Monday, September 27, 2010

So Many Changes

It has been a long time since I have written. I am happy to say that I had a beautiful little baby boy on December 30th. He was born at 35 weeks gestation and is happy and healthy and has brought me so much joy.

I was a crazy time. I had just been diagnosed with pregnancy induced hypertension and placed on bedrest the week before Christmas. During that same week, my 12 year old developed a fever. This also happen to be the "swineflu" season and it was everywhere. I assumed that he had the flu. However, as the days past he developed no other symptoms aside from fatigue and no appetite. He never had a sore throat, vomiting, diarrhea or anything else. After almost a week, he suddently became very yellow (jaundiced) and therefore we immediately took him to the hospital. We discovered that he was in liver failuer and were transferred to Children's Hospital in DC.

Needless to say that the stress and lack of bed rest was not helping my pregnancy but there was nothing in the world that was going to keep me from being near my 12 year old. Several doctors saw him and could only say that they suspected some type of virus caused him to have hepatitis. He tested negative for everything (EBV, CMV, HIV, Hep B and C, Strep, Flu).

After a few hours of being there, I thought that my water had broken. I was moving stuff around in his room when I felt that gush. I was shocked to find that it was blood and not clear fluid. Fortunately my cousins had just arrived to see Julian (my son) and therefore my husband was able to rush me to the hospital. I was evalated and diagnosed with a cervial polyp or tear and discharged. When I returned to my son's hospital, he was on life support. It was devastating. There were still no answers and he was on the maximum doses for medications to support his blood pressures, he heart rhythms were abnormal, his fevers about 105, his platelet counts (which is the component of the blood that allows the body to clot and not bleed out) was down to 3 when normal is 150-400. He was bleeding in to his eyes, lungs, brain. He was unresponsive. I felt like my life was falling apart and couldn't imagine how I was going to deliver a baby or be a mother to a newborn when my 12 year old desperately needed me and worst yet, what if he didn't make it.

My son's nurses felt very concerned and strongly encouraged me to be seen by my OB (whom was not the person that evaluated me at the hospital). I agreed and went the next morning and was told that the baby would be delivered right away because my doctor felt that I had a slow tear in my placenta and my blood pressure was out of control. I literally fell to the floor crying because I didn't want to stay away from Julian for that long but had no choice.

My doctor was awesome, he spent most of my labor pacing around in my room. He did everything that he could to ensure that I would have a vaginal delivery knowing that I would be leaving the hospital as soon as I possibly could and he was right. Carson was born shortly after 7p and was taken to the NICU for some help with his breathing. After a few hours I left and returned to Julian's side. Carson was in a Maryland hospital and Julian was in DC.

Carson came home in about a week and Julian was seen by a new doctor the CNMC that had come from Cincinnati Children's Hospital. He recognized the rare illness that was attacking Julian's body and began treatment. He was diagnosed with Hemophagocytic Lymphohistiocytosis (HLH). Julian had received several blood transfusions, had swelling in his brain but was continuing the fight for his life. He finally began to turn the corner in the first few days of January. New Year's Eve was his worst night where we thought that we would lose him.

After several weeks in the hospital and going through rehab to learn to walk again and gain his strength, he finally came home. He is now back to being the quarterback of his football team and thriving. We are so blessed!!!! I learned the value of life in a way that most never will.

Unfortunately the only cure to HLH is a bone marrow transplant which at this point would only be done if Julian were to relapse. He is in remission with a risk of relapse. However, the doctors have told us that no one can say if and when he will ever get sick again and it is this reason that we won't do a BMT unless he relapses. That brought us to deciding to use the 2 frozen embryos we have. We want to store the cord blood which was not saved with Carson.

We had the embryos thawed last week, one surivived and was trasnferred on Septermber 22. I am not sure what to feel about everything. I am still not recovered from all that happened. Today is 5dp5dt and I had a negative. I know that it's early and I hear that with FET's, you get an even later results. So, pray for God's will and that I can handle whatever that might be.

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