We have so many wonderful family members and friends that are concerned about Ellie and want to know how she's doing that I have decided to do a weekly Ellie update. So here is quick overview of the key areas we have been focusing on this week.
Weight
7 days old -- 5 lbs 4 oz (o.6 percentile)
14 days old -- 5 lbs 7 oz (0.4 percentile)
Ellie failed to get back up to her birth weight by 2 weeks. The goal is to have her gaining an ounce a day but she gained less than half of that so we have started adding calorie rich formula to my pumped breast milk to increase her caloric intake. We will take her back to the doctor this week to make sure this gets her weight gain on track.
Eating
Ellie is still unable to latch on and breastfeed which is very sad for me. I continue to pump and bottle feed which is time consuming, but worth it. The max volume she can tolerate is 2-2.5 ounces every 3 hours during the day and every 4 hours at night. It takes her about 45 minutes to finish her bottle. She continues to struggle with the coordination of suck/swallow/breath and her O2 sats drop frequently during feedings.
Breathing
Ellie came home from the hospital on 1/16 of oxygen. She is always hooked up to an apnea/heart rate monitor, but it does not tell us when her oxygen saturation is. It has never made sense to me how we can be effectively managing her oxygen without a O2 sat reading. So when our neighbor informed me she had an O2 sat monitor from when her baby was on oxygen and offered to let us use it I was thrilled. We hooked her up and her sats were 87-89. We want them to be in the 90s. So I turned her oxygen up to 1/8L. The next day at her doctor appointment we were planning on monitoring her sats and trying to wean down her oxygen, but the same thing happened and her sats dropped into the 80s when on 1/16. So instead of weaning her oxygen down like we had hoped to this week, we had to turn it up to 1/8. A step in the wrong direction. Bummer.
Life with Ellie
Her first three nights at home Ellie was an angry baby. She screamed from 10pm-6am every night. As if being up all night with a crying baby isn't stressful enough, add in the fact that this crying baby doesn't breathe well and would scream until she turned purple. Even with my mom, Scott, and I all taking shifts, after three nights we were all running on fumes. One of my mom's neighbors who just had her 9th baby recommended we try a cradle swing. We gave it a try and this swing is magical!! Ellie sleeps so well in it and when she is unsettled and fussy at night we just turn on the swing and she settles right down. She now has her days and nights straightened out and it's a shame I have to wake her up every 4 hours to eat or I'm sure she'd be giving me some nice long stretches of sleep.
The hardest part about having Ellie on oxygen and hooked up to monitors is she is on a 10 foot leash. We have turned the living room into Ellie's bedroom with her big oxygen tank and swing set up in the corner. In order to move around with Ellie we have to switch her oxygen over to a portable tank and then load up with 30 pounds of equiptment before becoming mobile. It's inconvenient to say the least. It's very hard to take care of Ellie and my other kids without being able to move around freely with Ellie in my arms. After just a week of this I am feeling very trapped and can't wait for the day when Ellie will be cord and tube free. Not to mention the day I can sleep in a bed again rather than on the couch next to Ellie's swing.
Breathing
Ellie came home from the hospital on 1/16 of oxygen. She is always hooked up to an apnea/heart rate monitor, but it does not tell us when her oxygen saturation is. It has never made sense to me how we can be effectively managing her oxygen without a O2 sat reading. So when our neighbor informed me she had an O2 sat monitor from when her baby was on oxygen and offered to let us use it I was thrilled. We hooked her up and her sats were 87-89. We want them to be in the 90s. So I turned her oxygen up to 1/8L. The next day at her doctor appointment we were planning on monitoring her sats and trying to wean down her oxygen, but the same thing happened and her sats dropped into the 80s when on 1/16. So instead of weaning her oxygen down like we had hoped to this week, we had to turn it up to 1/8. A step in the wrong direction. Bummer.
Life with Ellie
Her first three nights at home Ellie was an angry baby. She screamed from 10pm-6am every night. As if being up all night with a crying baby isn't stressful enough, add in the fact that this crying baby doesn't breathe well and would scream until she turned purple. Even with my mom, Scott, and I all taking shifts, after three nights we were all running on fumes. One of my mom's neighbors who just had her 9th baby recommended we try a cradle swing. We gave it a try and this swing is magical!! Ellie sleeps so well in it and when she is unsettled and fussy at night we just turn on the swing and she settles right down. She now has her days and nights straightened out and it's a shame I have to wake her up every 4 hours to eat or I'm sure she'd be giving me some nice long stretches of sleep.
The hardest part about having Ellie on oxygen and hooked up to monitors is she is on a 10 foot leash. We have turned the living room into Ellie's bedroom with her big oxygen tank and swing set up in the corner. In order to move around with Ellie we have to switch her oxygen over to a portable tank and then load up with 30 pounds of equiptment before becoming mobile. It's inconvenient to say the least. It's very hard to take care of Ellie and my other kids without being able to move around freely with Ellie in my arms. After just a week of this I am feeling very trapped and can't wait for the day when Ellie will be cord and tube free. Not to mention the day I can sleep in a bed again rather than on the couch next to Ellie's swing.
Our goals for this weeks are for Ellie to gain an ounce a day and ideally to wean her oxygen down to 1/16, although I'll be happy as long as we don't have to increase it anymore.
