Busy weekend, and AnnaSophia's struggles continue

Our apologies for the delay. The focus of this weekend was to get Mary and the kids moved into their new apartment in Denver, so that required a great deal of time and energy. We received a lot of help from my mom and dad, and some very good friends. We felt very blessed.

We were missing a dining room table for the apartment, but my in-laws were kind enough to take the trip up to Denver to drop off a table and set of chairs, and help out with groceries. Many thanks!

We've also had a change-of-service conflict with Mary's cell phone, so if you've been trying to reach her at that number, it's not going to work again until Monday or Tuesday of this week. Our apologies.

It was great for me and the kids to see AnnaSophia again this weekend. She was smiling and cooing almost all day on Saturday, and seemed to be doing pretty well. We even got to see AnnaSophia's new head bob routine when she gets really excited. It's the cutest darn thing and it reminded me of how precious her little life is to our family.

Here's a bit of bad news...I guess it took me leaving today for things to go downhill. About an hour after I left today, AnnaSophia started fussing, stopped eating, and vomited two or three times. Mary tells me AnnaSophia has been extremely irritable all day.

After a couple of calls into the on-call transplant coordinator today, the doctor's theory is that AnnaSophia may be having withdrawal symptoms from the steroids. Actually, that's great news if this is the cause, and not her heart. Please pray that AnnaSophia (along with Mary, Ethan and Emily) can avoid a late night visit to the ER, and that she is stable until her clinic appointment tomorrow. Also, pray that Mary gets some much-needed rest, and that Ethan and Emily make the transition to the apartment without major incident.

Finally, a special thanks to the owners of Smoothie King for their generous fund raiser today, and to our friends (Patrice, Janet, Rachel, Pastor Pat, Kimberly Woodhouse, etc.) for promoting the event.

Blessings,
Steve

Yeah!!!!!!!!!!

Praise God, AnnaSophia's echo has improved a lot, and the team is very pleased. Her blood pressure has come down quite a bit too. AnnaSophia has smiled and smiled this morning and is like her old self. She is babbling and smiling at everyone, including strangers in the elevator. This is the true test on how she is feeling. She is just so content today, and happy as can be. Even her cyclosporine levels came back perfect. Hopefully, she will continue to improve with no more setbacks. Our three months up here officially started after her last dose of steroids. If she can continue to get better with no more rejections, we will be able to go home three months from now.

The other day we received a letter from AnnaSophia's donor's family. We were so blessed by the sweetness of the letter. AnnaSophia's donor was a sweet little boy who loved to share everything. In the tragedy of his passing, he was able to share one last thing, his heart. As this precious family was praying for us during the transplant process, we were praying for them. My hope is that they will be as blessed when they receive our letter as we were by theirs. God is so good, and we give Him all the praise and honor.

Mary

Minor Improvements

Sorry that it has taken me so long to update. AnnaSophia was discharged from Children's Hospital late Tuesday evening after a dose of MethylPrednisone. We had to come back to the hospital by 7am the next morning for clinic and her last dose of steroids. The steroids have made her blood pressure skyrocket, and I have been in continuous prayer that it will come down now that she has finished her final dose. Wednesday morning, I was told that Dr. Pietra had put AnnaSophia on Friday's schedule for a heart cath and would only take her off if she showed enough improvement in her echo. Thankfully, that afternoon I received word that her echo had indeed improved enough to avoid a cath, but Dr. Pietra does want to cath her in the next few weeks.

Each day, she seems to improve a little. Today, she actually had a few half smiles for me. By this evening, she was cooing and babbling. She is also making improvements with eating solid foods, and has found that graham crackers are pretty yummy.

Tomorrow, she will be seen in clinic again. Hopefully, her blood pressure will have improved, otherwise the team may need to put her on medication. Every thing is a delicate balancing act with her care. Dr. Myamoto is reluctant to put her on blood pressure meds, because it could make her blockage worse. The key seems to be to watch her closely and don't rock the boat.

Thank you so much for everyone's prayers. They are the greatest gift and much appreciated.

Mary

New hypotheses--New hope

Today I met with Dr. Pietra and the transplant coordinator (Dee Dee). When Dr. Pietra came in, AnnaSophia's color actually looked a little bit better, and she wasn't as punky as she was yesterday. His hypothesis regarding what caused her downward trend is that the recent high temperatures could have made her feel poor and consequently led to dehydration. With less volume moving through her ventricle, the blockage and the thickness looked worse.

Regarding the narrowing of her arch repair, Dr. Pietra is not entirely sure that it has gotten worse. He said that before her transplant, she really did not have a lot of volume moving through her aorta. Now, she has a large heart that is pumping well, and there is a lot more volume moving through her aorta. The use of ultrasound (echo) to evaluate the narrowing is really a poor tool, because he said that it almost always over estimates a coarctation. A better tool is a heart cath, but he is reluctant to do that unless it is absolutely necessary, because he wants to be able to preserve her vessles.

As for her new oxygen requirements, he thinks that maybe because she was feeling so poor yesterday, she was taking very shallow breaths, which could have led to a few little collapses in her lungs. The hope is to get her off of the oxygen in the next day or two. Dr. Pietra was really hopeful that AnnaSophia would turn around, and I honestly feel better after talking with him.

Thank you to all of our dear friends and family who have continued to pray for AnnaSophia. The Lord continues to hold our little daughter in His hands, and Steve and I are comforted by this.

Mary

Still on 9th floor

AnnaSophia was stable through the night, which meant that we were able to stay on the ninth floor, rather than going to the CICU. I was so thankful that the doctor thought she was looking ok last night, but as I told her, I would feel better knowing exactly what is going on with her. It is very hard not knowing. Our nurse possibly thought that this is just how AnnaSophia handles rejection. Her color actually looked better this morning, then as she was sleeping in my arms her o2 sats started to drop. When they dropped into the 70's, I called the nurse in. She bumped her oxygen up to 1/2 a liter, then her sats increased to the 90's again.

Currently, we are waiting for rounds with Dr. Pietra (director of transplant) and the coordinator. Hopefully, they will have more insight as to what is going on with our girl and how to proceed.

Mary

Getting sicker

AnnaSophia has puzzled the doctors today. Her oxygen saturations have started dropping, and she is now on oxygen. Her color has continued to grow very pale by the hour this afternoon. She is sleeping a lot, and her respiratory rate has increased. Some blood work was drawn to check for infection, and she will be getting an xray soon to rule out fluid in her lungs. Quite honestly, the team does not really know what is going on with her, which is really scary for me. I would feel much better if they knew exactly what they were dealing with, so that they would know how to treat her. Because of the doctor's concern, she will most likely be moving to the CICU tonight.

We pray that the Lord will give His wisdom to the doctors and transplant team, that they would know exactly what is wrong and how to treat AnnaSophia. We ask that she respond well to the course of treatment taken. Lord we pray for you tender mercies for our dear little girl.

Mary

Heart failure again???

I just spoke with the transplant coordinator on call this evening. AnnaSophia's face is very puffy, she has not wet a diaper in over 6 hours and is vomiting. These symptoms remind me very much of the symptoms she experienced before transplant. Usually, when a baby is treated for rejection soon after a transplant, they respond very well. AnnaSophia showed signs of progress, then she started to get worse again. The team decided to start MethylPrednison and IVIG again in hopes of combating the rejection. She also has a narrowing of her descending aorta where her original arch repair occurred in January. I was surprised to hear that she still has that old section of her aorta; I thought that it would have been replaced with the transplant, but apparently not. She may need a heart cath to stretch the aorta, and while they are in there, a biopsy of her new heart would be obtained. I am concerned about whether or not she could endure the anesthesia with her heart in its current condition. The doctors' concern at this point is that she may be in irreversible heart failure. If this is the case, she would need to be listed for another transplant.

To be up front and honest, I am scared to death for my little girl. When I prayed for the gift of time with her, I was really hoping that it would be more than three weeks. Things change so quickly, and her symptoms earlier today were very subtle. Once we start down this road, she seems to get sick so quickly. I know full well that none of us are in control here-not me or Steve or the doctors. We can do what we know to do, but ultimately, God is in control, and we have to submit to Him. Part of me is afraid to sleep tonight, because I want to watch her symptoms and see if she gets worse. No one knows her like I do, but when exhaustion kicks in, it's a hard thing to fight. I have to pray that the Lord will watch over her. She is His precious little creation, and I know that He loves her more than I do. I just pray that her new little heart will respond to the medications and improve.

Mary