3/21 Dad's Touch

For those reading the blog that know me well, you know that I'm extremely humble and would never brag on myself. You'd also know that I'm lying through my teeth right now.... so just take the next story with a grain of salt.

Kirsten and I showed up this morning and Madeleine was sleeping very peacefully-- it was pretty great to see. We met with the doctors-- it was good and details are below-- and then Kirsten went to go pump (there is a separate room in the NICU for breastpumping.) With Kirsten's exit, the feisty side of Madeleine came out as the nurse changed her diaper. Madeleine doesn't have fully developed lungs yet but she did her best to tell her dad and her nurse how upset she was to be disturbed. Upon finishing the diaper changing, the nurse said that I could hold her and I promptly took her out of the isolet, cords and all. The nurse had a near heart attack as this was my first time holding her at Children's-- she was unaware that I held her a bunch while Madeleine was still at Holy Cross. They typcially prefer to hand the baby to new parents as they are concerned about all of the cords getting ripped off. In any case, when I picked her up, Madeleine was in full fledged scream mode but before I could even sit down, she immediately snuggled up against my chest and began sleeping peacefully. The flustered nurse took one look at the two of us and said "I think you've got this dad thing down."

Alright, enough bragging on me, let me get back to bragging on my daughter and wife. I'll start with my wife. Kirsten is going to kill me for putting this out on the blog, but today, she wore her pre-pregnancy jeans to the NICU. She's feeling really good, looks even better, and continues to be my emotional rock. I've always been amazed by my wife (that's why I married her) but her ability to handle everything that has been thrown at her and to carry me when I'm struggling has taken my love and admiration much higher. Simple put, I'm lucky beyond any measure.

Now to the one that you came onto the blog to read about. Madeleiene continues to have good days. As mentioned previously, she is feisty and alternates between sleeping soundly and kicking and screaming-- all good signs. Here are some specific short-term medical goals: (Remember that all can change at the drop of the hat in the NICU.)
- Morphine drip: They hope to remove by Sunday 3/23. Madeleine is already on the lowest amount they can give her and is doing fine.
- Dopamine: They hope to be done early next week. She's at 6 right now-- once she gets to 5, they'll consider taking her off completely. Goal: next Friday, 3/28.
- Hydrocortisone: This is a steroids shot that they give her to help wean off dopamine. They hope to be done by 3/31.
- Antibiotics: We had the timeframe incorrect. Her last day for antibiotics-- assuming there are no signs of infection-- is Monday, March 24.
- Breathing Nasal Canula-- Madeleine is not getting oxygen, she's only get extra pressure to ensure that she breathes fully. She has been weaned to six (don't know the metric) and they expect to slowly come down. They don't really care when she's done but probably around 3/31.
- Feeding: If the doctors stick to the deadlines listed above, she should be free of all lines except her IV and regular monitors by 3/31. This coincides with the 2 week post-surgery date for feeding to begin. We've been cautioned that feeding will go much slower than it did at Holy Cross. They expect to start with one cc (that's about one tear drop) and will add perhaps a half cc each day. Previously at Holy Cross, they added three cc's every day.

We'll cross our fingers that she meets all of these goals. If not, it isn't that big of a deal-- these goals just help me project out where we're heading and what the next milestones are.

That's pretty much all we know right now and hopefully all that we need to know for the next two weeks. In terms of recovery from surgery, Dr. Baumgart is very happy-- he reiterated that her recovery is unbelievable. With that being said, he did try to temper our expectations. (Temper might not be fair, he just wanted to make sure we understand the challenges in front of us.) Assuming that Madeleine begins feeding on April 1, the doctors will then need to determine what surgery is next-- the intestinal reattachment or the AV channel in the heart. The doctors would prefer to re-attach her intestines and to hold off on the heart until she is at least 4-6 months old and, at this time, that is our game plan. The doctor did say that given Madeleine's quick recovery, all signs currently point to this being likely. With that being said, he cautioned that as Madeleine grows in the next few weeks, her heart may cause issues that hamper her growth and ability to breathe freely. In three weeks (at the ripe age of 6 weeks) the doctor hopes to have enough evidence where he can make plans to schedule the intestinal surgery. If that happens, it will mean that Madeleine is processing food and is putting on weight. If either of these issues fail to occur, then the doctors will re-assess and consider if it is necessary to fix her heart. Again, all signs indicate that her heart is doing well and despite missing the center valve, her heart seems strong and is fully balanced. Still, the doctor cautioned that each heart is unique and the true impact of missing the AV valve cannot be accurately predicted. At six weeks of age, he feels he will have enough data to determine what makes most sense. The ultimate concern is that they don't want to have to schedule both of these surgeries back to back. Both surgeries are major surgeries, especially for anyone Madeleine's size, and we want to make sure that the heart is functioning properly before moving forward with any other surgeries.

Okay, I've definitely written enough for one post. I've gotten tons of questions about the impact of missing the large intestines and I'll try to address that in a post in the near future. (Short answer: it sounds worse that it actually is.) For the time being, Madeleine is doing great and her parents are learning to rejoice in the small victories every day. Today, I held my daughter. Today is a great day.

Have a great weekend and a joyous Easter.

Brent and Kirsten