Hard to believe...

It is hard to believe how much actually happened in such a short time. I cannot even begin to put into words my emotions and heartbreak over the course of all these events. Even as I look back on what I wrote the last couple of days. It seems so dry and almost emotionless. It reflects none of the tears, fear, and anger I experienced. Every single minute seemed like an hour. Even my husband doesn't truly know the extent of my feelings since he had to stay with the other children at home most of the time. Of course, I have no idea what he went through emotionaly either. I had guilt for being at work when it happened but I am sure he had feelings since he was at home while it was happening.

I am not even fully at one week after she was admitted yet so much had actually gone on. I appreciate everyone who has stuck around this long. Obviously it is going to take me a little longer than I thought to get this story told.

Well, I left off where I found out about her brain being injured....

Finding out about the brain damage and not knowing if she will ever wake up is the most heart stopping moment I had ever gone through. The even harder part was calling my husband and asking when he would be coming back for a visit. Having to tell him was terrible. Neither one of us was able to even talk much about it.

Who wants to talk about if their child is going to die?

I am a bit of a control freak and this was most certainly out of my control and it was very hard to hold it together. I did try to go home for short periods and play with the other kids. The child older than Angelica, Lucas, was born with a birth defect so the kids already understood hospitals and sometimes babies had to stay there. Fortunately, they had no idea what was going on or how near death she was.

They had such faith in the medical community. They always smiled and told me not to worry, doctors can fix everything. They also came to the hospital to visit. They never got to see her but we always talked about her and the nurses were so nice and compassionate.

To the hospitals credit, they made everything as nice as possible. They made sure I always had anything I needed or wanted. I was with Angelica for every moment she was not in procedures. They have been working, literaly, around the clock, to find a solution or a cause to what happened. I think I met with every specialist known to man.

They kept asking me the same things over and over. Did we do anything differently? Did she eat anything differently? Was she exposed to anything new? They could not find any biological factors so they were looking for environmental factors.

The geneticist spent the most time with us. Going over and over with me and my husband our family history. We both called our families to find out if there was anything in the family anywhere that might have happened similar. They were also curious about any dead babies, babies that died of unknown causes, and SIDS.

We moved several states from our families because it was better to be away from negativity and neither of us found our most immediate family very conducive to a healthy emotional life. So, that made this step that much harder. We rarely call or visit but now we are calling with some difficult questions and explaining that our baby may die.

I was raised Catholic, very traditional, celebrating the Tridentine Mass, which was still said in the old way in Latin. Due to many reasons, mainly my own uncertainty, I drifted from the church, from all church, and from religion.

When this all happened, I had some very irrational thoughts that this was my punishment for my betrayal to God. I began praying diligently and constantly praying the Rosary, begging for my daughter to remain with me.

My husbands fmaily had little to offer and mine was not much more helpful. There were some SIDS cases and premature baby deaths but that was so common on the environment and medical community of the time.

I remember criyng and begging the geneticist to figure it out. I kept stressing that my baby was perfect when I left for work. The only thing different, out of routine, etc was her vaccines. She had her vaccines on Friday. I remember that I said that over and over and over to every doctor. Finally as nothing conclusive was coming back the genetecist starting paying attention to me.

I told them all about Friday, even about how I didn't want her to have her shots that day.

Finally, the neurologist came in and said that he and the geneticist spoke at length rereviewed the lab work and he explained that he would like to speak with some outside consortiums, if I didn't mind. Of course I didn't mind. Speak to whoever-JUST FIGURE IT OUT!

She still hasn't woken up but her pheno levels were coming down. It would hopefully be any day and we will know if she would awaken.

The neuro came back a few days later and said he thinks the figured it out. He has spoken with other neuros across the country and one of his colleagues in Maryland was an expert for the Vaccine Court and after reviewing our case they came to the determination that this was a severe reaction to her vaccines, most specifically the DTaP, the P part for Pertussis.

I was told that reactions, especially this severe were extremely rare. Most especially because she recieved the aP for acellular pertussis. They had to change the composition of the vaccine because so many children were having these reactions to the whole cell pertussis vaccine. My daughter had a very, very rare side effect to the acellular.

Not very comforting news.

Also, it is irreversible.

But the neuro told me we wouldn't have to worry because the government already had a plan in place for these situations. Lawsuits were not allowed because of a federal law but we would be able to have all of her medical needs taken care of by a program, set up between the government and the pharmaceutical companies, called the Vaccine Compensation Program. He explained that he had already reported the reaction, we would just need to file.

How simplistic he made it sound.

He also said she was never to receive the DTaP again. They could administer it without the Pertussis.

She still hasn't woken but her pheno levels are almost nonexistent. I was now beginning to wonder if she would wake up. How do I tell the other kids? Would they blame me? I certainly blamed myself. How would I cope with a funeral?

As an aside to all this, the rest of my life rolled on. I was a restaurant manager and our family required two incomes. My husband was still working and thankfully my coworker, even in other stores covered for me so other than them, nobody knew I wasn't at work. My pay was still coming with no problems but I knew this wouldn't last forever.

How would I ever be able to go back to work? I felt such guilt for not being there for my baby. I cried and cried and cried and cried. It had to be my fault. Why wasn't I there for my kids? Why was I being selfish and trying to further my career? Was it really worth it? God forbid she didn't make it, how would I ever return to work?

I was very much into beating myself up at this point. But I never once blamed my husband. I look back now and am so glad that we didn't turn on eachother. I was the mom and it had to be my fault. I should have been there for her. If I had not been at work I would have been holding her and would have known right away that she had quit breathing. She wouldn't have lost as much oxygen. Her brain wouldn't be as injured.

I was told that if my husband had even been about 30 seconds longer in picking her up, she wouldn't have survived this long. Apparently when he picked her up it startled her system and she began breathing. I don't know why I called home and made him check on her but I am glad I did.

We were also told that it was a very good thing that she did not get her shots until 3 mos (thank goodness she had RSV-who would have known I owuld have ever said that?) because she wwould have died for sure at two months, if not from the reaction itself then frmo the meds necessary to stop the seizures.

Finally!!!!!!

She is waking up!

The nurses were so excited when they came to tell me. I really don't think they were expecting her to wake up.

The first thing I asked as I was holding her was if I could feed her. I was so excited to be able to look into those gorgeous eyes that I thought I would never see again. I think I wanted to feed her to feel like I had my baby back. To feel normal again. A mom nursing a baby. All would be well in my world. My husband was already on his way. He, too, was so excited.

They explained, in sort of a "Let's just humor you" kind of voice that I could attempt to nurse her but with the extent of her brain damage and where the damage was that she may not be able to nurse. That I needed to be prepared for the fact that she most likely will need a feeding tube.

But they let me try. The nurses were so great. Nobody really thought she would have the sucking reflux necessary to nurse but they wanted to comfort me in any way possible. They got us comfortable in a chair and I held my baby in my arms for the first time in over a week and a half. That alone felt so wonderful.

I went to latch her on, crying, knowing I am fighting a losing battle, trying to return our life to some semblance of normalcy.

She latched right on! Started nursing like she had always done it and hadn't missed a meal!

The nurses were shocked! The next thing you know, we had a circle of people around us, doctors, nurses, all in awe of the fact that she was nursing, sucking, swallowing and apparently doing fine. I am a very private person but I was so happy that I didn't care who watched. I just rocked and talked to my beautiful baby girl.

The same nurse who was there the night we were admitted helped me to lay her down and gave me a hug. He has been there for her ever since that night except on his days off. With the exception of a break here and there he cared for her and her alone all that time so it seemed as though he was as invested in her recovery as we were at that point.

All I could keep telling everyone, with tears in my eyes, was "I told you, I told you, I knew she would wake up. She knows her mommy."

This is when the doctors told me all the hard stuff was yet to come. Through all of her testing they told me that she would never be the same baby I had two weeks before.

They told me that she was basically a newborn all over again so she would not smile and would not do much if anything.

I was also told that I would stay for about a week in that hospital but we would need to start on a plan for the future.

I told them that I knew her plan for the future. She would come home and be loved by her family. They didn't think that would be enough. Whatever!

They began discussing with me a rehab hospital. They thought she would benefit from extensive therapies before returnign home. They wanted to send her just a few miles away to a rehab clinic connected to that horrible hospital I didn't want to go to in the first place. I fought it but the neuro convinced me that it would be the best thing.

Just want to interject here that I lost all faith in doctors and have no place in my life for bullying. I regret giving in to him and I should have questioned him more and gone with my gut instincts. I have always trusted everyone in the medical community. I trusted what they said about vaccines and now I was trusting what he was telling me about the rehab hospital. I don't have any trouble with those that do have all the faith in the world in their doctors and trust every word but I have learned through hard experience that while they did go through a lot of training and experience, they do not know everything. They advise based on what THEY know best not always what is actually best. This is simply because they cannot know everything.

All went well the week following her awakening. We were placed on the regular peds floor. Therapists began coming in. I oculd tell she was not the same baby. She was very stiff. She was very irritable and she had never been before. It was very stressful relearning everything, basically starting over. Imagine you have had three wonderful months with your baby just to have it snatched away and have to start all over. Your baby is no longer comforted by you. She eats but is rarely content. She is so stiff that is hard to hold, let alone be comfortable holding. And all the while all you can do is compare. You compare your "old" baby to this new foreign baby. Because it truly does feel like an alien invaded and took over your baby and now you feel so inexperienced and inadequate. You can't help but cry and remember what it was like to have that happy giggling baby.

But I was so glad she was alive.

This is where the doctor pulled the right strings to convince me to place her in the rehab hospital. He explained that the brain damage was so very severe that they are hoping, with her being so young, that some of the brain cells will get kick started or regenerated and bring back some function. She was stiff because of the stroke. Some stroke patients get very slack and limp but Angelica went the opposite and was very stiff. They were hoping that the therapies would loosen her. Inpatient would be best because they would do so much more therapy each day being right there in the hospital. I was told not to worry. I would be able to sleep in her room just like I was now. Nothing would change except the facility.

I agreed because what mother wouldn't want to do what is best for their child?

I just could not stand that hospital because of previous experiences and I disagreed with some of their administrative policies, they were, and still are, fundamentally wrong.

Also, this was about the time that I had to make a decision about work. They could no longer shield me so I would need to return to work, even if on an abbreviated schedule (which they could still hide or take a leave of absence or quit. I had a boss who did not like me, personally, nothing to do with my work she just didn't like me. She told me so. She even told me I would have been promoted if I didn't have the kids. She didn't like my children or that I could balance everything (she didn't have any children). She told me this on several occasions. The other managers knew this and tried to shield my absences from her. To understand better, you need to understand the company I worked for. They required relocatability. At a moments notice. I already survived on transfer out of state and fought my way back. I was so very fortunate to be assigned to the store so close to the house and knowing how severe Angelica was I didn't want to risk it. If I took a leave of absence then she could put me anywhere she wanted to when I returned. I could be in a store up to an hour away if I wasn't transferred out of state. I needed to have consistent care for her at this time and did not want to be transferred so I went back to work. They were very flexible with me. I still slept at the hospital and spent a lot of time with her but I was the main and highest wage earner and it really was not an option for our family for me to just quit.

I know, I know....many of you are going to judge but until you are there in that situation...

While I loved Angelica, I still had six other children at home counting on my income and my insurance. Public assistance really wasn't an option considering it wouldn't have covered the bills anyway. To protect the future and my family I needed to work.

Yes, looking back, I can't believe I did it. I don't know how I did it. I think work was helping me to cope. Life felt out of control and I still had some control at work.

Would I do it again today? Probably. There really was no other option. We had no family around. Nobody came down to help with the kids so when they weren't in daycare, they were with my husband which ruled out his working a second job.

It was such a terrible and isolated time period. We had to go through all of that pain and struggle all alone with no support system. All my husband and I had were eachother and the other children. We became a much stronger unit.

So, we tranferred to the other hospital.

My initial reaction was ugghhh.

It was not a peds friendly facility. Mostly older patients and the place was so antiseptic. The staff was also not so friendly.

We got settled and started to meet the staff.

Immediately, I noticed a change in...I don't know...attitude? treatment? It is hard to pinpoint. But it felt like going from Hawaii to Alaska in five minutes.

They immediately made me begin going over and over again how it happened. I told them step by step how it happened. I even told them that it was determined to be a result of her vaccines.

I will never forget that snotty doctor going "UH-HUH!" so smugly.

The staff did not treat me very well. I didn't think much of it until I cam in after work and the bed was stripped and I could not get the staff to get me any bedding. They would rarely leave me alone with her. They were always bugging us and not allowing her to have any rest time just being snuggled. Which was so important to me since I was working and cherished every moment with her. I couldn't wait until she would be released to return to our normal (or as close as possible) life. But they weren't being very forthcoming as to how long I would be there.

I have had bad feelings the whole time I have been here. I can't even begin to talk about all that I endured while there. The final straw was when I came in and and noticed that her bottle had formula in it.

Now this when you should remember how I stressed earlier in my story about how much milk I had frozen, not to mention how much I had stored while she was in her coma, on top of the fact that I was still pumping at work.

I immediately asked the nurses why she was drinking formula. They told me she did not have any more. I was shocked! I ran to the refrigerator and the freezer was empty!!!!

Where did her milk go??

They gave me some ridiculous story about how a mom was discharged that day and Angelica's breastmilk was mistakenly given to her. I could not fathom how this happened since there were very clear medical labels on each bag and container.

Now, after knowing what I do about the situation, I think they threw it into the trash.

There was no apology, nothing.

This all happened within the first four days in this hospital.

But Angelica has never had anything but breastmilk so she refused to eat unless I was nursing her or if it was breastmilk. The staff said that they thought something was wrong with her. She was refusing to eat when I wasn't there. I pumped at work but not enough to keep up with their "schedule". So, she started to lose weight. Somehow thier treatment of me worsened. I was no longer permitted to go into her therapy sessions. One of the members of the "treatment plan" was a psychiatrist. Well, I thought this was dumb and told them so. She was four months old. Surely, she doesn't need help coping with the changes in her functions.

But the psych kept coming around. I was more bothered because they seemed to schedule all of these things when I was there vs when I was at work. This boiled down to me barely seeing Angelica. I was still sleeping on an empty bed, with no sheets. Nobody seemed to know where they were or how to get them. A call to Admin did nothing. They also kept me up all night. I was never allowed to be alone with my baby.

The psych kept quizzing me about my feelings. I told her I was coming to grips with everything. I couldn't have prevented it, I couldn't have known it would happen, it was the vaccines. I wasn't even really angry yet, still in shock.

Then she said something that really angered me. She asked me if I was sure I could not have prevented it. What about my husband? How much did I trust him?

This was my first peek at what was to come.

They were discussing discharge. It should be in about a week. I could not wait. This place has been horrible!

My next visit (I have now been there only one week) was from a social worker (DSS).

Once again, I was quizzed about how it happened. How much did I love her? How much did I trust my husband? They knew I did not do anything since I was at work but how much did my husband love her? Was she planned, wanted, etc? What was it like having a large family? We didn't really want nor could handle seven children, could we?

To say I was angered and insulted is an understatement!

Are they accusing us of harming her?

This was already determined. I called the neuro and told him what was going on and he came right over. He spoke to their staff. Went over her record with them and explained his diagnosis and also explained there was no trauma, that this was an effect of the vaccines in her body.

The doctor of the rehab came in after he left and told me that she didn't care what the findings were, she knew our kind. You have a bunch of kids, you regret it, then you decide to thin it out a bit.

She said she didn't believe his diagnosis and she was going to find the truth. She said she just hadn't figured out how we covered it up yet, but she will.

Now all the pieces fell into place.

The stripped bed, the missing milk, the cold treatment by staff.

I was livid!!!!!!!!

Well, I know this is sort of a bad place to leave off but I have covered a lot today and need to move onto other tasks now.

I will pick up here next time because the hospital was not done with me yet!

Thanks for hanging in.