A Whole Village of Moms

We have shared with many of you the essay "Welcome to Holland." It was written by a mom with a special needs child in 1987 to describe the emotional journey so many of us go through when our expectations for our lives change. I've posted this essay on the main page here in case you've never read it.

About 2 weeks before
delivery

I did not want kids. I did not want to get pregnant, ever, I was not afraid of anything more than I was of lactation, I could not imagine myself as a mom. I had no interest in Italy. I met a man who felt the same way, there was just no drive to add complication to our lives by having a baby.
And then the craving for alfredo sauce started. And certainly not the kind you get at Olive Garden, I needed the real thing. And Todd and I started to talk through our fears and concerns about Italy, and how we were ready to explore that path. And then we got pregnant and the light came on-we were going to Italy! The place we never wanted to go was suddenly the only place to go. And how great that so many friends and family members were already there, we would join them!
I loved being pregnant. I felt so good, I did not have more than 1.8 seconds of morning sickness and no heartburn. I loved talking to moms about their experience, except when they said "oh you just wait, it gets worse!" (about not sleeping, being tired, etc. They were mostly wrong. I am really good at being pregnant.)
And then...In the space of a few hours in a dark exam room, my reluctant-ish trip to Italy was highjacked. But my excitement for Holland, though earned through tears and pain and fear, is oh so strong! Our transition to this new and unexpected path has been smooth and scary at once. And we have had the most amazing welcome committee. The women (and men, but this is about the women today) that have offered advice and service and love and support....We are surrounded by a village of the most glorious of moms:

Rah Rah Rah!
Go Moms!

Thank you Gabby for your text on the morning of delivery reminding me that the weather in Holland is unpredictable, but beautiful.
Thank you Pam for saying that no one can do this better than the one who loves her most. I needed that.
Thank you Kay for making me laugh and saying "you just can't catch a break, can you?" when hearing yet another piece of bad news. I needed the honesty that day, it lightened my load. And Shannon, Patty and Kim, for laughing along with me during this entire pregnancy.

Clockwise, From top: Abby,
Gracie, Ellie and Millie

Thank you to the person that put together and updates GermWatch. Clearly, this is a mom or someone who just gets moms. (Along with the mom at 3M who figured out Avagard and Cavilon)
Thank you Abby, Gracie, Millie and Ellie for being so excited at my baby shower, for sending me texts and drawing me pictures and picking cute outfits for Clara.
Thank you to the friends of friends and friends of family that have sent presents, kind notes, and prayers our way. 
Thank you to the CICU and CSU nurses and techs at Primary for teaching me how to take care of a high maintenance baby and her tubes, machines, stickers and meds. And to Kim and the nurses in the University of Utah special care unit that mothered me, in the best way, after delivery :)
Thank you to all the London 1999 girls who have sent such sweet encouragement and love, after all these years and all this distance.
Thank you to Jontue, Serenie, Danielle and the work friend moms for all the advice and well wishes, for being almost as excited as we were.
Thank you to my Heart and 22q Mom-sisters. I learn from you, I laugh with (and sometimes at ;) you, and I am blessed to have your examples. I have been so touched by support from so many moms, including Debbie, Jill, Hillary, Hollie, Noelle, Liz, Lacey, Allison, Danielle, Kristi, Angee, Heidi, Patti, Ella...It sounds like my acceptance speech at the Oscars, but truly, I wanted to make sure to acknowledge as many as I could remember. This is my official endorsement of the power of the internet for good-these forums have saved my sanity :)
Thank you to the beautiful extended family members, aunts, cousins and in-laws that we don't often get to connect with. We have had an outpouring of love and support from people all over this country, not to mention dear friends in India, Clara is so lucky. Thank you Lindsey and Lindsey and Kathy, Linda, Emilee. And Sharon, Todd's mom, thank you for teaching Todd to love and support women the way he does.

Nana and Clara

Thank you to my sisters. I hope we are able to give Clara a sister some day. Everyone needs a Jenn to share her experience in this world and show up when you need it and bejewel your baby girl, a Kim to dance in your labor room and keep you busy with crafting and pay part of your speeding ticket, and a Sherrie to tell you about the coolest and grossest parts of this process and share your story with a community of even more great moms (and remind you how to pee after they take out the catheter. Blow in to a straw, in case you didn't know.)
And...to my own mom. I will never be able to list the ways in which you have helped me arrive in Holland with such joy and faith. I love you for being supportive and excited and scared and patient and giving. For doing my dishes every time we leave the house, for putting up with Gir when you watch Clara and pretending he is a good dog, for showing me how to bathe my baby girl, for making sure I don't take myself too seriously and just enjoy this time. You are the best example I could have on how to be a mom and how to help Clara become a good and happy daughter.

Todd, thank you for this gift of motherhood, for my baby girl, for loving me so much that you will brave the uncharted canals of Amsterdam with me in order to find the most beautiful of tulips.

Let Me Tell You About My Clara

Clara and I have a morning ritual.
I get her out of her bassinet and put her
in the Boppy on our bed. I kiss her face
over and over and we tell each other
about our night. And I try to convince
her to go back to sleep for just
a few more hours...This is her response

Clara hates wearing clothes. She prefers to wear just her gloves, diaper optional. Heart babies often sweat more because their little hearts are working extra hard. Combine that with her Papa Wallace's genes and this girl and I will be having a lot of discussions about exactly how much of her body needs to be covered.

 

She's really good at bingo. Twice, TWICE, she won bingo in the CICU. She only lived there from the time she was 2 hours to about 1 week old. And the first time she won was her first morning there. She won this hair clip.

BINGO!

 

Clara will probably learn to walk and crawl and sit up within 'normal' baby time frames, but there is a good chance she will not talk as early as other babies. This could be a huge relief to Dad, since he'll be home all day with this precocious little one.

Clara smiles a lot in her sleep. Sometimes we are sure she is pretending to be asleep and laughing at what we are saying. We are pretty funny, I can see that being the case.

She loves to eat, when she's not too busy or too tired or too moody. She has put on 1 pound 11 ounces in her first 6 weeks of life. That's like 25% of her birth weight. Legends are told of the day she passed her swallow study. ("And then, after NO PRACTICE, she drank over 25ccs in just MINUTES. And she didn't even aspirate a bit, despite some arching of the back!" In feeding tube circles, these are proud moments. Probably in all parenting circles, too. But this is the only circle I know.)

When you use these snot suckers on Clara, she rarely gets upset. She likes to have her nose cleaned out and is happy to let me do it since she has no access to her fingers.

Clara is a BYU fan. When I sing the Cougar fight song to her while doing cheers with her arms, she is so happy. Never have we experienced this joy during the University of Utah fight song (because I don't know it and have never sung it to her.)

Her Dad and Aunt Kim had it right-Clara is trying hard to be a thumb sucker. That's the first thing in her mouth when she's hungry. But we always have her hands covered to avoid unplanned tube removals, so every time I change her gloves, the right one, especially where the thumb sits, is dirty and wet and kind of smelly, like formula.

My Clara hates to be swaddled, but she will let me snuggle her in so close no matter how warm she is. When I kiss her cheeks and neck and chin over and over, she usually gets a look on her face akin to putting up with me and secretly enjoying it. This post is full of examples, including a gratuitous shot of her cheeks for Aunt Sherrie's friend Lacey.

She can sleep through our very noisy dishwasher, Gir barking, me laughing (even when she is in my arms and I am laughing so hard and loud that her little brain must be rattling from the shaking), the song "I'm Sexy and I Know It", and all sounds made by any medical equipment on the planet.

Clara is ticklish-under her arms, on her sides, her feet. I can't wait until she can laugh because I know all of her spots now.

"This is going on my blog!" and other threats Clara is immune to...

*Disclaimer-I'm a jerk. After being mad at my baby for 3 days because she was so fussy and angry, we found out she has an infection around her incision from her surgery. Worst. Mother. Ever.
After a few days of freedom (No oxygen tube running throughout the house! Bottles every few hours! Feeding tube only hooked up at night!) Clara started getting fussy and tired. We had a few visitors, so I chalked it up mostly to her irregular schedule. On Sunday morning, her NG tube got blocked. We had our home health nurse come help us place a new one, then we left her with Nana Wallace while we ran errands. As usual, she was an angel for Nana Wallace, no crying or anything. And then...

CLARA SMASH! (If you get that
reference, you are a nerd. Come by
and hang out with us.)

She was MAD. When she was awake, she wouldn't eat much orally and she spent a lot of time yelling at me. We had to give her food through her tube mostly, and she threw up one of the feeds.
We had a long night of Clara crying, it looked like she was having some reflux and gas. We kept trying to sit her up and burp her to help her get comfortable, but she and I had a lot of disagreements through the night. Todd is so good to be the one up and down with her while I sleep, but of course I couldn't really rest while she was so mad. We spent Monday fighting the same fights. I was SO MAD and SO TIRED. I threatened to tell everyone on here how mean she really is, but she didn't care. I put her in her crib for the first time, and stomped out of the room telling her to "figure it out!" (and then came in crying about 19 seconds later, and hugged her.) I told her she had to go live with Nana Wallace until she could talk nicer to me. We just could not get this girl feeling better.

Sorry I was so mean
earlier. Oops.

I finally decided to give her a bath since that usually results in her calming down and sleeping. We have to keep part of her incision covered and dry, as it is still a bit 'open.' When I was changing the bandage, I noticed that the 'open' area looked bigger, weepier, and was red around the edges. We called the home health nurse and he agreed to come check it in the morning (she didn't have a fever and the wound was not looking too scary at that point.) Then I finally checked in with the heart moms and got a list of ideas to help her out (gas drops, warm bag on her belly, tummy rubs) and she FINALLY FELL IN TO A DEEP SLEEP! Problem solved.
Tuesday morning, Clara was much happier and when I put her in her Boppy on the living room chair, she had her usual morning conversation with the ceiling fan. She stares at it, and moves her mouth and hands around like she's telling it stories, it is her best friend. The nurse came to check her scar and suggested we call the cardiology team to see if they wanted to see her, he felt it looked a bit off, even though she still had no fever or any other signs of being sick (because she wasn't yelling in his face at that time, of course, and we thought that had been resolved by gas drops and had no connection to her incision.) Cardiology suggested we come in the next day, since we would be up seeing genetics anyway. Sounds good to me!

Crying? ME?

Clara and I then took a field trip to Nana Wallace's house and her store Upon the Shelf to check out Clara's Corner (More details forthcoming on that...) As per her usual game, she behaves beautifully for her grandmother, and her mother looks like a crazy woman who complains about her mean baby for no reason.  
Our appointment with genetics was early, and we didn't get great sleep the night before. But the geneticist was so optimistic and full of good news. Her t-cells looked good; short in some areas, but he suggested that most of us are, and since she had made it to 5 weeks with no major or weird infections, she would probably be able to fight off diseases as well as any of us. He looked at her face, her muscle tone (she has strong soccer legs), reviewed her eating history, and talked to us about what challenges we might expect with 22q. He ordered a calcium test for follow up and sent us on our way. Hooray!

Then we went to cardiology at PCMC to have Clara's chest looked at. The next few hours were a whirlwind: go to outpatient registration, go to the lab, draw blood, Clara SMASH, wait in cardiology waiting room, get moved to room to have nurse check vitals, back to waiting room, cardiothorasic surgeon comes by to look at chest, moved to room again, cardiothorasic surgeon poking in Clara's chest with ACTUAL SCISSORS, Clara SMASH, go to admitting, finally get admitted back to surgical unit, IV team stabs Clara 3 times to get an IV in and bruises her leg with the turniquet, Clara and Mom and Dad SMASH SMASH SMASH. Finally, Clara was given some meds for pain relief and fell asleep. Mom and Dad went home and crashed. We are so thankful for the most expensive and most qualified babysitters-the nurses of the Children's Surgical Unit at Primary Children's Hospital. They are getting a fruit basket.

ALWAYS keep one arm
out of the blanket. You
need at least one arm
to defend yourself.

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!