Thursday, April 26, 2012

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!

Wednesday, April 25, 2012

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.

Friday, April 20, 2012

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!

Saturday, April 14, 2012

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!

Wednesday, April 11, 2012

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.

Tuesday, April 10, 2012

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 :)

Saturday, April 7, 2012

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!


Saturday morning, the world was bright again, and I was ready for anything. As soon as Todd got in, we went to see Clara and talked to the ICU doctor a bit. She immediately relieved my concerns-The odds were that Clara still had some thymus tissue in other parts of her body, as is common, that would produce t-cells. Those, combined with us being very careful about germs and not exposing her to a huge variety of environments while she was young, meant a very good chance at keeping her healthy, and on this planet for a long time.

Clara in her full body armor including
chest cover, eye shield and a
billion tubes.
Clara was pretty feisty again, clearly uncomfortable, but the nurses and unit doctor advised us she was doing well and that her chest would be closed Sunday morning.
I was also discharged from the hospital and finally headed home-to soft beds, soft chairs, and so far away from our baby. I was so torn and spent the evening trying to recover and feeling guilty for leaving Clara. I was angry that I didn't feel physically better already, that I couldn't find the energy to spend more time with her while she was working so hard to find the energy to recover. What kind of  mother just leaves their 4 day old baby that just had open heart surgery so she can go home and SLEEP? It felt so selfish, no matter how many times my husband, mother, nurses, etc. reassured me that I had to rest and recover.
We had been told her chest would be closed Sunday at 8:00 AM. They would do it bed-side, and told us to come up around 9:30 or 10:00 as she would be done and ready for us at that time. We arrived at 10:00  and the surgeon and crew were still in her room, the nurse advised us it would be about another 30 minutes, and Dr. Burch would come find us when he finished. We moved to the waiting room and counted the minutes. It was quiet that Sunday morning, except for someone a few chairs away. She was on her phone complaining loudly to one family member about some other family member. It was the kind of conversation I would never have noticed except that it somehow felt wrong, after the last week of my life, to think there was any family that wasn't as strong and supportive as my own. How  could people go through challenges like sick kids without the love and steady guidance of their mom? I was reminded of how lucky I was.
And then it had been 30, 38, 46, 55 minutes. I was texting my mom, going crazy, absolutely terrified that we were now well over an hour longer than I was first told. I was assuming the worst and could not hold back the tears. Why wasn't the doctor coming out to tell us it was done?
Post chest closure. Her arms had to be
pinned down to stop her from
trying to extubate herself.
The phone in the waiting room rang. Another lady in the room answered and called out for the family of Clara. Todd took the receiver, and after just a sentence or two, I could see the relief on his face and he gave me a smile and thumbs up. The doctor had been called to an emergency just as they finished Clara, but all had gone well and we could come see our baby girl!
She was already looking more calm and relaxed, and it was great to see her keep progressing every single day.
Before her anesthesia wore off, the staff also placed an NJ (feeding) tube that went from Clara's nose down to her small intestines. This could now be used to feed her and she would finally get my breast milk. It felt good to finally have something to contribute to her healing process beyond a few pats on her arms and head. I still had not really held my baby girl and was feeling so lost, but this was a step in the right direction.
We also had Grandpa and Grandma Wallace up to visit late that night. My dad had had to leave town the morning after Clara was born and only got to see her very briefly in her transport from the University of Utah to Primary Children's. A few days late, but he finally got to meet this amazing little girl!

Thursday, April 5, 2012

Open Heart

A baby's heart is about the size of a walnut
I don't want to think about what happened to my baby girl just last Friday. Some day I will share details, but for now you can Google truncus arteriosus repair yourself if you want the technical information.
A quick family photo before
I can tell you it was a hard day,  made better by good news and love. Todd and I met Clara in her room very early in the morning to spend a few minutes together. We followed the surgery team and our baby to the entrance to the OR, we got to quickly kiss her goodbye, and then we were left alone to have a small breakdown. My husband and daughter are such strong people, and I can't imagine how I would have survived that morning without Todd there to pick us up.
They gave us a pager since I had to go back and forth to my room at the University for blood glucose testing and medicine doses. They advised us we wouldn't hear anything for about an hour and a half, and that should just be an update when she was successfully on the bypass machine. We had not slept the night before, and Todd had planned to go home but did not make it because it was such a late night, so he left to go shower and clean up. My parents and sister came up to entertain me in his absence.
The first update came through as planned-she was on thy bypass machine and doing well. I had to go find a nurse to help me read the message on the pager as I realized I had never actually used a pager. Once I was free to leave again, we went to the waiting area for the OR and commandeered a corner. We met with a social worker and had a visit from my mom's friend, a hospice nurse who happened to be in the building that day. We got the next update that the repair portion of the surgery was almost done and Dr. Burch would be by to see us in about an hour. Slowly, Todd and I started to catch our breath as the good news continued to flow in.
Dr. Burch finally made it in to give an update. He had been able to successfully place the pulmonary artery piece needed, despite it being 13mm instead of 12mm like he wanted. The repair had all gone well and she was stable. He also mentioned (so casually!) that she did not have a thymus and was probably missing her two lower parathyroid glands. In my previous research of 22q, this condition had been somewhat common and would impact her immune system, but seemed treatable. I focused on his message that all was well, and that Todd and I could see her in about an hour.
Post Surgery, with all her tubes
and a cover for her chest
After talking to Dr. Burch, my sister did some quick internet research and felt that she was seeing the same thing-a missing thymus meant some extra work, but that was about it. My family left and Todd and I were free to go see Clara!
She was quiet and calm, and covered in a million tubes and a shield for her open chest. She was puffy from surgery and we were barely allowed to touch her because of the impact on her blood pressure. But she was safe! She had survived open heart surgery at the age of just 3 days old and she was marching forward.
Todd and I spent the evening visiting the cafeteria (For 5 days, I hadn't been out of my room except to go see Clara and wait in waiting rooms, so this was more exciting than you'd think!) We hugged and cried and visited our baby again and just let the relief wash over us. This was the first big hurdle to get over and it had gone swimmingly!
Late that night, after Todd left, I started to do some research of my own on Clara's missing thymus gland. Never in my life had Google let me down so completely. I found out a lot about how the thymus works (it produces t-cells that fight infections. Most of us produce enough that by the time we are adults, our thymus has atrophied because it is no longer needed) but the information on missing thymus was...scary. For people that lose their thymus or have it removed at some point, their risk is somewhat average-if they have enough t-cells, they may just have to be extra careful of germs. But the only information I could find about people born without a thymus entirely was terrifying. Without a transplant, which was still experimental, these babies would not live more than a year or two. Or, maybe, they could live in a sterile environment like in a bubble inside a hospital. I thought I was seeing the most extreme things, as is often the case with the internet, but I tried and tried to find more information and the links kept pointing to this same information.
I spent the rest of the night getting almost no sleep. I cried and cried and tried to hide my crying when the nurses came in every few hours to give me a pill or check my vitals or measure my pee. I was coming apart and didn't know how to find comfort. I knew I could call Todd, but he literally had not slept or eaten much in days and I needed him to have at least one night to reboot and regain strength to help me through the next big hurdles coming our way. And if I had called my mom, I know she would have run right back (she even tried, when we had talked on the phone and she could tell I was not doing great. I told her it was just postpartum weepy and I was fine). My dad had been out of town a few days and I knew she also needed some time with him to relax. I spent time worrying that my Clara had just a few years and my heart broke over and over. I finally had the nurse get me a sleeping pill and rested for an hour or so. I couldn't process this information and would wait for help.

Wednesday, April 4, 2012

How to Bond with Your Baby-Long Distance and In Front of a Crowd

And suddenly, you wake up one day and you are a parent...and you can't move your legs still and you're chained to about 6 IV lines and other equipment and you haven't showered for 3 days and you met your baby for just 10 minutes and now she is in an entirely different building. I was so grateful that Clara had arrived safely, and I wanted to badly to jump out of bed and go start being her mom!
My first attempt was not so successful. My right leg was a bit wobbly, but my left leg seemed pretty numb still from the epidural. The nurse helped me up to go to the loo, and as I was just about there, my leg gave out and I fell (Fall Risk bracelet was my curse!) Poor nurse Kim, she was upset about this for days, I was the first patient that had ever fallen on her watch and she could not stop worrying. I was fine, and once I got back to my bed, we determined that I wouldn't be able to try standing again that day and would be confined to my bed and a wheelchair.
Despite great swaddling by the
nurses, Clara managed to free an
arm! She has been trying to get
that breathing tube out every time and
that's the first place her little hand
After he visited Clara first thing in the morning, I had convinced Todd to run home and shower and relax for a few minutes before the next few days got crazy again, but my mom came up to visit while he was gone. She went to Primary to check on Clara for me, and brought back some beautiful pictures. When Todd returned, he help me in to the wheelchair and we finally got to go see Clara together! We arrived at the CICU and kicked out all other people so we could have a few minutes as a family. I was stuck in the wheelchair and couldn't really get a good view up to her bed, but I got to touch her little hands and cheeks, and we talked about how much we loved her and hated that she had to go through this. I'm so glad that she will not have to remember these days, because it is so upsetting to think of her spending her first few weeks of life in a bed by herself, going through so much pain and fighting to hard to just survive. It isn't supposed to be like this.
We spent the afternoon showing her off to various family members and talking to nurses and doctors. They were tentatively planning to do surgery Friday morning but wouldn't confirm yet.
A scar-free chest just doesn't have
enough character for our little one!
Thursday morning, I finally made some progress and was able to stand up and kind of walk on my own! I got to shower for the first time since Sunday and I was so excited to be getting closer to being able to really see my baby again. I was stuck in my room a lot because, due to a fever Tuesday night, I was on IV antibiotics regularly as well as a variety of other tests and such to keep me healthy. When possible, I escaped to go see Clara, but it was not enough. Being a first time parent is daunting and scary enough, but when you can't hold your baby, have no time with her that is not supervised by at least a nurse, and you have to ask if it's ok to touch her or if her blood pressure is too high, it's really hard to feel like a mom. I love that the nurses and doctors have taken such great care of her, and they genuinely care about her and are so sweet, I'm still the mom and I'm jealous and sad that there is this distance between us. I love and hate this situation so much.
We got confirmation that her surgery would be Friday morning, and met with anesthesiologists and doctors and her surgeon and signed a billion release forms. We also had a few friends and more family come visit our special little girl, it was a busy day!
Finally, on Thursday afternoon, they moved Clara to a quieter room and got a doctor's order approved to let me hold her for a few minutes. It takes a nurse and respiratory specialist to safely move her in to my arms, and she was oh so fussy from the movement and new circumstances. I wanted to hold her against me and snuggle and kiss her face to make her feel better, but I had to be careful not to jostle her IVs and such. But oh, how I cried and loved her so much, instantly!
That night, we were able to have my brother, Todd's brother, and my brother in law come give her a blessing prior to her surgery. We were exhausted by all the activity that day, and finally settled in to rest late that night. Our next giant hurdle was awaiting us first thing in the morning.

Tuesday, April 3, 2012

At Last!

What a difference a week makes! Our Clara is here, safe and progressing well! We checked in to the University of Utah hospital Sunday night (3/25) to begin the induction, and she finally arrived through c-section Tuesday night (3/27). She weighed 6lb 14oz and has stolen our hearts completely!
Clara in her transport, just an
hour after delivery
 Monday morning, I hadn't dilated much on the first med, so we decided it was time to start the pitocin. We also had them do the epidural that morning. I had heard so many stories about it hurting and such, but it really went well and the first my major fears was alleviated. They also hooked up a catheter, which I kind of liked. I drink a lot of water, so to not have to get up and pee every 30 minutes was kind of a relief. I also received an exciting new bracelet to remind all around me that I was a fall risk-a bright yellow marker to ensure I didn't try to stand on my own. No worries, my legs were numb.
I had invited my mom to join us in the labor room, and previous to any delivery action, during the times I could convince Todd to go rest, my sisters and sister in law visited as well. I loved the time we spent having a design meeting to organize our plans for this year, and Kim was (as always) super helpful and full of ideas on getting Clara here faster. (I'll spare you the details of her dilation chants and such, if you were in the waiting room, you probably caught an encore anyway!) I had so much fun for most of this process, I'm not sure if that's how it is supposed to go, but I truly enjoyed it! From our room, we could see the monitors for all the women in labor and we loved watching the other ladies' contractions get bigger and bigger and then go to deliver, it was like a very slow race where everyone, eventually, wins!
Later Monday afternoon, the doctor (Dr J. Lo, for the record! She was amazing!) was ready to break my water. I warned her and the nurse, as they got towels ready, that all my NST techs had said I had a lot of fluid. I warned them to get more towels. No one listened, and boy were they sorry! Todd, the doctor, the nurse and I could not stop laughing, it sounded like a babbling river and if I hadn't already set my heart on Clara, I might have changed her name to Brook at that point!
Not much progress was made Monday night, though we did get a bit of sleep. Some time that  morning, I dilated a bit more, but then stalled. They turned the pitocin off temporarily and then started it over, which FINALLY got things going. Before I knew it, it was late evening and it was finally time to push. It was down to just me, Todd, my mom and the nurse and doctor. Every medical professional that had checked me felt like Clara was pretty big, about 8 pounds, and Dr. Lo was concerned about that combined with my small pelvis, having been in labor for 2 days, Clara being face up and my water having been broken over 24 hours previously. So she let me push for about an hour, and then let us decide if we wanted to continue or move to do a c section. I was so tired and just wanted my baby here safely, so we decided on the c section.
Todd in his scrubs, ready
for our big event. They made
him turn over his keys for these
scrubs, in order to ensure they
got them back. Apparently, this
is a problem in the OR these days.
They moved us to the operating room and as soon as the incision was made, had Todd join us. I remember being overwhelmed when, after a nurse put bracelets on he and I, he whispered that his said "father." It was so exciting and I was so proud of how strong and loving he had been during the whole process. He 'slept' on this awful pull-out couch and hardly ate or left my side. He had spent two days laboring as hard, if not harder, than I and we were so ready!
Clara was finally born at 8:16 PM. When they got her out, they held her up for a moment for Todd to see. She made a face like she was screaming, but no noise was coming out. We didn't know it until later, but she wasn't breathing. We had already been prepared that she would be taken to the NICU immediately for cleaning and testing and such, so we weren't surprised when I didn't get to even see her. We were just glad there were so many smart professionals there to take care of her and keep her safe. We were taken back to the labor room and waited for about an hour. Then, the Lifeflight crew finally brought this little miracle in to our room. She was in this giant plastic box on a transport bed and was covered in wires, had a breathing tube in, and was so beautiful! We got to see her for just about 10 minutes, before she took a trip down the hall to quickly visit her waiting paparazzi-our most amazing families were in the waiting room, and got to snap photos as she wheeled by on her way to Primary Children's next door. Todd got to follow the crew and make sure she was settled for the night, and I was transferred to the recovery unit. Our little one had finally, finally arrived and she was so perfect!
Our first family picture