2 days post op

We are home! I can't believe how well Ruby did after surgery. She stayed off of oxygen and went right to sleeping on her tummy again. I was shocked. We even got back to bolus feeds in the hospital, which I wasn't planning on, so that has Been an even better transition. 

As soon as we put her in her own bed, she immediately relaxed as if an, "I'm home!" Was going to come out of her mouth.

We decided not to do the nissen fundoplication or the wrap around her tube to prevent her from spitting up. When things are going well, she doesn't spit up that much and I didn't feel comfortable doing it "just in case". The GI surgeon said we could always go back in a few weeks if we need to add it, but she has done such a great job, with such few spit ups, I am hopeful we won't need it.

It's so great to see her sweet little face without tubes being taped to her cheeks! As hard as this surgery was for me, I can already see the positive side of things.

Gtube day

I just turned over my sweet little sleeping babe to the nurse for her gtube surgery. This was the hardest surgery yet for me. All the others have been easier because I knew she needed it to progress and develop. This time, I feel like I don't HAVE  to do it. I know we need to clear her throat out and let her cleft heal, but because we are electing to have a hole cut into her stomach, it's tearing me apart. 

The downward slope

After finally seeing a pulmonologist and getting her involved, we detected that Ruby's 24 hour cough was from the NJ tube irritating her throat. We use a 5 French NG tube, but an NJ tube only comes in an 8 and it was just too big for her little airways. I feel so bad that it took a week to figure that out!! Since that has been changed, she has weened off of her oxygen also. She's congested still, but doesn't lose oxygen while coughing anymore.

The pulmonologist wants us to have her sleep (prone) on her tummy, and said while they say not to, it is actually safer for some babies. Ruby loves it and it prevents her from coughing and/or choking while congested. I can't believe what a difference it makes.

She still isn't great at moving her head from side to side yet, but just being on her tummy for naps has made it a bit stronger. 

I can't wait to get home now and be in a routine, even if it is a difficult one, and make my own dinner and get the kids off to school, and exercise, and sleep in a bed...it looks like tomorrow afternoon at the latest, unless there is some sort of slip up! 

12 days...and counting...

Still here at the hospital. Last week was ROUGH to say the least. If I had been told ahead of time what it would have been like, I don't think I could have done it.  Ruby coughed AROUND the clock. A horrible and uncomfortable cough that was constant while she was awake and enough to wake her if she wasn't deep in sleep. Nights were even more rough. Nurses would walk in and say,"that sounds horrible, is she always like this?" "No! Silly. That's why we are here!" Except, I didn't so much use the word silly then. Ruby's been in an antibiotic, so between the coughing attacks she blew out 2 outfits a night.  I spent most of each night holding her, falling asleep while she coughed in my arms :/. She also had to be put on oxygen later in the week.

I have been asking all week to see a pulmonologist and an ENT. The peds dr.'s kept telling me they will call them when they are out of ideas. I felt stuck and as if they were trying to keep her from seeing the specialists I wanted. We were at a new hospital (we were at Cardon's in the NICU...so all of her history is there) so while our ENT has rights to treat her at PCH (but he's on vacation), our pulmonologist is an employee of the other hospital, so he can't treat her at PCH. So, we were requesting a random pulmonologist that doesn't know Ruby. Either way...we need to get one involved. This little babe has seen specialists for all of her little life, why now, when she is doing terrible, do we not involve any specialists?? 

I felt like we were in a tough spot. I don't want to be "that mom" that is a nightmare, but at the same time, we have been here 12 days and she is gotten significantly worse. Something needs to change, and somehow we need to figure out how to work together to get to that result.

Finally, on Friday they called the pulmonologist here and she had them put her in a 5 day steroid to open up her airways. She came by yesterday while Nate was here and he said I will love her. She did a great job of explaining things really well.

Last night was the first good night in a long time. She slept the entire night, didn't cough and all morning while awake was super content. She has had a great nap and woke up bright eyed without crying...until her last respiratory treatment. They started a nebulizer breathing treatment with her easy pap breathing treatment yesterday. They have been fine until this last one. Now she has been coughing for an hour and drifts to sleep and wakes herself up coughing. This is just what happened last week. :(  

I don't understand how this treatment time, it made her cough, but the past few didn't. So bizarre. The hard thing was that I had such a great morning, thinking we were all going uphill, and we'd get out soon! Seriously, is that what I get for being hopeful? I pray it doesn't keep happening and nothing brings that wretched cough back. If I could only just throw it out the window. 

I am really grateful for the nurses here. Some are really, really great and you know they really care. It is sweet to see some of them speak to Ruby so sweetly. You can definitely tell which ones love their job, and we have had some great ones.

I am hopeful we'll get out this week sometime. It's crazy how your perspective changes and instead of talking in the time frame of each day, the vocabulary changes to each week. I am just ready to get my happy Rubylicious home and have our family all together again.