How our lives have been touched by preeclampsia, cerebral palsy, epilepsy, feeding tubes, failure to thrive and whatever else comes our way
Wednesday, February 25, 2009
Anna Updates
Things are so good in the land of Anna. God continues to be good to us. I took Anna to the GI doctor on Friday and he was pleased with her progress and weight gain. He fussed at me a little for not having her allergy testing done but I explained that we are all doctored out and I just decided to try and introduce milk and soy into her diet and see how it went. He was not happy with that answer but happy that she is tolerating some milk products. She is still not tolerating soy but who cares. He wanted me to take her to an allergist to address the soy problem and I politely refused. I just don't see what good it would do. Avoidance of the offending allergen is the cure and we are already doing that. He said that now our goal is to increase her caloric intake even more by adding butter to everything- even giving her plain butter to eat by itself. This is so hard for me to grasp since I have tried to keep Kenneth and I away from butter due to our cholesterol and his diabetes. I cringe at the thought of straight butter in my baby's hands but I guess if it is good for her I will do it. She had a cat bite that got infected and has required antibiotics this past week but otherwise seems healthy right now (knock on wood). Early Intervention came out to see her yesterday and were so pleased with her progress as well. They cannot believe my baby who couldn't sit at 8 months is now running at 14 months. They are going to come out and see her again next month and then in April they will reevaluate her. She will probably not require any occupational or physical therapy sessions from that point forward. They think she may require some speech therapy but that isn't even for certain. She is just a tad behind in her speech but she also couldn't hear well until we got her tubes so it stands to reason that she is a bit behind and will catch up in that too. I am so thankful that her mind "woke up" and that she has just turned into a pretty normal kid. I was so scared for so long. We don't follow up with the neurologist until May or June and I am hoping they will discharge us from their services as well. If Anna is not a testament to the power of prayer, of Christ, of a mother's intuition, of Early Intervention, and of the human spirit then I do not know what is. I have seen a child transform before my eyes and I could not be more proud...
Saturday, February 21, 2009
Tuesday, February 17, 2009
It's No Secret
I suck at keeping secrets. Well, not all secrets, just my own. It is no secret that I want another baby. I have longed to have another baby but have been so terrified of reliving the same hell as before that I was not willing to try. I finally decided awhile back that I had 2 choices, either go see the Maternal Fetal Medicine (MFM) Specialist and see what my chances are or shut the hell up and quit whining about something I was too scared to do anything about. I can't stand people who whine about things but refuse to fix them and I realized I was quickly becoming one of those people. I made the appointment with the MFM and Kenneth and I went to see her. I had not planned on telling anyone about it but here I go again divulging my own secrets. I had actually seen her with both of the other pregnancies but for other issues. She reviewed all of my records and said that she felt I likely had some underlying autoimmune disorder and that was what had caused such an early onset of PE. She said if I did have an underlying disorder she could likely treat me with aspirin and lovenox throughout a pregnancy and I would get further along before getting sick. If I did not have the underlying problem my chances were 50/50 at best. I told her that my fear is not so much of getting sick again but of getting sick and being made to stay sick for so long and then having my child suffer for a lifetime because of it. I know that having a premature child has its own risks but I am willing to take those over continuing to "cook" a baby who clearly needs to come out. She promised to not let things go on for so long and to take the baby sooner rather than later. She also said my risk of getting gestational diabetes again was high but I am not too worried about that, it is easily managed. So they drew enough blood to restock all of the blood banks in this area and sent me on my way. Her office called me yesterday and confirmed that I indeed have an underlying disorder. I have Antiphospholipid Syndrome which consists of having a high level of anticardiolipin levels. Greek? Yeah, to me too. Basically it means my blood clots too easily and too much. I have "sticky blood." I am at a higher risk than the general population for heart attacks, strokes, DVTs, and PEs . I cannot ever take birth control pills or hormones and I should not ever smoke. I will likely have low platelets. In pregnancy it means that I will likely have many early miscarriages and a high risk of preeclampsia. The good news is that if I take a baby aspirin a day from now on these problems can likely be avoided. So she advised me to go ahead and start on the aspirin. I never thought I would be so happy to hear something is wrong with me. It explains so much!! So now we have to take this new information and decide what to do with it. Do we proceed and try again or do we call it quits? I don't know what to do. If only my heart and my brain could agree from time to time it would be so nice. I plan to pray about it for awhile and hope it becomes clear to us what to do. To remove the Mirena or not, that is the question...
Saturday, February 7, 2009
Her Mission
I was really trying to sleep in this morning, really. Anna is still getting up 2-3 times a night and I am so exhausted. (No need to tell me to let her cry it out. She gets up to eat and is truly hungry. I have tried everything I know to up her calorie consumption during the day but to no avail. Her freaking metabolism is out of this world.) Last night was my night to sleep and for Kenneth to get up and I wanted to take the full benefit. It was 8 a.m. and I was still sleeping with the sounds of Mickey Mouse Clubhouse in the background. Carly was in our bed watching tv while the grown ups tried to get a little more shut eye. Anna was *gasp* still asleep. All of the sudden I was awakened by the sound of my husband' s snoring. UGH!!!! Does anybody in this house think the mama should get to sleep? So I gave Carly a very important job (not meaning to promote violence but uuggghh). I told her to slap her daddy on the head each time he started to snore so that mommy could get a little more sleep. She chuckled and happily agreed to accept her mission. A few different times I hear a snore, then a slap, then a giggle. I continued to try to sleep. Then I hear Carly's sweet voice in my ear, "Mommy, I know I am supposed to slap daddy if he snores, but mommy, what do I do if he toots?" At that point I just had to get up, that girl cracks me up!!
Monday, February 2, 2009
Anatomy 101
I do not expect the general public to understand all of the terms we use in the hospital. I know that intubation, SIMV, AC, PEEP, pressure support, levophed, Diprivan, CABG, thrombocytopenia, leukocytosis are not words that everyone will be familiar with. However, there are a few words I think anyone should understand. If you don't know them, please do yourself a favor and familiarize yourself with general male and female anatomy before you visit a hospital the next time in order to avoid looking like a complete idiot. Yesterday I was caring for a man who developed melanoma in his eye which has now metastasized to his liver. He just received high dose chemo with IL-2 and is so incredibly sick. A side effect of that chemo is excessive swelling. The man was lying in his bed and has a foley (catheter) and a flexi-seal (a stool catheter or fecal management system) which collects stool (poop) in a bag when a person is having extreme diarrhea. The man's daughter was there and was questioning why if those things were in place and were working properly why there was a little wet spot on his sheet in that area. I explained that the man had extreme swelling of his scrotum which has swelled to the size of a cantaloupe and is now leaking a little fluid. She says, "What is a scrotum? Do you mean his balls?" AYKM? Ladies and gentlemen, please learn your basic anatomy.
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