Ellie

I haven't been to a computer in almost a week, so I have a lot to update on. This may be the best way to get a little information out for those who are wondering how we're doing.

Just for a little background info--I went on bedrest August 19, when I was 33 weeks along, after a spell of preterm labor/contractions. I had a few other episodes in the following weeks, but we were able to get it stopped with no more than an overnight stay and some not-so-fun meds. Last Tuesday night they started again and when none of the usual medication did the trick, I was admitted and told I'd have a c-section the following day. Burlington hospital usually doesn't deliver before the 37 week mark, but I was within two days, so they decided to do it there rather than send me on to Topeka.

At 7:04 pm on Wednesday, September 15, Elliot Lynne Hoag was born! She was breathing fast and unable to really cry or cough, so they made the decision to transport her to the NICU at Stormont Vail in Topeka. Drew and his mom went on to Topeka to be with Ellie, while I stayed in Burlington in recovery. I was discharged Thursday morning and went on up to be with them.

She was on a machine Wednesday night that forced the air into her lungs at certain intervals, teaching her to regulate her breathing. They were able to decrease the amount of added oxygen a little at a time until she was doing room air only, then took her off that machine completely on Friday afternoon. Her breathing was still a little fast and irregular, but she did well enough to stay off oxygen. She was able to take her first feeding on Friday. She ate 8 ml (30 ml=1oz) by tube every 3 hours until Saturday, when they started increasing it slowly. We also got to hold her for the first time on Friday evening. Her stats dropped after a few minutes, so we had to put her back in the bubble (incubator), but those few minutes were the best!

Saturday morning we were told that depending on her stats, we could try feeding her by bottle when she was doing well. We each got to hold her through a bottle feeding, but she has mostly been fed through the tube. Her respritory rate has been way too fast to risk trying to bottle feed her much. Drew's dad brought Harley up to meet her, which was so wonderful for me. I was happy to have my whole family together for a few minutes. I'm not sure how much he understood about what was going on, but he was happy to hold her hand, touch her hair, and kiss the incubator. She had a rough weekend, having to work way too hard on her breathing and trying to keep her blood oxygen level up. She had a lot of trouble with her IV, so it has been moved around a lot.

Sunday morning when we got back to the hospital she had had a bad bili test and was under a light to help her jaundice. Her IV had also moved to the center of her forehead, which is the worst spot ever! She had a restless day under the light, and had to take tube feedings all day and night.

This morning we arrived to good news. Her bili test was a little better, so today will be the last day under the light. Her feedings had been increasing all weekend, and as of her noon feeding she is at 2 oz. She is still taking them by tube the majority of the time. Drew got to hold her and give her the first half of her 9 am feeding by bottle this morning, before pushing the rest through the tube. I was able to give her a sponge bath, which was the most I've been able to really handle her so far. Since she has reached the amount of food necessary to give her the calories she needs, she is being taken off her IV today! We were told that if everything goes well she can move to a crib-bed tomorrow. Then we'll be able to put her in her own clothes and hold her more. She still has to improve her breathing quite a bit before we bottle feed her more or take her home, but for us it is a very good day!

We are SO lucky to have been able to stay with Brent, Allie, and Brent here in Topeka. They have made us feel so at home. It makes being away from home and away from Harley a little less difficult. After such a quick discharge from my surgery, I've been really sore and a little slow getting around, and I've had all the help I need around here. We've had a real bed, non-cafeteria meals, and even laundry service. Allie is very sneaky, doing our laundry while we are gone so we can't protest. Drew thinks we're one step away from having a mint on our pillow at night, but I've warned Allie she is doing too much!! We are thankful though. We have also had a lot of visitors, which makes our long days go a little faster. We love showing Ellie off, so it has been nice. I don't know what we'd do without such a great support system...Harley is blessed to have so many people wanting to take care of him and us through this. I know how lucky we are to only be here a short time, and it makes me realize how difficult it must be to have a long-term NICU baby. I have a new respect for those parents!!

I will update as we have more to tell, but we are going to get some lunch and head back to the hospital!