Update from Louisville

So last I wrote about Max, he had just been cleared of having Hirschprung's disease in his Bowels. That was some of the best news we had received up until that point while being here. We have received much more good news since that post. The doctor's decided to begin feeding Maxwell more in order to check and see if his colon was working properly yet. It wasn't long before he had his first (non forced) bowel movement indicating that he, indeed, did have a working digestive tract. It is amazing the things that you will celebrate as parents...poop is one of them!

A few days into him eating again we began to see weight gain. First, it was 20 grams here and 50 grams there but today after inching his feedings up and praying, Max is back up to 4 lbs, 8 oz. He is only one oz away from his original birth weight. Another thing that has improved is that his jaundice levels have been down enough for him to not be under the "tanning bed" style light but just a tube that goes underneath his blanket in the bed. When I last wrote, Maxwell was also in a warming bed as he could not maintain his temperature and had never worn clothes. As of today, he has been wearing clothes for three days and can maintain his temperature in an open crib all by himself! My boy is growing and progressing by leaps and bounds.

Since Max's digestive tract was the issue, we knew that we would be taking (no pun intended) baby steps toward him eating. I decided to breastfeed Maxwell and that means I have been pumping and stockpiling breast milk since he was born and they have given him minute amounts in order to get him up to speed. Today was a huge step in Max's health as well as our relationship. Max breastfed for the first time!!! He latched right on and ate for 20 minutes which is fantastic! We are so proud of our little guy and all of the progress he has made.

We are really excited to see all that God has done and we appreciate all of the prayers, concerns, and help we have gotten while we have been here. We are now staying at an extended stay hotel that our friends, Stephanie and Josh Hardy provided for us. They are friends we met at Maternal Fetal Medicine who are also undergoing their own battle with a preemie in the NICU. If you could extend your prayers to their little guy, Bennett, that would be great as he is going through a heart murmur, has endured several blood transfusions and seems to have a bumpy road ahead. They are from the area and felt that helping us out with lodging was on their heart. Such a lovely thing for them to do.

Thanks to the kindness of our friends/loved ones we have been getting by in food and gasoline and are working towards having enough money to cover our bills for while Anthony had to take FMLA leave from work. He has missed or will miss over 3 weeks of work that is unpaid. That has been a challenge for us to trust God and just be together but we both feel it is for the best as I am still in the recovery period for surgery and Max is still in the hospital.

Maxwell was moved again from the Kosair Neonatal Intensive Care Unit (of the highest degree) down to a more intermediate level which means he is on the path to discharge. We have spoken with the doctor on Max's case and she told us that she was not comfortable stating when he would be discharged but said it would be at least another week. We are hoping that it is exactly that...the least it can be. We are very homesick, exhausted, and ready to bring our little guy home to meet all of the wonderful family members and friends who have been there for him and us through this journey.

Speaking of the journey, it has been a rough one. It is incredibly hard to say goodnight to your child every night and walk out the door and sleep somewhere else. It is incredibly hard to ask another adult if it is OKAY for you to hold or touch your baby. These things have been a challenge for Anthony and I and we fully believe without the grace of God and your prayers, we would be crazy these days. We are forever grateful to you all for your love and to God for his help and Max's quick progress and recovery. There have been so many parenting lessons and life lessons learned these last two weeks that we have no idea how to incorporate or write about what those are.

I think to make it very quick and concise we have learned

-- to love Max with a tenacity that only can happen day by day. To love your children with a daily love keeps you focused on the important things like praying for them, saying encouraging words, and giving them affection and attention that is unrestricted

-- Being kind to each other in marriage becomes far more important when there is a little one. Anthony and I have always made it a point to be kind and compassionate to each other but being each other's best friends this last two weeks has been paramount as he is the ONLY person who gets how I feel about Max.

-- Being able to do self-care was one of the most important skills I developed as a therapist. It has come in handy as my mind has been taxed, I have been in full anxiety mode and still have to feed myself properly, take care of my spirit, recover from surgery, and be married and breastfeed.

-- People really are pretty great and care about us! We have some of the best friends on the planet!

I hope you are all doing well and thank you for your continued support, love, and prayers

Anthony, Erica & Maxwell