• Megan

October 1, 2018

It's been too long


The leaves are beginning to change color once again, going from green to orange, yellow, or red and then to brown. As the ground becomes buried under the colors of fall I get excited for a new season, my favorite season. I enjoy the warm days and cool nights after a hot summer. I love to see the reds, yellows, and oranges of Fall fade in and out around me. Going to pumpkin patches with the smell of fresh apple cider wafting around my head and enjoying the smiles and joy of children playing and experiencing new things. 

And this year we have the added joy of our Dorothy being with us, growing and healthy. Thanks to your prayers she is doing amazing! God grants us the miracle of her healthy life each day and we couldn't be more glad. We check in regularly with her GI team at Doernbecher Children's Hospital where they take labs and discuss how she is doing. They continue to be impressed with how well she is thriving and growing.

Dr. Garcia (gastroenterologist), the first person who gave us hope about Dottie living, growing, and having a relatively normal life, has been promoted. She is now spending most of her time with the school rather than in clinics. This is a great for her but means that she is no longer available to follow Dottie's progress and provide her the best overall care. We went in to Doernbecher to meet with our new gastroenterologist, Dr. Basset. She is very nice and has taken over care of all the TPN patients at Doernbecher. She is on the weekly team who overseas Dottie's TPN and enteral food (G-tube) decisions. This team reads Dottie's labs and talks to us about how she has been doing at home. Then, they talk together, Dr. Basset, a nutritionist, and several nurses, about how to move forward. Currently they discuss Dottie's progress every two or three weeks. We love having this continuous connection with the team. Talking with Dr. Basset, we found out she spent several years working at Boston Children's Hospital with the doctors that performed the worlds first serial transverse enteroplasty procducre (STEP), back in 2002. She maintains friendship with these doctors and knows she can call on their expertise at any time. It is also reassuring that Dr. Garcia is still part of the Gastroenterology team and available to Dr. Basset as well. 

We are often asked, "What's next?" or "Will her intestines grow? How long are they now?" Our intestines naturally grow as we grow and our hope is that Dottie's 7 cm will grow with her. There is no real way to check this progress and it isn't necessary for us to know. As we move forward there is no big goal in site or procedure we are working toward. We go week by week as make changes as Dottie shows us she can handle the last changes made. There are two parts to her care. 

Firstly, the TPN is what gives her complete nutrition. Currently she is on TPN/lipids 16 hours a day, 4 pm to 8 am. Her weight gain has slowed down some and she continues to gain at a rate that is appropriate for her age and size. The labs that are taken show the team if she is deficient in any areas and changes can be made. Dr. Basset said that the choices made about her TPN/lipids from the very beginning have been just what she's needed. Her body is really thriving and she is not deficient in any areas. This is a huge blessing and something to pray continually about because most often it is not this way. 

Secondly, is the g-tube. This is the feeding tube into her stomach. A few days ago we began transitioning Dottie from straight mother's milk to a specialty formula made just for kids with GI troubles. For a week we will do half and half mother's milk and formula and see how her body adjusts. After just a few days is appears that she might be pooping more with the formula. We will watch this closely to be sure she doesn't have any problems with dehydration. Pooping too much has always been a concern but has never been a problem Dottie has had. Her g-tube milk has increased slowly overtime and just last week moved from 10 mL an hour to 11 mL an hour. She has tolerated this well with a couple small spit-ups but nothing major.

Her g-tube runs 20 hours a day, from 4 pm to 12 pm. This slow and steady stream of milk is pushing her intestines to function properly and is also what will stretch (distend) her small intestine. There may come a time in the future that STEP (mentioned above) will happen but it is not something we have talked with Dr. Basset about. This is not a current goal of ours for Dottie. Our current goal for her is to just keep going. To push her gut ever so slowly until it's too much. Dr. Basset said that we need to find out how much she can take (milk/formula) and how her body responds. Unfortunately, once this wall is reached things often go "two steps back" and as much as we talk about it now and know it's coming, it will be hard when it really does happen. 

Please continue to pray for Dottie. She is a healthy and happy baby but this is a long term fight for her (and us). It can be hard, once the scary parts are over, to maintain prayer but we really appreciate all of you who do. We are overwhelmed when we hear that our sweet girl has made nightly prayer times with your children and that she is talked about and prayed over often. We feel so much love from everyone and are grateful. 

Enjoy a picture from the end of August. 

7 Months Old

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