Friday, August 21, 2009

I wonder so many times a day, how Mom's do this. So many of my friends have multiple children and a lot of them make it look easy most days that is. Here it is one crazy moment after another and most days I am amazed that the day is over. Today. I feel like I can't believe it, this is our life, FULL to the top with LIFE, that most days, doesn't even make sense. If you asked me what I accomplished with my day my answer would be a dumbstruck and exhausted stare, somewhere between a 2yr. old, sleepless night infant and dinner, I think I accomplished reading a book to Rowan maybe put a dish or two in the dishwasher. I know, I know, it slows down, OK maybe not it at least starts to find a rhythm, that works within your house. I constantly find myself reaching for that, and know that it is just around the corner in so many ways.
I mean already in just this last week i have become so much less intimidated by Phoenix's wound and his Physical therapy and 2 trips to the hospital with him has become minimal and ordinary. That is a gift. So many gifts daily are poured out on us and I am sooo thankful for that. This week we met many new people from our church they have begun bringing us meals which I am so amazed by this kindness. We met with our friends Mel and Wendy at the Church's coffee shop and met so many others, it was great to hear them say they are reading about our lives and praying for us. Astounded that our life has become something to read....Then I am brought to the bigger picture of Raising boys to become great men and this plan that God has interwoven so intricately to make it a Great Story full of His Character. He amazes me, with his grace, strength and view of this life we live. I am taken back that he chose us and that really it has only begun for us. Phoenix is only 7 weeks old and Rowan two and there are UN named children of ours and unseen paths for us. Embracing this day is what I must always find my place in, this one day and these fast FULL days.
Ok, enough of my tangents, on to the updates. Rowan had a rollercoaster of a week as most 2 yr. olds do, we are learning how to help him through all the transitions. He is doing great for the most part and like every child consistency and schedule are everything to him, security that is. I lack in those areas and am thankful for Mike's touch and the Grace of God.He is adorable and so endearing that even in a moment you can forget the nightmare of a scene he caused moments ago. It goes without saying that Mike and I are learning to not allow ourselves to fray under staring eyes in public places.
Phoenix is healing well and hopefully this week will be the undoing of Wound covering, it looks great and has healed well. I don't know what that will mean, if he'll still be unable to be on his back or if there will be set amount of times he'll be allowed to lay on it. We got a great stroller this week that has a bassinet so he can lay down on his tummy or side in it and I can be hands free for appointments, which is a gift in every length of the word. He sleeps like a newborn and does not believe night is for bed time. Our weeks consist of 2-4 trips to the different doctors and Physical Therapy. We are only currently seeing 3 or the 6 Doctors he'll be dealing with on a regular basis because some we have to switch over to military doctors for insurance reasons. This week at Physical therapy I learned how to tape his right foot to help reshape, and reposition it. I am learning to fit his exercises on his feet into our day to day. Great progress has already happened in these weeks and we are hoping and praying that will continue to avoid surgery.His shunt is doing well and this week we will meet with the Neurosurgeon again to look him over. We also will start Occupational therapy, which will help with his development, and give me at home exercises to do to help loosen his upper body, he tends to overcompensate because of not using his legs. His demeanor is sweet and strong and I am enjoying his intense stares and chubbiness. He is a doll, such a sweet and strong spirit.
Mike and I are not looking forward to his return to school in a couple of weeks, but know that it is worth it and will be great for us. We are doing well, looking forward to a much needed date night this week, his brother will be back from vacation and Mike's Mom and Dad are in town, so maybe we'll get more than one. YAY!

That's it. Love to you all and thank you for all your love, prayers and support.
Wednesday, August 12, 2009

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:
Wednesday, August 5, 2009

Phoenix is coming HOME!!!!!

This week has been yet another whirlwind, and as I was getting to my end, we heard the fantastic news this Monday that if the wound on his back looked good he could come home as soon as Thursday!!! I pretty much wanted to start bawling right then, but there was no time for that and the timing was pendding on multiple doctors approval. The Plastic Surgeons approval being the top priority. He came Early evening monday and gave the thumbs up saying the skin graph looked good and that we could go home with the approval of the Neonatologist Dr. Ortiz and the NeuroSurgeoun Dr. Ginnusso, both of which were more than excited to say yes. Everyone is amazed at how well he is doing and that the wound is healing. Also, the fact that he has had no breathing issues outside of bottle feeds, which is normal, we know that it is a MIRACLE, thanks to all your prayers.

These last three days have been preparation time at the hospital and home, it is full of a flood of emotions from elation to overwhelming. We have learned everything from Wound care/ dressing to physical therapy and have had to set appointments and figure out insurance and home health care and the list goes on and on. No complaints though because he is sooooooo worth it!!! Thankfully we have the help of professionals. All our amazing nurses and doctors and Pam our personal hospital liason. Know how it works is pending the trial ovenight (tonight) at the hospital (they have hotel like rooms I'll stay in with Phoenix)if all goes well, no breathing issues or anything else, then tomorrow we are discharged. So Amazing, I can't even believe how crazy excited I am, who looks forward to all night nursing and sleepless and all the challenges that come packaged with a newborn, perspective sure changes with trial. I sure am looking forward to all of these things. The day to day is a bit intimidating but we will have a home health nurse coming three days a week for the next 2 weeks, which will be helpful with any questions, complications or fears we face.

On a daily basis we will have to do wound care for his back and Shunt in his head, watching for infection and ensuring that he is not on his back at all. Physical therapy on his feet and knees at all diaper changes, which I know will become second nature over time, a little intimidating right now. As well as paying attention to his breathing and administering meds and the likes. Seems less overwhelming when typing it out, but it is a lot of attention to him and all the signs of possible "issues".I will also do physical therapy 3 times a week and follow up appointment with specialists every week or so. All of that to say, continue to pray for the grace to care for our little man.

Mike and I are continuing to balance eachother out and learning to encourage and strengthen one another in this new season. He is home for four more weeks which is the amazing provision of God, his timing is always perfect. I am thrilled to get to be a Momma at home and to learn all that is to come to care for him and Rowan. Rowan is getting excited as we have set things up for Phoenix, we've explained that he has ouwies and that we have to be very gentle and he said he wants to hug and kiss him. SOOOO cute, I am looking forward to there first meeting, I know after the initial adjusting they will have a very special bond. We went out to dinner last night and there was two brothers sitting next to us the younger one was mentally slow and the older brother handled him so well and lovingly, not even noticing that so many were effected by his love. I felt like it was a gift and picture of the dynamic of Ro and Phoenix together, even though Phoenix's handicap is physical and not mental.

Thank you all for your prayers, love and support we are amazed and thanful for your continual walking with us in this journe, we love you all. I will write again when we are home.