Well, it has been a rough few days for us here. I suppose we shouldn't be all that surprised since we have been warned on many occasions to expect a lot of ups and downs on this journey of ours. After several very up days, which we are so grateful for, we have had a few down days in a row. Suzie had been doing so well that when they needed a bed in her nursery freed up (for the most critical babies), she was chosen to "graduate" to the next nursery. While this was very exciting, she didn't seem to respond so well to her new home. On Thursday when they moved her, she had a tough time with the transition. Her heart rate would drop, she would experience periodic breathing, and they had to significantly increase her oxygen. We didn't get to hold her or even touch her much at all that day. Friday morning, she seemed quite a bit improved. They let me hold her, however, she didn't respond so well to it and they had to put her back. This was heartbreaking because she has always seemed to respond so well to us holding her. That night she continued to fluctuate a lot in her breathing and experienced quite a bit of apnea (where she just stops breathing). They contemplated moving her back into her old nursery, but by Saturday morning, she seemed quite improved again, so they decided against it.
Last evening was the hardest part. The Neurosurgeon advised the doctor to drain out as much fluid as he could when he tapped her yesterday because her poor little head is just not getting any better. The doctor pulled out an enormous 37ccs (30ccs is one ounce), almost twice as much as they had the day before, which was already a huge increase for her. She had a very difficult time recovering from this large amount of fluid being drained from her head. Her heart rate when down quite a bit and she had a very difficult time breathing. At this point, the doctors are going to have to decide if they want to put the shunt in earlier than they would like, or continue to put her through this on a daily basis. Please pray for wisdom for the doctors and for the Lord to sustain our little girl through this.
The wonderful news is that God is no less good on the down days than He is on the up days. While it is certainly more of a battle for us to trust in Him when these hard days come, the beautiful thing about God's perfect sovereignty and goodness is that we know He is caring for us all as much today as He does every other day. He knows and ordains each day for His glory. I know that I forget that at times, but our prayer is that we would remember His faithfulness every day, whether up or down. I was especially encouraged by the song Phil Webb sang in church this morning and the words, "my source of strength, my only hope, is Christ alone," served as a very refreshing reminder to my soul!
Suzie is the sweetest little girl. Yesterday when I was holding her, she had some water spurt out of her ventilator. It squirted into her nose, mouth and eyes and all over her face. She coughed and squinted, but as soon as the nurse finished suctioning her, she just blinked her eyes and smiled. She is truly a precious little girl and we couldn't love her any more than we do.
We will keep you posted on how our little girl is doing! Thank you for your love and support.
Last evening was the hardest part. The Neurosurgeon advised the doctor to drain out as much fluid as he could when he tapped her yesterday because her poor little head is just not getting any better. The doctor pulled out an enormous 37ccs (30ccs is one ounce), almost twice as much as they had the day before, which was already a huge increase for her. She had a very difficult time recovering from this large amount of fluid being drained from her head. Her heart rate when down quite a bit and she had a very difficult time breathing. At this point, the doctors are going to have to decide if they want to put the shunt in earlier than they would like, or continue to put her through this on a daily basis. Please pray for wisdom for the doctors and for the Lord to sustain our little girl through this.
The wonderful news is that God is no less good on the down days than He is on the up days. While it is certainly more of a battle for us to trust in Him when these hard days come, the beautiful thing about God's perfect sovereignty and goodness is that we know He is caring for us all as much today as He does every other day. He knows and ordains each day for His glory. I know that I forget that at times, but our prayer is that we would remember His faithfulness every day, whether up or down. I was especially encouraged by the song Phil Webb sang in church this morning and the words, "my source of strength, my only hope, is Christ alone," served as a very refreshing reminder to my soul!
Suzie is the sweetest little girl. Yesterday when I was holding her, she had some water spurt out of her ventilator. It squirted into her nose, mouth and eyes and all over her face. She coughed and squinted, but as soon as the nurse finished suctioning her, she just blinked her eyes and smiled. She is truly a precious little girl and we couldn't love her any more than we do.
We will keep you posted on how our little girl is doing! Thank you for your love and support.
6 comments:
praying for you guys!!
We will continue to keep little Suzie in our prayers.
and just think...as much as You love little Suzie...God loves her even more!
We're still praying for your darling girl! Thanks for sharing.
You guys are always on our hearts. We are continuing to lift the three of you up in prayer.
Love,
Justin, Victoria, and Moriah Nelson
Kyle and Steph, how amazing it has been to read, hear and even see the perseverance the Lord has given each of you through this. Know Alan and I are praying for you as well.
Post a Comment