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