Day 27
I can’t believe we have been here for 27 days… We are nearing Maliyah’s record of 30 consecutive days in the hospital when she was first born and it’s looking like we will be passing that up this weekend. For those of you who have never experienced a long hospitalization (and I hope you never do), to put it simply, it seems as though life in the hospital is in its’ own realm, and everyone else’s lives around you moves on. Our lives adapt to the schedule of the hospital and it’s employees. Waking and sleeping according to their schedules. You also realize that you are not alone in life’s drama. Every one admitted here is fighting their own battle. I had the privilege of meeting a couple who came to Hawaii on their babymoon and the unthinkable happened. Their baby came early at 28 weeks. I met them when I was having a particularly rough day and they just spoke words of comfort and positivity - telling me to keep trusting to God. They were so uplifting and compassionate with me, even though their little baby boy was struggling for his life. They will never know how much those encouraging words meant to me. I realized that, yes this world is full of hardship and suffering but there is still so much good. It is up to us whether we want to spread it or not.
Last Sunday, we were faced with an almost impossible scenario. Due to Maliyah’s persistent fevers we knew that Maliyah was still fighting an infection, and because of this we had a very frank conversation with Maliyah’s surgeon. We had run a bunch of tests to see if there was any thing else the fevers could be related to. The tests all came back negative. This meant that the infection was still most likely in the abdominal cavity. The challenge with this is that 2 weeks after the initial surgery, the abdomen goes into an inflammatory healing process that makes it very risky to go back in to surgery. Apparently, if you tried to go back in to clean out the infection you most likely would do more harm than good. We were way past the 2 week mark so….a 4th surgery was not an option. He also said that it’s very hard to treat the abscess with antibiotics due to it’s location. You see, with it being in the abdominal cavity there is very little blood supply if any to that area. Thus the antibiotics would have a hard time reaching it. In other words, there was not much we could do.
Meanwhile people from all over the world have been writing me saying that they are praying for Maliyah. I believe that when things look impossible to us, that is when God steps in to show us His love and his power. He turns impossibilities into miracles.
The last few days have given us hope. Possibly, dare I say it, a light at the end of the tunnel. Maliyah has gone almost 3 days without a fever it seems like her digestive system is slowly waking up! She is having bowel movements and her NGT output is becoming less and less. It seems like we are headed in the right direction. We are cautiously optimistic. One thing our pediatric GI doctor always emphasizes is that any thing with the gut takes time and patience. Like the tortoise and the hare, slow and steady wins the race. We just have to let Maliyah’s body do her thing. They are allowing her to slowly try clear liquids and want her to take things slowly, due to her digestive system not being up to speed yet. Maliyah is having none of if it. As soon as she gulps down her allotted one ounce for the hour she demands more. She turns into a sort of Dr. Jekyll and Mr. Hyde. Super happy and excited while drinking, then sulking and pouting for the remaining 59 minutes until she is able to have another ounce. This is all she think about. I can’t blame her for feeling the way she does. She hasn’t eaten or drank anything for 4 weeks and the taste of juice is probably making her taste buds dance. As a mother, this pulls at my heart strings to not be able to give her what most would consider the basic necessities for life. Hopefully we will progress from this stage soon.
We still have a long road ahead of us but we are so thankful for the outpouring of love, support and especially prayers in our behalf. Everyone’s unexpected generosity has been overwhelming and we hope to one day pay it forward. In the mean time our little miracle continues to improve.
