Samford waiting for the hotdogs to fall off the counter...
Papa Carl and Thomas having fun...
Aunt Shelby and Lily...
Papa Carl and Auburn Lily...
Gran and Lily...
Lily finally relaxing after trying to feed...
By the time most of you read this Lily will be officially 100 days old!!! It is unbelievable the course she has been through and the journey our family has taken over the past 100 days. It has been a very trying time for all of us, but God has delivered us from so much fear, doubt and anxiety.
Lily has been able to keep one tube out! We had been praying so hard and long for her to wean off of her Oxygen Settings and for now it appears that prayer has been completely answered. She is still off of oxygen and continues to maintain her blood oxygen at acceptable levels. Please continue to pray that she will be able to stay off O2.
Unfortunately, the nurses had to replace her feeding tube early this morning because Lily's reflux was unbearable. It is painful for us to watch her as she deals with this trying to take a bottle. The doctors have adjusted her dose of Zantac and hope that it will correct the problem. As of this post, Lily was able to take her minimum through the bottle at 9:00 pm, which is an improvement from this morning. However, she needs to be taking eight of these bottles per day, and showing that she can still gain weight consistently. We are convinced that Lily is capable of completing eight bottles per day (barring reflux pain), and are concerned that Lily will begin associating pain with bottle and possibly regress on her feedings. Please pray this does not happen.
Her blood pressure is still elevated, but not near as high as it has been in the past. The doctors are actively monitoring this, and attempting to piece together an idea of why it is happening.
She will also be having an MRI next week to check brain function. This is a normal procedure and she is showing no clinical signs of issues. We have been told since birth there will be an MRI at 38 weeks gestation or upon discharge.
We long for Lily to be at home with us and know that will come in due time. For now we would ask that you pray for resolutions to her reflux and blood pressure issues, that she is able to stay off of Oxygen, and for her MRI next week.
Lily has been able to keep one tube out! We had been praying so hard and long for her to wean off of her Oxygen Settings and for now it appears that prayer has been completely answered. She is still off of oxygen and continues to maintain her blood oxygen at acceptable levels. Please continue to pray that she will be able to stay off O2.
Unfortunately, the nurses had to replace her feeding tube early this morning because Lily's reflux was unbearable. It is painful for us to watch her as she deals with this trying to take a bottle. The doctors have adjusted her dose of Zantac and hope that it will correct the problem. As of this post, Lily was able to take her minimum through the bottle at 9:00 pm, which is an improvement from this morning. However, she needs to be taking eight of these bottles per day, and showing that she can still gain weight consistently. We are convinced that Lily is capable of completing eight bottles per day (barring reflux pain), and are concerned that Lily will begin associating pain with bottle and possibly regress on her feedings. Please pray this does not happen.
Her blood pressure is still elevated, but not near as high as it has been in the past. The doctors are actively monitoring this, and attempting to piece together an idea of why it is happening.
She will also be having an MRI next week to check brain function. This is a normal procedure and she is showing no clinical signs of issues. We have been told since birth there will be an MRI at 38 weeks gestation or upon discharge.
We long for Lily to be at home with us and know that will come in due time. For now we would ask that you pray for resolutions to her reflux and blood pressure issues, that she is able to stay off of Oxygen, and for her MRI next week.
2 comments:
Happy 100 days, Lilly!
We praise God for you and your family's faith!
...
jennifer and fam
Hey Lily--We are proud of you for doing so well, it's obvious the Lord had BIG plans for you! We are praying for you and your mom, dad, and brother!!
Hey Hol- It's so good to see your mom, carl, and shelby..i can't believe how old she is getting..hope you all had a good visit!
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