Sunday, May 29, 2011

What the hospital fixed in Daddy. (part 1)


I did not want Nadia. To be more specific, I did not want a baby with Down's. It does not feel any better to state this publicly after all this time. It feels worse, actually. However, I have to tell you that in order to tell you about the emotional good that came out of Nadia's hospital stay.

Jessica and I did not tell anyone about the possibility of Down's in Nadia until the genetic test stuff came back certain, because it didn't make sense to put friends and family in a place of worry unnecessarily. We had to split the emotional load between just the two of us for a couple of months.  I thought we did fine.

When it came time to tell friends and family, Jessica and I got to see a whole rainbow of emotions, including a few that we had patted ourselves on the back for not developing. Some people were proud of us for choosing to go ahead. Some were speechless. Some were horrified. A couple of people felt everything equally, and strongly. Even though some lent encouragement and anecdotes of people they'd known with Down's, nobody was excited over the idea of Nadia being slower to develop many abilities, or not developing some abilities at all.

A couple of people apologized for their feelings. I told those people that it was important that they allowed themselves the opportunity to experience their emotions fully and honestly in order to deal with them in a healthy manner, because it's difficult to assess your feelings when you don't have a real appreciation for their size and scope.

I advised those people to do something that I wasn't doing myself. I hope that I don't come off as a hypocrite for that. I honestly didn't know the mistake I was making at the time. I didn't understand my mistakes until much later.

The week of Nadia's birth, I was present, and I think that's about the most that can be said. It was very different from the week of Sofia's birth. Jessica and I wondered if it was the diagnosis or the just the fact that it was a second daughter and not a first that had been born that caused things to feel less celebratory. In Nadia's second week of life, after we'd gone home, I fed her and changed her and that was mostly it. I loved her, that is not in doubt. But I wasn't crazy over her like I'd been with Sofia. At the time I'd hoped that much of it had to do with trying to wrap up the end of my semester. I told Jessica that once school was over, I'd allow myself to melt into fatherhood again. I convinced myself that I needed the time that could be spent cuddling with my new baby for studying.

I am ashamed.

The night that we took Nadia back to the hospital was terrifying. Jessica had committed to handling Nadia solo so that I could do my own thing, since I had school the next day and would need the rest. Nadia didn't keep any milk down after four in the afternoon. She threw up big five times in just a few hours, and it was vomit instead of just spitting up some milk overflow. Jessica had soldiered through the afternoon, but by eleven o'clock she'd reached her limit. Jessica has this thing where she steels herself in the face of a challenge, and the steel is strong. It's a trait I admire. But her armor has to stay intact. If a hole opens, the entire thing can fall apart and then there is not protection for her at all. I know when that point is reached that things have become very serious. I was about to fall asleep on the couch when  Jessica wailed from our bedroom. It is a sound that I've only heard one or two other times. It means that Jessica has lost control, that hope is slipping away. It's similar to the cry that a young child lets out when they are certain that they have seen something in the closet that isn't supposed to be there.

(I'm gonna call it a night here. I know I'm not going to finish this story tonight, so this is a good stopping point. I promise this is going somewhere, and that things will get less miserable. They will probably get more miserable before that, though.)

Saturday, May 28, 2011

Hematology Appointment Friday

Nadia had another check up with Dr. Peroskie yesterday. She was up to 8 pounds 13 ounces with her diaper and long-sleeved outfit on. Yeah to consistently gaining weight!

Nadia's appointment was at 1:20, so the Peach family went to the Flea Market in the morning before splitting off so that James could bring Sof home for a nap while I took Nadia to the hospital. Since I work weekends, it was nice to take the opportunity to go to the Flea Market while still on maternity leave. The only other time I've attended it was the day James and I got married; yes, the Nashville Flea Market was pretty much our honeymoon.

Dr. Peroskie was running way behind, as usual. A nurse came and took us back to draw Nadia's blood before asking us to wait in the transfusion area until a room was ready. The nurse had trouble getting into Nadia's small veins; it took two pokes and wiggling around once the needle was inserted to get enough blood to run her counts. It was rather strange for me sitting in the transfusion area. I guess I'd always thought of blood transfusions as a private thing and instead was faced with the reality of a row of recliners pointed at the Disney Channel on the various tvs.

We were finally taken to a room and waited some more. Dr. Peroskie was over two hours behind but I don't feel like I can complain too loudly about trivial things to any of the team members who helped saved Nadia's life. Nadia's counts were great. Everything is normal except the neutrophils, which were exactly the same as two weeks ago.

We go back to HemeOnc again in two weeks.

Hospital Memories Volume 1

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

Doctor Check Up

Nadia's Stats 5/21/11

Weight: 8 pounds 3 1/2 ounces! She is back on the growth chart and in the 3rd percentile.
Height: 20 inches (< 3 percentile)
Head Circumference: 14 inches (< 3 percentile).

Nadia's 2 month well check with Dr. Rawls was this past Monday morning. James and I were very excited about this visit as we knew that she has grown so much stronger in the past week. Nadia has gained over a pound and a half since being released from the hospital. Dr. Rawls is very pleased with her success. He even gave us a small talk about how its ok to back off a bit and let down our guard. He understands that we will be overly concerned with Nadia for quite a while, but encouraged us to move toward some normalcy in our lives and how we treat her.

Up until this appointment, we had still been dictating her feeding schedule, waking her every three hours to drink as much milk as we could get her to keep down. Dr. Rawls is so pleased with her weight gain that he suggested that we let her lead and see how she does; feed her when she tells us that she is hungry. This makes me nervous, but I am trying to follow the doctor's advice. I am still charting how much and what time she drinks even though Dr. Rawls told us that it was no longer necessary. I will eventually let it go and will know that I am comfortable with her ability to thrive when I do.

Since this was a 2 month well check, Nadia received her largest round of immunizations. She got three shots and took one orally. I warned the nurse that Nadia's gag reflex is very strong before giving her the oral dose, but she didn't take enough precautions and a bunch of it came up. I'm not sure what that means for the dosage, the nurse didn't seem concerned about it but we will remember to ask the doctor about it at our next visit. Nadia responded really well; she didn't even run a fever that night. She cried strongly, of course, when she got stabbed but nothing unexpected.

Speaking of our next visit, it will be with Dr. Huss! Throughout Nadia's entire life thus far, Dr. Huss has been on maternity leave. Her practice partners have kept her up to date on Nadia's health but she has yet to meet her in person. James, Sofia, and I all really like Dr. Huss and look forward to her return. I am a but sad that we will no longer be seeing Dr. Rawls, after 2 months I feel that we have developed a good relationship with him. To any parents in the Nashville-area: I strongly recommend our pediatrician's office (University Pediatrics at 100 Oaks). The team there is great and very involved. Any frustrations I had through this experience with Vanderbilt and the hospital do not reflect at all on how I feel about University Pediatrics. An added plus: they have a train in the waiting room (great to entertain Sofia and James).


Friday, May 20, 2011

Sofia just called me from the living room. Mommy was amused. Daddy was not. Wanna listen?

Friday, May 13, 2011

Home, Sweet Home

5/13/11

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

Big News!


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.

Jessica

Sunday, May 1, 2011

Slow weekend


5/1/11

Nadia is continuing to do well. Her weight is 6 pounds 4 ounces. She is off all supplements and only drinking suppressed breast milk; no TPN or lipids, yet she is maintaining her weight. She is drinking up to 60ml per feeding and we are feeding her every three hours . The past two days Nadia has worked in an extra feeding in the afternoon during her awake stretch. The goal is to continue to increase the amount she takes at each feeding a little at a time. The speech pathologist wants her intake to be at least 65 per feeding by Monday or we will have to fortify with formula.

Nadia is Cord-Free...almost. She only has one thing left attached to her which is a monitor taped to her foot to report oxygen saturations. She still has her PICC line in, but no tubes are continually attached to it. She gets Nexium (for her stomach,similar to Pepcid) through it at midnight daily and they use it to painlessly draw blood. We can hold her without fearing that we will rip something out or kink an IV line.

Nadia did receive another blood transfusion on Friday. Her hemoglobin was lower than the Hematologists wanted it. Her white blood cells are quite low but her platelet count has increased back into the normal range. Her white cells are probably still rebounding from her Chemo and will hopefully come back up by the end of next week. If they do not, then a bone marrow biopsy would be the next course of action. This biopsy would show if there are any abnormalities in the marrow preventing the proper production of white blood cells. Our HemeOnc team feels pretty confident that her cells will rebound. They explained that after Chemo, the white blood cells bounce around in numbers of production, often bottoming out at 7-10 days before returning to normal.

Nadia got to meet her Uncle Chris and Aunt Dee on Friday. They are visiting from Bozeman, Montana. Dee ran in the Music City Marathon yesterday; James and I were thrilled to be able to leave the hospital to support Dee as she finished the race. The gorgeous picture you see of Nadia on this post was one taken by her talented Aunt.

The surgical team believes that they will be able to conduct the rectal biopsy to rule out Hirschsprungs Disorder tomorrow. Her platelets have returned to the normal range and that is what was holding them back. We'll see...

James' last day of the semester is Tuesday. It has been a long, hard semester and we both look forward to the upcoming break.

Jessica