Beef yuck--it's what's NOT for dinner

AnnaSophia has had a happy, busy weekend with family. All three of the children really look forward to Steve's weekend visits. AnnaSophia is actually really doing well without her NG tube. She still occasionally throws up her meds, but nothing like prior to her tube placement. This is fabulous progress, and we pray that she keeps it up.

One of our goals is to get AnnaSophia to put on weight. Part of the strategy involved meeting with a dietician who works specifically with the transplant team. Some new research has dieticians encouraging the introduction of beef to babies earlier rather than later. It has good amounts of iron and zinc which are needed for growth and development.

The first time I gave AnnaSophia beef in the hospital, she ate it very quickly without any problems. Little did I realize that the steroids, which made her very hungry, were mostly the reason why she ate her beef with vegetable dinner so well. Each time I have tried since then, she did not want to eat it. Honestly, AnnaSophia had so many things going on, I just figured she didn't want to eat because of other issues, like an oral aversion.

Now that AnnaSophia is eating really well, I thought we would try her beef dinner again. We have developed a real honest and trusting relationship with feedings. She now knows that when I feed her, good things come to her. Tonight, she opened her mouth wide, expecting a yummy dinner and received a mouthful of beef yuck. She held her mouth open for awhile, trying not to swallow. When she finally did swallow, a full body shudder quickly followed. After that AnnaSophia clamped her mouth shut so tightly a crowbar could not have opened it. I tried her dinner myself and it was awful. One thing it does not take a rocket scientist to figure out is that if it tastes bad to adults, it will taste bad to children.

We will now try to reestablish our trusting relationship with food. Beef yuck will not be on the menu anymore. I will try other real-food beef options in the future. Maybe our dog Squirt will be interested in the other jars of beef smash in the pantry. For AnnaSophia, its back to cereal, fruits and veggies.

God Bless,

Mary

1...2...3...There's no tubes in me!

Today, AnnaSophia pulled out her NG tube again. She is very thrilled with herself. This time, I was hoping that we might be able to avoid putting it back in. After a call to transplant, we decided to attempt giving her all of her meds orally. After giving her all of her meds tonight, she did not throw up! Yeah, Yeah! This was big success. If she can tolerate all of her meds without lots of vomiting, there is no more need for a feeding tube.

AnnaSophia has continued to put on a little weight with each visit to clinic, and yesterday weighed in at 13 lbs. 6 oz. Her echo still looks good, with no visible sign of a gradient in her left ventricle. Unfortunately, her platelets were a little low, and she is back on aspirin therapy. Right now, her current meds are Neoral and Cellcept (to keep her from rejecting), Verapamil (to thin her ventricle), Prevacid (to protect her little tummy), and aspirin. Hopefully, she will soon be weaned off of all of her medications.

She is definitely making steady progress. She has been very happy lately, and loves interacting with her big brother and sister. Ethan and Emily steal kisses all day long. Yesterday, Grammy and Paw-Paw brought our dog Squirt up for a visit. This was the first time AnnaSophia and I had seen our dog since June.

The dog lived up to her name and squirted all over the pavement when she saw me. AnnaSophia was facinated with her furry friend, and Ethan and Emily got to spend some quality time with Squirt. Thankfully, the weather was mild and we spent most of the day at the park. AnnaSophia LOVES being outside. She smiled and cooed the entire time, not wanting to nap for fear that she would miss something. Overall, the visit was wonderful for all of our morale.

Our target date to come home is November 3rd. This could change a little as we get closer, but for now, it gives us another blessing to look forward to. God has been so good to us through everything. Remembering all of His blessings gives the children and I comfort. Thank you for all continued prayers. They mean the world to us, and God is so very good.

Blessings,

Mary

Rejoice always, pray without ceasing, in everything give thanks: for this is the will of God in Christ Jesus for you.

1Thess. 5:16-18

Small and steady improvements

AnnaSophia had clinic on Tuesday, and the good news is that she gained some weight. She now weighs 13 lbs. 5 oz.! She finally is starting to gain and keep the weight on, despite a weekend full of diarrhea. Because everything was going through her so quickly, her cyclosporine levels were a little low. It is constantly a balancing act trying to keep her levels steady. She will need to remain on her Cellcept until September 17th.

This weekend was a tough weekend for AnnaSophia, due to teething issues. I do have to say that it is such a blessing to see her going through normal developmental baby things, like teething, rather than serious problems with her heart. I have to keep a watchful eye on her and know when to call the transplant team, but it needs to be balanced with enjoying her as a "normal" baby. As Jilayne reminded me, she is a baby who has been through extraordinary circumstances, but now has a normal heart inside of her that is functioning well. It is a delicate balance for me as her mom. This is where I rely on the Lord to help me to not be a crazy, obsessed mom. I want to be smart in protecting her and watching for unusual symptoms, but I want to be able to enjoy her also.

Ethan and Emily are certainly enjoying their baby sister, but they are also incredibly homesick. They miss our home and our dog. We talk often about why we are here in Denver and about what a miracle little AnnaSophia is. They enjoy hearing the stories of the miracles that the Lord has done in their little sister. They also look forward to Steve's visits on the weekends. This helps the time pass a little quicker. I can say with certainty that we will all have a big celebration when we are able to move back home.

Thank you for continued prayers. Also, thank you to the Bowman family for blessing us with groceries today. I cannot possibly express enough how much your kindness means to us.

God Bless,

Mary

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