We're Wireless!

We knew Clara was an original, but we had no idea how far she would go to prove it. We ended up at Primary's a total of 5 times in 10 days because of blocked NJ tubes. On the 4th visit, the doctor just shook his head and told me he was so sorry-this isn't normal, it doesn't happen to most people, we were doing everything right, and it sucks that we just had to keep replacing this tube. It was a relief to have someone validate us that way-we couldn't do anything differently, we would just have to keep replacing when we couldn't get it unclogged. Poor Clara.

Sleeping-Clara prefers no clothes
and few blankets. She runs warm,
just like Grandpa Wallace and
Aunt Sherrie.

The 5th time the tube clogged was just 7 hours before our swallow study was scheduled to take place, around 6AM.We called the on-call cardiologist to see if we could just give her oral feeds until it was time for the study. We didn't want to go in and have the tube replaced as we felt there was a strong chance she would past the test and get moved to an NG tube. We were trying to reduce the number of x-rays she would get in such a short period of time. The doctor was concerned about her not having enough food during the intervening hours, and he advised us to head up to Primary right away. He would leave orders for radiology to get her swallow study moved up as soon as possible. Hooray!
Oh, except not so much. We gave her some formula in a bottle, got dressed and waded through rush hour traffic. We got up there at 8:15AM. They thought they would get us in by 9:00AM instead of our 1:00PM scheduled time. And then it was around 9:45AM, and the cardiology NP came by to check on us and Clara. They told her and us it would be 11:00 for the study. The NP felt like Clara was doing ok, to just give her a small amount of food (1-2mL) while we waited so she would be hungry for the study. We decided to also go for a drive to keep her calm and get Todd and I some breakfast. When we returned, they still weren't ready for us. During all this time, we had seen (and met) several families going in and out, made friends with other patients, and Clara had been so patient. But as the clock was getting close to 12:30, and I had hardly been allowed to feed Clara, and she was getting more upset, I joined her in some tears. We had rushed out the door, waited in this uncomfortable, germ-infested waiting room for over 4 hours, and we ended up having the study done about 20 minutes earlier than originally scheduled.
And then, she passed the study with flying colors and our whole world changed, and I was no longer mad at the hospital! I'm easy that way. They replaced her NJ with an NG tube, which is much lower maintenance. And we had approval to give her food orally, all of it that she could handle, with the tube being in place as a back up as well as for nights so we don't have to wake her to feed her. Oh, how much happier she was to get food directly to her stomach!
The following day, we met with cardiology for a post-surgical follow up and got more good news-Clara no longer needed to be on oxygen. She was untethered, and we were finally free to move (her) freely about the cabin! I could hold her while I get up to grab my ringing phone, or finally take her in to her nursery, or just take her for a walk without an act of congress and a million tubes and things! It's like she's a real baby! She has continually beat the odds and progressed faster than we ever hoped, she is amazing!

So, You Want to Have a Heart Baby...

After just 4 short weeks, this is what life looks like:

We stole this idea from the hospital, you heart moms
will recognize this process:)

• We have home health nurses and speech therapists here once a week. They are super interested in how much Clara weighs. We talk about that a lot.
• I can tell you how many milliliters are in an ounce, how many tablespoons are in a scoop of formula, and I can estimate your weight in pounds based on the kilograms, as long as you weigh about what a baby weighs.
• Early Intervention specialists from the Jordan School District will come by monthly, and potentially more often as she grows. Clara has no problem adapting to strangers watching her eat, checking her muscle tone, looking in her mouth...just don't touch the stickers on her face.
• Our dog Gir thinks his new nickname is "watch out buddy" and he also seems to think Clara is a cat. He really wants to play with the cat, especially when the cat sneezes.
• We go to doctor's appointments every week or so-cardiologist, pediatrician, geneticists, immunologists. I have stopped trying to remember the name of every health professional that comes in to any room until I have met them at least twice. My brain only has so much room left.
• We schedule visitors very tightly. It's hard to coordinate Clara's feeding, my pumping, Todd and I eating and sleeping, and just general down time, so we plan ahead. We also learned that Clara doesn't do well to be overstimulated, so we try not to have visitors on the days we have other appointments, otherwise Todd and I are up all night with Angry Clara.
• There is an enormous pile of papers that I moved from the kitchen counter to the office today. Every appointment, home health delivery, and medical visit includes copies of paperwork and I have not yet found any motivation to organize these. 
• We have eaten so much junk and takeout, especially on the days we end up at the hospital at odd hours. I weigh less than I did when I got pregnant, but I don't think that will last long unless I can find the time management skills to get a Bountiful Basket ordered next week. Hopefully, the nice weather will also help us get out and take some walks.
• Our DVR is FULL of great stuff to watch...someday?
• We are so lucky. Clara is healing well from her surgery with no complications so far. She is getting better and stronger every day. Todd and I have started getting a bit of sleep at night. We have connected with some wonderful heart and 22q families. We have enjoyed more quality time with our own families and, as life gets more normal, we are excited to take advantage of the rest of my maternity leave with great bonding time together as a new family.

Our New Normal

Waiting for radiology

We've been to Primary's three times this week to have Clara's NJ tube replaced. It keeps getting clogged, probably from liquid Tylenol and other thick medicines. We've now learned to flush with extra water between doses, and I even tried to flush with Coke once but it weirded me out too much.
The process of having this tube replaced includes a full check of vitals. Clara is opposed to cold thermometers under her arms, tiny blood pressure cuffs on her legs, and being weighed naked. However, she really likes the firm mattresses in the rooms and having bright lights shined in her eyes.
When radiology is ready, I carry her to the x-ray room. I lay her on a flat, hard, towel-covered table and remove her onesie or shirt, but not her boxing gloves because she's dangerous without something covering her nimble fingers. We all put on those heavy lead aprons, and they take a picture of her to see where the tube currently is, make sure there isn't anything weird going on.  (Once, it was in such a strange place that the doctor asked if her anatomy was shaped right, though we later realized it had just found a path of its own rather than the expected track. To quote the doctor, the tube is mightier than the bowels. Thought you should know.) Once the new tube is ready to insert (lubed, with a wire inside to make it easier to guide), they remove the stickers from Clara's face. She HATES this a lot, and I have to hold her legs to stop her from using them to push herself off the table (or kick someone. She would, I bet.) Once they even strapped her legs together to stop her from flailing too much, it is just terrible to watch. Then they put the tube down her nose and watch the x-ray to make sure it goes to the right place. Once the tube is placed, there is the additional torture of keeping her calm enough to reapply tape and padding to her face. She gets so upset during this process that the techs often don't do a great job of getting any of it placed right, so Mom and Dad get to revisit the process a day later when she pulls it off half way. And when we finally get home, she finally sleeps, but her little throat has been through so much from the crying and the tubes going in and out  that she sounds raspy and snorty, so we end up being awake all night checking to make sure the noises coming from her bassinet are just her strange snores...

We have another swallow study next week, and we hope hope hope she passes and we can move back to the NG and other feeding options. One of the nurses and I talked the other night about how the instinct to feed your baby is so strong that it can override all other things. It is how we have survived as a species, the mom will focus on taking care of her child and ensuring she has food. These stupid tubes are helping fulfill that need I have to feed Clara, in some ways, but it is so hard to not have more input, more control, over keeping her strong and growing. I have to rely on this process and a team of doctors and nurses to help when things go wrong, and it really feels unnatural. I suddenly feel a kinship with Alicia Silverstone and her choice to feed her baby pre-chewed food, like a bird. No, that's gross, I wouldn't do that. But I get it. I'm glad the feeding tubes exist, and cannot wait to banish them entirely from our nest!

Project Clara

After almost a week in the surgical unit, Clara finally got to come home this week!
Before being discharged, she had a swallow study that showed that she was silently aspirating thin liquids. They decided to change her NG tube back to an NJ, meaning it would bypass her stomach and go to her intestines in order to decrease the chance she would breathe in her food. The good news: we can't place an NJ, only the hospital can, so I won't have to stick that through her nose again right now. The bad news: if it comes out, we have to go to the hospital. Plus, she no longer had much food coming in to her stomach, so when she was awake, she felt hungry. We could give her just 5 mL of food through a bottle every 6 hours. Clara is not fooled-that is not a meal.
We were all set to bring Clara home on Tuesday, but had a small setback Monday night. While Mom, Jenn and I were steaming the house and organizing everything for Clara's return, Clara was at the hospital coughing and throwing up. They hoped it was just from the aspiration, that she was finally trying to fight the liquids from going in to her lungs, there was a possibility she was sick. Since she has no thymus, the hospital is extra cautious in cases like this. They moved her to a sick pod on the unit where she would be more closely watched, as would her visitors, to ensure her exposure to germs was minimal. When we visited on Tuesday, they advised us they had not seen other signs of being sick and as long as the cultures came back clean, she would come home Wednesday. We also had a visitor-Hollie and her daughter Elaina, from the IHH group, stopped by. Elaina also has 22q and it was so great to meet them, hear their story, and feel more a part of this great community.
Todd and I left early to go home and rest, since Mom was coming up that evening to check on the baby. Late that night, they advised her the cultures looked good and she texted me to confirm-Clara was coming home!
Wednesday at the hospital was a flurry of activity-we met with the nurse practitioner to review discharge instructions for meds, feeding, etc. They arranged a home health company and early intervention to come by to set up her oxygen, feeding pump, and speech therapy. The nurse and tech helped us gather so many supplies, we set up follow up appointments with cardiology and speech. We picked up prescriptions, packed our bags, put Clara in her car seat and, after about 6 hours (plus 2 weeks in the hospital, plus 9 months in me, plus the months before while we were hoping for her.....) it was time to have our family together at last!

After months of planning and creating her nursery,
Clara is currently parked in her bassinet in the
living room with all of her equipment :)

We got stuck in traffic headed home, and it was rainy-I kept hoping the rain would stop just long enough for us to get her in to the house safely. We got calls from the home health people arranging delivery, and found there was a misunderstanding on time. The food pump was there, we weren't, so they would come back "later." I stressed to them that it should be soon, as Clara had been unhooked for a few hours already. We got home and the oxygen delivery arrived shortly thereafter. We were now the proud custodians of a giant tank and a few travel tanks, and about 50 feet of tubing to make Clara more portable :) My mom also arrived with dinner and two very helpful hands, she set to cleaning and organizing us right away while we tried to keep Clara calm. The home health nurse then arrived, and started working on administrative things while we learned how to work the oxygen. And finally, the feeding pump was delivered. I was hoping the nurse would get Clara hooked up quickly, as she had basically been crying for about an hour at this point. Instead, we spent time going through paper work over and over (how many times can I tell you Clara's DOB and how much she weighed?) and then she showed Todd how to 'properly' give Clara a pacifier and then she weighed Clara and oh I was losing my mind-Please can we just feed my baby and then we'll talk about all this stuff??
Finally, we got the pump set up and Clara was much calmer, as was her mom. Todd and I got some dinner ourselves, while Nana Wallace watched Clara for us. Things were quiet, Nana left, and after the longest wait of our lives, we were home with our baby!

My Mood Today:

On Easter, Clara's due date

My back hurts, possibly from falling when my leg was numb. I'm not sleeping well, though at least it is finally back in my own bed after months in a recliner. Clara's little lips are so dry, she must be going crazy, that is the worst feeling. I got a new phone almost a week ago, plugged it in to charge, haven't touched it since-probably need to activate it soon before they charge a fee. I need to go buy more wipes. My incision is crooked and puckered at one end, goodbye bikini dreams. When Clara comes home, she'll have a pump for food and oxygen and thus tubes all over her face-will I be able to hold and snuggle her properly still? What if she stops breathing and we don't see it and there are no machines to beep at us? All around us are friends and coworkers and acquaintances headed for Italy, having heart healthy, fully chromosomed babies. They are in the hospital for a minute, then they go home to bond and stare at each other and do the things we were supposed to be doing. I am so ready to have Clara in this house, by me all the time. I have so many questions before we leave the hospital, I must get up there soon to start asking them. Parents do this all the time, we'll figure it out. Clara is perfect, we'll just keep trying to catch up.

The Floor

We rushed up to the hospital on Thursday to see our baby girl-she was in a room in the surgical recovery unit and it felt like such freedom. We held her, changed diapers, tickled her toes, and laughed at her cries (they were so unconvincing, and she feel asleep half way through any little tantrum, it was too cute!)

Our first sleepover!

The nurse reminded me that there was a 'bed' in the room if one of us wanted to spend the night, so I ran home to pack for our first slumber party! I learned so much that night about how to give Clara her meds through the NG (feeding) tube, how to feed her manually through the tube and I got to burp her when she was having some reflux. I also got no sleep, but had such a nice time visiting with our favorite nurse (Sara) when she came in to cuddle with Clara. Early in the morning, they have a routine that is followed each day for these heart babies. They strip them down, weigh them, measure their tummy girth, and take them down to get x-rays to check their hearts. Clara made sure to make her feelings known the first day by peeing in the nurses hands as soon as they stripped off her clothes and diaper :)
When she returned from the x-ray, the nurse practitioner checked her scar and chest tube output (better!) and the doctors did rounds. I talked to Dr. Su and got a bit more information on Clara's thymus-mostly, that they still hadn't tested for antibodies but would before she was discharged. So either the hospital was being neglectful (I doubt it) or we were overly concerned by the information we had received and didn't need to worry so much about germs as we thought. Good news, I guess?
I went home and showered, checked on Todd who was passing a kidney stone again, and headed back up to the hospital with my brother Nate and sister in law CC. We just spent a few relaxing hours watching and holding Clara-pure magic!
On advice from a few of the nurses, I decided not to spend the night anymore. I was still recovering from the c section and trying to pump every 3 hours. Trying to sleep on that hospital couch in her room was not contributing in a positive way to those goals, and the nurses were so kind and loving with Clara, that I had no qualms about leaving her in their hands at night.

I'll give you a MILLION
dollars to keep those tubes
off my face!

Saturday's visit was a little less smooth. One of Clara's tubes (the NG/feeding tube) would be coming home with us and we had learned to use it to feed her and give meds. The last step was to learn how to place it if she pulled it out. This tube goes from her nose down her throat to her stomach. It doesn't hurt, but is irritating to have removed and replaced. Do you see where this is going??
The nurse described what was needed in order to replace the tube, and I volunteered to try it. I'm a dummy that way. So she removed the old tube and oxygen, and we snapped a few photos before I had to try to stick this tube up her tiny nose. The nurse had warned me that her nasal passage was extra small, that 22q babies tend to have small and even sometimes misshaped anatomy in the ear, nose, throat areas. So, thanks for that additional hurdle.

We put a lubricant on the end of the tube, I took a deep breath, and I stuck it up her nose. The nurse reminded me that I might have to push the tube a bit to get it through her tiny passageway, but every instinct I had was "don't shove stuff up your kid's nose, you'll hit her brain!" I think all the time I spent in the British Museum learning about Egyptian mummification processes contributed to this inability to perform this action properly. The first attempt was not good, we took a break, tried again, failed. The nurse tried the other nostril, it was even smaller and she got a bloody nose. At this point, she and I were both in tears and the kindly nurse finally took over, placed the tube properly, and assured me that if Clara pulled it out at home, we could always bring her up to the clinic to have it replaced. I hated that I failed this step entirely, but could not help feeling relieved that I wouldn't have to try that again while she was so little. If she still has the tube when she's bigger, it should be easier to place the tube as her anatomy grows. Whew.
I felt so bad for picking on her for so long, that I spent the rest of the evening cuddling her. We had Todd's family up to visit, and I just couldn't yet find it in my will to let anyone else hold her after what I had put her through. I felt guilty, but wanted to make it up to her by keeping her in my arms for the remainder of my visit. I even skipped pumping just to keep her close to me, I felt so bad. How to parents survive all the hard things their kids have to go through without just coming apart? Poor Todd, I guess my crying wasn't going to stop as soon as we hoped :)

Moving On Up

We spent a few more days in the CICU, making small steps each day. Clara had her breathing tube removed Monday and I finally saw most of her face, for the first time!

Todd and I received training on infant CPR and the fear of our situation became a little bit more real. I know that any kid, any time, can be in danger of choking or getting hurt or having their heart stop. But Clara had actually had her heart stopped, on purpose, for a significant amount of time. This made me feel very vulnerable on her behalf, and I realized that this baby had come to us for a reason, and we had a very real responsibility to take care of her. Was this really a good idea?
Each day she was getting a little better and each day I beat myself up over not spending enough time with her, not getting enough sleep, not doing any dishes. Todd kept me grounded and let me cry when I needed, but also keeping me cheered up and not feeling too overwhelmed. We visited Clara as much as we could, and were so proud of her strength.
There's no way to describe the ups and downs of having a baby in this situation. We continued to be so grateful for the knowledge of Clara's heart condition and the 22q deletion before she was born, it helped set reasonable expectations about what would happen, chronologically at least. But it is hard to prepare yourself for the less tangible things: how excited you will be to see your baby's face after almost a week after delivery; how hard it is when you feel you have to get permission before touching her face; how upset you will get when you realize that you don't know anything about your daughter. I couldn't answer questions from my mom or sister about how she slept, if her umbilical cord had fallen off, if she was gaining weight. I'm a first time mom, I don't even know what stuff to ask, and half the time, I'm not sure who to ask-a nurse,  doctor, her pediatrician? I knew this was temporary, that she would eventually come home and no one would know her the way her mom would, it broke my heart a little bit each time someone asked me about her and I had to say "I don't know..."
I finally got a bit of peace on Wednesday. Without any doctor's orders, any time we wanted, Todd and I could hold Clara again. She still had a few invasive lines in, so it wasn't easy but it was so soothing. During  shift change, we celebrated her progress by going out to dinner, just the two of us. We returned to the hospital and snuggled with our daughter. It was so right and finally helped me feel more like a mom. It was still a long way from having her at home with us, without an audience of nurses and doctors, but it was a step in the right direction. And Thursday morning, we got the next good piece of news-Clara had graduated from the CICU and would be moved to the surgical recovery unit, 1 floor up and 1 step closer to home!