Welcome back! We have had some great progress in the last couple of days! I will cover each of our major concerns (cystic hygroma, kidneys, heart and feeding) in detail.
Cystic hygroma- Praise the Lord, her hygroma has not grown in the last couple of days.. and as of today we think it may be shrinking. They have decided that they want to do an MRI when she is 3 months old to make sure it is not connected to her brain, but they are waiting to do that due to the stent in her heart. We have to wait because we do not want the heavy magnets to possibly cause the stent to migrate. The makers say that it will not, but we just want to be on the safe side.
Kidneys- We finally had our VCUG yesterday, and I got to watch them perform it. It was not fun to have to hold her head still during the exam but it was very cool to watch the process. We are pretty confident that there was not much reflux during the exam but we are still waiting on official results. We do still have to do one more procedure to check the kidneys and it will be done later this week at some point.
Heart- From a heart standpoint, she is doing great! All of her oxygen levels and vital signs look great which means that her heart is doing what is supposed to at this point. Her stent does seem to be applying some pressure to her right pulmonary artery, but we do not think that is a big deal at this point.
Feeding- Over the last few days, we have progressed a great deal in the area of feeding. First, they moved her to a bolus feeding schedule. This means that instead of having a continuous flow of food to her stomach, they have a larger amount flow over a shorter period and then stop it for an hour. They do this to help her get used to the feelings of being full and hungry. This also allows her stomach to get used to stretching. Our goal for her is to be able to consume 40 ml ( a little over 3 ounces) in a three hour period. We started with 10 ml by mouth and 36 ml over a 2 hour period. She did well with this, so now we are feeding her as much as she will eat in a 15 minute period, and then putting the rest of the 40 ml into the tube for the next hour and 45 minutes. Then she gets an hour break and we start all over. She has been doing pretty good with this, although she is still somewhat disorganized so we still need some help from speech.
Sadie also had visitors this weekend. Papa, Grandma, Aunt Donna and Tanner came to visit! It was so fun to have them all up and they even went to the heart walk with us today. It is very eye opening to see so many families who are affected by congenital heart disease. We were honored to be able to meet other families who have been where we are and are still in the fight!
Verse of the Day:
"Look at the birds of the air; they do not sow or reap or store away in barns, and yet your heavenly Father feeds them. Are you not much more valuable than they?" Matthew 6:26
I like to plan. I like to be in control. I like to have everything in order. These last few months, these things have not been possible. I have to let others plan, and be in control and I have definitely not had everything "in order." I have realized that I have to "let go and let God" yet I still forget that so often. After everything He has done for us in these past few months I still find myself trying to take the reigns back and I start worrying again. I start to think "what if." Then I stumble upon a verse like Matthew 6:26 and I am reminded of how God designed us and why He designed us. He loves us- we are His most valuable possession. He designed the birds with the skills they needed and provides for them, of course He will do the same for me. So instead of worrying and trusting in myself, I must trust in Him. I must depend on Him alone. Thanks Lord for the beautiful reminder you give us through your nature!
Praises for the Day:
1. Sadie's lungs continue to appear clear!
2. Sadie's hygroma has not grown.
3. Sadie's kidneys seem to be much better than expected.
4. My Aunt Linda's cancer has not grown and has slightly decreased.
Prayer Requests for the Day:
1. Pray that she continues to progress with her feeding and that we can go home without an NG tube.
2. Pray that her hygroma is not connected to her brain!
3. Pray that the extra blood flow through her arch and left ventricle allow them both to grow!
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