More serious update

Ian is being followed by a pediatric neurosurgeon because he had a brain hemorrhage early in his NICU stay that seems to have caused extra fluid on his brain. (NO ONE bothered to mention that this had occurred in the hospital. We did not learn about it until the neurosurgeon mentioned it at our appointment a week after Ian came home.)Within a month his head went from being shaped like his daddy's to being shaped like Tweety bird's head. His past two MRIs have not conclusively shown an increase in head fluid level at a high rate. Also, his head circumference measurements have been consistent with the normal rate of growth... Though his head size is in the high 90s for percentile.

On Saturday, which is also my 29th birthday, we have a follow up MRI to decide his course of treatment. It sounds like the doctor may want to do an EVT procedure to drain the extra fluid from his ventricles that was not re absorbed when his brain hemorrhaged. This would involve placing several burr holes in his skull and letting his head drain for a few days in this hospital ( another hospitalization). Needless to say, Doug and I are not keen on the idea of going back into surgery.... And then back into the hospital.

When Ian had surgery December 19th of last year, he went from breathing on his own to having a breathing tube down his throat (square one) then spent an entire month undergoing a tough recovery process and learning how to breathe again.

So I am boldly asking God to have Ian's brain to self heal and resolve the hydrocephalus on its own. So far the hydrocephalus has not seemed to show that Ian's brain is under additional pressure from the fluid. He has already been through so much. I don't want him to need another surgery. Our follow up to the MRI is March 14 with the neurosurgeon. We need good news.

Ian updates

Baby boy has been home for a month now, and every week there has been at least one or two doctor visits. This week we finally got the ball rolling with the Early Intervention program, so he will be seen regularly by various therapists soon. His development is delayed and they don't know what to expect from him, but we all want him to be the best Ian he can be.



We are hoping to have private duty nursing care arranged for him by early next week, so that I may return to a full time work schedule. I have much to do and I can't afford to be off of my game. I am also bleeding leave time, Nd will not accrue additional leave for the rest of this year. What I have is what I have. Ian makes me feel like I shouldn't be working outside of the home. I feel so inadequate as both a mother and employee. I feel guilty for not being at home enough or able to attend most appointments and guilty for not being at work enough or "all there" when I am there. If I could stay home with Ian we wouldn't have to find a nurse that we may not be able to afford.

I feel home bound with Ian's tube and feeding pump. Were it just those item, life would be simpler. Unfortunately, he also requires a Farrell bag ( gastric pressure valve) due to the procedure he had to handle reflux. The Farrell bag complicates the physics required to ensure he is receiving the amount of nutrition needed. We've tried to go out with Ian, pump and Farrell bag on a number of occasions, all of which have resulted in us turning off his feeding pump. He is fed almost continuously via his feeding tube, so when his pump is off he's not eating. The Farrell bag must be used during feeding so his reflux procedure won't become undone.

Needless to say, we don't get out. We lug Ian and his IV pole to my Grandma's, but true family outings are nonexistent. I don't want to starve my son while we enjoy a time out together. The physicians have offered ono real help regarding the Farrell bag."Turn off his feeds for a few mins," they say. Well what if we needed a few hours, like visiting the Dr and having to wait two hours to be seen. That bag, though its keeping him from being in the NICU may be the sole reason we can't take a road trip to see our parents and sibs in NJ or GA this year. We haven't given up yet, but after one more earnest try, we will be prepared to accept this small, annoying factor of our situation.

Choose Life

Ian's been home for almost a month now. We are trying to find someone to care for him during the day. After prepping Fluff's daycare provider, giving her updates in Ian's condition and taking him over to the house to meet her, she has made it clear that she doesn't want him at her daycare. I wish she would have said something initially, like when she was telling us she would keep him. Yes he has a g-tube and developmental delays, but he isn't much more difficult to care for than a 'normal' 4 month old infant. To reject him now is just the beginning of all of the rejection he may face in the years to come and for us as parents.

Today ( technically yesterday now), a word kept reoccurring to me: "There is a blessing in choosing life." This resonates with me because for BOTH of my pregnancies, I had a decision to make... One to carry them to term, to allow their little lives to progress as God would have them to, to not terminate or try to undo what God set into motion. This was despite all of the adversity met by both pregnancies, first as an unwed mother (my own personal rendition of Knocked Up, a movie I can no longer find funny) and as a mom afraid to be excited for her little boy... Would I even be able to carry him full term, how many times did I need to visit a doctor or other medical office EACH week? Would we be able to take care of him when he got here?

I tell you, motherhood has been wrought with much suffering, but again, there is a blessing when you choose life. It has not been an easy stance to take, choosing life, but I feel that the rewards have exceeded all of the pain. I have a beautiful little girl who is enamored with her brother. I Am absolutely in love with my son.

Although I lost both of my grandfathers last month within two weeks of each other, God has blessed my family with a beautiful house to rent for less than we would be paying if we had renewed our apartment lease. I'm talkin three bedrooms, gorgeous hardwood floors, a deck, two person jacuzzi tub, etc. Before that, when we were struggling through Christmas season with our hospitalized son and sad families, due to ailing grandparents, my worst Christmas by far, God saw to it that we were provided with a Christmas tree though we couldn't afford one on our own, via our church's generosity. Not only did they give us the tree I wanted, but they gave us the trimmings, groceries to include a turkey, and toys for Fluff, AND some money.

I am still struggling with Hotman's condition and uncertain future, but I choose life. That goes beyond choosing to continue with a pregnancy. I declare that I choose Life through Jesus. He is the ONLY one that can make this earthly life worth living, children, significant others and a rewarding job that you love can only bring you to a certain point in fulfillment, but there is still a part that only God can play.

I feel like I am coming to the end of a life that once seemed sustainable without a close, personal relationship with Jesus. I have tried to be made complete in my occupation, but that's come up short. I can't wrap my identity up in what I do to make a living for my family. Apart from God, the motions I go through are meaningless. It doesn't matter how many people I think I help. It's empty.

I have come to believe that my hours away from my family on a 40 hour per week basis should be spent doing something else. I have been asking God to show me what I should be doing as an occupation. Please be in prayer with me about that. Also pray for Ian's NICU roomie. He has a procedure tomorrow. His mommy has been waiting a long time for him to come home with her.