"Hospital, oh hospital, I hate you, you stink. I wish I could wash you away in the sink." -Jack Prelutzsky*

*The word hospital was changed from the original word homework.

August 26-September 1, 2013

When being admitted last week, we were told that we would probably be released Monday. But with all of her vomiting over the weekend, she lost weight instead of gaining it and they were wanting to send in an occupation therapist and a geneticist. 

Thankfully Grammy was at home with Caleb so Allen could go back to work Monday. Since he works downtown, he rode the train over to have lunch with me in the hospital room. I liked having him visit.

They gave Leila a stuffed Memorial Hermann giraffe, that's almost as big as she is.

Leila and I get woken up every couple of hours at night to force Nutramigen down her tube, check her vitals (completely unnecessary for her since she isn't sick--I eventually got a couple of nurses who let us avoid vitals during the night), 4 am heel prick for a test they had done the day before, and I also had to pump because she wasn't eating and I wanted to be able to nurse so she wouldn't be dependent on the tube-feeds. That, in combination with LifeFlight helicopters coming and going throughout the night and general hospital noise from other patients and the hall, we weren't very well-rested, which added to my frustration.

Grammy bought Caleb some underwear, with the idea to do some potty training while she was here with him. That didn't really happen but he likes the underwear.

On Tuesday or Wednesday Caleb, Allen and my mom came to visit at the same time. My mom packed a picnic for us to take to the park while she stayed with Leila. Leaving the 8th or 9th floor of the hospital (or whatever floor it was... the floor directly below the LifeFlight helicopter landing pad) for the first time in a few days lifted my spirits. It was fun to be outside playing with Caleb.

They had a movie night and bingo night on our hospital floor. Caleb mostly just liked to stick the bingo marker things in his mouth, but we played until he won some toy cars.

The geneticist asked a bunch of questions and then told us they would test for Spinal Muscular Atrophy (my friend's son had just died from this at about 8 months old), Prader-Willi Syndrome, Cystic Fibrosis and then a general genetic screening test. The disorders they told me they were testing for weren't particularly comforting, but I knew something was not normal with Leila and was eager to find out what was wrong so we could know what to do to help her.

The OT was unsuccessful at all of her attempts to get Leila to take a bottle or baby food and recommended we get help after leaving.

When you don't expect to be admitted to the hospital, you don't bring anything with you (ie clothes). And then when your baby vomits all over the few changes of clothes your husband brought you within the first 24 hours of admittance, there isn't much variety in the clothes you have to wear... which is why I'm wearing the same clothes in all of these pictures.

Grammy and Caleb were such troopers: driving all the way downtown to so I could play with Caleb for a couple of hours.

I sure missed being with this cutie all day! When he and Grammy would come, he and I would go play in the play room and run laps around a "track" in the open area. When the nurses saw him, it helped them be nicer to me too. There seems to be a stigma against mothers of babies who fail to thrive... they assume you're just not feeding your child or taking care of them and are negligent. After they saw him and he'd do his cute, shy wave and smile, they were much nicer to Leila and I.

On Thursday morning, they told me we were finally going to be discharged! I got excited and packed up, only to realize that it was still going to be several more hours... it was a joke. It took soo long to be discharged because we couldn't leave until we had blood work done, but they couldn't get insurance approval to do the blood work done because they had submitted discharge papers.

Eventually the genetics clinic stepped in and we were able to be released and walk over to the genetics office to get the blood work done. It was way better to go there because Leila is so hard to draw blood from. While in the hospital the nurses couldn't ever get a good blood draw. They would eventually just prick her heel and attempt to squeeze out enough blood that way. The phlebotomist at the genetics office was amazing and it wasn't a traumatic experience.

Getting ready to go home. The nurses had me practice taping her tube in place to make sure I'd be able to do it at home. Thanks to Athletic Training, I was a taping pro and the nurse was impressed. 

Thursday afternoon, after almost a full week in the hospital, Leila and I got to come home! She still has to be tube-fed, in addition to breastfeeding. We have a nurse who is supposed to come to the house weekly. We have prescriptions/referrals for OT, PT and ST that we need to schedule appointments for. And we are supposed to follow-up with our pediatrician as well. For now, we'll just enjoy being home!

They really love playing together! We do have to remind Caleb not to pull on her tube.

Leila acts uncomfortable every time we tube feed her because they're giving her so much! She still likes to breastfeed, even if she doesn't nurse for very long. I still am pumping to keep up my milk supply though and our freezing is getting stocked up!

Leila pulls her tube out almost every day, which is good because it gave the rashes on her cheeks (from the tape) a little bit of a chance to heal. But it means that I have to shove the tube back down her nose and throat while holding her down on the bed, which I hate.

I got to enjoy a couple of days at home with my mom before she left. We went to the park, went swimming, built forts and just played.

He loves to look upside down on the swing.

Jumping in to Dad!