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.