Large volume love :)

Thou seemest, Lord, to give severe tests to those who love Thee,

but only that in the extremity of their trials

they may learn the greater extremity of Thy love.

-Saint Teresa of Avila

These last few weeks have been a test and a testament of our faith and love for one another and for our Lord. Having a baby is tough on a marriage. Having a sick baby 8 months after you get married is very tough on a marriage. :) Tony and I have faced challenges that couples who have been together for years struggle through, and we have also faced challenges that some couples never have to go through. As new parents we don't always know why Brynn is crying or what we can do to make her feel better. Typical conversations go something like this:

"Why is she crying?"

"I don't know...did you change her? feed her? rock her? give her her meds? check her stats? swaddle her? bathe her? play with her? walk around with her?"

"YES! And she is STILL crying."

"What if something is really wrong? Should we call the doctor?"

"I don't know. What do you think?"

"I don' know. What do YOU think?" And so on.

A few times her crying is so frantic and loud it drives stress levels through the roof and leaves a ringing in you ears. Late at night when you are both exhausted it is not only frustrating but also scary. You always want to be kind and patient with one another but nothing takes away your appreciation and gratitude for your partner quicker than a screaming baby. Deep breaths, prayer, and tag teaming (when possible) are saving graces and less messy than killing each other.

So far we have been so lucky that we haven't had any real scares with Brynn's health and have managed to support one another and use our resources when faced with questions or challenges. Two weeks ago Brynn had three large spit-ups in one day ("large volume emesis" in the medical world). Usually, she tolerates her feeds very well and keeps down her meds without an issue. For some reason though she not only threw-up frequently that day but she also threw-up a lot. I called the doctor who advised us to check Brynn's stats and continue to monitor her closely. She told us that if her stats were under 80 or she had another large spit-up we would have to page her and maybe come in. Her stats sat solidly at 85 but an hour after I hung up the phone (around 11:00pm) she threw-up again. I was really torn. I know that "spitting up" is not just spitting up when it comes to our kid. She has to gain weight. She has to keep her meds down. Any and all illness or change in typical behavior should be considered cardiac related until proven otherwise.

But I also have to rely on my instincts as a mother and as Brynn's primary caregiver. Her stats were fine. Her color was good. She wasn't fussy. She didn't have a fever. I really really didn't want to spend the night in the hospital and subject my kid to IV's and blood work for just a little spit-up. But I also knew that I would never forgive myself if it turned out to be something more and I didn't do the right thing. So, I had the doctor paged and waited by the phone. Strangely enough though we never heard back from the doctor and the three of us ended up passing out for the night as we waited for a return call.

The next morning Brynn's weight hadn't changed (pretty amazing considering how much she spit-up) and her stats were still solid. She tolerated her meds and didn't have another large emesis episode that day. I felt guilty that I felt relieved that the doctor never called back but I also felt more confident that I would know what to look for in the future if something was really wrong. Everything about this journey is a learning experience.

Since then, Brynn has been much better taking full feeds every two hours during the day (with longer intervals at night, thank God) and keeping everything down. She is gaining weight at the rate of about 45 grams a day and keeping down her meds. At our last cardiology appointment she had an echo that showed normal heart function and excellent stats. The cardiologist added an additional medication to help Brynn's heart not to have to work so hard. She consulted with the surgeon and decided to postpone Brynn's second surgery by a few weeks. Since Brynn's stats have been sitting in the mid-80's it is showing that she has not yet grown out of the shunt. This will allow Brynn to gain more weight and get a little stronger before going back for the second procedure.

I can't begin to explain how relieved I am that we have a little more time with our baby boo before having to go back to the hospital. I know that Brynn needs the second procedure to save her life and keep her healthy but I am having a very difficult time accepting the fact that we will have to go back and see her once again so sick and helpless. She has made so much progress and is such an amazing little baby. The thought that something might go wrong, that she will be in pain, and that we will be separated from her makes ME feel like I'm about to have some "large volume emesis". I'm really trying to use all the prayer, faith, and hopefulness that got me through her birth and the first procedure. In some ways it might be easier now that we know what to expect. But in some ways I know it will be infinitely harder now that we have met her, loved her, taken her home and cared for her. She is our baby.

We go in on November 18th for her cath and will stay overnight. Our surgery date has not yet been rescheduled but will most likely take place the week of Thanksgiving. In the meantime we continue to enjoy every moment (well, maybe not the inconsolable screaming baby moments) of our time together as a family. Knowing how precious a gift we have been given in her makes the more difficult moments more tolerable and the adorable moments that much more joyful. Enjoy the pics and the video of Brynn's tummy time! She is becoming much more vocal and interactive!

It gets better...

...is apparently not only the slogan for the anti-bullying campaign but also the mantra for new moms everywhere. It is a phrase I have heard countless times in the last few weeks and what I repeat to myself several times a day. Thankfully, things are getting better. After my meltdown two weeks ago we decided to hire a mother's helper who is coming three times a week for a few hours each day. I have been able to take a shower, get a nap, eat, pump, and even run to the grocery store! I think it is one of the best decisions we have made so far.

The days with a newborn are still long and pretty isolating. I miss working. I miss seeing adults on a regular basis. I miss getting to leave the house without packing for what feels like a three week vacation. But I am slowly and surely feeling more confident and comfortable leaving the house with Brynn on my own. We have gone to the pediatrician's office, to CVS, on two walks, and even across the bay to Dublin. Brynn does great in the car as long as it's moving. Traffic and stoplights are the enemy.

Brynn is doing exceptionally well. She is now over 9lbs and growing. We are really trying to get her on a regular eating schedule every few hours but like her mother her preference seems to be "snacking" throughout the day. Her average weight gain last week was only 20 grams per day, and it should really be more like 60. As a result I am trying hard to be more regimented with her eating habits. Her stats continue to be in the mid-80's which indicates that she is not yet growing out of her shunt. We should get a better idea of whether or not her surgery will be postponed after her echo on the 21st. Brynn did get shots this week at her two month visit to the pediatrician. The doctor was impressed with her weight gain (the cardiologists are harder to impress when it comes to fattening her up) and her strength (she almost looks like she is going to roll over when we put her on her tummy). She of course did NOT like her shots one bit and howled like a banshee every time she was stuck but at least it wasn't an agonizing 45 minutes of searching for a vein. And, I decided that since Brynn had been so brave with getting her shots that I would get my flu shot while we were there. It is the first time I have ever gotten a flu shot but I am so glad that I did. Knowing that I took an extra little step to help protect my baby makes me feel good.

I am still continuing to pump although my supply is pretty pathetic at this point. I'm not really sure it is worth to continue for a measly 40-50mls a day (not even one full feed). However, I'm having a really difficult time with the thought of stopping altogether. I know there are certain things that I just need to accept and cannot change but I really really wish I could give her more breast milk. I have even tried getting her to latch in the hopes that we might try some breast feeding. It worked once for 15 minutes three weeks ago and was the most amazing experience but she hasn't been able to latch again since. It seems like it should be the most natural and beautiful part of motherhood but is just not realistic at this point. The longing to feed my baby is so strong and painfully unattainable that it leaves a tingly feeling in my chest. At the same time, the $85 a month pump rental fee leaves a clenching in my stomach. Are really getting our money's worth at this point?

Tony and I both have a sinking feeling every time the mail comes. Daily we receive statements from HealthNet detailing the services they have covered. So far, we have been lucky to have complete coverage and have not been hit with any surprise medical bills. However, we have decided to COBRA my insurance next month to insure the great coverage and are going to be hit hard with the fees we originally were not anticipating. I could have a full time job just answering my phone with the daily calls we get from the insurance company, doctors, nurses, social services, and healthcare supply companies. We are so blessed to have so many amazing services being offered to Brynn and such amazing healthcare coverage. Hopefully I will have more time in the coming weeks to go through the stacks of paperwork that we are acquiring on the dining room table.

Thank you to everyone for the continued support we receive. We have been so touched by the phone calls, visits, gifts, letters, cards, texts, and emails that just keep coming. Tony, Brynn, and I feel so loved and so lucky to have such amazing people in our lives. Speaking of which, all you amazing people who would like to come by and meet Brynn before we got back to the hospital, now would be a great time. As long as you are healthy and are willing to wash your hands we would love to introduce you to our baby before she becomes the incredible wired up little tube receptacle she will be in the hospital. Believe me, its much easier to hold a baby when she is not attached by tubes and wires to fifteen different machines.

We hope everyone is having a beautiful Fall and look forward to (hopefully!) spending some time with family outside the hospital for the holidays. Be on the lookout for Halloween photos!

Two months!

It's hard to believe that Brynn will be two months old on Friday (and that my disability leave will be up in 3 days!). Time has been flying by with each day sort of blurring into the next.

Last week was my first official week home by myself with Brynn. Luckily, my mom still stopped by a couple of times to help with laundry and let me take a nap. We also got a visit from my parent's housekeeper which really helped with all of the deep cleaning that we just have not been able to get to. In addition, some very good friends came by with food, did my dishes, and sat with Brynn while I was able to get a quick nap. I'm still sort of reeling from how much work a new baby is (even with lots of great support). Those Sister Wives on TV might be on to something...:).

Last week Brynn and I took a trip to the pediatricians office. It was our first time out of the house alone together and it was sort of nightmare. Brynn had been up every two hours all night long and I was exhausted. In addition, she refused to go down for a nap in the morning, or even let me put her down for longer than 3o seconds. By the time 1:00pm rolled around I was so tired I could hardly see straight. I had to take a shower or I didn't think I would be awake enough to take her to the doctors. I finally had to put her down and let her cry while I took the fastest shower of my life. Still, I couldn't pump, eat, and barely got dressed. I was so stressed from her constant crying by the time we got in the car I was shaking and distracted all the way to the doctor's office.

Our pediatrician is really awesome and does a great job of treating Brynn just like any other baby while giving her extra special attention around her heart health. She was impressed by her weight gain, her vitals looked good, and she is reaching milestones on target. The doctor decided that Brynn would benefit from getting her two month shots at our next visit, and that she qualifies for an additional vaccination only given to babies with compromised immune systems. She also gave me some helpful information on decreasing discomfort from gas and spit-up which we have noticed more in the last week or so.

We are finally getting into (somewhat) of a schedule at home. Brynn wakes me up for good at 7:30am and we do meds, a feeding, diaper change, weight check, and get dressed (well, she gets dressed and I change into a different pair of sweatpants). Then, she hangs out comfortably in the swing for about 2o minutes (long enough for me to wash the dirty bottles, drink a cup of coffee, and pump). Then...the fussies set in. Diaper changes, feedings, rocking, and yes, even swaddling does little to relieve her fussiness. By the late morning I am starving, exhausted, and usually have to pee pretty badly since setting her down for even that long causes her to wail. If I'm lucky I can get her to go down for a short nap. Afternoons are better. She will nap for longer some days of the week but still wakes up pretty frequently for food or comfort. The sleep deprivation and inability to eat regularly, shower, or just have five minutes to myself is getting pretty hard. I'm pretty irritable most of the time. I find myself watching the clock and waiting for Tony to walk through the door and relieve me for a few hours just to do the things I used to take for granted (I get to the dishes, yay!).

And then are the days (like today) when Tony walks in the door and the house is a complete disaster (stuff strewn all over the living room, bed unmade, clothes unwashed, dishes piled up) and both Brynn and Mommy are crying inconsolably on the couch. It's hard not to feel like a complete failure as a wife and mother in those moments. Before we had Brynn I had visions of Tony coming home to a perfectly clean house, with dinner on the table, the baby pacified, and me greeting him with a smile. Perhaps I've seen one too many 1950's sitcoms. The reality could not be farther from the truth. I don't what I would without Tony's understanding, support, and constant reassurance that I am in fact a good partner and mother.

To make things a little easier we have decided to hire a part time mother's helper who can come in for a few hours a day so that I can take a nap, take a shower, and maybe do a load of dishes or the laundry. Tony will have to take on a couple of tutoring clients to offset the cost of bringing this person into our home. Ultimately, this will mean a longer day for him at least once a week. Once again, I reminded of the sacrifices he is willing to make in order to make life easier for Brynn and me.

In terms of Brynn's health I am reminded several times a week of how lucky we are that Brynn is doing so well. Her O2 continues to be in the mid-80's, which is excellent, and her heart rate is consistently in the 150's without much fluctuation. Our cardiologist is thrilled with her weight gain and continued progress. It was pretty amazing to see Dr. Doom and Gloom come alive around Brynn. She cooed, cuddled, and rocked Brynn during our appointment on Friday. I guess there is a reason she is a pediatric cardiologist. The appointment went very well. Thank God my mom decided to come with me since our "quick visit" to the cardiologist turned into a six hour ordeal when we went to get Brynn's blood work done. We are still waiting for the results of panel from genetics. In the meantime, all the standard blood work that is usually taken needed to be done since Brynn received blood and platelets after she was born, making the results invalid. We ended up having to wait hours for the right phlebotomist, for them to locate the right tube, and apparently for the stars to align before they called us back. I ran out of formula, diapers, and patience. Then, poor little Brynn had three painful "needle sticks" aka digging in her arm for vein before enough blood could be drawn.

The cardiologist said that she might wait for Brynn's second surgery as long as her stats continue to remain good and she continues to gain weight. This is great news of course, but also changes our plans to be post surgery and home with our families by Thanksgiving. We might end up spending the holiday in the CVICU or on 3 West. No matter where we are, I know that we will continue to have so much to be thankful for!

Enjoy the pics of Uncle Dean's visit, Stars and Stripes day in the Watts household, and sleepy Brynn. Don't let her fool you...she never sleeps!