Angels Among Us

Addie is back on a slow & steady, if tenuous, upswing. I know I shouldn't type that because good news is usually followed by a dive down into the trenches, but you need to know that your prayers are being heard and our girl is doing well thanks to your continued support and prayers.

The morning after Addie went back on the sump and her Xray showed large loops, she had an Upper GI that showed no intestinal problems and an Xray that showed the loops were gone. Praise God for answered prayers! Since then, she's back on regular feedings every 3 hours. Her reflux is worse, and she's fighting her bottles more than before since being back on the sump. She refluxes less with bottles, so we're trying to do as many feedings by bottle as her tired little body can tolerate. Twenty five mls by bottle doesn't sound like much (it's not even an ounce), but for her little self to take all of that by bottle, every 3 hours, is a huge deal. She works so, so hard, and we are so incredibly proud of her! We are just so thankful that food and bottles are back in the equation!!

Our biggest hurdle looms before us, and it is racing towards us at lightning speed. Through the PDA ligation, through the struggles with tolerating food, through the reflux, the NEC, and the challenges of coming off the ventilator and then the cannula, the fluid build up on her brain has continued to lurk in the background. It's a constant presence, stalking our every move. We've managed it thus far with spinal taps and then ventricular taps, but soon the monster in the closet must be dealt with once and for all. All along our prayer and our belief has been that the fluid build up would eventually resolve itself, and that our sweet girl would not have to have a shunt placed. We still believe that God will intervene and spare her that surgery and the lifetime of potential challenges resulting from the shunt; however, the window of time where He can do so is closing quickly.

As I mentioned in the last blog, Dr. Harris mentioned placing a shunt as soon as 2 weeks from this past Tuesday. Philip & I have major reservations about the shunt in general, and we are concerned that given more time, Addie's head will resolve itself. We hope to meet with Dr. Harris this week so that we can discuss options, timing, and the multitude of other questions and concerns we have. Please pray for wisdom for all of us. ..that Dr. Harris will listen to us and our concerns and that we will listen and hear his response as objectively as we can. Please pray that we will all know the best course of action for Addie and that we will all be on the same page. ..and that we will have a peace with whatever decision is made. As parents we make hundreds of decisions that will have a dramatic impact on our children's future on a weekly basis, but it is rare to know what a huge impact a single decision can have on your child prior to making the decision. The decision of whether to and when to sign the consent form for the shunt surgery will change the course of all 3 of our lives for the rest of our life. If we agree to the surgery, we will see the effect of that surgery in Addie's life every day. Every time she has a headache, we'll worry that her shunt is broken. ..every time she gets sick to her stomach or is in a weird mood, we'll panic that her shunt is malfunctioning. ..every time she falls down or tumbles, we'll be afraid she's cracked her shunt tubing. ..every time she asks to do something we'll have to determine what risks that poses to her shunt. ..the list goes on and on. I know there are thousands of children with shunts, many who have no problems at all, and I hold on to that knowledge because she could very well wind up with a shunt. I don't know what will happen, but I do know at the end of the day, our God has a plan for this incredible little girl. If that plan includes her having a shunt, then He has a plan to carry her and us through the process and through life with a shunt. If that plan doesn't, then we will be forever relieved. Either way, we will praise Him because He made provision to resolve the fluid on her brain and keep her in our lives.

So many babies don't make it in the NICU. Two nights ago, angels carried another sweet baby home. It made it several days in extremely critical condition, and I saw its very tired parents come and go through the NICU, exhaustion and fear in their eyes. I don't even know if it was a boy or a girl; it was in the isolation room the entire time. It was incredibly touching to see the doctor on call, the charge nurse, and several other nurses hovering outside of their private room, waiting to comfort and care for the family now that they could no longer care for the baby. You could literally feel angels in our midst as that sweet little one faded and left us. Jesus loves children. ..I know He must take extra special care of these tiniest of children while they are here and certainly if they join him in Heaven. My heart breaks for those parents. ..Thank God I don't know exactly how they feel, but I have an idea and it's something no parent should ever have to feel. It could so easily have been us. There are so many occassions when Addie was in such critical condition, teetering between life and death. I don't know why she made it and this precious one did not, but I know that God is in it all.

I see how people lose their faith in conditions like these. I see how they question God; goodness knows I have! But at the end of the day, I don't see how you get through something like this without Him in your life. He has carried me through so many dark, ugly, UGLY days. I have yelled at Him, cried until I couldn't cry anymore, and yet I know He's still there, picking up the pieces I have crumbled into. Recently, Philip gave me part of an "afternoon off" so I could get some fresh air and run some errands, and when I left the hospital, I cried terrible, ugly tears as I drove away, begging Him to hear me, to spare my baby girl from a shunt, to heal her head, to spare her from any long term effects of the bleed. ..to please not let her have cerebral palsy or any other devastating conditions resulting from her prematurity. ..but most of all just to hear the desperate cries of a helpless mother who wants Him to help her baby. When I was done, I was calm again, and I could go on about my day. He heard me, and even if I still don't have an answer, I know He heard me and will answer in His own time. Some days it's just enough to know He hears.

Please pray for this family who just two nights ago lost their own angel baby. ..I don't know their names or where they are from or even if this is their first / only child. I just know that it would be devastating to lose the battle, to know only a short lifetime of suffering for your baby. I pray that they have peace somehow and that they know their angel is wrapped up with Jesus, laughing and coo'ing and in perfect health again.

We love you all!