I don't feel like I can really talk to anyone about anything without being misunderstood or told what to feel or not to feel or just talked over.

shell

Am I really a shell of my former self or is it that I've always just been nothing more than a shell? Only this time, unlike the others, I can't run away or avoid the things in my life that I must confront, the things I must deal with and work through to press on and move beyond this slump I've been in for what seems the past 20 years. 

My life is a mess, emotionally and physically and I'm out of options. I've decided to seek order in the best way that I've been taught, to seek God. It's not so much that my life is a mess as it is that I'm the mess. I don't know how to place one foot in front of the other or the direction in which I should go. Sometimes, I feel like my job is the only thing I'm good at... and that's only on days I feel like I'm doing a good job. Most days I feel worthless at work and at home, like why am I even here? What am I doing with my life? How did it all come to this? I am so lost.

The duffel

Here I am in the hospital with my son, the Children's Hospital to be exact. Ironically I have packed my Children's Healthcare of Atlanta duffel bag for my overnight stay. I bought it when I was like 21. Back then, life was so simple. I didn't know what I wanted to do career wise and it did not yet matter. I barely had anyone to answer to. I was responsible for my own coming and going.

It's hard to say if I ever even truly thought I would be a mom some day. Its safe to say that I never thought I would be a NICU mom.

Ian has Had RSV A few days now, which landed him in the hospital. I am sleeping over with him.

MRI results & such

Ian's pediatrician gave Doug the MRI results yesterday: There has been no change. The fluid is still there, but not in a greater volume. His ventricles have also not gotten larger. This is good news, but we will have to see what the neurosurgeon says as well. We are hard pressed to put Ian through another procedure if it's not necessary. He went to the audiologist the other day, and they were unable to properly assess his hearing due to a cold and his tiny ear canals. They will have to sedate him at a later date to explore his ears and intervene, if necessary. It's possible that he can't hear very well. We know that he can hear somewhat, because he responds to noises.

Doug brought home 6 boxes of Girl Scout cookies today, to include 2 boxes of thin mints, 3 boxes of Samoas and a box of the new-ish Savannah Smiles. I've told him repeatedly that I am having a difficult time avoiding sweets or consuming them in moderation, but he does not listen. I can't blame him for the fact that I ate an entire box of Thin Mints today, but I would not have bought them for myself knowing that I clearly have a problem. This funk I'm in and food that is not good for me go hand in hand. I'm sure my body has stopped losing weight from the pregnancy and has begun to pack on the pounds.

I can't seem to pull it together at all. I'm not doing well in ANY area of my life, not as a wife, not as a mommy, not at work. I'm missing on all fronts, and I just can't... well I feel like I can't. There is no motivation there. Sure, I have motivation to see and hug my kids, but beyond that I am not doing well. Today I accepted a LinkedIN request from a colleague that works at the same institution. I am thoroughly embarrassed at my profile. I don't feel that I've done anything noteworthy during the four years in my position. How am I supposed to leave if I have nothing to show for it?

I don't have a taste for living at all. When asked what I want to have for dinner or lunch, I can't come up with even the remotest inkling of an idea. You can forget about me meal planning. NOTHING seems good or like something I want to do. If we weren't actually homebound with Ian and able to get out of the house as a family, I'm sure I couldn't think of a destination then. I am just a void, walking around, going through the motions. I don't think you can even call what I do going through the motions, because for lack of a better description, I just "don't." I don't and I can't.

I want so much to break away from everything, and I just can't seem to budge. I feel like I'm in quicksand, getting dragged down deeper every moment into this pit of despair and emptiness. I'm desolate, completely barren with no trace of life or anything to bring forth. Press. On.

29

Today was my 29th birthday, and I have to say it was the most mediocre one so far. I didn't leave the house. I didn't so much as get dressed today. The day ended with me feeling more trapped than I did before.

Going somewhere with Doug and the kids was not an option today. Ian's gtube and need to continuously feed, coupled with a nissen, is a major anchor on what was already a stagnant life that was sucking the breath out of me. These walls are closing in on me. I didn't have a friend to help me escape for a birthday lunch, no one to watch the kids so that Doug and I could step away for a moment. No one wants any parts of Ian and his medical needs. Hell, I don't want to be bothered with a gtube either but that's my current lot in parenthood.

Ian had a horrible day, in gastric terms. He threw up about 4 or 5 times today after spells of retching and gagging. It sucks that he can't just take a bottle like a regular baby. Spring is nigh. I want to be able to take him on walks like we rarely did with Fluff. We don't get out enough as it is, but now we really don't. If we're out and about, Ian is not eating. Then we'd be horrible parents for starving our infant son. How are we supposed to get out though? Should we all be weighted down like this? The obvious answer is no.

The fact is, I feel trapped a number of ways: trapped in VA, trapped in this body, trapped in my career that I went to grad school for but want to leave, trapped in my job that kinda sucks the life out of me and under utilizes my talents. Often times I even question if I am still talented. I used to be gifted, and smart... VERY smart. I threw it all away, for a road traveled often. I ignored career advice for the sake of landing a job after a brief job search that seemed like an eternity. I settled. I seem to have a track record of settling for things due to impatience or laziness. I can see that very clearly now. How many times have I spat in the very FACE of God's hands in my young life? How much have I missed out on? How much grander could things be for me now had I paused to lend him my heart and ear to heed what He intended for me, for my life?

Is this fullness? At 29 I feel so damn washed up and stuck. I'm like on a climbing wall, with no attachments or grooves to grab or footing to push off if to leverage myself to the next level. I want to rappel down this wall and try another because this one sucks.

Do you know that my beloved Granddad passed away when he was 99? Freaking 99. That means I could have 70 more years to go. I don't want to live them like this. Not everyone gets to do what they love. It was foolish for thinking that I needed to do something I absolutely loved. Maybe I should have done something that required me to use my brain in the way that I did when I knew how smart I was, when my teachers believed in me and I wasn't just simply one of the black kids. When I moved to GA in the middle of my 8th grade year I let the experience break my spirit. I forgot I was smart. My focus stopped being to excel and compete academically. It was to just make high grades with the least possible effort. I carried this attitude from high school onto college and through grad school.

I regret it now, and here I am wishing I could go back and do something better, but now my hands are tied and feet cemented. This path never fit me. That is now apparent, but what else can I do? I carry a lot of responsibility. I can't just break out and change my course. I just feel like I'm dying from the inside out.

This birthday has been the suckiest of them all. If this is what any future birthdays I may have are going to be like, they aren't worth celebrating or acknowledging.

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.

Home at last

Hotman is now home, as of today. He turned 3 months yesterday. I have a host of drafts for entries I planned to write before now. I will begin filling in the gaps tomorrow.

Here is a picture of my beautiful son.

Hiding from the nurse practitioner

During Ian's stay in the NICU, we were daily bombarded with information on Ian's condition. A lot of times we just wanted to see him, our baby, to forget for a moment that he was a sick baby.

After a while we realized that, not only did we want to avoid being bombarded with information, we wanted the RIGHT information. One night, a nurse practitioner, not his primary, told us that she was darn sure he was having seizures and took it upon herself to load him with anti seizure medicine. Because the medicine was 'working', she assumed that she was right. Doug and I went home that night feeling heavier than before, having been dealt an additional blow. The EKG Ian had a few days later showed that the NP was dead wrong-- he had NOT been having seizures.

From that point on in his care, we only dealt with his primary NP, Julia, the one that made it her business to memorize his file and make sure he was getting the care he needed. We actively declined speaking to the NPs when someone offered to page them for us. I recall some days actually ducking to avoid some of them in the hallway. I see now how that probably lead to us not learning about his brain hemorrhage until after discharge, but I am thankful that we didn't also have that to worry about in December. Having a primary NP made getting f most our info from one person made things much less difficult. Sure, we summoned other NPs when immediate questions or issues arise, but having a home base made all the difference.

My amazing Fluff

Potty trained, despite all of the drama in our lives.