Ashley's Story

She will leave fingerprints all over your heart


Brief Explanation of BUN

A blood urea nitrogen (BUN) test measures the amount of nitrogen in you blood that come from the waste product urea. Urea is formed when protein is broken down in your body. It is produced in your liver and eliminated from your body in urine.

This is a daily blood test that is run on Ashley. It gives us an estimate of how well her kidneys are working. If her kidneys are not removing the urea from her blood normally then she shows a high BUN number in her labs. Dehydration is one reason that causes the kidneys to not be able to remove this urea. This seems to be the reason for Ashley's struggles. Her FK (anti-rejection) medication can also cause her kidneys to slow down this process as well.

Once again it is the balance of Ashley's fluid status that seems to be the cause of her problems. We go from one side to the other very quickly. Just yesterday it was determined she was too overloaded with fluids so we backed down on her TPN. Obviously we backed down too much because by morning she was battling another round of dehydration. This fluid balance along with her feeding issues are the two things that keep us here in the hospital. Once these two things are figured out (barring any infections or virus or rejection) then Ash and I will be on our way to our apartment. Unfortunately we are a very long way from that day. Ashley has not been successfully fed in 17 weeks, and no one knows why she is not able to tolerate food. This is one area that David and I are working on. We would like to feed Ash breast milk rather than formula. The team has agreed to give it a try. They have never done this with one of their small bowel transplanted patient. We tried this with Ashley before her transplant in an attempt to get her short bowel to absorb but we were unsuccessful. We do not know if she will grow on it this time, but we believe it is worth a shot. After her new feeding tube is placed later this week we hope to begin feeding her. Our prayer is that it will be successful and that she might tolerate the milk better than the formula. It is a long shot. Ashley's issue is not really related to what we feed her, but to the shape of her anatomy post transplant. Dave feels led to try so I am going to follow his lead.

Now that Ashley is being re-hydrated her urine output is picking up. The concern with the increase in her fluids is that she may keep too much fluid on board causing her lungs to struggle. It seems as though one thing affects another and another and another. It is hard for us to think about being in this position more than four months post transplant. We definitely would have never imagined that our little one would not be able to eat or breathe. I try to keep my mind focused on the thought that God has plans to use us in some way in this hospital. There has to be a reason for us to still be here.

Once again your prayers and your faithfulness to our Ashley's story touches us deep in our hearts. We know how difficult it must be to follow the ups and downs that she goes through. We realize that many have drifted away from her journal because it is too emotional, but we pray that they were somehow touched by His hand as they learned of our Ashley. Thank you for loving her and for loving us. We hope to meet you all someday if not here then in Heaven. May God bless you. Trish


At 7:12 PM , Anonymous Suzanne said...

Yeah.... I think that your doing right by trying the breastmilk. I am a HUGE advocate for breastfeeding. There are so many positives that come the contents of breastmilk. I know you guys know all of that. Praying that this will help resolve alot of the feeding issues & that progress will be made. Praying...

At 7:39 PM , Blogger renovating this heart said...

Trish, thanks for the update so we can all start praying for the breast milk to do some wonders. And yes, though I imagine it's incredibly hard to take sometimes, the Lord MUST have you there for some reason.... and you amaze me in your willingness to serve Him while going through this personal hard time. Many hugs to you tonight!

At 8:28 PM , Blogger Ivey Elizabeth Sirmans said...

Hang in there!! You are doing an awesome job!! She is a fighter.

At 8:50 PM , Blogger Sarah's In the Midst of It said...

Trish, I haven't left a comment in a couple of days, but I never miss a post. Sometimes I worry that my "I'm praying" gets old :)

The truth is, though, that I am praying! I pray for Ashley almost as much (and sometimes more, I think!) than my own children. Your motto is so true--she leaves handprints on my heart.

But you do, too. Your transparency and the way you open your heart speaks volumes. Someday, when you two are back home, I'm going to meet you! We don't live that far apart, you know! (I'm in the DFW area.) I'm sorry you're having a rough time; I'm sure that the months are feeling soooo long. Know that you are being lifted up constantly, and that at the end of the day, when you have nothing left to give, the truth remains: He loves you. He loves Ashley.

God bless you, sweet Trish, and I hope you have a good night with your amazing daughter. Hugs to you both :)

At 8:58 PM , Anonymous Regina said...

Trish - If Dave feels led in this direction after much prayer, I truly believe that God is giving him direction and this new effort will greatly help Ashley. I am praying for success and healthy growth. I am also praying for the mom and dad that are willing to sacrifice everything for the health and happiness of their children ... no matter what! Yes, I'm talking about you and Dave! Please let me know if there is anything I can do!

By the way, Dave has given me permission to corrupt you at the next nationals. Of course, it will be Rated G corruption, but we are going to have so much fun with our girls! I am working on a block of rooms! Love ya sis! Regina

At 9:38 PM , Blogger Krista said...

I Pray that those feeding issues will resolve. Something has to work and God must be trying to intervene! God has you there to touch people's lives and you are inspiring many! STay strong and keep that amazing Faith. Praying everyday for God to strengthen each of you and bring you together with your family.

At 9:45 PM , Blogger jtcosby said...

Can't wait to hear how the breast-milk goes. I am a huge fan of breastfeeding so I am really interested in hearing how this goes. Praying like crazy and biting at the bit to read your blog as soon as I walk in the door from ANYWHERE!

At 10:24 PM , Blogger Tara said...

Trish, I am praying, but not just praying for you and for Ashley. When I pray, I am thanking God for leading me to your blog so that you can minister to my heart! God is working in more lives than you can ever know through you and Ashley. As a mom of three , soon to be four, I can only imagine that this ministry is not one you would ever wish for. But, I hope your heart is lifted knowing that God is working mighty changes in the hearts of others through Ashley. Praying for you daily and then some!


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