A Trip to the Magic House

The last week or so has been very rough for us. Faith is barely sleeping at all at night so we are running on fumes right now.  Nevertheless, we still always try to keep up with life and seek out positive experiences for Faith! This past Sunday, the Magic House in St. Louis opened its doors free of charge to families of the Delta Gamma Center for Children with Visual Impairments. We were all exhausted, but some how mustered up the energy to go to the event. Faith was fussy and it was our first out and about since starting continuous feedings so it wasn’t the best day. However, we were very thankful for the opportunity. Faith seemed to enjoy the water area the most! I think she could of held her hand in the water all day! This is a good thing considering she will be staring aquatic therapy very soon!

Faith playing at the water table.

 Faith also enjoyed taking in various sounds in the different areas of the Magic House. She also took her shot at playing the piano!

Faith trying out the piano with her feet.

 As Faith’s development progresses and life settles down a bit, we are hopeful that Faith will get more and more out of these experiences.

In other news, we have recently made some changes to Faith’s nutrition and feeding regime. We started her on a elemental medical formula to see if it would help with her GI issues.  It is pretty much the best stuff out there! It is hard to say how much it is helping since her reflux issues are so significant but we are continuing it for now. We also started her on continuous feedings last week.  Feedings take about 4.5 hours now instead of the previous average of 50 minutes. Faith is hooked up to her feeding pump all day and night with the exception of 1 hour between feedings. The rate of the formula going in to her stomach is much slower now. We had to do something because Faith was starting to lose weight and was spitting up and vomiting much larger volumes than in the past. It is not ideal or convenient, but the good news is that she has not spit up or vomited since we made this switch. Also, she is not choking and gagging anymore. She is still gurgling and making some reflux noises, but things are much better. We will be seeing a new GI doctor in a few weeks and hope to figure out some things then. Fortunately, we will be able to report this trial to the doctor along with everything else we have tried. We are trying to avoid surgery if at all possible, but there are many things to consider and sort out before final decisions will be made. So far, so good with the continuous feedings!

We have been advised to stop oral feedings with Faith. The doctors are afraid of the risks of aspiration such as pneumonia and long-term damage to her lungs. We are still able to give her a small amount of baby food with one of her medications each day but that is all until we can determine how high the risk is for aspiration with baby food.

Faith is teething for sure! It seems like Faith’s molars aren’t helping things right now either. Let’s just hope they move in quickly!! Drool, drool, everywhere!

Please continue to pray with us for improvements in sleep! We are very concerned about how the sleep deprivation is affecting Faith’s growth and development. Of course, it is also taking a toll on Mike and I! We need to be rejuvenated to take on the daily challenges and be at our best for our Super Baby Faith! We also ask you to continue to pray for wisdom, knowledge, and determination for the doctors that treat Faith.

Keeping the faith,

Bridget