Sorry we didn't write this one last night. Both of us have been running on an average of 4-5 hours of sleep a night and I think it caught up with us yesterday. Luckily Chris is even still asleep this morning.
I must say, I don't really know what to write this morning. We spent quite a bit of time yesterday on our visits trying to understand some more of the equipment, how it works, how it reads, and what it means in terms of our little baby girl. As usual the staff is tremendously helpful and willing to talk about anything you need or want. Most of the day Bella was doing well but still continued to have her saturation problems on occassion. According to the chart, it appears they suctioned her more times than we wanted to see. The nurse yesterday (Jackie2) did mention that her murmur sounded much better. However, considering it was originally moderate to large, we have to be prepared for the case that she might still need a second treatment of the medicine to close it. Unfortunately, we let that discourage us last night. It is difficult to hear from the doctors that she is a "superstar" and then to see her have these dips; it kind of perpetuates our rollercoaster. I honestly believe that Bella was just tired last night. The respiratory therapist said that her settings on the vent were great and had been very low most of the day. Even though she is taking the medicine for the duct closure, they are still trying to ween her from the vent. There were several times yesterday that we saw the vent set at 21% O2. So we know that having these low settings all day drained her by late yesterday evening. We are just so fortunate to have this kind of care for our angel; it is amazing what they can identify and how quickly.
Romans 15:13
Now the God of hope fill you with all joy and peace in believing, that ye may abound in hope, through the power of the Holy Ghost.
We wish you all a wondeful, spirit filled day; for God so loves you!
6 comments:
We appreciate your diligence to post everyday. I know it can be hard to post the lows or just the "usual" NICU stuff. Just know, regardless of how many posts we read, we will continue to lift your family up in prayer; numerous times throughout the coming days.
We love you, I am sending virtual NICU cuddles for Isabella...I know you can pass them on :)
Chris and Machel-
Congrats on one week with your beautiful baby. Unfortunately, roller coaster is a proper description for this journey. Rhys had many days I would sit by his isolette and pray harder than I ever have. For him to pull through just one more day, for him to remain strong, for God to not take Bentley’s brother. Miraculously, he is with us still. I have no doubt that the power of prayer has helped accomplish that. 21% O2 for a 24 weeker is phenomenal. Rhys' oxygen is still higher than that and he is nearly 5 months old! I encourage you to ask every question you can think of so you better understand all aspects of what is happening. With that knowledge you will find some peace. It is overwhelming now, but you will get it. The day will come that you yourself sound like a doctor because you know so much! Stay positive and take care of yourselves. Bella needs you to stay well.
On another note, I have a gift I’d like to send Bella. At our hospital, after they removed the humidity from Rhys’ isolette, they gave him what is called a Zaky. Google it. This is an amazing tool that Rhys absolutely loved. He was the poster child for this product. The nurses used to joke he was going to take it to kindergarten, and to this day he still loves them. I have one I would like to send you guys for Bella when she is able to have it. Please let me know if it is okay to send to the hospital at your attention.
With love,
Candice, Cody & Rhys
I received the link to your blog from a friend. Sounds like your precious daughter is a fighter! We're praying for her!
My niece is 1 week old, Thank the lord for each day. Give her wee hand a squeeze (not too hard) from her uncle Bobby.
Love and prayers,
Bobby
Found your blog through a friend, Amanda Mc.. I don't know you but from a mom to a mom, you and your princess are in our prayers.
Even though I don't know you, I find myself thinking of your daughter, so I say a little prayer, a prayer of healing and strength. Must be a mom thing.
I started to send you all a note that contained Romans 15:13, but I didn't. I was glad to see you all thought of that verse today. I don't know what more to say except that we are praying for all three of you all.
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