Home has never been sweeter...

Update 11/21: Home Sweet Home! 

Mae was discharged from the hospital late Thursday night/early Friday morning and arrived home around 1:00am. We have been blessed with quality home health care, appropriate training, and generous neighbors/friends/and family to make this transition as smooth as possible. So far, we are all doing great and could not be more happy to have Mae at home with us. The weekend went well and we had visiting nurses come out Friday morning and Friday night and then again yesterday and today. Mae has a follow up appointment at U of M tomorrow, Wednesday, where she will meet with a plethora of doctors and specialists related to her malabsorption issues. 

Currently, Mae is on a TPN regimen of 12 hours on (at night) and 12 hours off (during the day). Ryan and I take her on/off the TPN daily. She has not lost weight since we have been at home and she has remained stable according to our daily measurements. Her formula and other medical supplies are delivered weekly by the medical company when her TPN infusions arrive. We are so fortunate to have access to these resources and medical professionals. 

"All this is for your benefit, so that the grace that is reaching more and more people may cause thanksgiving to overflow to the glory of God." (2 Corinthians 4:15) We continue to be amazed and overwhelmed by the truly wonderful people in our lives who have done countless acts of kindness for Mae and our family. We could not be more appreciative or thankful. Mae is definitely a miracle to each of us.  

Making progress...

Update 11/9/17

Mae is starting to make progress and is back to gaining weight with the TPN. She is on a 12 hour cycle so she is receiving TPN for 12 hours (9:00pm to 9:00am) and then is getting a break for 12 hours. Here are some pictures of her beautiful little smile!

We appreciate the prayers, well wishes, meals, thoughts, kind words, and support immensely. Thank you all so much!

Minor setback... Monday, Nov. 6

Update: Monday, Oct. 6

Things were progressing nicely last week and we were hopeful that discharge was going to occur last week. However, for unknown reasons, Mae started to lose weight which meant it became necessary to begin the TPN regiment again. Although this was disheartening, the TPN dosage that she is on now is extremely minimal compared to what she was originally on and she does not have lipids being infused at this time, only TPN. Approximately 20% of her calories are coming from TPN and 80% are coming from the carbohydrate free formula.

Over the weekend, Mae did show a trend of weight gain for two days (Saturday and Sunday) so we are hopeful that she will continue this and then we can start to ween off of TPN again. The next steps after this will be determined once she has shown growth with the potential options being an IV with dextrose to get extra carbohydrate calories or increasing the amount of proteins and fats in her formula to get the extra calories.

Although this was difficult at first because we were preparing for her to come home, we are thankful that it happened at the hospital and not at home because it would have required another return/admit to the hospital. We want her at home when she is stable and healthy. The boys were able to come and visit this weekend and they LOVED seeing their little sister as she is babbling and interacting with them. She is truly a blessing and seeing the three of them together was beyond wonderful.