Pictures!

Pictures of before the cath, in the hospital, after the Glenn, and the few blissful moments of rest Brynn got while she was home. And one video of the creative way Tony got her quit screaming for a few hours. :)

This is the post that never ends...

I can't believe it has been over a month since I blogged. I'm sorry to those of you who are not on Facebook and haven't been getting the updates that way. It has been an eventful month. The task of writing it all down has seemed overwhelming and emotionally exhausting so I have been putting it off. But here goes...

The last time I blogged, we were waiting for Brynn's cath procedure and her Glenn operation. Originally, I felt we had worked things out perfectly. We had Brynn's pre-cath appointment at the clinic, a check-up with the pediatrician the following week, the cath on the 28th, and the Glenn scheduled for December 5th. Then things began to go a little crazy. We could tell that Brynn was not feeling the best. She was having more emesis than normal, and more poopy diapers as well. She didn't seem overly fussy or sleepy, but we consulted with the nurse practitioner several times and kept a close eye on her O2 saturations. We got the green light to stay out of the hospital until the cath. We were excited that we would not be in the hospital for Thanksgiving, and that our families would not have to spend the holiday bringing us turkey leftovers.

And then came Monday the 21st. Tony had the week off from school and he woke me up to tell me that my Mom had just called to tell us that her sister's husband, my Uncle Mark, had suffered a heart attack while out jogging. The news was jarring and unbelievable. Mark Adams is one of the most athletic people I know. He runs marathons, competes in triathlons, and takes very good care of his health. At that point we believed without a doubt he would recover quickly. A small part of me even believed he and my cousin Jeff would still join us for Thanksgiving that Thursday. I had just been thinking the day before that Mark would get to hold Brynn for the first time.

He had been so supportive and encouraging since we had gotten the diagnosis. We had never talked on the phone much but he had made a point of calling several times in the months leading up to Brynn's birth. He and my Aunt Martie had come to visit Brynn in the hospital while we were still in the ICU. He hadn't been able to hold her at that point. He frequently told my cousin Hillary that Brynn was here to teach us all a lesson about life.

Two days later, on the way to the pediatrician's office, we got the call that Mark had no significant brain function. He had been without oxygen for too long before being revived. Stunned and crying we stumbled through the appointment making plans to visit the family in the hospital. In addition, I rushed around trying to locate and secure breast milk for Brynn for the night before the cath. She had to be without formula for 8 hours before the procedure but could have breast milk up until almost right before. The milk bank was closing and would not reopen again until the following week, so I had to rush over there before they closed up.

My sister, step-dad, and I drove up the day after Thanksgiving to join my mom and say our goodbyes to Mark. The outpouring of love and support for the family was amazing. My heart continues to ache for my aunt and cousins. It seems so unfair that they have to loose such an amazing husband and father. Brynn might be here to teach us about the amazing gift of life, but I think Mark taught us about the amazing gift of living. I hope I can teach Brynn to live life with the same generosity, passion, gratitude, and spirit that Mark possessed.

Two days later, we took Brynn in for her cath procedure. From the moment we got there I felt anxious and upset. We were still reeling from the loss of Mark, exhausted from getting up all night to make sure Brynn had enough to eat, and worried about possible complications related to the procedure. Tony and I put on scrubs and walked Brynn into the cath lab. They would put her under before starting an IV or taking blood for labs. We watched as they put her under (not something I would recommend), and then waited in the surgical waiting room with other parents (the scariest, most electrically charged, anxious ridden place in the hospital). They say the woman who works behind the desk has been there for years. I don't know how she does it.

Six hours later, they finally told us we could go see Brynn. She was in recovery and still pretty drugged up. Her cries were some of the most horrific I've experienced, and I'm sort of an expert at this point. She was starving and desperately trying to eat but kept choking and flailing around. At this point she hadn't eaten in 14 hours. We were ushered upstairs to 3 West, the cardiac recovery unit where we spent two weeks last time before discharge. The doctor finally came to tell us that the cath had gone well and that Brynn appeared ready for the Glenn the following week. There is a reason this man only works with unconscious patients; his bedside manner was atrocious!

My mom and sister got us dinner and then headed home (bless them for sitting in another hospital with us after everything they'd been through) and Tony and I tried to get Brynn settled for the night. Amazingly, we had our most favorite nurse from 3 West. Brynn seemed to be more comfortable with some pain medication and some food but we noticed a few things right away. The first was that one of her legs was purple. The other was that she still could not keep food down. By 4am that morning her O2 stats started to fall into the 50's. Alarms sounded. Nurses and doctor's rushed in and began to give her oxygen. Even at 100% she was not coming back up. Tony and I sat down and held each other. The other mother in the room left her daughter's bedside and began praying down on her knees. As they wheeled Brynn out the door to take her to the ICU the woman slipped a small guardian angel into my hand.

Downstairs in ICU they administered more oxygen, gave morphine and a bolus of heparin, paged our cardiologist out of bed, and did an echo. The echo showed a small clot had formed in her leg (explaining the purple) and near the shunt, partially restricting it and causing restricted flow. Dehydration had contributed to the decreased blood volume and poor flow. Our nurse stayed with us for the first hour, explaining everything that was going on. She gave us both a long hug and promised to come back down after her shift was over to check on us. We called our parents and decided to go home and get some sleep. It was clear that we would be staying in the hospital longer than 24 hours.

They decided to keep us in the ICU for the week leading up to the surgery. At that point Brynn's reserves were low, and they told us that continued O2, IV fluids, and heparin were necessary to keep her stable before surgery. Brynn was a champ and the care that we got while in the ICU was awesome. Our surgeon was out of town but after another desaturation episode later in the week, he agreed to cut the one and only vacation he takes each year early to come in on a Sunday and perform the Glenn.

The day of the surgery ended up being much less traumatic than I anticipated. We had the dreaded surgical waiting room all to ourselves. Our families came with food, comfort, and moral support. We anticipated it to take up to six hours, but I hadn't even finished the Christmas movie I was watching on my laptop before the surgeon came down to tell us he had finished the procedure and that everything looked great.

We couldn't believe the speed in which everything seemed to happen. Forty-eight hours after surgery they told us they would be moving Brynn back to 3 West the following day, and anticipated a discharge date of later that week. The only complication that Brynn seemed to have experienced was a chylothorax, or accidental severing of a lymph node. As a result she was leaking milky fluid from her chest tubes and would need to be switched to a formula low in long chain triglycerides, aka, fish oil based. Most babies have an extremely difficult time getting the formula down, and some even need feeding tubes because they will stop eating. Apparently not her mother's daughter, Brynn proved not to be a picky eater and chugged it right down. It smells horrible (interestingly, we all agree it smells just like day old McDonalds french fries). No, really, it does. And it leaves Brynn all sticky from the amount of corn syrup solids they use to try and disguise the fish oil taste.

On December 12th, one week from the surgery, two weeks after originally going in for the cath procedure, we were headed home, believing at the time that aside from check-ups, we would not step back into the hospital for several years. We were back 48 hours later.

They had told us that Brynn would be extremely fussy and probably very uncomfortable due to the "Glenn headache" the result of re-plumbing her entire heart and changing the pressures in her head. They warned us that even strong narcotics don't always help relieve this pain, and that only time can help with the process. They didn't tell us she would be profusely sweating, inconsolable, extremely agitated, throwing up, and having loose stools. Apparently, that is because these are not signs of the Glenn headache, but rather morphine withdrawal.

A prescription for Motrin and Ativan were supposed to make this better. They didn't. Three days later, we went back. A chest x-ray and echo came back clear. They increased the Motrin and aspirin dose, switched her back to her regular formula since they believed the chyle had resolved itself and told us to come back in a few days if it didn't get better. It didn't. Brynn screamed non-stop from the time she was released from the hospital. We couldn't change her diaper, feed her, bathe her, dress her, or hold her without her screaming. She was so agitated and obviously in A LOT of pain. She slept very little, and had no alert awake time where she wasn't screaming. The doctors were puzzled. We were at our wits end. Haggard, hopeless, and extremely worried. There was no end in sight to Brynn's unhappiness.

By Sunday morning her breathing was extremely labored and she was wheezing. We decided to bring her into the ER for a chest x-ray. The experience was of course horrible. They couldn't start an IV or draw blood because she was so dehydrated. Her saturations were down in the 60's even with O2. She continued to be in horrible pain. The x-ray reveled a collection of fluid around her lungs. They were not sure if it was from the chyle or if she had developed a pneumonia. They ran tests, got cultures, administered antibiotics, and told us that Brynn would have to stay overnight so they could place a chest tube and drain the fluid.

They drained 150 cc's from her chest yesterday. The tests revealed that the accumulation was in fact chyle, but she had been accumulating fluid since they took the chest tubes out almost two weeks ago. Our baby had barely been able to breath and was in great pain caused by all that pressure and fluid around her lungs. So, she is back in the hospital. Back in 3 west, back where we started . Only now, the difference in how she is feeling is unbelievable. She is happy, smiling, cooing, and flirting shamelessly with all the male nurses. We finally have our baby back.

We might end up being here over Christmas. We might be feeding our kid fish oil french fry formula indefinitely. Right now, the chest tube is still putting out a good amount of fluid. We won't be able to go home until it stops and the x-rays show no new accumulation. However, right now we just don't care. We are so happy to have our comfortable, happy baby back.

If you are still here after that long winded explanation of events, thank you. Thank you to everyone who has reached out, given us support, held our hands, and lifted our spirits. Tony and I spent our first wedding anniversary with our baby in the hospital. We know we could not have gotten through this year without the loving support of our families and friends.

This holiday season might not go exactly as you planned. You might not get the gift you wanted, or spend the day the way you thought you would. But please think of Brynn, and remember Mark, and know how truly lucky we all are to be alive and have one another.

A very important date...

Today was the original date of Brynn's second surgery. Today we were originally supposed to be sitting in the hospital with our families holding our breath and saying our prayers and putting our faith in the hands of the doctors and nurses. Today was originally the start of moving back in with my parents during Brynn's hospitial stay. The start of long days at the bedside and even longer nights away from our baby. Bad hospital food, cold hospital air, chapped hospital skin (thank you, hand sanitizer) and lots and lots of hospital tears.

Instead, I got to wake up to my baby cooing and gurgling happily to her friends (giraffe and penguin, respectively). I got to fix her bottle and change her diaper and dress her in the cute new outfit with they bunny on the front. I got to kiss her toes and put little slippers on her feet. I got to lay her in her swing and watch as she gazed up at the mobile.

I got to put her in the stroller and take a walk through our favorite neighborhood and feel the sun's warmth on my face and shoulders. We admired the sun shining through the trees and I pushed the stroller through crunchy piles of Autumn leaves. We watched a snooty French bulldog bark up a tree at a sassy little squirrel who I swear stuck his tongue out at the dog below.

Tonight, I will get try out a new recipe and give Brynn a bath. I will get to put her in the snugly pajamas with little feeties and rock her to sleep in front of the fire. Today we get one more beautiful, gratitude filled day of normalcy.

Of course, the question is how much more time do we have before we have to go back? Will Brynn learn how to roll over (she gets closer every day!). Will we finally get to meet and pet the big shaggy dog we see every day on our walks (think Nanna from Peter Pan; he used to bark at us but now he just nods hello from his spot in the driveway). Will we get to have Brynn with us for Thanksgiving? Get to pass her around the table to be held and cuddled while we dig in to our mashed potatoes? Her cardiac cath date is scheduled for the 18th. We most likely will not know the answers to those questions or receive a surgery date until then.

The downside to this extra time is the extra time it gives me to worry about the upcoming surgery. Falling asleep at night is getting harder and harder. My mind drifts to the day of the upcoming surgery, and all the the agonizing feelings of worry, waiting, and wondering how things are going to go. I don't know if its better or worse to know what to expect when we go back this time, all I know is it's a lot harder. Last time I was spared the long and painful wait in a cold room on a stiff plastic chair (the blessing of having Brynn going immediately into surgery after she was born). I was recovering from my own surgery and regained feeling in the lower half of my body around the time her surgeon came in to tell us things had gone well. This time, I have none of the peace or internal calm I felt before her birth and delivery. I'm finding it next to impossible to find much comfort in my faith or have the peace of mind knowing that she will be in excellent hands.

I know this might not make a whole lot of sense since statistically her chances of surviving surgery and doing well are high (around 98%, vs the first time at a lower 80%). My fear and worry are like a pit in my stomach. I'm trying really hard to rely on prayer and positive thinking to get me through this difficult period of waiting. I'm trying to put into practice what I know in my heart: that through suffering and hardship we grow closer to God and deepen our faith. I'm trying hard to enjoy every moment of every day with my baby.

We have been so blessed to have been granted more time with our sweet baby girl. Maybe it's selfish to want to be assured that we will have all the time in the world. I want to know that one day Brynn will be the cute little preschooler who waved hello to me today. I want to know that I will get to see her first steps and dress her chubby little legs in the overalls hanging in her closet. I want to know what her first words are going to be and find out what kind of baby food she will like to eat. Will she love the smashed banana? Spit out the pureed peas?

I guess I want what every parent wants and sometimes takes for granted: that my child will get to grow up healthy and happy. This journey has been filled with so many ups and downs. We remain so completely blessed to have such support from our friends and families. Tony and I are sometimes amazed at how far we have come as parents and how close and strong our relationship is despite the stress. As I said last time, some days are more challenging than others but overall I could not have a more supporting and loving partner in life than my husband.

Please continue to pray for us and for Brynn as we await her surgery. Enjoy the pics!

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!

There is no place like home!

As you can see from the pictures we are home! Brynn was discharged from the hospital last Monday, exactly one month from the day she was born and one day after my original due date. As you might remember, the two hurdles we had to jump over were three days of consecutive weight gain and placement of the feeding tube. Brynn had the three consecutive days of weight gain and after much fuss and worry Tony and I sucked it up and learned how to place the feeding tube.

We were very blessed to have the nurse we both trusted and adored show us how to place the tube. This nurse was kind and patient but very firm with us and knowledgeable about what had to be done. I held Brynn's head while the nurse helped Tony insert the tube and tape it down. She talked us through the whole process and gave us lots of encouragement and moral support. Thankfully, she also replaced the tube which all along I had thought was too big with a much smaller tube. Overall the experience was much less traumatic than I had anticipated, and I think Brynn ended up being more comfortable with the smaller tube. I went home for the night to get some sleep and was on my way back to the hospital in the late morning when Tony called to say the doctors had rounded and agreed that we could be discharged that afternoon.

I could hardly believe it! We had hoped and prayed that they would let us go home but nothing is set in stone until they doctors say so. I spent a few minutes running around trying to figure out what our next steps were. We had accumulated quite the collection of clothes, paperwork, baby gifts, toiletries, and personal items (hello, breast pump!) at my parents place. In addition, we had piles of baby clothes, blankets, and medical supplies at the hospital. Luckily, my mom hadn't left for work yet and she agreed to take the day off to get us packed up and bring all of our stuff over the the apartment. I left for the hospital where Tony and I spent the next few hours reviewing the discharge paperwork, setting up follow-up appointments, and getting Brynn prepared to leave the hospital walls for the first time.

It was an unbelievable and surreal experience when we finally had all the paperwork signed, bags packed, and appointments made and were able to pick up our daughter and walk outside. I kept thinking someone was going to stop us or tell us they had made a mistake and that we weren't really allowed to leave. Thankfully, we had an uneventful trip home (Brynn was apparently unimpressed with the great outdoors since she slept the whole way home) and were greeted by my mother who had cleaned up our apartment and stocked the kitchen with groceries.

Since we've been home it has been a period of adjustment, joy, amazement, and of course more exhaustion. I might have said this before but I'm not sure I ever fully prepared myself for actually having a A BABY! I prayed and hoped and wished with everything I had that we would bring her home safely but I didn't dare spend a lot of time thinking about what life would be like with an infant. I guess I was taking things day by day. This worked well for me during the months of uncertainty and fear but perhaps did not prepare me physically, mentally, and emotionally to actually bring home an infant with unique and demanding needs. The last two weeks have been a crash course in baby.

Brynn's needs and the requirements to care for her did not magically disappear just because we left the hospital walls. Tackling her feeding tube and administering medications has been a process. Monitoring her calorie intake and volume can be tedious. Weighing her and tracking her 02 stats and heart rate is burdensome. And doing all of this while being more sleep deprived then I have ever been in my life is a challenge all on its own. Thankfully, we have had wonderful and amazing support from friends and family. Frozen meals have been especially helpful. My mother coming over every day for the last week to do laundry and dishes and sit with Brynn while I catch up on sleep has been my saving grace. I'm not sure how I am going to cope when she goes back to work next week.

There have been times during the week that I have felt so overwhelmed and exhausted I'm not sure I'm physically capable of mixing another bottle or drawing up more medication. In these moments I feel disappointed in myself for feeling even a little bit resentful. I go back to reminding myself how lucky we are that Brynn is here and that we have her at home. I dig a little a deeper inside myself than I have ever had to before and make sure I hum to her while I fix her bottle, and sing to her while I put meds in her tube, and rock her while trying to get her to go back to sleep. Truly, we are blessed beyond even what we could have imagined. I think of people with multiple babies, or the woman we shared a room with at the hospital who had six other children waiting at home for her. I was chosen by God to have this baby, and that means He gave me the strength to take care of her. Even at three in the morning.

Brynn's progress has been amazing. She has continued to gain weight daily and her stats have been perfect since we've been home. We have been to the pediatrician and back to the cardiologist and both of them were very impressed with how well she is doing and how good she looks. So much so that they agreed on Wednesday that we could take out her feeding tube and do all of the feeds by mouth! Brynn has been much more comfortable without that tube to choke and make her gag throughout the night. She is eating better and sleeping for longer periods. Everyday she becomes more alert, grows stronger, and gets cuter.

Our return date for her next surgery is November 7th. Until then, our goals are continued weight gain, not getting sick, and lots of snuggling. Thank you to everyone for your prayers, support, and understanding. We are so grateful for this time together as a family and hopeful that the next six weeks will continued to be blessed with good health and the wonder that is this little life.

48 hours and a tube is the only thing that stands in our way...

We are in full-blown hospital mode. Since our transfer up to 3 West things have hardly slowed down. After five days we are finally in a routine that goes a little something like this:

6AM: Brynn’s Food (fortify breast milk with formula, prime pump, attach pump). Try oral feeding to see how much she can take by mouth, put rest through tube (make sure to stop feeding before any air gets in her belly, flush tube with sterile water).

7AM: Nurses change shift. We burp and comfort fussy Brynn.

7:30AM: Nurse checks vitals; we change diapers and get Brynn dressed.

8AM: We administer morning meds through tube (aspirin, laxis, zantac). Brynn is examined by doctor before rounds.

8:30AM: Pump

9AM: See Brynn’s Food

9:30: Rounds.

10AM: Burp and comfort fussy Brynn while trying to pump and change diaper.

10:30AM: Hearting test (or another test)

11AM: Physical therapy

11:30AM: Occupational Therapy

12PM: See Brynn’s Food

12:30PM: Pump

1PM: Burp and comfort fussy Brynn.

2PM: Meet with a specialist (take your pick from Child Life Specialist, Lactation, Pediatric Nutritionist, Social Work, medical supply representative, etc.)

3Pm: See Brynn’s Food

3:30pm Pump

4Pm: Burp and comfort fussy Brynn.

5:00pm: Continue to burp and comfort fussy Brynn who did not tolerate her 3Pm feed. Change diaper, change clothes she just spit up on, possibly give her bath, change her diaper again, and put on more clean clothes.

6:00pm: See Brynn’s Food.

I will spare you the other 12 hours but can assure you they look startlingly similar to first twelve (minus the specialists). If you didn’t see anything about eating or sleeping it’s because we don’t really get much of a chance to do either.

Tony and I have been taking turns staying the night and relieving each other for a few hours during the day when we can (twice I’ve been here for 36 hours in a row and it wasn’t pretty). While we’re here we don’t get to go outside, see sunshine, taste fresh air (or fresh food) or enjoy many of the other comforts of life outside the hospital. We sometimes get cranky or frustrated with one another but try hard not to take out our exhaustion on the other person. As guilty as we feel leaving the other one behind at the hospital we remind each other how important it is to have a break.

On Thursday night we finally switched out of “The Quad”, one big room with 4 (yes, FOUR) babies and two nurses to a double room. After two hellish nights of non-stop babies crying and alarms sounding I put up quite the fight when they told us we might have to spend another night without sleep and sanity. Parents don’t usually spend the night in the quad, which I can understand given the indescribable amount of noise and commotion going on at all hours of the day. However, we were encouraged not to leave due to Brynn’s small size. I was not about to leave Brynn alone for the night without us but there was no feasible way I could tolerate another night in a 4x6 curtained-off personal hell. Luckily, the charge nurse was able to move some things around and we have been in a double since Thursday evening.

These days have been crazy, stressful, exhausting, and frustrating. They have also been invaluable in giving us the knowledge of how to care for Brynn when we get her home. Which is really the whole point of being up here. We have to learn to do everything the nurses do on our own. Both of us are feeling more comfortable every day with the typical baby stuff and are getting more at ease with the medical aspects. One giant hurdle remains: changing out the feeding tube. We are not allowed to leave the hospital until we learn how to put in her feeding tube. I am really struggling with this. When Brynn got her tube changed out in the pod she screamed her head off and was fussy and gaggy for the rest of the day. I can’t stand the thought of having to put her through that kind of pain again unnecessarily. I understand that she might pull out the tube and that we would have to go back to the ER to have it replaced (possibly at 3AM) but honestly I would rather take my chances. I’ve tried negotiating, pleading, and bargaining with the medical team but they are pretty dead set on making us pull out and put back in the tube.

I already have a love hate relationship with this stupid tube. I understand it is keeping my daughter alive. So far she is only able to take in 20-30mls by mouth 2-3x/day (a far cry from the 55 cc’s she needs 8x/day to gain weight). But I hate that she has to have it. I hate that we have to pump her full of calories 8x’s a day to the point where she can become incredibly uncomfortable and vomit from the amount of volume in her tiny tummy. I hate that I can’t just hold her to my breast and enjoy the comforts and bonding that feeding usually allows. I know that Brynn has to gain weight to survive her recovery and her next surgery. I know that the last thing we want is to end up in the hospital with a “failure to thrive” diagnosis due to an inability for her to gain weight. But I still hate the tube.

Please keep us in your prayers as we get closer to the huge and important task of learning to place the tube. We are hoping that it goes smoothly and causes Brynn minimal discomfort.

If Brynn has one more day of weight gain (we need 3 consecutive days to get out of here) we will be discharged on Monday. Ironically, this will be one day after my original due date. And, if she does gain weight again today and we are allowed to go home on Monday I guess I am going to have to thank the tube. J

Moving on up...

To 3 West! Thats right, folks we are finally here. At this moment it is after 7:00pm and daddy is holding Miss. Brynnie (something we haven't been able to do for weeks now since we had to leave at shift change when we were on the CVICU).

All I can say is THANK GOD we are finally out of there. These last 10 days or so have been some of the most difficult of my life. Brynn was continuing to make steady progress for several days. She got all of her tubes, lines, and IV's out (except for her feeding tube), and her stats were looking great on room air with no support. The only thing she wasn't doing was taking anything by mouth. The doctors told us that she had to work on feeding and gain some weight before she would be allowed to go home but that she should be able to work on those things upstairs in the step-down unit. Then...a new team started and decided that they wanted to be extra conservative with her due to her small size and the type of repair she is recovering from. SO...they decided to keep us in the CVICU for another week. And not just the in CVICU but specifically in "the pod" a seven bed hellhole of beeping, crying, alarming, and nurses 24 hours a day.

This overstimulation really begins to wear you down after the sixth hour of sitting there. Especially when the doctors are telling you that your kid doesn't really need to be there but they are going to keep her in this hellish place just to play it safe. Don't get me wrong, I would never want to jeopardize Brynn's health or recovery in any way but I really felt like my own mental health was deteriorating by the day. Every day I woke up, pumped, and went to the hospital to sit and hold Brynn for approximately 6 hours (except when I would have to put her down to run to the cafeteria and shove food down my throat or sit in a freezing dark room and pump). When I got back Brynn would often be fussing or crying by herself. The nurses still took excellent care of her but they now had other patients as well and you can pretty much guarantee that your kids pacifier falling out of her mouth is not going to take precedence over stabilizing another patient. I would go home around 3:30pm or so and Tony and I would come back together by 6:00pm to kiss her goodnight and then head home to eat dinner and collapse into bed. And then I would do it all over again the next day.

It began to feel sort of like Groundhog Day: a never ending cycle of stress, worry, and exhaustion, with no end in sight. Tony of course had his own difficult days that would begin at 5:30 in the morning and usually end with a tearful and exhausted wife who has been pretty much inconsolable during the most difficult moments. We haven't had to deal with any more surprises from or friends in genetics, and Brynn's progress continues to be excellent, but 90% of our conversations still contain the phrases "try not to worry about it" and/or "I'm just tired".

Our days have also been filled with small victories and pleasures. I changed Brynn's diaper for the first time last week and Tony changed his first diaper EVER on Sunday. We have been able to give her a bath, swaddle her, hand her off to grandparents so we can get a bite to eat, and of course my favorite: dress her up! We survived five days in a row with our least favorite nurse without losing our minds or our tempers. We even began to tackle her taking food by mouth.

Occupational therapy assessed Brynn last week and developed a feeding plan for her to practice taking food orally. They showed me how to position her and how to look out for danger signs that she could be choking (it is very important that we protect her airway and prevent any aspiration). We have run into several problems that relate to her being a preemie and having a heart condition. Brynn had been either totally conked out or super agitated. She rarely had any awake alert time where she would interested in eating. Although she loves her pacifier her latch wasn't strong and she had a very guarded suck. Up until today she was only taking a few milliliters by mouth.

I have continued to pump as often as I can but have found it difficult to keep up with the demanding 8-10 times a day. The most I have gotten in 24 hours is 7 pumps and some days I only get six. As a result I have been able to supply Brynn with most of the milk she needs but the nurses have had to supplement with formula from time to time. Part of the problem has been keeping up my calorie intake to sustain enough milk. My appetite has not been that great and to make matters worse I tend to get a little nauseous or lose my appetite every time I pump. In addition, I rarely have time to sit down and eat anything when I am hungry since I haven't wanted to leave Brynn alone. I spoke with the lactation consultant who has been trying to help and is encouraging me to try and pump more frequently. My hope is that now that I'm allowed to eat in the same room with Brynn and will have food trays brought up to me I'll be less stressed and able to eat better. I've also had some of the other typical problems including blocked milk ducts (ouch!) and sore nipples (super ouch!).

On Sunday we were moved out of the pod and back into a private room in preparation of coming upstairs. It was a huge relief to be out of the chaos and noise. I didn't realize how luck y we were until yesterday afternoon. I went down the hall to the "quiet room" (ironically next to the pod) to pump when I heard a woman sobbing and crying out "my baby, my baby". I got back to our room when the mother next door came in to commiserate about the awful siren that was going off. I asked her what was going on and she looked at me wide eyed "You don't know what that sound means? A baby in the pod is coding. Two babies have died since I've been here.” A giant dose of reality I didn’t need that was enough to send me over the edge. I was in tears the rest of the day. Luckily, I woke up this morning to the phone call that we were moving to 3 West first thing this morning.

My thoughts and prayers continue to be with the families that remain in the CVICU. Our journey to get Brynn well continues upstairs. Thank you for everyone's continued support. We would not be getting through this without your love, support, and prayers.