CT Scan - she did it!

We have just arrived home from another UVA trip…scheduled appointments for a CT scan of the head and then a follow-up with a UVA Neurologist, Dr. Rust.

No news is good news, right? We hope so because that’s essentially what we still have. The CT scan was performed successfully, but that’s as far as our information goes. Neurosurgery (Drs. John Jane or Junior of the same) is supposed to review the scan on Friday, with their interpretation being delivered to us in a phone call Monday. Does that mean the radiologist will have reviewed the scan? If history is instructive, not necessarily. Actually, if history is instructive, neurosurgery will be asking us whether radiology has reviewed it and what they said about it. Sometimes it is very unsettling to feel that all the various specialties are referring Nora to each other but somehow the system seems to be relying on us to put all the pieces together into an integrated whole. I feel, for one, like we could so easily be missing, neglecting, or forgetting something. Also I wonder what this kind of experience is like for those whose upbringing and/or educational background have not prepared them to communicate with medical professionals meaningfully or integrate the material. To be fair, I suppose Nora’s pediatrician is the one responsible for integrating all the medical data, and he doesn’t comment much on the big picture simply because nothing that has emerged thus far from all the consultations, tests, and procedures has been very helpful in bringing the big picture into focus. Yes, that is frustrating, but we have to keep reminding ourselves that probably the best possible scenario from here on out is for this state of affairs to continue indefinitely. If current trends continue, she may establish a track record of equilibrium that makes her of less interest to the medical system as time goes by.

Neurology. It’s good that people who can deliver such scary, sad news can be as kind as Dr. Rust. It was a relatively short appointment (except for the waiting) that delivered the kind of news we’re getting used to: they can’t really see anything wrong (and this seems to be mildly surprising to them). The long and short of it is that he thinks she seems to be doing well, and yet wants to follow up with her in 4 or 5 months. If that had been our only reason for traveling to UVA, the sense of having wasted our time would be keen, though the encouragement received there will probably sustain us more than we are aware. The only thing Dr. Rust noted was the same thing others have…her tendency towards “sundowning” or rolling her eyes downwards. He referred us to neuropthalmology (sp?). An odd moment of the appointment was at the beginning, when my sister Emily’s college friend Aaron Trimble walked in the room like he belonged there! It turns out he was accompanying Dr. Rust to his appointments as a part of his medical school training.

I have thus far failed to mention the anxiety producing experience of trying to get the CT scan accomplished, but it bears mentioning. For a 3-D CT scan, the patient must keep their head perfectly still for around 5 minutes (about 30 seconds of actual scan time). It’s not that Nora never leaves her head still…how in the world can a person predict which particular 30 seconds are going to be the still ones unless the baby is sound asleep and not easily awakened by machines whirring away like a Star Trek contraption in close proximity. If it can’t be done without sedation, sedation is required. This means an overnight at the hospital, since they would need to keep her under observation until the sedative cleared out of her system. We were determined to avoid this, but it felt somewhat out of our control…without sedative there is no way I know of to force a person to sleep (maybe they should try hypnosis!)

We arrived with a sleeping baby and high hopes at a little after nine, expecting, as per verbal telephone reassurances in the prior days, that sleeping babies would receive priority, expedited service. At the front desk they made it seem that way, too. So we were surprised to have to wait in the dressing room for around 45 minutes while they made it through their scheduled prior appointments. Nora awoke about 5 minutes before they came to take us back. We were more than a little hot under our respective collars! When we finally reached one of the sanctum santori of UVA imaging, the tech who ran the thing was surprised to see a baby, and listened with (rapid) sympathy to our sob story. And Janelle did actually sob a little, which I’m sure helped. The tech explained that she had no idea what the situation was and would have surely accommodated us, had she been told. I felt like shouting, “I cannot solve your department’s communication problems!”, but assumed that doing so would not engender support for accomplishing the scan in time for the 1:30 with Neurology, and therefore refrained.

The rest of the story felt long, but it is short. They gave us a room to crash in and we did our daddy and mommy thing until she had drifted into one of her sweet-sleeping naps of unfortunately unpredictable length. With pounding hearts we notified the staff and were quietly whisked into a different sanctum sanctorum; one staffed by persons that seemed really very competent and sensible. With crossed fingers and a few people praying (some who claim not to do that very often) we watched the machine lift her sleeping little body and insert her head into that space-aged, donut shaped radiological device. Nora didn’t move a muscle. Cheers all around! Janelle and I walked out with Nora and her diaper bags in our arms and with Jello in our legs. A minute later, Nora woke up. It was 12:30. A half hour later and we would have had to walk out of there with our hearts in our shoes.

So was it a good day? I have no reasonable frame of reference for answering that question. Maybe that’s the biggest thing this whole experience is teaching me so far. Sweeping generalizations about what is bad and what is good fail to respect the nuances of true daily experiences, especially when they matter. Onward we go…thanks for listening. Jason

A p.s. from Janelle – Some might be interested to note that Nora weighed 6 lb 10 ¾ oz today (but with clothes on and on a different type of scales so who knows compared to the pediatrician’s). And I can’t think about too much else to add after a night of little sleep last night and a baby squirming on my lap. Kali had a fun day today, thanks to the generosity of Bill and Dottie who once again not only opened their home to us last night but also played and cared for Kali today.

Wake Med milk bank and fingers in car doors...

What a day it has been so far and it is only 12:30pm. I’m typing with Nora’s laying half-asleep on my chest with her little bottom propped up by the ledge of the laptop. So far so good and I’ll make quicker progress on this update if I can continue to use two hands – though my one-handed typing is improving drastically. Kali and Jason left home about an hour ago for Shenandoah Valley Community School for their first day back volunteering since Nora was born. Nora and I are here together to recover from the morning.

It started out more or less like many other days. The catch was that we had to get to Nora’s doctor appointment by 9:30am – early for this family these days. We managed to get diapers out of the washer and put on drying racks as well as breakfast in everyone before heading out the door shortly after 9.

Nora didn’t like the ride across town much more than she enjoyed the trip to UVA but thankfully we made the 15 minute trip without any stops! She was worked up when we got there and wanted to eat. We assume it was more about being worked up and chilly than hunger because when the nurse joined us Nora promptly returned most, if not all, of what she had just eaten to her blanket. That, in addition to two blow outs in her diaper this morning, probably contributed to her weight being slightly lower than what we were hoping for. She weighed in at 6lb 3oz and was 20 ½ inches long. She’s moving in the right direction at least. Slowly but surely…which is all the doctor is looking for from her. A huge milestone this week for Jason and I is that we ditched “the notebook.” This being our record book of the last two months; our attempt to document every bit of breast milk Nora has consumed and ever diaper change including its contents. It was getting to feel more and more tedious, so we have been enjoying the freedom of one less thing to keep track of (while putting up with the “is she eating enough” pangs that I, more so than Jason, continue to experience from time to time). It’s one more step moving us towards parenting Nora using our intuition rather than some scientific formula. That feels good.

When Kali heard this morning that Nora had to get multiple shots, it was clear she was having sympathy pangs for her baby sister and she expressed verbally that she wished Nora didn’t need to get shots. Me too! We had requested that we not do more than two today – her second Synegis shot (to protect her from RSV) and the first of many vaccines (Pertussis). It feels important to Jason and I to start slow on her little body and see how she does, while also making sure she is immunized soon for things that are a current health risk to her. We were grateful to the two nurses who came in and offered to give both shots at the same time. What a brilliant idea! Nora was very clear that she felt the shots were a bad idea all together but we are convinced that it was better to just get both over with at the same time. We had to stay for about 20 minutes afterwards to make sure she didn’t react to the Synegis one and then were free to go.

During the time we were inside, snow had fallen and there was a light dusting over most of the world around us. Suddenly the flip flops I had grabbed for my feet as we hurried out the door seemed even less appropriate! Nora sacked out as soon as we got in the car and slept the whole way home. Phew!

Our landing home included excitement for me and tragedy for Jason. He informed me that the milk bank had delivered another cooler, only minutes before slamming his finger in the car door after helping to get Kali out. He will likely be without one finger nail in a week or so from now! I worry now that I didn’t provide enough sympathy for his pain as Kali and I scurried around, in the half hour she and Jason had before needing to leave for school, trying to get the cooler packed and ready to be picked up by FedEx (and we needed to get their lunch packed, Kali’s bladder emptied, and Nora was starting to think it was time to eat again). I imagine for at least some of you some questions may be arising in your minds: Milk bank? Coolers being delivered and returned by FedEx? Why the urgency to use that half hour of time to try to get it packed?

The short of it is that my supply of milk greatly exceeds Nora’s demand. While a wonderful problem to have, we only have one small chest freezer! They encouraged me in the NICU to pump every 3 hours, even when I warned them that from past experience with Kali I knew I was prone to produce a surplus of milk. So we were sent home with bags of containers full of frozen milk. When we arrived home our freezer couldn’t hold all of it and I had little choice but to pour ounces and ounces down the drain. It felt ridiculous after arriving home, especially around 3am, to be pumping and throwing it out. Finally, I researched the option of donating the milk and found WakeMed Mothers’ Milk Bank in Raleigh, NC. Since that time I’ve sent about 800 ounces of milk to them and even have an official donor number! This has made the 3am times of pumping feel a little more worth the disruption of sleep and having this outlet for all surplus milk also means that as of right now we once again have ample freezer space!

Since Jason and Kali left, I’ve spent more time than I would like to admit on the phone with doctor offices and our insurance company. I have a new found sense of horror at what persons go through who are juggling health issues, multiple appointments with multiple providers and trying to figure out insurance questions. Thankfully I’m healthy and can juggle carrying Nora around in one arm, the phone propped on one shoulder and the explanation of benefits I’m calling about in my other hand. And thankfully most people on the other end the line really do want to be helpful – including Janelle (yes, spelled the same way as mine) at BlueCross BlueShield, whose birthday is two days after mine, who daughter’s birthday is three days after Kali’s, and whose sister’s birthday is the same as Nora’s. She was able to fix the claim that was warning us that UVA could charge us just under $100,000 for just SOME of the services provided during her time in the NICU. That was a typo in their system I was eager to correct!

Other calls involve trying to coordinate appointments at UVA to minimize future trips over the mountain. That is proving difficult as it seems that different areas of specialty have different clinic days. So now I’m trying to sort out which appointments are really necessary and really urgent, and which can possibly wait – at least until winter is over and Nora’s weight hits the double digits. That can be hard when she continues to be a baby that her pediatrician will make absolutely no predictions about. He said to us today, “I don’t know how or why she is doing what she is doing but I like what I see” (referring to her weight gain, continued mineralization of the skull, what he felt was a decrease in size of her umbilical hernia--this isn’t the right term but Jason isn’t here to help me out--, etc…

So we continue to journey with our little mystery baby. She has started to brighten our home on many occasions throughout the day with her smiles. You can see one for yourselves on the little video clip at http://www.youtube.com/watch?v=ll3M9sD01B0

She has also started to remind us more of Kali – the fact that most days she just doesn’t seem to sleep near as much as most babies her age would, that she likes to snack often for a short time, her bright inquisitive eyes, some of the little facial expressions and sounds she makes while sleeping, and that she loves being carried and is put to sleep easily by an OUTDOOR walk in the Snuggli.

Yes, I did say outdoor!! This past week the temperature hit the 60’s one day and I could not restrain myself. I went for a walk WITH Nora OUTSIDE. It was wonderful. It made me feel better than normal. I found myself longing like I never have for spring time and warmer days. The feeling that family walks might not be only a thing of the distant past, but something that could return to our routine in the not too distant future felt like a dream coming true. I didn’t stray too far from home because when Nora decides she no longer likes her particular situation for whatever reason, she doesn’t delay in making that known until it is fixed. She has started to be a little patient for feedings, but we know not to push our luck for too long.

This past week I had an afternoon where Kali and Jason went and did errands for 4-5 hours. It was the first time that I had a significant block of time with just Nora. I found myself listening to music, looking out our big picture windows at the mountain, and feeling so many things that I was unable to verbalize. Tears came, but they weren’t exactly sad tears or happy tears. I think they carried some weariness, some hope and some fear in them. And as I walked back and forth in the front room with Nora in arms, I realized that I was starting to also feel something else – love. So many people have encouraged me to give myself time and grace regarding my journey of bonding with Nora. So many looking in on our experiences of the past number of months have affirmed Jason and I as parents. Yet inside I’ve often felt and still feel inadequate and unprepared for the journey ahead.

The song that brought on the tears initially is a song by Over the Rhine called Born. While the song was written regarding the relationship of the husband and wife musicians, the refrain has become very meaningful to me as I journey with Nora and our family in the present and think to the future.

“I was born to laugh, I learned to laugh through my tears.

I was born to love, I’m going to learn to love without fear.”

The laughter in our home has been on the rise – mostly due to the creative, fun and continuously-chattering 4 year old in our home. Her most recent string of consciousness that had us doubling over was overhead by Jason one day when she was reading books to herself. Don’t try to analyze it too much but here it is: “Knowledge is knowledge and cramps are cramps…(brief pause)…Knowledge will have to go and cramps will have to go but knowledge is better.” We aren’t all that certain that she could really give a working definition of knowledge or cramps…

Well, I’m in danger of going onto the fourth page here, even with margin modifications. Nora has needed a snack and a diaper change in the process of this letter but is once again sacked out on my chest held up by the computer and wrapped in an afghan my mom made when Kali was born. I’ll attach here a recent picture of Nora and one of the other two members of my family whom I love dearly, and who make me smile quite a lot when the younger of the two ropes the elder into imaginary play!

Until next time, Janelle

Returning to UVA for appointments

We are home! We are tired!! It seems a little hard to believe that it was just yesterday that we packed up and headed over the mountain to UVA (a scheduled appointment) for the first time since bringing Nora home in late November. A number of times on the trip, I commented to Jason that I was glad we hadn’t tried to travel at Christmas and that I think it will be quite some time before I choose to travel any significant distance as a family. It was complicated. First of all it felt like we had enough stuff with us that we should have been going somewhere for a week – cloth diapering does that to us. Secondly, Nora really is not on much of a schedule except that she does seem to be starting to tank up on milk and clear out her bladder and bowels during the day. That meant that we had to stop two times on what should be an hour long trip to feed her and change her diaper. She also seems to be getting used to having parents that respond to her needs, when expressed, quickly. She wasn’t so impressed that the laws regarding car seats kept us from responding immediately. We were grateful for the unseasonably warm weather which made it possible to stop along the road for “emergency” baby care. We were grateful to arrive safe at Bill and Dottie Scott’s around 5pm. They once again received us warmly and opened their home to all four of us this time. Nora took awhile to settle in the evening but then did one of her first 5-6 hours of sleep without eating. I am quite sure that Jason and I could get used to that!

Today was exhausting and emotionally draining. We didn’t go into the appointments with many expectations and once again there is no grave news to report. There is actually some good news. She has crossed another milestone – 6lbs! And the microarray analysis results are in – normal! The geneticist said that he continues to feel that her package of symptoms has some genetic cause, but he is not able to pinpoint what that is. However, he feels that time is on our side because she is doing well and continues to develop. What he feels most right now is that our diagnosis may be that Nora is Nora.

For me the appointment with neurosurgery was more unsettling. The appointment was primarily to look at her skull bone, or at least what there is of if, in her case. While we feel that some mineralization has occurred since birth, she clearly is still lacking in the brain protection department. That is not the primary concern at this point since she is not mobile yet and not in much danger of head injury. The one concern at this point is that two of the plates on the side may have fused prematurely. If that is the case it can cause problems as the brain grows. Therefore the neurosurgeon really wants a CT scan done in the next month to check that. IF they have fused, he may recommend surgery to separate them. I think it was the word surgery, which we heard a number of times, that really got me. I think I’m just not ready for a re-hospitalization, for watching Nora suffer again, for having other people being her primary care givers, for feeling scared and out of control and unable to make things better for her…

Some days it would be so easy to just think we have a baby, a normal healthy tiny baby. She really has had so few issues. She is not on any medication. She has not needed any additional doctor appointments for anything since we brought her home (other than her weight checks). She is feeding by mouth and getting better at it and wanting to do it more often (like right now as I’m trying to quickly finish this update!!). She lets us know when she needs something. She pees and poops regularly enough to make us wash diapers almost daily now. She is smiling at us and the ceiling fans and her red stripe on the cloth by the changing table. She makes noise other than cries – expressions of excitement or contentment. She’s even growing out of some of her preemie clothes.

Then, on a day like today, it feels like we have anything but a healthy, normal baby. We enter the medical world where Nora is a mystery. We get a list of appointments for the future and see our schedules involuntarily rearranged to accommodate them.

I’ve reflected a lot in the past number of weeks about our lives being composed of many individual moments – little snapshots put together to create the tapestry of our lives. I’ve tried to give myself the freedom to enjoy some of those moments, even while wishing that this stage in our family’s life looked very different from what it is. Sometimes it is hard for me to allow myself to feel happy, for fear I’ll somehow then not be able to handle the hard moments. Today I felt like what I need for myself is to somehow get to the place of accepting that the next few years are going to hold a lot of hard moments and a whole lot of uncertainty for us. If I can come to at least accept that reality and not have every new hard turn throw me off balance once again, maybe I can free up some space to enjoy the beautiful moments that will come and allow myself to be surprised by them when they do come – like just moments ago when I was frantically trying to type this letter before bedtime with Nora in my arms (which slows me down considerably) when I look down and catch a big smile.

Nora isn’t smiling right now, however, so I think my time is about up. Daddy is pacifying her for me, but I’m not sure she would feel like sending you all this update was a good enough excuse to delay responding!

We continue to feel grateful for the support that we have felt from many of you. Till next time (which will likely come after her next appointment with her pediatrician on the 15^th when she gets her next RSV shot and her very first vaccination.) Janelle