Prayer warriors needed again

If my catching a fever was a "darn it" moment, we've just experienced a "double darn it" moment tonight. Now, Mary has a fever and the only thing she can take is Tylenol. I visited the doctor today and I was prescribed an antibiotic, but that isn't an option for Mary. We both apparently have some kind of virus, although my fever subsided today.

So, we desperately need prayers now and in the days ahead that AnnaSophia does not get this and that the family gets healthy fast. If AnnaSophia gets this virus, we must rush her to the hospital with even the slightest fever. Fevers and viruses can have nasty impacts on a cardiac baby.

I would prefer to deliver good news to all of you, but unfortunately, we continue to be presented some obstacles. Still, we are constantly humbled by what other parents at Childrens Hospital are going through, including Jesse's parents. I often feel weak compared to many of the parents we left behind at Childrens Hospital. They continue to be an inspiration to us.

On a lighter note, Mary reminded me that our blog is becoming stale on the picture and link front. So, providing things stabilize, we'll try to get some new pictures up. I also visited my workplace briefly today with Ethan (I hope I didn't infect anyone!). What an amazing group of people at Colorado Springs Utilities! Unfortunately, the media rarely shows this side of the employees at Springs Utilities and it saddens me.

Steve

Today's update -- a day of doctor appointments and a moment of "darn it!"

AnnaSophia had three medical-related appointments today (Monday).

Our day started out at the cardiologist office for a 10 a.m. appointment. AnnaSophia still has some significant rhythm issues going on, including a point where there is a prolonged pause in her heart beats. That isn't so good. There's a technical name for it, but my simple brain is rejecting the smart people stuff today. Her cardiologist will take a trip up to Childrens on Thursday to review her heart rhythms with one of the experts up there to determine next steps. Those next steps will hopefully "just" include a modification to her heart medication.

The thing about heart medications is that any little adjustment could have negative consequences, so we're praying that the Lord will continue to show these excellent doctors the way.

Here's the good news though, her oxygen saturation levels looked excellent (98%) at the doctor's office, and the cardiologist we saw today thought she looked fantastic. He said she was "beautiful." That's my girl! She's also eating better, praise God!

The cardiologist thought her congestion issues were still related to the breathing tube.

The next appointment today was with the kids' amazingly stupendous pediatrician. Dr. Danahey. Dr. Danahey saved our daughters life on January 9 by recognizing the importance of AnnaSophia seeing a cardiologist right away. She is a lovely person and great doctor. We feel so blessed to have her.

Our last appointment for today involved a 2-hour visit to the hospital for a chest x-ray for AnnaSophia. The chest x-ray is for another cardiologist appointment on Friday.

Here's my "darn it" moment. I've practically scrubbed my hands off through frequent hand washing during this journey. Unfortunately, today, I haven't felt right. The stress and lack of sleep has taken its toll I guess. I'm running a low-grade fever and must quarantine myself from AnnaSophia. I believe it's a sinus infection, which wouldn't be contagious. Pray that is all I have as I would never want to get my little girl sick. I humbly ask for prayers that I'm O.K.

Finally, a special thanks to all of my friends -- whom mean a lot to me -- for encouraging me about the work situation. You are awesome.

Steve

Update -- need prayers

Well, Friday's weight check went O.K., although we believe that AnnaSophia's logged weight was wrong on her discharge papers from the hospital. To make a long story short, we think she gained 3 ounces between Wednesday and Friday.

Things haven't gone as well this weekend. AnnaSophia isn't nursing as well as she was on Thursday and Friday, and is doing a lot of sleeping (great for normal babies, not so good for a heart baby). She also sounds congested and sneezes a lot. We called the on-call cardiologist and AnnaSophia will see him tomorrow, about five days earlier than expected due to the concerns. So, we're asking for prayers that she is O.K. and that she starts eating better.

I am asking for prayers as well that God will reveal to me when the right time is to go back to work. I feel incredibly guilty for not working over the past month. I keep getting different opinions -- some are surprised I didn't go back when AnnaSophia was discharged, and others are telling me I'm doing the right thing by staying home a bit longer.

Finally, continue to pray for Jesse and his parents. Jesse is at a very important stage right now, especially after a drainage tube inadvertently came out.

So far, so good

What a blessing it is to be home! AnnaSophia had a great night and is nursing like a champ. What an inspiration she is! She has her first of several doctor appointments tomorrow. So, we're praying for a safe trip and good weight gain. We continue to be nervous about her ongoing rhythm issues, but have trust in the Lord that He will see us through this.

We hope to post some new at-home pictures of AnnaSophia by the weekend.

Also, please pray for little Jesse and his family. Jesse is still at Children's Hospital. For those of you who don't know about his blog, it can be found at www.ourblessingnamedJesse.blogspot.com. Jesse and his parents -- Kristan and Chad -- are an inspiration for Mary and I. We consider them our friends.

Going home

We've just been told we'll be going home with AnnaSophia today! God is awesome! The doctors believe her heart rhythm issues can be managed with a medication called Sotalol. She seems to be nursing well, so we're hopeful for weight gain when we get home.

We're obviously thrilled about going home, but also scared. We won't have doctors or nurses to call on to provide immediate assistance if something happens. AnnaSophia will also be on a variety of medications, beyond the Sotalol. So, we'll have to manage that as well, along with frequent doctor appointments.

Once again, thank you all for your moral and financial support, and most of all, the prayers. AnnaSophia is a testimony that prayers are heard and that miracles do happen when you put your trust in the Lord. Although we are going home, we ask for continued prayers for this next stage in our journey. AnnaSophia will need ongoing cardiac care and we will be a long drive away from the doctors up here.

Steve

Delay on email responses

I thought this would be the best place to post this. We are receiving so many awesome and uplifting emails from friends, family and people we don't even know. They are SO appreciated. Your kind thoughts and prayers give us strength. So, I'm frustrated with myself that my replies have been so slow. A lot of that has to do with the wireless connection here at the hospital.

I can receive emails just fine through Windows mail, but I then have to go into Falconbroadband's Web mail feature to craft and send a reply. I've been so mentally and physically exhausted that I've been a bit lazy with this. I promise I'll get better! In the meantime, please keep the emails coming. They are very helpful. We feel so blessed.

We've received so much support from all of you, but I want to take a second to send a special thanks to my coworkers and the employees at Colorado Springs Utilities. You are incredible people; thank you so much for your generosity.

Steve

Praise God from whom all blessings flow

AnnaSophia is progressing well and the doctors and nurses are predicting that she may be discharged Thursday. On one hand Steve and I are more than ready to go home. We miss the peace and routine of home. On the other hand we are a bit frightened that we will not have a nurse available at the push of a button. AnnaSophia is still having abnormal heart rhythms. The one comfort that we have is that we know that she is in God's hands.

We are still praying that feeding goes well. The nurses, docs, OT and lactation nurse are giving us a 24 hour nursing trial to see if she can take in enough calories. If she is unable to do so, we will be trained on how to manage a naso-gastric feeding tube. I truly feel that once we are home and the stress level decreases that she will nurse well.

We had a wonderful nurse last night who was determined to help us solve our sleep issues with AnnaSophia. He was on the phone with a doctor, and they were brainstorming as to why she was so fussy. Everything from colic to pain to reflux was discussed. I told him that at home our routine was to put her in bed with me and nurse her. He found a portable monitor and put her in bed with Steve and I. Miracle of miracles, she nursed and slept fine all night. Praise God for our nurse Ben. He said that he will make arrangements for AnnaSophia to sleep every night with me.

Thank you everyone for your continued prayers and support. We love you all.

Mary

Sleepless in Denver

Last night AnnaSophia had a very difficult night and we don't know why. After her 10:30 feeding she started screaming and was inconsolable till just now - 8:00 am. The doctor checked her out overnight, but could not figure out why she was so upset. Steve and I have had very little sleep, as we took turns trying to console her. Her feedings are not going well and she has a lot of weight to regain. Please pray for her feedings to go well, and for all of us to have wisdom in knowing what is wrong with her and how to make her feel better.

An update from Mom

"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 a hope and a future." Jeremiah 29:11

This is the verse the Lord gave me during my 20 week ultrasound when the tech kept looking at her heart and frowning. We did not know that she had a serious heart defect. The tech told us due to the baby's position, she could not get a good view. At the very most, we expected that she could have a small ventricular septal defect. The Lord kept reassuring me that she would be ok, and I clung to His promise. The Lord's ways are not ours. I thought "what a great testimony she would have if the Lord healed her at birth."

I had no idea how greatly the Lord would be glorified through the trials we have been through with AnnaSophia. I am reminded of the story of Gideon and how the Lord reduced the size of the army so that no one would doubt that the victory would be the Lord's. AnnaSophia had all the odds stacked against her, and the Lord has answered prayers and done miracluous things every step of the way. Her interrupted aortic arch, ventricular septal defect, atrial septal defect, and PDA were surgically repaired. She came off of bypass well, she did not have a stroke or neurological damage. She had a fully developed thymus gland. Her genetic tests were negative for DiGeorge Syndrome! Yeah! She came off of the ventilator well. AnnaSophia had a lot of hurdles to overcome, and praise God, she has overcome them well. She has completely been in God's hands the entire time, and there is no doubt about how God has done miraculous things. Steve and I feel honored that God chose us to be AnnaSophia's parents, and the love we feel for her is overwhelming.

Thank you to everyone who has generously offered us prayer, moral and financial support. We feel as though the Lord has embraced us through all of you.

Update: The rhythm specialist doctor came to the hospital to see AnnaSophia, due to problems with ventricular tachycardia and premature ventricular contractions. (These problems are not good and require immediate attention.) After the doctor assessed everything, he determined that these were not ventricular problems, but atrial problems. Steve and I are getting a crash course in cardiology, and apparently this is a better problem to have. Atrial issues are less serious than ventricular issues. We ask for continued prayer regarding her rhythm, as she is not yet out of the woods for a pacemaker.

Thank you and God bless you all.

Mary

Prayers needed

AnnaSophia is having a rough day with her heart rhythms and we are very concerned. They are checking her blood for an electrolyte imbalance and the doctor is reviewing her rhythms. Please pray that this is nothing more than an electrolyte imbalance, rather than something internal within the heart that would require surgery. We are very scared right now and would appreciate the prayers.

A picture and more thanks!

Here's a picture we took tonight. You'll note a purple binky in the upper corner of the picture. AnnaSophia wants everyone to know that she doesn't like the binky nor does she think it's very refined, but that she just deals with it because, ya know, it's the right thing to do.

I sound like a broken record, but we continue to be in awe over the outpouring of love and support we have received. This generosity has left us speechless and so thankful. We are extremely blessed.

Today's update -- full diapers please

Must fill diapers! The three keys for AnnaSophia right now are eating well, filling up diapers and maintaining good heart rhythms.

Today, the doctors gave the O.K. for AnnaSophia to try nursing again. For all that she's been through, she's doing a pretty good job. The only downside is she's probably not getting enough milk, because she's falling asleep midway through nursing. So, we need prayers that she'll nurse well and fill up some diapers.

Also, we're hopeful that AnnaSophia will get her stitches and wires out tomorrow (the staples securing her chest will stay for a while longer). The doctors believe that's a good possibility. Woohoo!

For the heart rhythm issue, the doctors will continue to monitor the situation over the next few days.

Amazingly, the doctors seem to be gearing us up for sending AnnaSophia home within the next week (providing no major complications), which is both wonderful and scary at the same time. Among the considerations, she will go home still very sick and possibly with a feeding tube. But, the doctors feel their goal is to get her stable and then send her home. Please pray for God's will to be done here.

Finally, the kids are both back in the Springs tonight (Ethan with Grammy and Paw Paw, and Emily with Aunt Torry), allowing Mary and I to spend some time together and for me to help Mary get some rest. She did not sleep at all last night. We're praying that the kids have good attitudes and are respectful while they're away.

The scars of a young warrior

My wife just reported that AnnaSophia has eight scars on her body, not counting the IV entry points. Amazing. Obviously, her largest one is the scar down her chest with staples protruding down its length.

My little girl is truly a warrior for God and a living testimony to His strength. I love her so much.

Quick update

Mary intended to file this report, but she's resting on the "sofa" in AnnaSophia's room. She still hopes to file her own report later tonight.

We've had to tilt AnnaSophia up quite a bit in her hospital crib to help reduce the gagging and spitting up. The doctors continue to monitor her heart rate, but it looks fairly stable at the moment.

We are still finding out new things every day. Mary was reading a book given to us at the hospital that says babies like AnnaSophia should avoid even a common cold for the first year of her life. What a daunting task. Our kids have to be here with us, so we're doing everything we can to keep them healthy. We were just reminded by one of the nurses that even when AnnaSophia goes home, she will still be a very sick baby. That's scary for us.

I remain amazed at the outpouring of prayers, love and support we've received from our family, friends and coworkers. Even people who hardly know us have emailed to check on us and to offer prayers. God is awesome.

I'll have to head back to Colorado Springs tomorrow night to give the kids another chance to sleep at home and to catch up on more bills. Just the thought of being away from the baby again is painful.

Spoke too soon...

Remember how I wrote that things change quickly? AnnaSophia is vomiting again after eating. We still don't know if it's because she's irritated from the ventilator, or if it's actual reflux. Please pray for continued healing and a peaceful night for our little one.

Also, pray that my children will be able to spend a couple of nights away from Mom and Dad soon. Dad could use a short break to focus on AnnaSophia. My 7-year old daughter was scheduled to stay with her Grammy tonight in Colorado Springs, but changed her mind at the last minute. If it's God's will that the kiddos stay with me, pray that I have the strength and patience to manage things, namely fights between siblings.

Moving on up!

AnnaSophia continues to amaze us all. She has been moved to the 9th floor, which is a fantastic sign. Even though she remains in critical condition, we can't help but be encouraged by the move. I'll try to get some new pictures tonight of our little girl.

She is gagging, but no recent vomiting episodes. Thank God!

This morning's update

AnnaSophia is actually nursing! Praise! She is vomiting shortly after eating, so we don't know if she has reflux or if she's just irritated from the ventilator. Please pray that she does not need surgery for reflux.

Also, we received more good news that AnnaSophia may be moved to the 9th floor and out of the cardiac intensive care unit, a major accomplishment for our little fighter! The prayers are working! God is in control.

Finally, to all those who have helped us, we are so grateful. Just before AnnaSophia's surgery, my car had broken down and required $540 worth of repairs. Some amazing folks at Springs Utilities came forward and paid it off in full! We are SO thankful and are in awe at the outpouring of love and support. Words cannot express our appreciation. I am continuously humbled through this experience.

A special thanks to our family, friends and coworkers

I just wanted to end my string of posts tonight by saying how much I appreciate our family, friends, pastors and my coworkers. You all have strengthened us. Your generosity is amazing. We love you all. Your calls and emails mean so much to us.

Blessings...

My wife

Please keep my wife Mary in your thoughts and prayers. She is alone tonight at the hospital. Mary is a tremendous woman -- so dedicated to her children. God's light shines brightly through her.

Our son and daughter are having a really tough time, so I made the trek to Colorado Springs tonight to give them some return to normalcy. Pray that they get the rest they need and that I can get some sleep. This blog is the only thing keeping me sane as I think about how I'm 70 miles away from my wife and our critically-ill daughter.

Yesterday's update

AnnaSophia was taken off of a ventilator before noon on Wednesday, January 16. Praise God! That was an important step for our daughter to take.

The one thing about heart surgery is things change really fast. Soon after being removed from the ventilator, AnnaSophia had "an episode." Her heart rythyms went haywire and her blood pressure dropped. The doctors had been adjusting her rythyms with an external pacemaker, but she is now off of one. So, we were hoping and praying she was past this.

Earlier tonight, my wife saw her rate drop to 84 beats per minute -- not good. So please continue to pray that these episodes subside soon. She is also back on oxygen.

One positive step, one negative one...

AnnaSophia -- post-surgery picture

The nurses and doctors do their best to prepare you for what you'll see as parents when your baby comes out of open heart surgery, but it doesn't reduce the pain and tears you experience when you actually see it.

This is a picture of AnnaSophia soon after surgery. The surgeons had to leave her chest open due to inflammation around the heart. Thankfully, we can spare you those images.

A pre-surgery picture

The hardest part about seeing your newborn child in critical condition is all of the tubes and wires coming out of every part of their body. For AnnaSophia, this included an IV that was inserted into her head. Yet, when I look at this picture, all I see is her beauty and sweetness as the binky provides a form of a pillow.

AnnaSophia -- pre-surgery

Just a few hours later, and our daughter would have been gone. That thought went through our minds so many times on Wednesday, January 9 -- a fateful day in AnnaSophia's young life. A valve in her heart (called a "pda"), that normally closes on all newborns within 3 to 4 days, had somehow stayed open much longer than that. It was keeping her alive, allowing blood to flow through her damaged heart.

Add in her wonderful pediatrician and a stupendous cardiologist, and God had put the pieces and people in place to give AnnaSophia a fighting chance. I should've known that when her cardiologist looked and sounded like Pierce Brosnan -- Mr. 007 -- that she was in good hands. To AnnaSophia's grandmas, sorry, no pictures yet of the cardiologist.

The doctors saw the signs that her heart was crashing on January 9 and took amazing steps to save her life and send her to The Children's Hospital.

Since AnnaSophia was on oxygen from the time she was born, we knew something was wrong. But, I'm not sure anything can prepare you for a diagnosis that includes several major heart defects and an immediate directive for open heart surgery. Unfortunately, that was what our little girl faced.

How AnnaSophia came to us

Since God knows me better than anyone, I've come to believe that He must show me His plans in a manner that resembles an 18-wheeler crashing into a Yugo. Our first two children were born with severe reflux and both of them required surgery to correct the ailment, a surgery that -- at the time -- I felt was the most serious thing (yeah, right) that could be done to a young child and an unsuspecting mom and dad. The surgeries and frequent hospital stays disturbed me so much that I retired myself from child production. Well, I don't think God wanted me to do that! There was no retirement clause in my contract.

In September 2006, I underwent a vasectomy reversal by a tremendous vascular surgeon in Conway, Arkansas. I felt God had called us to have more children; that it was time to let go of my fears and selfish nature, and that he would bless us with a baby that would bring honor to Him and joy to our hearts.

After a skeptical urologist told me my low "count" would make it nearly impossible to have more children, I wisely put the matter in God's hands. He rewarded us with AnnaSophia, my beautiful baby girl. Perhaps it is everything that led to her arrival that has created this awesome bond I feel I have with her.