a rough update

Friday Natters had a very difficult day. I had made plans to celebrate Steve's birthday but we were both so stressed it was impossible. At times like this birthdays are really a barely noticeable blip on the radar. He joked it was "easily the worst birthday ever" and I get it. Two years ago on my birthday I was recovering from our second miscarriage. This year on my birthday I was about to enter the hospital for bed rest and was out of my mind with fear for my unborn baby. The way I see it, next year our family is due to have some major celebrations. For now our priorities are elsewhere and that is just the way it is. For Mother's Day and our anniversary I told him not to spend one minute thinking about presents or romantic gestures. There is no energy left for such things and I did not want him to feel pressure. Right now the fact that he wakes up every day and stands next to me as we face our life is all I need. There are no greater displays of love than how a person responds when life gets this hard. I have always known that I found an incredible man and that marrying him was the smartest thing I ever did. This year has only made that crystal clear. I am grateful for the marriage we have. I imagine situations like this only worsen the cracks in a relationship and am relieved we have a strong foundation to see us through. Thank you God (and David and Karen) for Stephen.

Oh, can you tell that it is 2:30 in the morning and I am feeling emotional? I'll get on with what I intended and that is update on Natters current status. I do have more pictures, including wide awake ones from tonight that I will post tomorrow. Despite having challenging lungs she continues to be one of the cutest people on the planet and obviously the strongest person I know.

I wrote this to update some of my cyber friends and was going to try to edit it for the blog but frankly I am too tired. I trust you'll forgive me for typos and whatnot....
Last evening (Friday) Nat had her last dose of antibiotics. Hours later her temp spiked. She tends to run warm b/c she works so hard to breathe. I mean, she can not wear hats ever and she rarely wears clothes now b/c she overheats easily. Her temp has been up the last week or so but they said it was due to the breathing. Her temp was up enough last night though to raise eyebrows.

Anyhow, slightly elevated WBC, elevated CRP (a general indicator for inflammation) and the white cells show toxic granulation (which is an indicator of cells actively fighting infection). These days I am very glad for my lab training. It helps me feel at least more comfortable with the information we're given.

They ordered another sepsis work-up, this time with a lumbar puncture. The clinical side of my brain said "of course they need to look at her spinal fluid." The mother side of me screamed "Get your hands off my baby!!!!!" I am really repressing all my emotions from tonight. I saw her alert for the first time in a long time and I knew I was leaving her to have this painful procedure. It was such an awful feeling. They did sedate her for it but I HATE that she is going through this. As a mom I tear up when Annie gets vaccinations. There are no words for how I feel when Natalie needs a spinal tap or they spend hours trying to place another IV.

The two bacteria they cultured previously should have been treated by the antibiotic course she just finished. Basically they think it could be a few different scenarios... she may have a clot somewhere that is acting as a hiding spot for bacteria and making it harder for the antibiotics to treat, that she has endocarditis and that is making it harder to treat (bacteria hiding out on a heart valve), or she has an infection with a different bug and it was only partially suppressed by the antibiotics and she needs different meds. There is also a possibility that she developed a fungal infection so antibiotics are of no use. They called in the infectious disease doctors for another consult.

Sorry if this is loaded with typos. I am barely awake.

We talked about the possibility of putting her back on the oscillator to see if she would do better on it than the conventional vent but then there are major drawbacks to that as well. It can be hard to maintain blood pressure, she would need more sedation, she would be more immobile and suffer from being in only two different positions. It is also harder to manage the lungs for various reasons. On the upside it may be more gentle on her lungs and she may oxygenate better. She said she would put her on it now if we asked for it. I asked what she would do if Nattie was her baby and she said she would wait a week or two to see how things go. If, in the meantime, she reaches a point of being at 100% O2 for days at a time or she is not satting high enough on 100% O2 that she will try it out sooner.

She also explained the tracheostomy to us to prepare for that possibly happening in the next month. They feel if she is going to be on the vent a long time it will be better for her developmentally since she is full term now. It will allow Natalie to move her head freely and practice facial expressions. Clearly a tracheostomy is a major decision and we have not reached that point yet. It is mostly being discussed now to mentally prepare us in case it becomes a need.

I am hoping that they culture whatever it is that is making her sick and I am REALLY hoping that the infection is the cause of the recent problems, although the antibiotics really did not seem to improve things last time.

She did talk more about the ASD and that they have been talking to cardiology and they still do not think fixing it is worth the risk of surgery. They also say if the hypertension comes back the ASD can act as a "release valve" and take pressure off the heart. The BPD increases the risk of the PPH returning so keeping the release valve open is a significant concern.

I asked about checking her airway with a scope and she does not feel that she has seen anything that indicates an airway issue. I am not pushing for a scope because I do not want Natalie put through any more medical procedures than are clearly necessary.

I do want to add that last night when we were living life hour to hour I retreated to read a magazine and distract myself (as if turning off my brain is even possible). Anyhow, I saw a picture of a little girl playing dress up and dancing. Suddenly I felt in my heart that one day Natalie would do such things. Some day I do trust that she will be a happy little girl with few cares in the world. Some day everything that she is battling and enduring will be worth it to her. I do believe this. While it is hard to turn away from fear when your beloved child is so sick, I am trying to look ahead and see our lives put back together again.

You know I am going to ask for more prayers and good thoughts. Whatever love and positive energy you can send to our Natalie Evelyn is much appreciated. Friday night I told her about all the people who are loving her from afar and want the best for her. When I say "our" Natalie I mean all of us as I really feel she does not belong just to her parents but to everyone who has had a hand at bringing her into the world and supporting her along the way.

Now I am going to shush myself and go to sleep.