Mystery fevers

Thursday started off very early for me. I woke up at 5am noticing that AnnaSophia felt warm. After taking her temperature, she had a fever of 100.5. She responded to tylenol well, and did not run a fever the rest of the day. Her clinic appointment went well. Her heart is improving, and overall, she looks really good. Jilayne and I thought that her fever this morning could be attributed to teething. She's not really drooling, but she's chewing on everything and cries when she puts things in her mouth.

I was so exhausted lately, that I went to bed early (10:30pm) without updating the blog. As you can see, it's 3:30am, and AnnaSophia and I are awake, because she has another fever. This time it was 101. I gave her tylenol, and hopefully it will come down. If it doesn't, I will be putting a call into transplant.

It's so hard sometimes, trying to differentiate a fever in a normal baby at times, let alone a fever in a post-transplant baby. Is it normal teething, or is there something else going on? I just pray that it's nothing to be worried about.

Mary

Praising God through it all

I never thought I would ever hear myself say this, but Praise God for allergies! I am so glad to say that I do not have a cold, but just an up and down battle with seasonal allergies. This doesn't mean that I won't use the same precautions with hand washing and germ control that I would use if it were a cold. I'm just glad that I don't have anything contagious that could harm AnnaSophia. At times it almost feels like we are dodging a germ gauntlet at all times. Even our phlebotomist had a cold and was wearing a mask during AnnaSophia's blood draw today. But I know that I can only do so much, and ultimately, she is in the Lord's hands, and will at some time, get a cold.

Our clinic appointment today was good, but we needed to increase her cyclosporine a little due to still low levels. She is not metabolizing enough because of some vomiting over the weekend, but the good news is that she did not vomit tonight after her meds. As best we can tell, it looks as though the blockage in her left ventricle is completely gone. Praise God for healing! She also gained a little weight, and is up to 13 lbs. 2 oz. Hopefully she will continue to gain weight and not have anymore setbacks.

I do have a special prayer request for anyone felt led to pray for the Sorenson family. I met Chad and Deanna Sorenson through Calvary Chapel Aurora, when we first came to Denver for AnnaSophia's transplant. Their young son, Christian, had a transplant when he was a baby. He had a few setbacks when he was around three years old, including some rejection and I believe an infection, but seemed to be doing well when I met him during AnnaSophia's hospitalization for her transplant.

This morning, I saw Deanna at the hospital looking tired and overwhelmed, and she explained that Christian had been admitted because he now has lymphoma. This is a rare complication of heart transplant recipients, affecting 1 to 3% of the transplant population. I don't know what precipitated his condition, but it can sometimes be linked to Epstein Barr Virus. He is currently off of all rejection meds so that they can start chemotherapy. His mom explained that the tumors in his lungs are growing at alarming rates.

This is such a great family, and I felt a lot of empathy for the pain that they are experiencing. Ethan, Emily and I have been in prayer several times today for Christian and his family. We are praying for a miracle for him, and that the doctors would be given divine wisdom in knowing how to treat Christian. We are praying for comfort for his whole family, including his two sisters, and that they would not be consumed with fear. I hope to have periodic updates on his status, as this family is near to our hearts.

Mary


Psalm 121

I lift my eyes up to the hills—
where does my help come from?
My help comes from the LORD,
the Maker of heaven and earth.
He will not let your foot slip—
he who watches over you will not slumber;
indeed, he who watches over Israel
will neither slumber nor sleep.
The LORD watches over you—
the LORD is your shade at your right hand;
the sun will not harm you by day,
nor the moon by night.
The LORD will keep you from all harm—
he will watch over your life;
the LORD will watch over your coming and going
both now and forevermore.

Good Day

AnnaSophia has not thrown up once today. Yeah! This is a lot of improvement from the past few days, and her appetite is improving also. It helps that Steve is visiting this weekend. Having her daddy around always seems to make her feel better. She is definitely teething hard, and some of her irritability can probably be attributed to that.

Now for some bad news. I'm praying that I am just suffering from a bout with my allergies. August and September are the roughest months of the year for me, but unfortunately, I am thinking that this could be a cold. I am taking every precaution I can possibly take to protect AnnaSophia, and I hope that the antibodies she receives from breastfeeding gives her a little immunity.

Steve has been working hard to get some of the most beautiful pictures of AnnaSophia (courtesy of Little Loves Photography) on the blog. One of her pictures is now located on the side bar, but hopefully we will have more coming. Thanks Yvette for the gorgeous pictures!

Again, thank you for all who have felt led to pray for our family. Your prayers make a difference!

Blessings,

Mary

Some good news--but still sick

AnnaSophia's lab test came back CMV negative! Yeah, Yeah! We are very glad about this, but unfortunately, she still doesn't feel great. She threw up twice today, not a lot, but still not normal. It's not like she is really, really sick, just kind of sick. We just pray that she will improve and start getting better.

When a transplant child is showing symptoms like these, the first thing the team does is rule out rejection. So many viral symptoms are the same symptoms of rejection. AnnaSophia's echo and EKG looked great-the best echo yet. Her lab work is coming back good, except for her cyclosporine levels (anti-rejection medication), which were really low, due to her vomiting. Rejection has been ruled out, so we are left with thinking that this could be a viral thing.

The strange thing is that, I havn't gotten sick. Her and I are so close all of the time, one would think that if she had a virus, I would show even some mild symptoms. The Cellcept medication that she is on is very hard on the stomach. In two more weeks, she will come off of this, and hopefully start feeling better.

For now, all I can do is trust in the Lord for His plans for our little one. He has seen her through bigger obstacles than this. I just pray that He will sustain us and give us the endurance to get through the tiring, day to day stuff. The following scripture has given me comfort, and hopefully, will give you some comfort and peace also:

Be anxious for nothing, but in everything by prayer and supplication, with thanksgiving, let your requests be made known to God; and the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.

Philippians 4:6-7

Thank you everyone who has felt led to pray for us. We appreciate it more than words can express.

Mary

Mystery illness

AnnaSophia started the day with a fever and not feeling well. After a call to transplant, we decided to have her seen. She had a lot of blood work drawn, including checking her CMV levels (cytomeglovirus). Her donor was CMV positive, therefore, AnnaSophia was on a 6 week course of an antiviral called Valgancyclovir. Last Saturday, she was able to stop the medication. There was some concern today that the CMV could be causing some problems, or she could just have a virus.

This is one of those situations where I just keep backtracking and playing everything over in my head trying to figure out how she could have contracted anything. We are so careful in protecting her. No one in the family is sick, but Jilayne (transplant coordinator) suggested that sometimes people can carry a virus and not actually be sick. In the case of an immune suppressed person like AnnaSophia, she can catch the virus, whereas no one else would necessarily show symptoms.

So now we have a new protocol, as per Jilayne, for the next several months. In addition to very good hand washing, no one is allowed to kiss on her excessively, be in her face, allow her to put her hands in or near people's mouths, touch her hands, etc. for awhile. I guess that I am the exception, seeing as I get to breastfeed her. In essence, she needs to be "bubble baby" for awhile.

Hopefully, she will get better over the weekend, and we can avoid anymore visits to clinic until Monday. We had to increase her cyclosporine (to guard against rejection), because her levels today were very very low. Jilayne believes that this was possibly due to all of the vomiting. The team will continue to keep a close eye on her to make sure that whatever this little illness is does not affect her heart.

Prayers are appreciated regarding her newest challenge. We pray that she will overcome this, without damage to her precious new heart.

Mary

For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future.

Jeremiah 29:11 (NIV)

Tuesday night vomit fest

AnnaSophia started the day out really well. She was so happy and almost seemed like a normal little baby. I noticed that she seemed to be getting on a really great schedule, with dependable nap times today. This is such a good thing, as I use this time to homeschool Ethan and Emily. Even though I know that we are still going to have tough days, it seems like it takes me by surprise every time.

AnnaSophia was really hungry around dinner time and ate her cereal and applesauce like a champ. Later, she just didn't seem right, and started vomiting while I was nursing her. That was just the beginning. She just kept getting sick time after time tonight. She does not seem to have a virus, and after contacting Jilayne (our transplant coordinator) she reminded me that we will have good days and bad days, and that her medications can make her really sick.

Our poor little angel just seemed to have the wind knocked out of her tonight, but as I write this, she is resting peacefully. I just pray that this latest little bump in the road is short lived, and that she will not get dehydrated. I pray that the newness of tomorrow morning will bring peace for her little digestive system, and that the vomiting will not have any adverse effects on her heart.

Mary

Say cheese!

Today at clinic, AnnaSophia had a visitor from our local Fox 21 affiliate from Colorado Springs come to visit. Reporter Christina Salvo was interested in AnnaSophia's story, and came to Denver today to see what a normal day in clinic looks like for AnnaSophia. She interviewed myself, Steve and our transplant coordinator, Jilayne. Thankfully, AnnaSophia was in a good mood and was fairly cooperative through the interview.

I have been surprised at the interest that has come about regarding AnnaSophia's story. Christina was very nice and made a tremendous effort to truly understand the facts surrounding our little one's life and struggles. The interview was to air tonight during the 9pm news. I have not seen the story, because I cannot get the Colorado Springs news up here, but I was told by some family members that the story was well done. Kudos to Christina Salvo for her hard work!

I can honestly say that I have a new appreciation for what Steve does for a living, because it was very hard for me not to feel silly in front of the camera. I had to be very concious about what I was saying, so as not to sound studid. I am not quite sure how Fox 21 heard about AnnaSophia's story, but if publicizing it helps encourage other families to draw closer to the Lord, then it was all worth it.

Steve and I also cannot possibly express how grateful we are the local community for all of their assistance through fundraisers for our little girl. We are amazed and blessed by the outpouring of concern and support for our family during this time. Thank you, thank you, thank you.

God Bless,

Mary

Pure joy

2 My brothers and sisters, when you have many kinds of troubles, you should be full of joy, 3 because you know that these troubles test your faith, and this will give you patience.4 Let your patience show itself perfectly in what you do. Then you will be perfect and complete and will have everything you need.

James 1:1-4 NCV

This past winter, I had the privledge of attending a homeschool meeting, where author Kimberly Woodhouse was speaking. Her topic was homeschooling through various trials. In light of AnnaSophia's recent open heart surgery and subsequent hospitalizations, I thought that I just had to go to that meeting. She shared some of the trials that her family had gone through, and how they found that the Lord had seen them through. She shared a couple of bible verses that inspired her, and the above verse was one of them. I have held onto this verse through our journey with AnnaSophia and her heart issues. Sometimes it seems insane to be able to find joy in scary, out-of-control circumstances, but when you wait on the Lord, He can see you through even the most difficult of times.

This weekend can only be described as pure joy. Steve came up from Colorado Springs, and we were all together as a family. Simple things, such as breakfast together, with AnnaSophia on my lap, were pure joy. We are living very simply in an apartment here in Denver, but we are excited to have our own space to relax and not worry about germs. AnnaSophia seemed so content, like she knew that this was how our family is supposed to be--all together. Steve, Ethan, Emily and I enjoyed every little moment of cuteness that AnnaSophia displayed. I cannot express how thankful I am for our home away from home. I have been working on the story of how we came to find this apartment for the blog. It's complicated, but soooo cool, because God just took care of every little detail.

I believe that AnnaSophia's healing process is benefitted by having her entire family together. She seems so much happier, and she seems to be having more good days than bad. Saturday, she had trouble with vomiting and diarrhea, but today was a good day. Hopefully, her echo will show improvement tomorrow in clinic, and she will continue her upward trend. As we continue through this journey, I just pray that our family will continue to experience that special joy that is only found through our Lord and Savior Jesus Christ.

God Bless,

Mary

Making progess and feeling better!

AnnaSophia is finally starting to feel good. We are so happy, and I hope that she will continue to have more good days than bad. Her medication levels continue to come back just where we need them to be, and she is able to stop some of her meds. This week, she had her last dose of Bactrim, aspirin and as of tonight, she can stop her Valgancyclovir. In the next two weeks she will come off of her Cellcept (which will be replaced by another drug), but we are making progress. By tomorrow morning, she will only be taking Neoral, Cellcept, Prevacid and Verapamil. That is such a change from the nine medications that she was orginally taking.


As AnnaSophia starts to feel better, she is making amazing progress developmentally. She is sitting up, rolling over, and attempting to push up on all fours. She continues to babble, and Ethan, Emily and I were stunned to hear her say mama the other day. She is very interested in her environment, and it will only be a matter of time before she is into everything.


Before her transplant, I never thought that I would see this day come. Even though I felt that the Lord had given us hope and promise for AnnaSophia, sometimes it is hard to see past the current day to day struggles. One thing I do know from all of this is that the Lord has grace for us. I rely on Him daily for strength. Sometimes people will say that they marvel at how strong Steve and I are. The reality is that we are both very weak, broken people, and the only way we cope is by the strength that the Lord has given us. We take each day moment by moment and never forget to give the praise where it is due. The Lord has worked a miracle in our little girl, and we are thankful for each moment we have with her.

Mary

He has given me a new song to sing,
a hymn of praise to our God.
Many will see what He has done and be amazed.
They will put their trust in the Lord.

Psalm 40:3 NLT

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

AnnaSophia's in the hospital

Well, that didn't take long. AnnaSophia is back at Children's Hospital for rejection. She has been admitted and will be on the 9th floor. The left ventricle is still very thick and a portion of her aortic arch is narrow. The doctors will likely start her on another course of steroids while she's at the hospital for the left ventricle issues, and possibly perform a heart catheter procedure on the arch to relieve the narrowing.

I will stay in Colorado Springs with Ethan and Emily, unless she takes a turn for the worse. So, please pray for Mary and AnnaSophia while they're in the hospital. My hope is the doctors will start giving us more direct answers on AnnaSophia's prognosis, and that AnnaSophia will start getting better.

Prayers are appreciated,
Steve

New camera

Here are a three quick test photos I took with my new camera tonight. I still have much to learn about this thing -- lots of features and settings:

Emily

Ethan and Emily

Squirt "it's time for a hair cut" Berry