Lilly's Story - Preemie Ward

It was such a relief to be moved to the preemie ward for several reasons. Of course, just the fact of Lilly no longer being in intensive care meant that she was getting better. This was also a place that had more visiting hours and easier conditions to spend time with our sweet girl. Peter’s sister, Christina, who had been caring for Cooper every day was finally able to get in and see Lilly. We walked in that first afternoon and donned our protective gowns, then we went into Lilly’s room and started putting on our rubber gloves just as we had been doing on the intensive station. The nurse gave us a strange look and asked us what we were doing. She let us know that we didn’t need gloves to touch our own baby. We could actually touch Lilly’s baby soft skin with our bare hands! It is amazing how this simple thing to which new parents typically don’t give any thought was such a precious treat for us.

But the very best part of the preemie ward, naturally, was getting to hold my baby for the first time in 5 days. In fact, after the nurse learned that I had not been able to hold her in all that time or even touch her with my bare hands, she got me set up for kangaroo care which is simply holding the baby skin on skin. It felt amazing to feel her warmth on my skin, and all I kept thinking was that she felt like a little tree frog on my chest. Unfortunately, due to her pain levels, I was the only one that got to hold her that first day in the preemie ward. Peter totally got the shaft.

Just as in the ICU, Lilly got her own room due to her Rotavirus. She is such a princess. Each day that we would enter the preemie ward, we would check Lilly’s chart to see her weight and vital signs and then wait for one of the nurses to “unplug” her, meaning to disconnect her ECG and pulse oxy cables. After she was unplugged we could hold her. It was clear in the beginning that Lilly was still in a lot of pain because she would wimper and let out little cries whenever she was moved, and that was even with lots of pain meds. We actually had to sit and let the nurses move her from her bed to our arms. It was kind of intimidating to hold a baby with so many tubes and wires coming out. She had 6 IV lines in addition to her cables and also a tube in her nose going down to her stomach. Once I had her in my arms, I didn’t want to move out of fear that I might cause her additional pain or press too hard on one of her tubes causing it to clog. It didn’t matter if my arm was hurting or if my legs had fallen asleep, I just wanted her to be comfortable. She was very sleepy from the surgery and all the medicine, so we didn’t see her with her eyes open for several days.

After about a week into Lilly’s stay in the preemie ward, they dropped her pain meds and the nurses started letting us take on some simple tasks. Lilly had wonderful nurses caring for her. They clearly enjoyed their job and were so nurturing to our little sweetie. They were also very patient with us as we learned how to care for Lilly. You would think that with a 3 year old I would be a pro at changing diapers, but maneuvering around all those lines and keeping them all straight and in the right direction made me very nervous in the beginning. We also had to learn how to empty her colostomy bag, how to bathe her, and how to change out her bag.

Peter and I discussed early on in intensive care how there were some parents there who looked like “professionals”, so relaxed and routined as if they had been in this situation already for a long time. We wondered how long it would be before we would waltz in there as “experienced” parents of a sick child. It was surprising how quickly this all became our new norm. And learning how to handle Lilly’s IV lines, cables, and colostomy bag was very much the same way. We were all thumbs in the beginning and after a very short time, we had it all mastered.

Most days as we would arrive in Lilly’s room, we would see that her IV lines had been moved. The positions would vary between each of her hands and different places on her head. Clogged lines meant new sticks, and new sticks would mean lots of crying and more pain for our tiny baby. As you can imagine, we would be delighted at the removal of each IV line in the last week of her stay. Again, a great indicator that Lilly was getting better, and it would also mean one less line that could clog and require yet another needle.

It was also in the preemie ward that Lilly started getting some of that liquid gold that I had been working hard to make for her. First they just dribbled some on her lips so that she would learn the scent of my milk. Then they began giving her 3 ml from a syringe. After a couple days, she got bumped up to 8 ml, then 11, then back down to 8, and up from there. Each addition required a 12-24 hour period to observe how she was handling it. Around this time, she started crying from hunger and giving her pacifier a real workout. It was just heartbreaking to see her crying from hunger. She was getting fat through her IV to maintain her weight, but nothing in her hungry little tummy. When the doctor saw all these signs of hunger, she gave the go ahead to crank things up and go for 20 ml.
And on up Lilly went until she reached the point in the last few days that she could have upwards of 80 ml.

In the last two weeks that Lilly was there, I was finally allowed to actually nurse. I was so excited from the beginning, however things didn’t go as I hoped they would. First I had to weigh her before and after nursing and record the amounts so she had to drink. After having so many bottles, Lilly had a hard time latching on and once on she would get very frustrated. Milk didn’t flow from me as quickly or easily as it did from her bottles and she let me know that she was not having it. I would battle it out with her for about an hour at a time and upon weighing her would find that she only drank anywhere between 20 and 40 ml, when she would typically have 80 ml or more from a bottle. Then, of course, she would start crying after about an hour from hunger and we would start the whole thing over again. I decided from the start that I would simply be persistent and was determined to make it work.

Here are pictures from Lilly's time in the preemie ward. As you can see, she looked better and more beautiful each day.