Day 19

Erin is doing fairly well without the Milrinone. Her lactate levels are higher than we would like, but they seem to have stabilized around 2.5. The doctors think that she looks wonderful, and are cautiously optimistic. One of the ways that they determine a baby's health is just by looking at the baby. Erin is a healthy pink, and energetic, which are all good signs.

It is hard to listen to the news that they are "cautiously optimistic." We don't want to get too excited and then have our hopes dashed. She is clearly not out of the woods yet regarding immediate surgery, but it is looking better. I am reminded of the first week when she was here, when we said goodbye to a favorite nurse who wouldn't be back until the following Monday. We were all convinced that we wouldn't be here when she returned. Oops.

Today Erin has been awake and alert for a spell, laughing and generally enjoying herself. She did not have a bowel movement this morning during my shift...hopefully that will come this afternoon during Mommy's shift! :-)

In addition to being off the Milrinone, the oxygen weaning has begun. It is a two part process, with the first step to lower the amount of flow, and then the amount of oxygen in the flow. Currently she is at 100% oxygen and high flow (4). She has been lowered today to a flow rate of 3. So far, there seems to be no adverse effect, although it is only a subtle change.

Day 18

Today, doctors turned off Erin's Milrinone. This is the drug that has been helping her heart to pump. In order for her to come home, she has to be successfully weaned off the Milrinone and then weaned off the supplemental oxygen.

One of the important measures is to look at the lactate level in her blood gases. A reading of 1.0 or less is desirable. Under 2.0 is acceptable. During the night, she had a reading of over 3.0. When her gases were read again in the am, it was 1.5. At noon, a subsequent reading showed 3.2, and the 2 pm reading showed 2.5. We don't know if she is just bouncing around, or experiencing a problem without the Milrinone. Needless to say, we are concerned over the development, but trying not to over think it.

On the positive side, after we gave her the noon feeding, she was smiling and laughing in Sheila's arms. It is great to see how her personality is growing each day.

Day 17

Day 17, really more of the same. Little emotional ups and downs throughout the day, depending upon a doctor's opinion or a blood gas reading. Erin had a good day yesterday, and we managed to get through last night without any more sneak puking attacks.

Overnight, we learned that her lactate level in her blood gas had risen to 3.1, which is not good. Typically, the doctors like the lactate level to be 1 or less. The night before, it was 1.9 (acceptable but needing to be watched) and then 1.1. Lactate levels are another indicator as to whether her cells are getting enough oxygen from her blood. Neonatologist Robin Steinhorn thought that the elevated lactate level might have come as the result of doing the blood draw by sticking Erin in the heel, a rather painful procedure. The blood gases are more accurate by taking them from per picc line, and she ordered another one, as well as ordering a cessation on future heel sticks. The resulting lactate level was down to 1.6, which everyone felt much better about. This is just an example of how you live and die with little readings and results. By the end of the day, you are exhausted.

Erin had yet another echo cardiogram this morning to see how her heart is doing. The preliminary results seemed good, although we need a doctor to read and interpret them. I watched the monitor showing her beating heart, and it struck me that I was watching the organ that keeps my daughter alive. It is definitely a different take when you view it that way. She did great throughout the echo, courtesy of her beloved Sweeties, capably applied by Sheila.

The agenda for the balance of the day is lunch, more holding and feeding coupled with several diaper changes, a quick dinner, more holding and feeding again with diaper changes, and then to bed. Oh yeah...that has been the schedule every day for the past 2 1/2 weeks.

Day 16

Erin continues to do well. She had a great day yesterday, and was awake for a good portion of the day. It is really fun to hold her and interact with her, and to follow her progress daily as she becomes more aware and alert.

Last night, we had another good bonding session. Every night I vow to sneak out by 9 and go home, and yet I rarely get out of her before 10. Last night was no different, except just to throw some excitement into things, Erin decided to puke all over me at 10 just as I was preparing to put her down. To add insult to injury, she didn't even bother to wake up while she was doing it! I am pretty sure it was a passive aggressive attack on me. :-) I have always been very squeamish about baby fluids and byproducts. I have also been told that when it is your child, you don't mind. I have learned that this theory is in fact true.

Today was a little more sobering. The doctors were all in heavy discussion over how fast to wean her off the Milrinone. The last time, it was pretty fast, and she crashed. As cardiologist Jeff says, we are past science, and into art here in trying to figure out the right course of treatment. Her condition is serious and life threatening if not treated properly, and we need to keep that in mind. Erin doesn't have a lot of reserve or strength in her heart to adjust to sudden changes, thus we need to wean her far more slowly that we were originally told. The Milrinone will be reduced by a factor of 1 each day until Thursday. At that point, if all is well, we will then work on the oxygen. However, we have been told that if all goes well, we have another two weeks here.

Jeff also added the sobering note that we are not nearly out of the woods yet on her needing immediate surgery, and if that is necessary, we need to prepare for a much longer stay. I apparently misunderstood Jeff last week when he said that the chances of her avoiding surgery were between 80-20 and 70-30. He was indicating that she had a 20-30% chance of avoiding the surgery, not the other way around. Today he said that it is 60-40 in hopes of avoiding anything right now. That is an improvement from last week, but because of my misunderstanding a setback emotionally.

We also received the great news today that our new home in Scottsdale was broken into over the weekend. Six plasma TV's that had just been installed were ripped off the walls and stolen. Doesn't seem like that big of a deal, frankly.

Day 15

Yesterday was a really good day. Erin had good sats and blood gases all day long, to the point where Jamie and Barbara Deal, Chief of Cardiology at Children's relented to remove the head monitor that she has been wearing on her forehead since her incarceration. She was very happy with that decision, and Sheila especially so. Sheila was concerned that each time that the monitor was removed (once per day), little Erin was getting an eyebrow wax.

Erin was also given the green light to eat as much as she wants with no restrictions. She is proving to be a really good eater, eating as much as 85 ml in a single feeding. She is also more alert and beginning to smile and interact.

Tom Chester came by to take us to lunch yesterday, which was a nice break. Aunt Colleen also stopped by for a few minutes.

After dinner last night, Erin and I spent two and one-half hours of quality time hanging out. It was marred only by the nurses inability to spend any time on Erin because of the needs of her other charge, a preemie at the far end of the room. I was questioning the staffing decision to have her handle both Erin at one end, and a baby that requires almost constant attention at the other. When I came back from dinner after the shift change, I found that Erin was really agitated and upset. I was unable to calm her down, and couldn't figure out what was wrong. I finally decided to look at her diaper, and found that the had a royal mess. Apparently, they had been too busy during shift change to change it, which is something that they regularly take care of. Once her diaper was changed, she was more calm, but still agitated as she wanted to eat. It took the nurse 30 minutes from the time I asked to get a bottle ready for Erin, and that was only because of the intervention of another nurse. It's not that they weren't trying, just that they had their hands full with the other baby. But it did leave me questioning the staffing decision. The good news is that Erin was hungry, and best of all, her sats hit highs of 93 several times. She was happy and alert, and we had a great time. I had been planning on sneaking out early at 9, but stayed until almost 10:30 because Erin was wide awake and we were having a great time.

Her Milrinone has been cut in half today, with the goal of reducing it to zero on Monday. The last time we tried this it was unsuccessful, so we have our fingers crossed. If that works, then we try to wean off oxygen, a process that will take most of the week.

Day 14

Ok, this is the second "Day 14" because I skipped over Day 11. I posted on it, but called it Day 12. Hopefully, Erin gets both her looks and brains from her Mom.

Erin is doing really well today. When I arrived, her oxygen sats were 90, the highest they have been since going off the PGE. The entire day she has hovered in the mid to upper 80's, except when sleeping. Babies breathe more shallowly during deep sleep, causing the sat level to dip. Her blood gases have been excellent as well.

During the night, her arterial line was removed, so we have one less line to worry about. We are really happy about this one, as it was fragile and required a great deal of care whenever she was moved. In addition, her head monitor is coming off when she awakes from her afternoon nap.

She is eating whatever she wants now, and took 85 ml this am. We spent three hours hanging this morning, and she was awake most of the time. I was holding her while Sheila was off pumping, and Erin had a very large, very noisy bowel movement. It was so large that it shook her entire body. She was so startled that her eyes snapped wide open. I laughed so hard I thought I was going to drop her. Then I remembered that I now had to change this diaper. No sooner did I have it changed and had us both re-seated when she rewarded me with a second effort. Yesterday, we were concerned that she wasn't going enough. Maybe we shouldn't have been so concerned!

Pic update