Saturday, June 25, 2011

Cardiology Update

Nadia had her follow up appointment with the Cardiologist yesterday. We got a great report! They did both an EKG and an Echo, as well as weigh and measure her (10 pounds 7 ounces). She was scheduled with the specialist because she had three minor problems with her heart that they wanted to monitor: one was a small hole called a PFO (patent foramen ovale is a normal opening in utero between the left and right upper chambers of the heart that usually closes after birth), one was a extra outlet on the right side that is attached to the mother in utero and normally closes itself off shortly after birth, the final one was a small hole between the two sides of the heart. I am thrilled to announce that the later two holes have completely closed/healed themselves. She does still have the PFO, a minor problem that 20% of the population (Down syndrome or not) walks around with without even knowing. They usually do not cause a problem and thus do not need to be monitored. We do not need to go back to the cardiologist again. Nadia is truly a miracle and one tough little cookie.

Wednesday, June 15, 2011

Moment of Clarity

(the following is an expansion from an event in a previous entry)

Living in the pediatric intensive care unit at Vanderbilt Children's Hospital is trying. Any development in the health of a child which necessitates intensive care is going to be stressful. Exhausting. Depressing. There are days of progress and there are days of regress. Mostly, though, there are long and deep chasms of nothing at all, when your child seems less like a human and more like a photograph, no motion, no awareness, chasms which you fall into, and the depth is such that you can't see the bottom. You never splat. You want desperately to splat, just so you can stop falling.

At some point, it occurred to me that engaging with other parents would be helpful. Jessica and I had only talked to each other, Nadia, medical staff, and family. The same information and the same possibilities and the same disappointments get discussed over. And over. And over. We thought that maybe stepping into the experiences of others might  keep us from folding into ourselves, which is an important effort to make when the room seems smaller every day.

Sometimes, speaking with other parents or even just hearing other parents' stories has the negative effect of adding to the burden of despair. Suddenly we're not just holding the weight of Nadia's future health, we're also holding some of the weight of a stranger's misery.

Sometimes, the severity of another family's situation teaches us how serious Nadia's situation is not.

Once, another family's story did both.

The fifth floor is entirely intensive care, so everyone is there for something serious. Asking a parent on the fifth floor how their child is doing is like petting a strange dog. You will either be very glad that you did or very sad that you did. Jessica and I were in a large family waiting area on the fifth floor, trying to work on some insurance paper work. Jessica sat at a low child's table because the two adult tables were overflowing with food and balloons. There were electronics chargers in every plug, and even an iPad lying unattended in a corner. Only one woman was present.

The woman said to us, "I'm sorry. We've just kinda spread out all over. "

Jessica told her that it was all okay. Sure, the woman's family had made it difficult for other families to get comfortable, but there was no way that our short-term needs could justify giving this woman a hard time.

"We've been here for a while," the woman continued. She obviously wanted to talk.

"How long," I asked.


"Last Sunday, or…"

"This past Sunday."

"Pssssh...Lady, we've been here more than a week," I thought. This frequently happens when people are hurting. We get into pissing contests over our pain and misery. "You think YOU are hurting? Let me tell you what hurt is like."

Of course, I didn't say what I was thinking. I said, "Did you come here from another floor before that?"

"No. We were life-flighted in. He's in a coma. My son. He might not wake up".

I still haven't decided whether I'm glad that I asked what I asked next.

"What happened?"

" A car hit him. My car. I hit him with my car. He ran out in front of my car, and I didn't see him. "

I stopped breathing. All sound, air, and time left the room. I wanted to break the silence, to say something helpful, to mask how shocked I was at the news and how ashamed I was for assuming anything about the situation, to cover how horrible I felt for only thinking about my pain when in a conversation with a stranger. I couldn't. I was scared to open my mouth because I was afraid that I might throw up.

" It's so hard to say it. You can't imagine what it's like to say it for the first time. "

The woman had been calm for most of the conversation. At this point she finally turned red, and was starting to cry when her mother came in and told her, "The doctors are in there. You should be, too. "

The boy in the coma's grandmother came in and sighed deeply. I left, feeling like a zombie. Jessica later told me that more of the boy's family arrived and that they sat around telling stories of the boy. The grandma had the best one.

"He likes to push my buttons. One day he says to me, 'Grandma, if I ever decide to swear, I think I'm gonna say 'shit.' And I said, 'And why is that' He said, 'Well, it's just poop! How bad could it be?'"

The grandmother's story made the boy more real for Jessica and I, not just a symbol of pain and despair. We'd never met him, but the story transformed him from a warm corpse to a suspended personality, at least for me. As much as speaking with the mother crushed me and put in perspective how worse off the situation with Nadia could be, the grandmother's story reminded me that Nadia was alive, because I was starting to forget.  

Sunday, June 12, 2011

Nadia's current schedule of appointments (as of 6/12/11)

If you think you can help watch Sofia during any of these, let us know!

Thu, Jun 23, 201110:00 AM719 Thompson Lane, Suite 24500

Fri, Jun 24, 20112:00 PM2200 Children's Way

Fri, Jul 01, 20113:00 PM2200 Children's Way

Mon, Aug 01, 20111:30 PM719 Thompson Lane, Suite 24500

Tue, Sep 27, 201110:00 AM2200 Children's Way

Wed, Sep 28, 20119:00 AMMedical Center East, South Tower

Friday, June 10, 2011

What the Hospital Fixed in Daddy, Part 3

Pardon me. I've gotten some things out of order, I think. It's a consequence of doing this so long after the fact and not going over old notes beforehand. The opportunity to do these blogs comes quickly, and at night, so I have to knock it out as quickly as possible. I'll clean things up later.

Nadia had been moved to the pediatric intensive care unit (PICU) for her massive abdominal swelling. The doctors were seeking out possible causes when I eventually determined that Jessica needed to breathe something other than hospital air and think about something other than medical terms, because it was beginning to look like we could be in the hospital for a while. I know it's easier to avoid a miserable seclusion than it is to leave it. Jessica and I took short trips every three days or so to the store or something, in addition to my trips home to deal with the dogs in the afternoons.

I was starting to get the big picture. Days of blood draw after blood draw and doctors having suspicions without answers  gave me the idea that Nadia was going to get worse before she got better. I fought to stay in the real world. I suggested that Jessica get some insurance / FMLA paperwork completed one day in the PICU family waiting room as a way of putting her focus elsewhere.

While in that waiting room, we had a short conversation with a woman who had a son in PICU. She started up some small talk, and even though I generally am annoyed by small talk, I obliged, because it's a children's hospital. Not really the place to be curt towards people who need to talk. The small talk ended up as anything but. The woman told Jessica and I that her son was in PICU because she had accidentally hit him with her car. He was in a coma, and nobody knew if he would ever come out of it. The woman hadn't said she had hit her son out loud until she did it with Jessica and I. The woman was about to break when someone came in and said that the doctors wanted to see her, so she left.

I covered my mouth because I thought I was going to vomit. I stared at Jessica, who stared back. Eventually I went over to Jessica, held her hand for a moment, then took a walk. It was comforting in the worst possible way to know that no matter what the end result with Nadia might be, it wasn't our fault. After calming down, the realization was helpful. A little bit of me stopped feeling awful for my family and started feeling thankful for knowing that it could always be worse.

Around the time Nadia's swelling seemed to plateau, Jessica and I spent much of a day out and about. After we got back to the hospital, we spent some time with Nadia, then retired to our sleep room.

We got a call from a nurse at three-thirty in the morning saying that Nadia had stopped breathing properly on her own, and that we should come to PICU just in case. We then had to wait outside of PICU for a doctor for about half an hour, because there were so many people in Nadia's room and so much going on.

By the time we were able to see Nadia, she barely looked like our baby anymore. Her swelling had gotten out of control quickly. Over just a few days, she had gone from just over four pounds to around ten pounds, and the gain was almost entirely from the fluids she had been on. All of the extra weight created a pressure against her diaphragm that had severely hurt her breathing.

I thought that things had become difficult for me when I tore the IV out of Nadia's head. Then I thought that I had reached a real level of understanding when doctors were stabbing her every eight hours or so for more blood than it seemed like an unhealthy baby should be losing. Then I thought my shame had bottomed out when a drainage tube had gone in through Nadia's mouth to pull fluid out of her stomach, and she alternated between writhing to get it out and thinking that it was food for her to nibble on. At the point that Nadia was ten pounds of fluid-filled newborn with hoses and tubes coming out of and going into everywhere, and she didn't really open her eyes for days, and couldn't breathe on her own, and instead of getting rid of liquid like a normal baby had a tube in her side pulling out fluid with gravity, any parent who had gone into the situation from a healthier place would have said, "this is it, one way or another." Unfortunately, I couldn't feel that, because I'd already felt it several times. All I could do was wonder how much more monstrous my baby would look. What would tomorrow be? Would she be a skeleton again? Would she inflate so much more that I wouldn't even be able to see that she had ever had eyes? Would her ears disappear under inflated skin, as it seemed they would?

Was this it? Would she be here the next day?

I am a Christian. I have beliefs about what would happen with Nadia were she to leave. It wasn't so much her that I was worried about. It was the rest of us. It was me. I knew that I had finally come to a place where I wanted her badly. I just wanted to hold her without fearing that she would break or pop. I wanted to lay with her without worrying about this hose or that. I longed for the chance to change her diaper without a monitor screaming in my ear that it was getting a proper reading because her foot was moving around so much. I was starting to believe that I had missed the chance, that I had wasted every non-hospital second I had been allowed with Nadia. My heart had frozen. I was just waiting for the hammer to drop and shatter it. I functioned, and I philosophized, and I was pragmatic in how I went about my day and my plans, and I explained to friends and family and teachers and classmates that I had to keep going because even if Nadia were to die, I still had two girls to work for. Secretly, I was just waiting for the numbness that I believed was coming, because I thought it might be better than the guilt I was feeling about not holding Nadia enough, not kissing her enough, not loving her enough.

Then, one day, after what seemed like a week of not opening her eyes, Nadia looked at us.

Then over several days, her swelling reduced.

Then she breathed on her own.

Then we left PICU and went to a regular floor.

Then she ate, peed and pooped like a regular baby.

Then we came home.

I won't lie to you. There are still moments when I hold her and think about other stuff that I need to do during the day. I don't believe, though, that I'm doing it more than any other parent of two with a lot of stuff to do. I love holding Nadia. I love it when she looks at me. I begged for more days out of a hospital with Nadia, and I got them. I don't intend to waste them. I'm thankful for them, but I still miss the days that I wasted. 

It wasn't until we were home that I understood how awful I had been as a parent towards Nadia before and during much of the hospital stay. In the rare moments when I was able to hold and love Nadia without worrying about getting puked on or fending off a rambunctious Sofia, I asked myself why I hadn't had those moments before the hospital. The only thing that made sense was that I hadn't put myself in a position to have them.

When I asked myself why I hadn't been loving my baby properly, the only answer was that I hadn't been dealing with a baby at all. I had made her into a burden in my mind. Once it seemed like we might lose her, I knew that I had bastardized my own child in my heart. If she were a burden, I would be relieved to lose her. She is a baby.

And she eats like a horse now. And pees and poops a lot. And cries. And looks at us and recognizes us and loves her big sister and is growing, growing, growing, and she is surprising the hell out of the developmental doctors. She is stronger and more attentive than anyone expected that she could be. She has rolled over multiple times, which nobody believes until they see.

And she is loved properly. And she is not a burden. And she is not a problem. She is everything.

And, obviously, I am humbled.

First Trimester Screen (scan)

Click for a larger version. 

Saturday, June 4, 2011

What the Hospital Fixed in Daddy, Part 2

I had already checked out for the night in every way possible, but suddenly checking out wasn't an option. The transition from "look at how great we've been at raising Sofia, we can handle Nadia no problem, I'm just gonna chill and things will work out" to "WHAT THE FUCK IS GOING ON HERE AND WHY WON'T MY BABY STOP THROWING UP" was instant. I called the insurance company and Nadia's doctor. Jessica was in a state that didn't allow her to communicate directly with the doctors, because she had entered panic mode. My brain was mush from being tired and from studying for much of the day, not to mention the fact that I'd already been working on sleeping . Doctors were asking questions on the phone that I couldn't answer because of how disconnected I'd been through the whole event. This was the first of many events that showed me how little I had been doing to be a father this time around. The doctor said to wait and see, and then called back to say that waiting and seeing wasn't letting her get back to sleep, and that she wanted us to go to the emergency room.

If you're lost already, this means that we had only been home for a week before we had to go right back to the hospital. This is terrifying when your baby is two weeks old.

I was exhausted from studying for much of the day for an exam. I had a hard time staying awake in the triage room that we were first in. I felt incapable of being a father or an advocate for my child. I felt useless. As monitors and tubes were hooked up to my baby, I started to get angry at myself. Why hadn't I been more helpful? Why did I put anything above spending time with my new daughter?

We got moved to a slightly more comfortable room where Jessica and I could take turns napping on a cot. Nadia had two IV lines put into the top of her head. There were monitors and hoses coming out of everywhere, so handling Nadia for diaper changes became difficult. We refused to be hands-off, though. Well, I refused. Jessica had never considered being hands-off an option.

Then, at one diaper change, I went to move Nadia around and ripped an IV out of her scalp. It didn't just slide out. I tore it out sideways. Blood started to pour out. I lost it. I managed to get someone into the room to deal with my mistake, then I took a walk. I turned zombie, because if I'd allowed myself to feel everything tied up in the events, I would have vomited. The staff at the hospital assured me that the IV mistake was not a big deal. I did not care.

By now you can see that I was still making things about me, getting wrapped up in my own part of everything, making every success and failure about my own self-worth as a father. This is where things get especially stupid, because to measure things on those terms means that as soon as A+B+C= Good Father, I'm going to make big mistakes again, citing the fact that I have earned the "Good Father" label. When Nadia got better for a few hours and the staff were discussing the possibility of starting feeding again, I started thinking about school again. I was in the room, but my mind kept leaving. This mistake was assisted by the fact that Nadia had calmed and that the assumption was being made that her issues had developed solely from improper feeding by Jessica and I. The idea was that if speech therapy could retrain Jessica and I in how to feed a baby with reflux issues, everything would be great in a few short days and we could leave. Jessica and I did learn how to feed Nadia the way she needed to be fed, and she started eating better.

Then Nadia developed some sort of respiratory infection, and she couldn't eat as well because she was so congested, which meant that our stay was extended. I wasn't that worried, even if I was disappointed. Since she was still generally improving, I was focused on school again.

Then Nadia's tummy started inflating. This is when reality started setting in. Not just the reality of what was going on in Nadia's body, but the reality of what had been going on in my heart. We told the docs, and they weren't concerned. Then they were slightly more concerned.

Up until this point, I had thought that I had been strong for Nadia whenever the doctors needed to draw blood, which seemed like it happened three times a day to start with. Once a third thing had gone wrong and the doctors had obviously become lost, I had a harder time holding Nadia's hand during blood draws. I needed someone to hold mine. Then I needed someone to hold me down, because I wanted to choke everyone who came in with a needle. Then I just wanted someone to hold me.

I told myself that I had been emotionally prepared for all types of other physical issues, and that I was only getting so upset because I hadn't prepared for what eventually did happen. I had considered heart issues, structural issues, etc., but not mysterious causes for serious symptoms. I eventually realized that I was being stupid. The issues at hand weren't nearly as bad as, say, a huge hole in her heart, so it wasn't at all that I had been prepared for OTHER things and was only crashing because I hadn't thought about what ended up actually developing. I was crashing because I had never truly accepted the fact that Nadia was going to be a much bigger challenge than Sofia had been.

Jessica and I eventually worked to spend some time out of the hospital for our emotional health. We had a nice day out and about, and spent less time with Nadia than we had up until then, and liked the feeling that there was more in our world than the hospital. Jessica and I went to bed in a sleep room at the hospital relieved that the world was still spinning.

Then we got a call at three in the morning telling us that we needed to come to Nadia's room, because she had stopped breathing.

Very important. Please read.

I've been told that there are people who became very worried about The Peaches after my last blog entry. I am about to work on the second part of that entry, but in case I don't finish it tonight I need you guys to understand some things.

1. I promised that the entry would go somewhere less dreary, and I intend to fulfill that promise. Writing is hard to come by at the moment. Please bear with me!

2. The entry is titled "What the Hospital Fixed in Daddy," not "What the Hospital Broke in Daddy." Be patient with the storytelling. It's impossible for me to get across how the transition felt if I don't get across how I felt at the start.

3. At the least, though, I am very satisfied that I sufficiently depressed people. Obviously, I nailed the feelings I was wanting to convey!

4. This is a big one. I am accessible to most of you. If you are concerned, you should contact me. Don't just go in circles with others who are worried. Go to the source. I'm here, and would love to hear from any and all of you. If you are concerned about someone, you should never stay in the shadows. This doesn't just go for this situation.

I love y'all. Now I have to write. 

Thursday, June 2, 2011

Hearing Test and Down syndrome clinic

Nadia had two great appointments this week. Yesterday we met with audiology for the diagnostic hearing test. The technician took Nadia and I into a soundproof room; the sound was so dead that it hurt my head. She put a device into Nadia’s ear that was supposed to test the pressure and detect whether or not she had fluid blocking her eardrum. Unfortunately, Nadia’s ear canals are so small that she couldn’t get a reading. James traded out with me and held Nadia during her 45 minute test while I took Sofia out to not distract the testing.

Sofia and I got a yogurt and a bottle of water then walked around the hospital courtyard until we found a nice bench in the shade to sit on while we ate. It was really enjoyable spending time one on one with Sofia. We’ve had our moments of struggle in the past few weeks where she acts the typical toddler and is very defiant. She’s had this attitude and acts out more toward me than James and I think it is how she is showing her frustrations about so much of my time being directed toward Nadia. During our date in the courtyard she was an angel; I didn’t get one challenging look.

When we met back up with James and Nadia, he shared the test results. Nadia is having difficulty hearing the highest of highs and the lowest of lows. Since they couldn’t get the pressure test, they did some sort of test that bypasses the area where the fluid builds (something about a bone test?). The nurse felt confident that Nadia’s hearing problems are because of fluid based on the result of this test. We are very hopeful that her hearing will continue to improve as she gets older. An audiologist will evaluate her again at six months and see if we need to be referred to an ENT (Ear, Nose, Throat) Specialist to see about tubes.

Today, we had our first session at the Down syndrome clinic at Vanderbilt. The appointments started at 8:00 and were scheduled until 11:30. Sofia spent the night with her Nana so that we wouldn’t have the distraction of entertaining the toddler during the meetings. As we entered the waiting room I was slapped with the obvious realization that Nadia has Down syndrome, I sometimes forget, I sometimes want to forget. I’m reminded every time I see person with Downs. This morning it was an entire waiting room of kids with Down syndrome that made my forgetful denial sulk into the reality that I have a daughter with Down syndrome. Nadia was a hit in the waiting room, the kids swarmed to look into the stroller at the baby (the adults were more discrete but many came over to see her in their own time). James and I were both nervous about today’s appointments, although neither of us shared that with the other until after. After we got checked in, we had to fill out a developmental questionnaire that was pointless for a newborn and put us more on edge. By the time we got called back by the nurse, we were snapping at each other. Not true, it was more me snapping at James over a diaper on the scale and James retreating into his Smart Phone. Nadia weighed in at 9 pounds 2 ounces (another healthy gain) and would not allow her blood pressure to be taken. She hates the cuff tightening on her leg and kicks. I held her foot tight for two separate attempts and the reads were way high, she was so upset that her blood pressure was through the roof. Thankfully the nurse decided that a calm read was not necessary so long as she could get her pulse.

We were shown to our room and all the doctors for each appointment came to us. We met with our main Downs doctor, a Nutritionist, a Speech Pathologist, an Occupational Therapist, and a Physical Therapist. This place was awesome. We ran on time and were given all the attention we needed. They praised Nadia on her eating and praised me on pushing on with pumping and sticking to feeding Nadia only breast milk. Speech offered us some sign language suggestions (it is never too early for us to start using it around her) as children find basic sign language easier than English to express themselves. She was very supportive of Nadia’s skills at sucking on the bottle. PT loved that Nadia can hold her head as well as she can. She stressed the importance of tummy time and introducing toys to stimulate. OT wants us to work on propping Nadia on her side to help her bring her hands together (something I have seen her do only once). Both of these ladies pointed out to us that Nadia favors her left side; she can look to the right but really doesn’t like to and won’t unless she’s really curious. So…we need to make sure that we are encouraging this curiosity to the right. Neither James or I realized this until today, but we do everything on her left side: feed her, hold her on our shoulder so that she turns left to look at us, etc. Nadia gripped the OT’s rattle and shook it around for several seconds. She even smiled at the PT. The therapists left us with a list of several recommended books to purchase/read.

The morning was fantastic. James and I were glowing with pride at Nadia’s accomplishments. The encouragements and praise we received from every member of this team did so much for us today. They showed concern for us as parents as well as the child we expected them to focus on. We spent some significant time with the first doctor talking about my depressive tendancies and options for that (not what I expected at the Down syndrome clinic). The talk somehow did not make me feel cornered or confronted but simply cared about and that is a fine line with me and my emotions. I am not naive enough to think that all of Nadia’s developmental evaluations will go as well today, but I am selfishly grateful for James and my sake that this first was so incredible and motivating and on time and honest. This resource is huge for us and for Nadia. They all want to see her again at six months and see how many more milestones she’s met and what we may need to work on.

Thanks again for all of the support and prayers being said for Nadia and the Peach Family. The power of prayer has pulled us through the previous two and a half months and delivered us from a wonder child who is being more than we ever dared to dream.

Love to all, Jessica