Update, September 29th

I intended to have entered our last blog entry. However, many have asked for an update on Emma that there is no better place to give it than here. Emma is gaining a very healthy ounce per day. Her belly button is now dime sized and still scabbed over. She has an appointment to have the last of her stitches removed on October 15th. Her hair is slowly growing back from the incompetent nurse.



She is a normal baby in as much as you imagine. She sleeps, eats, and poops with the best of them. She even had her first bath.



I hope to load some more photos in the upcoming days.

Home.

We are home. Emma's recovery has been nothing short of remarkable. She has done in 5 days what unfortunately takes most gastroschisis babies months or more.

On Tuesday, Ashley and I took a stand by refusing to consent to Emma's 3rd and 4th potential surgeries. We compromised by allowing a surgery for a temporary catheter. The advantage being only one surgery to put the catheter in instead of one to place it and another to remove it. The surgeon warned us of all the complications that may arise any time a baby is intubated. We were terrified. Ten minutes before the surgeons were to arrive to take Emma away she had a bowel movement. I yelled at the nurse's like Paul Revere announcing that the British were coming. They passed along the news to the OR and the surgery was delayed for another day. Hours later, Emma pooped again and again. The next morning she started on 15ml of pedalyte which they expected she would vomit. She didn't and surgery was delayed for another day. On Wednesday they ordered us to increase her volume of pedalyte to 30-45ml which they expected she would vomit. She didn't. Thursday she started 30ml of breast milk without any complications. Friday was 45ml of breast milk - no complications. A healthy color returned to her face and belly. Saturday Dr. Rice and his team came to visit. The look on his face was of absolute astonishment. How was it possible that one of the worst cases he said that he had ever seen was now towards the end of the fastest recovery he had ever seen? He gave the word, "let's send you home".

I do not know and can not pretend to understand how fortune is divided among us all. Still, without support from each other and this community we would never have been in a position to be so fortunate. Many people prayed for Emma and many others offered words of encouragement. We are grateful to all of you who have been there every step of the way.

Catching Up, Thursday, September 4th

Now that Ashley and I provide most of the care there is little time to write. I am between shifts at the hospital and Ava is eating lunch, so I have a few rare moments. Emma was due for surgery on Tuesday, but she managed a miraculous poop only 15 minutes before she was to be taken away. That stopped the surgery. Now they've removed the tube from her stomach so her bowel can try and process anything in her stomach. We've started pedalyte feedings every 3 hours with the hope that she may have some breast milk tonight. She's really hanging tough! She's had regular poops, a whopping 3 of them last night with me, and is eating well. Dr. Rice says he is very pleased and that she is well ahead of the curve right now.

I realize this is a poor summary of the last 3 days, but I hope to do a larger entry tonight or tomorrow morning. Ava is emptying all of the socks and underwear onto the floor. Gotta go!

Breaking Point

My wife and I are spent. We carry all of the stress, depression, frustration and anger that we can stand, but there is no quit. This is our family. Nothing means more. Emma has taken a turn for the worse on pure negligence by her nurse. Early this morning the nurse broke both her PICC and IV. They incorrectly decided to place the IV on the left side of her head and she pulled it out. Then the placed it on the right side of her head with an enormous and unnecessary amount of tape. They shaved both sides of her head, yet managed to put the tape on mostly her hair, which will make it difficult and painful to remove. The nurse once gain failed to place the new PICC in, twice, and now the doctor proposes that Emma undergo another surgery to install a Broviac. The surgery can compromise Emma's fragile immune system, leave her open to a blood infection, and permanently damage her lungs. We refused and will insist that they place the PICC correctly this time.

Emma is in enormous discomfort, yet they have moved her again to a room for babies that are MORE stable. Unbelievable. Now, a nurse only comes by once every 3 hours despite her delicate condition. The nurses clearly have no experience with gastroschisis and neglect many of the assessments that need to be made. This leaves my wife and I to shoulder the burden once again by split shifts at the hospital with Emma while the other parent stays at home with Ava. I have used all of my yearly vacation yet I have spent virtually no time with my wife. We live in a parallel universe that revolves around 20 hours a day of single parent care. I am exhausted. She is exhausted. We just want Emma home. Now, we could be set back by months if we're lucky enough that Emma remains healthy despite the nurses. She is at the hospital now. I miss my beautiful wife.