Deep breath

Today is just one of those days... you know "those" days!

Started last night by Jilli saying we needed to check her pulse ox. Typically if Jilli asks for her pulse ox checked she is feeling winded and she is typically right that it is low. Well we had not used the pulse ox in a couple of weeks because she has been doing alright so we turned on the pulse ox, it started up fine, and then would say "error 1" and turn off. We tried all the typical trouble shooting things and then turned to trusty google to find out that there was nothing we could do to fix that error, infact that error is rather bad and this thing is dead. It was bed time and Jilli holds her oxygen levels at a fine place during the night so we put her to bed and I checked on her multiple times during the night (Lydia provided many wake-up calls for me during the night). This morning I woke up and called VNA to get it replaced. A couple hours someone called and asked what our last name was again and then said that someone from respiratory would call me. A couple hours later someone else called and said we are too far away for respiratory to bring us one so a service person will be out sometime today... its now after 2:30 and have not seen anyone. Jilli seams to be fine today and for us have a working pulse ox 24/7 is not needed because we just do spot checks as needed but for some kids it is and this process is taking most of the day to get a new one and it makes me worry for those families that do need round the clock pulse ox monitoring.

After I made my first call to VNA I put dinner in the crock pot.  It was a couple of hours into cooking and then we lost power for an hour (thankfully the crock pot stayed warm enough). This was an annoyance of the fact that I was putting my lunch in the microwave when the power went, but I am thankful that it was only an hour. We have an emergency plan for what to do with the girl's stuff when we loose power (first thing was to switch Jilli to an oxygen tank) but I prefer when we don't have to use it. I'm also thankful that the house didn't get too warm in that time given the outside temp today.

The nurse called to give me all the instructions for the girl's surgery on Friday. We have to be checked in at surgery at 7am so I am thankful that it looks like everything is set for us to stay at Ronald McDonald house. They called on Saturday to let us know they got our referral. They will call again on Thursday morning to let us know for sure if we have a room. Being able to head to Ronald McDonald house is really helping my mind with this all because it makes it less stressful for Friday morning.

Honestly, this week is hard. Knowing in a few days I am handing both of my babies over and sending them into surgery is ripping me up emotionally. Lack of sleep probably is not helping right now. I know I'm cranky right now and I feel bad that I feel like I am snapping at people. I don't cry often but the other night I was working on organizing the girls clothes (Lydia is out of newborn and into 0-3mo clothes and size 1 diapers and Jilli is out of most of her 18mo clothes and is wearing 24mo/2T) and I came across a 6mo sleeper someone had given Lydia as a sweet gift after she was born. It was zip-up. Zip-up sleepers don't work great with tummy tubes because you have to cut a hole in them for the tube to come out the bottom where snap ones you just run it between two of the snaps. I had remembered this gift and couldn't remember what size it was so I pulled it out and realized its a 6mo and too big (I was going to have her wear it this week before surgery) and I cried. This little sleeper was my tipping point. For some reason it made everything feel so real and a reminder that my baby is having surgery this week and her stomach will never look the same. While this was hard for me I also know how much we NEED to do this. That this is the best thing for her. We need to be able to drain her stomach. We need to help her with the chocking and hopefully this will do that... but it is still hard to agree to let them cut your baby. I know in the terms of surgery this one is rather small, but still weighing on me. Also, Jillian's PEG surgery did not go as planned and the first one ended with her not getting a tube and us having to come back later and send her back into the OR so there is a part of me that is worried about that too. We also don't know for sure if she is getting a G or Gj PEG and honestly I don't know when we will know that.

And then we have Jilli's surgery which is also stressing my heart. The scope part is no big deal, she has had lots of those and will continue to, the part that is unknown is the stuff they are doing with the pyloric muscle. They are looking for this webbing and if they find it they then they are going to put botox in it. The botox part makes me a tiny bit nervous but what makes me really nervous is they said if they do put the botox in then we are going to have to see if it works by doing 10ml stomach feeds... this is where my heart is very worried. See the botox could help with the slow gastric emptying however it will not fix the reflux or the aspirating so stomach feeds make me really nervous because it doesn't take much for her to get pneumonia. If I thought this would "fix" everything I would be running full force for it, however the likelihood of it even helping is small. Really, I;m kind of just praying she does not have the webbing at all. Botox has to be re-done frequently (its just like botox anywhere else) and this webbing thing is just starting to be researched and botox for it is still not proven and even if she does have the webbing that does not change anything else so I'm nervous about them putting something into her stomach with the reflux and the aspirating issues still there.

I am excited that tomorrow I am going to my firsts  MOPs meeting with the girls!

So if you interact with me this week and I am kind of short please accept my apologies now.  I don't want to be short, and I'm trying hard not to be, I'm just stressed.

Brent is healing nicely. Like the doctor said, day 4-5 where the hardest. He is sore but he says he had throat infections that were worse. He can already feel how much better other parts of his body are doing now that they are not fighting the infection in his throat.