I remember walking in the "mod" for the first time. Mind you, not the first time I had been there, but the first time I physically walked in . It was on Monday. I walked in to the unfamiliar room lined with isolettes on both sides. Seeing babies that were so tiny it was hard to believe you were looking at an actual breathing, living baby. When I happened to meet eyes with a fellow parent, there was a hollow kind of sad look staring back at me. Lillian was in a teeny tiny room barely large enough for her warmer and the ventilator at the very back of the room. So not only did I feel completely overwhelmed, it felt like I was intruding on the lives of all the other families living there. As we made it to the room, there was her "team" doing their rounds. Sometimes, they envelope you in to what is going on, other times they act as if you've never stepped foot into the room. As I washed my hands for eternity, the main doctor stepped out, introduced himself and began to tell us some of the issues they were uncovering. Pulmonary hypertension (high blood pressure in the lungs) heart problems...kidney problems....possible genetic testing. The pulmonary htn being the main concern . He explained to me it would be some time before I could hold her because disturbing her body would only put her in a more precarious state. I knew it was important for her to be healthy, but I was so desperate to hold her. I hate to even speak it, but I was afraid she would die before I got to hold her in my arms.
In those first few days, I recall the main doctor discussing discharge plans with me and how much follow up we'd be needing to do for her regarding all her medical problems.
Matt (my husband) was barely able to be at the hospital as he was trying to handle the children we had at home and continue to work. Bethany (our oldest) was only 10 when Lillian was born. So we had a 10, 7,5, and four year old at home.
I could barely walk as I was dealing with my recovery. Not only was I sore and in pain from stitches, I had had an external aversion...( Lillian had been breech so my doctor physically turned her externally, then following that, I'd had an amniocentesis)my feet were so huge from swelling I couldn't wear shoes for two weeks. My blood pressure was still very high and of course the post partum was rough. I remember taking showers in the morning and feeling so dizzy, I thought I was going to pass out. It was very difficult to sit on the shower seat, so I really didn't have too much choice in standing.
I was pumping every two hours around the clock although the nursing staff told me not to that I need to sleep through the night. I just couldn't do it. Not only was falling asleep a huge task, but the only thing I felt like I could do in a helpless situation was provide milk for my sick little baby. Of course, I was barely getting anything out and the first time I actually got a couple ounces, I was so excited, I rushed out of my room to take a shower and locked myself right out. I was making a call to securtiy at some ridiculous hour of the morning.
After a few days of waiting, her pulmonary hypertension started to get better and i was able to hold her, but due to her being unstable, I'd have to commit to holding her very still for very long periods of time. Not only was it hard to hold her, it was hard to be able to hold her. She required two nurses to move her. When you are in a room with so many sick babies, it's not always easy to procur an extra set of hands. I know that sounds like an easy task, but when you are in a lot of pain while sitting and you are desperately worried you are going to kink the ventilator...and you're drinking 2 liters of water to help with milk production, it tends not to be a very relaxing situation. I had to remind myself to breathe. The joy, oh the joy of it was just indescribable.
I had no idea of how rough the road was going to get.