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