Well, here is what is going on in Dallas. As most of you already know, the doctors have told us that we will be in the hospital until the Glenn procedure (2nd surgery). So, yesterday I went to Yukon and with the help of Mom, Jana, Stacey, Steve, Stephani, Patty, Amy, and Tony, we packed up our rent house. They were a huge help and we got A LOT accomplished. For those of you who offered to help…thank you as well. This was my first time out of Dallas since September 11th. It was hard being away from my little girl, but it was also good for me to get out of the hospital for a little while. I even had the chance to visit with my “helpers”, sweet neighbor Brenda, and dear friends Kelli and Stephanie. Oh, I cannot forget getting to see Skippy JohnJons! She was very excited to see me.
Emma has not had it easy these past few days. They were able to get her heart arrhythmias under control, which is great. They switched her back to a PO (by mouth) form yesterday and she seems to be tolerating well. They have also switched her to a different formula called portagen. (http://home.intekom.com/pharm/bm_squib/portagen.html) which is a step up from the tolerex. This formula actually has fat in it. They are trying to get her up to 30kcals, but Emma keeps having diarrhea when the amount is increased above 24kcals. Please be praying about this because she really needs optimal calories in order to gain the weight necessary to get stronger and bigger for estuation and the next surgery. Also, diarrhea increases loss of oral medications, which we found to be very detrimental in Emma’s health. (e.g. A-Tach). Also, they have had to go up on Emma’s vent settings since her extubation/a-tach episodes and we are unsure why this is. Before extubation, Emma was on a rate of 4 (how many breaths per minute) and oxygen at 21% (room air). Now Emma is on a rate of 20 and oxygen at 30%. They are planning on taking Emma to the OR tomorrow around noon to do what is called a BRONC (http://www.webmd.com/lung/bronchoscopy-16978 ) This procedure will give them an idea about whether or not Emma has any airway issues that are contributing to her having problems coming off of the vent. Please pray that this goes well and that we will have some answers as to how to help Emma come off the vent.
So, to make a long story a little shorter, Emma’s heart function is doing very well. Most definitely an answered prayer; however, there are problems that need to be fixed. Emma NEEDS to come off the vent. The longer she is on it, the more dependent she is on it. We feel like we get really close to getting her off of it and then we take several steps backwards. It is hard to watch her struggle with this and gag and cough on her tube. Also, her feeds need to increase and be tolerated. Emma is not too fond of touch and this breaks my heart. We are trying to get to hold her more and do more with her, but she is 8 weeks old and has only been held about 5 times. Imagine for a minute watching your baby cry, gag, struggle and touching her only irritates her more.
I love my baby so much and want her to get better SO bad. We need prayers. This going “backwards” business is NO FUN! It can be wearing on us. Also, Scott starts working on Monday, so Emma and I will need to learn to do this without him on a daily basis and neither one of us is looking forward to that.
God is Good! He fearfully and wonderfully made Emma! Although we cannot always understand his plan…..he has one!
Specific Prayer Requests:
Pray that Emma will tolerate higher calorie feeds and GAIN MORE WEIGHT!
Pray that Emma will be able to come off the vent SOONER THAN LATER!
Pray that Emma will be more adaptable to touch and holding!
Pray that Emma’s oxygen saturations will increase on lower vent settings.
Pray that Emma will start having more “good” days instead of “no progress” days.
Pray that Emma’s heart will be free of arrhythmias.
Pray for Scott and I to stay strong in our faith and strength.
Pray the BRONC will go well tomorrow and we will get some answers.
Pray for the doctors, nurses, and other staff caring for Emma.
Pray for our friends Taylor, Ella, Ella, Emma, Lyric, Lane, Kaytee, Blake, Haven, and many others who our on a daily health journey.
Sarah (Emma’s Mommy)