Thursday, October 7, 2010

3 years ago...Waiting

I didnt take any pictures when the girls were in the hospital. I remember thinking, "Who in the world would want to remember this?" I wish that I had now. Luckily, a much wiser woman, knew I would want pictures later and took a couple and saved them for me. Thank you, Barbara Fox! So we only have a couple, but I look exhausted in them!

Things actually slowed down quite a bit after we received the girls MRI results. It was a lot of waiting while they were running tests. We also had to do a personnel swap in my family. I love my mother. She is probably my best friend. She was a HUGE help with the girls after they were born, taking the night shifts with me. But, my mother does not do well with hospital situations. I called my sister and informed her that she had to come and get mom because she had boarded the "crazy train" and wasnt coming back any time soon. She had stopped eating and was freaking me out more than she was helping me. I thought that a couple days at home in Albany with my niece, Lily, who is her favorite grandchild anyways, would do her some good. Not to mention getting some sleep in her own bed, all night. So, my dad came and picked up my mother and my sister took her place.

Looking back now, I have a different appreciation for Katie coming down. At the time I just thought, "well of course she will come down". Thinking back on it now she left a 3 month old, breast feeding child at home to be down here. She left a VERY attached almost 3 year old at home. And, my wonderful brother-in-law (this is one of the few times you will see me refer to Brian in these terms, so take it all in Brian!) who allowed her to leave her two children with him. Now that some time has passed she does blame the trip for Jamison stopping breast feeding so early, but whatever. Katie and I were basically our own PICU dairy with both of us pumping at least every 3 hours. They actually gave us our own little fridge to store the milk in. Katie flew back home to Albany the following week with a cooler of breast milk. I took home 90 ozs from our entire stay at Vanderbilt. When Katie got home she realized that she had accidentally taken a bag of my frozen milk. She was still slightly convinced/paranoid my milk was poisonous (see next paragraph) so she threw it out. (A gasp is heard around the world from any mom that has pumped at the fact someone threw out 6 ozs of liquid gold!)

Soon after the MRI results we met with a genetics team (another team added). They informed us that they thought it was a genetic disorder that the girls had. There was something that their body was not able to metabolize and as a result there were these "infarctions" in their brain. Well, the only thing the girls had coming into their bodies was breastmilk, so I went through a brief freak out moment were I was convinced my breast milk was poisonous. They assured me it wasnt. Then the reality of what they said kind of sunk in. A genetic disorder. They said it was probably recessive traits that we both just happened to carry. That meant this was something that Mark and I had given to them. That was a hard pill to swallow. Then the completely selfish side of me came out. If this is something that Mark and I passed on to our children, there is no way that we are having more children because I am not going through this again. By a doctor telling us that, they had basically made the decision for us about having more kids. I was so upset about the "decision" being taken away from me. It is one thing when you decide to not have any more kids, it is another when an impossible situation is presented to you, taking that decision away.

So the testing began. Everything they tried came back negative. Finally they came to us with the fact that here were 12 metabolic disorders that were possibilities of diagnosis's for the girls. All 12 were treatable, which was great news. Unfortunately, if they did not have one of those 12 metabolic disorders, they told us that whatever it is would be rare, and probably untreatable. So, I actually began to pray, and ask others to pray, that my children have a metabolic disorder. Now there is a prayer that I never thought I would be praying. But, that was my prayer.

By this time, news had spread throughout several avenues, about the girls. We received emails, cards, facebooks posts from people from all over the country that were praying for our children. One night, one of the night nurses came into my room and asked us if Ruthie and Maddie were the kids that the facebook group "pray for ruthie and maddie" was about. It turned out that it was the number one facebook group in Nashville that day, and it popped up on her screen. When Ruthie was moved up to the regular floor on Thursday, across the hall from her sister, there were no visitor limits like in PICU. I am pretty sure that Vanderbilt wished there was by the time we left. Both the reception area in the main lobby and on our floor had pre-made "Sullivan" visitation passes since every one that came by requested one. We were flooded with visitors from church and our families. We were never without help or company. Every night people brought us meals, or came and sat with the girls so we could go out. One of the Bible classes from church collected money for us to help pay for medical bills. Every shift the nurses would comment on all of our visitors and how much support we had. All of of our visitors were such a great testimony to the support and genuine care that Christians have for one another.

On Friday the girls were doing great. If you had not just told me that there was a pretty significant chance that they could be vegetables for the rest of their lives, you would never know there was anything wrong with them. They seemed like perfectly normal babies, but we knew different. All of the teams had basically decided there was nothing else that they could do for the girls in the hospital, no matter what the results were from the metabolic disorders test. They said we would just have to follow up with several appointments, so they prepared to discharge us. Neurology requested a follow up MRI to be done on Ruthie before discharge. For some reason, unknown to me and my sister, it is IMPOSSIBLE to get an MRI and reading over the weekend at Vanderbilt. Trust me, we nagged every on. My sister actually went down to radiology to see if she could grab some on. So, we were stuck at the hospital all weekend, basically just hanging out and waiting.

A speech therapist (another team) was called into help also. When they removed the feeding tubes from the girls, they had both lost their suck reflex. So we started working with them to try to re-teach them their suck reflex and work on latching again. This eventually was the reason that I had to stop breast feeding the girls and went to bottles. Even though they re-learned how to suck, they could not get back to breast feeding the way they were before. It was taking over an hour for each baby to feed, which doesnt work well when there are two babies and only 3 hours inbetween feeds. So, I pumped for 6 months and gave the girls bottled breast milk. The 90 ozs that I had stored up from the hospital stay was a great help!

The girls were officially discharged from their infectious disease team, so they were allowed to be taken out of their room. The girls were doing so well that the nurses told us that they could stay in each others rooms, without machines during the day, but at night they had to be in their own rooms with monitors, just to make getting vital signs easier on the night staff.

So we waited until Monday to get MRI results and be discharged.

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