What a Month!

Tomorrow Keller will be one month old! Looking back it seems like a very long month.  During that time I had a major surgery, Keller had a major surgery, he stayed 8 days in NICU, we were discharged, stayed in our home for 15 days, moved to my parents (major thanks to those that moved us!), and closed on our house.  Meanwhile in that time Keller has had at least 8 appointments, they all kind of run together.

This week Keller had three appointments.  Monday was cardiology.  The Heart Institute doctors come to New Bern to the Merci Clinic twice a month.  We were happy not to drive to Greenville this time.  Keller was weighed, had an EKG and then met Dr. Sang.  He decided to increase his lasix to twice a day.  Keller was using accessory muscles and having retractions which is a big clue that he is working too hard to breathe.  We briefly discussed his weight and talked about future medications that might be used to keep Keller well until surgery.  We talked about increasing the caloric value of his milk to 24 calories to help Keller actually put on some weight but made no decisions yet. The hope is that the Lasix will continue to get fluid off his lungs, decreasing his effort and making eating easier and that removing the water will make him more thirsty, therefore increasing the amount of intake.  Dr. Sang indicated that surgery might be more in the 3-4 months of age range.

Thursday was Keller's follow up appointment with the surgeon that did his Ladd's procedure.  During this appointment I had my first germ related panic attack.  As I walked into the clinic I saw a little girl grab a blanket from her mother and hand to her sister just in time for the younger sister to vomit into it.  I had Keller in my arms and not in the carrier because technically I should still not be lifting more than 8 pounds.  I quickly wrapped him in the blanket and tried to keep an eye on the little girl while checking in.  My mom and Norah had gone with me to the appointment, after witnessing the blanket vomiting mom tried to make a wall between the little girl and Keller and I.  All in all it was very overwhelming, in the last month I no longer view grocery carts, play grounds, gas stations, and floors as these things I now view them as germ infested breeding grounds for sickness.

The post op check up went very well, he has recovered from surgery without issue.  Dr. Walsh was, however, very concerned about his weight.  He weighed in at 7 pounds 12 ounces.  Only 9 ounces more than his birth weight and at 4 weeks old this is not where we want to be.  We talked about options.--- But before I tell you the options let me tell you that Keller has started vomiting in the last 2 weeks.  It started happening after we introduced Lasix but he hasn't vomited with every dose so we cannot make a direct correlation.  After increasing the Lasix we noticed an increase in the vomiting.  It is so frustrating to work for an hour to get 2 ounces of milk in him and then have him throw it up on you.  ---  Okay, back to the options, she told me we could start a reflux medication and also increase his milk to 24 calories an ounce.  If we do these things and he still does not gain weight we would need to think about a G-tube.   If he has not gained in 2-3 weeks I need to call and make and appointment to talk about the surgery and get a date on the books.  This news did not sit well with me.  Dr. Walsh and I both ended up in tears. She must know that, to me, it feels like failure.  Because it does.  It feels like all the work we have done, all the bottles we have forced, all the hours of sleep I have missed have been for naught.  It hasn't mattered.  He is still the same weight he has been for 2 weeks.  Ideally, babies should be gaining an ounce a day. She wanted Keller to see his pediatrician to get the prescription so we scheduled the third appointment for the week.

Today was Keller's appointment with the pediatrician.  It wasn't his typical doctor so was nervous.  Keller has such an interesting case I almost felt bad for this guy having to take on so much for a "quick visit" for a prescription and a recipe for 24 calorie milk.  On this scale Keller weighed 7 pounds 11 ounces though I'm sure it would have been at least 1 ounce more but Keller barfed on me in the parking lot. I liked this doctor a lot and if we can't see our usual it's nice to know that someone else at the office knows his case a bit.  We left with a prescription for Prevacid and a new goal for milk.  If Keller can get 18 ounces of 24 calorie milk we should definitely be on track.  Granted this is a goal, he told me not to freak out and start a journal to document each feeding. (There's an app for that now, duh!)

It makes me feel good to know that the doctor's have all acknowledged how difficult a road this is.  Keller has been surrounded by great doctors and nurses.   They have all made us feel like they are here to support us and really want to see us all succeed for Keller's sake.  Even though accepting help is not easy for me, I am learning that there is no option if I want to make it to his open heart surgery.  I need the help and God has provided it to me.  (My mom's help has been invaluable lately).  We are still feeling your prayers, we appreciate the meals, the texts of offers to help with errands, or to help with Norah.  (Norah, by the way is doing so well! Almost everything in her life has been turned upside down this month and she is such a trooper.  She loves "Baby Culler" and is showing him more and more attention.)

This month has been a crazy one but we are holding it together.  Thanks for holding up our arms so we can be victorious.  Now, here are some cute pictures.

Allison :)

Norah playing in our empty house.

How handsome is he?!

Sweet kisses.

First tub bath, he really liked it.

All done and safe in Daddy's arms.