Sunday, May 29, 2011
Saturday, May 28, 2011
Sleeping in a hospital is a challenge in itself, but add to it my abnormal sleep patterns and James didn’t stand a chance. Including Nadia’s birth, we stayed at Vanderbilt Children’s Hospital for five weeks. During that stay, James and I shared a slightly-larger-than-twin-size pull out couch. It was wide enough that we could lie one of two ways; either we both curled up facing the same direction on our sides or else one (and only one) of us could be on our back. There was no room for movement or rolling over during the night. To fit both of our pillows on the bed, we had to turn them lengthwise. However, it was a place to sleep and greatly appreciated by the worried parents of the very sick baby.
I don’t sleep well under the best circumstances, much less with a deathly ill child, a guilty conscience over neglecting the healthy child, exhaustion, and confusion, with constant interruptions…it was not pretty, especially for James. James and I developed a working routine when we were allowed to feed Nadia. I would stay awake until after the midnight feed and final pump of the day. I would then crawl into our “bed” and set the alarm for 2:45, getting about an hour of sleep, for the next feed. James would wake to the alarm at 5:45 for the next two feeds and stay awake to study and/or work on his comic. I would sleep until about 10:00 am, waking frequently for doctors rounds as that was my opportunity to ask questions and listen to the things that weren’t being shared with us as parents.
Several nights, dreams overtook my consciousness to the point that I had a hard time waking up from them even after my eyes were open. Again, poor James. One night, I woke up itching my sweaty head. I shook James awake in my distress to tell him, “Patrick Dempsey gave me head lice!” It was not until he, with extreme patience, asked for some clarification that I realized that I was no longer sleeping. Damn that Patrick Dempsey…
Another morning, James jokingly asked me about the flood last night. What? Apparently, he had awoken during the night to me leaning over the side of the “bed” staring at the floor nearly screaming, “OH. MY. GOD. It happened again!” When he asked what had happened again I told him, annoyed, that there was water all over the floor again. Just to clarify, the floor to our hospital room had never flooded while we were there.
Snoring. Yes, I am a lady of the upmost class, but will admit that I snore. James does, too. I am embarrassed to think about how many hospital people heard each of us going to town. I am a light sleeper usually, but did start to get used to the constant interruptions associated with hospital living. There was one time that I woke up to the entire surgical team leaning over us while sleeping. CREEPY. They were trying to wake one of us gently, but I didn’t register hearing them at all until I opened my eyes and saw a group of people hovering directly over me. I took care of waking James with my scream. Once, while talking to Dr. Mace, I had to wake James because he was snoring so loudly that I couldn’t concentrate on the information she was giving me. My personal favorite startled-awake mid-snore moment was one I got to witness and not be embarrassed about being involved in. We were on the fourth floor with an outdoor courtyard outside our window. The hospital is expanding by building up the area of the courtyard all the way to the 9th floor, adding an additional 8 bed capacity per floor. We got to see the start of the project, the clearing out of the trees and planters, pulling up the concrete floating foundation, etc. There was one morning that the workers were sealing off the windows and the material that they were using was leaning against the wall right beside our window so they were constantly coming up to our window for the next supply. From inside our room, the window started roughly waist-high and our couch/bed was located directly underneath it. James awoke by the rustling noises outside our window and looked up to see a construction worker “peeping tom” looming above him.
Wednesday, May 25, 2011
Friday, May 20, 2011
Friday, May 13, 2011
The Peaches are all home, together as a family. We got released from the hospital last Friday after one final blood transfusion for low hemoglobin. Nadia’s Neutrophils were extremely low and even lower than the last CBC. These are the white blood cells that are the first to respond to infection making Nadia susceptible to germs.
Our first week home has been a bit of a challenge, but a welcomed one for sure. We have struggled some balancing attention to both girls, establishing a new routine, and getting adequate amounts of sleep. I finally unpacked my bag from our hospital stay yesterday (I am still living out of my toiletries bag). Sofia is very happy to have us home and showing signs that she is concerned that we will leave again. She is requiring lots of extra cuddles, laughs, and time outs.
Nadia had a Pediatrician appointment on Monday. She had gained some weight: 6 pounds 12 ounces (3.05 kg) and received a great review from Dr. Mace. Our biggest victory of this appointment was learning that we could mix her prescription with her milk. She HATES the medicine that is supposed to help with her reflux so much that she gags on it and will force herself to vomit anything in her stomach. Mixing it with the milk has worked like a dream so far. Dr. Mace also suggested postponing next Thursday’s morning line up of appointments at various clinics until Nadia was stronger, something James and I were very thankful to hear.
Today, Nadia had her weekly follow-up appointment with Dr. Peroskie (HemeOnc). I am pleased to announce that her CBC looks great! While still neutropentic, her neutrophil count is at 1100 (she was in triple digits when released from the hospital a week ago with diminishing numbers). A “normal” neutrophil level is 1500 and up. She measured at 19 ½ inches long (18 at birth) and 7 pounds 8 ounces, fully clothed with a wet diaper (3.4 kg). It was a wonderful report to receive.
I am very tired and want to feed Nadia once more and go to bed. I will post more as time and sleep permits. God bless you all.
Thursday, May 5, 2011
5/5/11 11:00 PM
Sunday morning we found out that Nadia’s blood had some blasts back. It was horrible news and news that could not be analyzed by the pathologists until Monday since they do not work on the weekends. After Dr. Peroskie consulted with the pathologist on Monday, they decided to schedule a bone marrow biopsy. It was time to see what the “factory” was producing: to see if Nadia’s Transient Leukemia was back, if she was developing full-blown Leukemia, or if the blasts were a bad screen. If Nadia’s marrow showed the Myloprolyferative Cells, we were facing a move to the Oncology Floor of the hospital and a very long stay in front of us (told to expect months). We scheduled the biopsy for Wednesday at 11:30 so that James could finish his final day of school on Tuesday.
Nadia’s bone marrow biopsy was a success. A nurse practitioner completed the procedure by inserting a needle roughly the diameter of the ink well of an ink pen, drawing out a core sample of the bone, and 10 cc of marrow. Nadia was put fully under with anesthetic which was the scariest part (she’s had anesthetic twice before when her drain was put in and taken out of her side/belly). Nadia was in the operating room for roughly 45 minutes and then brought to recovery. She was already awake when we were taken to her. I fed her 60 ml of Pedialyte and we were wheeled back the room where Nadia drank another 20+ ml of milk. We were told that she would be groggy and in/out sleep for the afternoon. She actually stayed awake for the next several hours and ate with a very healthy appetite.
We were told to expect some preliminary results on Wednesday afternoon but unfortunately the sample they drew was mostly blood and not marrow. The bone core had to decalcify overnight before being analyzed. Tonight at 6:00 pm we got the news that Nadia DOES NOT have Leukemia cells in her bone marrow!!! Even better news is that we may get to go home tomorrow!!!!!!!
They want to draw blood again in the morning and have another Echo Cardio Exam before she can officially be released. Please pray that these tests show that Nadia is healthy enough to come home. We are ready to celebrate Nadia and grow as a family.