Smiles!

Update- 10-30-17

Mae is doing very well with her fructose and has reached the 'highest level' to add in order to create a formula that has an appropriate ratio of fats, proteins, and fructose to create the caloric intake for growth! This is fantastic news! However, the best news is that she is, as of Saturday night, off of her TPN! She has made so much progress/growth in the last seven-nine days that the doctors believe she is absorbing enough calories by mouth to warrant taking her off of the TPN, she does still have an IV of fluids for 12 hours during the day, but, overall her health has improved tremendously. Right now we are at the point that she will either 1. come home with an IV for fluids, or (if she shows more improvement) 2. will come without an IV. Regardless of either of those, the best news is that she will not be on TPN. She will have her central line in place when she is eventually discharged in case she loses weight or is failing to thrive. 

On a neurological level, we are very encouraged at the signs that Mae has shown over the last couple of weeks. She is starting to give us meaningful smiles, make beautiful eye contact, and has started to make baby babbling noises when engaged with us. This is wonderful news and we are thrilled at her progress. We are hopeful that things continue on this path, she is truly a miracle and has the most precious smile and personality. 

*We have not been given a discharge date yet, but, we are hopeful within the next week to have her at home with us. We appreciate the continued love and support that we have been given, we are extremely fortunate to have such amazing people in our lives. 

Next level

Quick update- The fructose is going well still! Praying that it continues to be successful! They increased the fructose dosage to the next level. If still good on Monday, they will begin to reduce her TPN.

Over the weekend Ryan and I took the boys to the 'Fallin' for Halloween' in the park, the boys had a great time!

Improving

As we come to the end of our fourth week at UM Children’s,  we are starting to get some good news and closer to getting home.  We had initially presumed we would be going home earlier this week.  Stacy and I completed a two day training for home care of the Broviac and TPN administration. However due to some unexpected PROGRESS, the doctors decided to keep her 2 more days to test some treatments/increased volume of a special formula (by bottle/mouth). She responded well and therefore they are trying a fructose infusion starting today at noon. If she responds to that, we have a path to major improvement! Dr.'s thought we would know within 48 hours. If it goes well, then it appears she will go through an approximate 10 day weaning period (at the hospital) off of TPN and we COULD come home with no chemicals/no machines!! If she does not tolerate the fructose, then we will probably come home Monday or Tuesday back to plan A (on TPN). She is catching up in her growth and we are all cautiously optimistic about this new path.

Oct. 10 Update

Update -  Tomorrow morning at 7:30 Mae will have a procedure to insert a central line into her chest that will go directly to the vessels surrounding her heart. The central line, also called a Broviac, will be responsible for distributing the TPN throughout her body 24 hours a day. While under anesthesia for this procedure, she will also get a follow up MRI to compare to the one that was done prenatally and at birth. We are monitoring her input and output very carefully, she is getting between 22 and 25 ounces of  special carbohydrate free formula each day.  We are going to be learning Broviac care this week and weekend, with the hope that we will be discharged early next week, that would be the best case scenario. Mae has gained weight for the past four days in a row! That is a huge milestone, she is getting the majority of her daily nutrition through the TPN, but her formula is being absorbed a tiny amount as well.

Although no parent wants to be in the hospital, we are very fortunate to be receiving the best care possible. We have a gorgeous view from the room that overlooks a park and forest. The  leaves on the trees are changing colors and it is absolutely beautiful. This past weekend Ryan, the boys, and I went to a tailgate for the Michigan and Michigan State football game… Go Green! We also participated in crafts and the boys made some special things to take home. Mae has been given the clearance to be able to leave her room, so we have been taking walks around the hospital for a change of scenery.

Thank you to everyone who is continuing to pray for Mae and our family. We appreciate the prayers more than anyone could imagine. It is a very the overwhelming feeling that we are surrounded by so much love and support. We are truly blessed.

Stable-Mild Progress

We are still at U of M and the doctors are searching for answers as to why Mae is 'not thriving.' Yesterday, under sedation from anesthesia, she had a PICC line (PICC Line) inserted into her upper right arm to the major vessels near her heart. The procedure went well and they are administering TPN (Total Parental Nutrition) so that Mae will get the nutrition she needs to start to gain weight and develop. She has also been eating a special carbohydrate free formula to aid in her growth. The doctors, specialists, and nurses are all working together to try and figure out what might be wrong with Mae and her inability to properly digest food to get the nutrition she needs to grow. We meet daily with her 'team' and they are analyzing blood work, stool samples, and biopsies from her intestines/colon/stomach to try to find a solution.  They are leaning toward the answer being some type of congenital malabsorption issue. We have not been given a firm time frame for return home but are hopeful it will be within the next two weeks.

The hospital has fantastic family services for us, the boys were able to come and visit this past weekend and participated in 'medical play' where they got to choose a stuffed animal and give it the medical attention that Mae has (IV, PICC, heart monitors, ID bracelet, etc...) She has a private room where we are allowed to stay/sleep in a chair/on a couch. While we were both with her around the clock for the first five days or so, we are now taking turns back and forth staying days/nights with her, while trying to maintain some normalcy with the boys at home/sports/school/etc.