What a roller coaster ride of emotions and hospital floors this week. It's been a difficult week full of ups and downs, mostly for mommy since I'm the pessimist and realist in this situation. I hope for the best and prepare for the worst so I've been down some pretty scary roads in my mind this week.
Sunday Lydia was taken to the floor and we had a couple of really good days, we even met Alex Gordon. Tuesday afternoon Lydia had a breathing episode and went back to the PICU. I think she loves the PICU and all the love she gets there. Friday Lydia went back to the floor and had a good day. Her feeds were increased to help her gain weight and she was still on oxygen so she didn't have to work so hard.
Even a shorter stay on the 4th floor this go around. Lydia came back to the PICU early this afternoon. Daddy was here early for her 6:00 am feed and they snuggled. When he left everything was okay and she was sound asleep. Within an hour her heart rate increased and her breathing escalated again. She was fussy and being held until I arrived around 11:00 am. She was in and out of sleep and very hot and clammy. Down we came to the PICU.
Once she arrived she was assessed, swaddled up good and tight and calmed down without much trouble. The ICU docs aren't giving her anything for pain except occasionally Tylenol and are letting her relax on her own today while trying to find the reason for the elevated heart rate.
On the 4th floor they don't like to let things ride and play out. They also don't seem to think that an upset and fussy baby could just be upset and fussy. I kept saying that with her increased feeds she seems gassy. They didn't want to give her anything or vent her. With the g-tube, Lydia doesn't burp, instead we vent her tube. In the PICU I say she's gassy and they give her a gas relief medicine, they vent her with success multiple times and she has a blowout. Yep, I told you she was gassy. She's done fairly well this afternoon and seems happier, we just need to figure out the heart rate.
The lack of weight gain is still very worrisome and troubling to me. She's on more fortified breast milk than is typical for a baby her size and she's just hovering around her birth weight. She gained before both surgeries and lost after both surgeries, but now she's just holding pretty steady. What do we do to get her to gain weight? We need her to breathe easier. What do we do to get her to breathe easier? We need her to gain weight. It's a vicious cycle and no one seems to have an answer. I'm at my wits end trying to get answers and figure this one out. The best answer we have is to give her time...have you met me? I don't like that answer! Patience, Kinsley, patience.
So today we request your prayers for Lydia to rest and sleep peacefully while being able to start gaining weight. We need her to grow! Just some grams would be nice, small steps forward. Thank you for all the continued thoughts and prayers. She has an army of prayer warriors sending up prayers each and every day that are keeping us all courageous and brave.
“Do not pray for an easy life, pray for the strength to endure a difficult one” - Bruce Lee
Your strength and determination is admirable! You are a fantastic mama, Kins!! Love you, Kins, Dan and mighty Lydia!!!
ReplyDelete