but he said it will heal “eventually”. Let’s pray for speedy healing, little miracles in the day to day. Phoenix dressing/ bandage on his back has to be changed multiple times a day, because it is close to his bum and because he has no bum muscle, flat bottom, the poop tends to come up his back and get on the dressing, so with every few diaper changes we have to redo that, which honestly is a headache. Can’t wait to be done with that, about 2 more weeks, HOPEFULLY!!! Tomorrow is our first out patient physical therapy session, he has outgrown his soft casts in a week, he loves to eat and is growing amazingly well. He gained 10 oz. since last week. You can all pray that I continue to feel more confident in the exercises and eventually the taping of his little feet, that is intimidating to me. I love our Physical therapist though.
We found a church that we feel a part of, thank God. We’ve only been a couple of times but already many people have come around us and they will be bringing us meals which is incredible, because we are really out of the way. Our friends Wendy and Mel that we met at the NICU have been so fantastic at encouraging us and connecting people within the church to us. Hopefully will return in another couple weeks. Currently we are on “house arrest” because Phoenix risk of infection is still high until his back is fully healed. That is hard for the Reuwer family personality as we love to be out and about and socialize, however trying to enjoy it and Mike gets out in the morning with Ro and I get out alone in the late afternoon, good time to call if anyone wants to chat.

All and all we feel that God’s timing could not be more perfect for us, we have three more weeks till Mike returns to school and he has only had to go in the mornings for exercise and then returns home for so shut eye before he gets up with Ro. He has been so great, feeling the stress of balancing it all, but we are learning together to not take eachothers roles for granted. Why do we have to relearn these same things over and over again, like a child I swear. Jon is on a much deserved vacation, boy do we miss him, how we would do this life without him I am not sure. He is such a great brother, uncle and friend. We are so thankful again and again for all the support, prayers and love that is covering and carrying us through. Thank you friends and family, we are richly blessed. My heart is full of gratefulness and strengthened by each one of you.

On a closing note, friends and family of mine from home (Chicago) are having a benefit for Phoenix to help cover all the overflow and future costs of surgery and care for him, (So AMAZING!!!) . You can read more about it as well if you would like to attend or become involved in any way, I know they are doing raffle tickets and looking for raffle gift donations.

Here’s the link:
http://fightingforphoenix.giving.officelive.com