*swallow study and PPD*

With all that has been going on lately in our home I completely forgot to update on Delilahs swallow study. Last Thursday we took her up to Primary Childrens Hospital, which I have to admit that I am BEYOND sick of making the drive up there. We couldn't let her have anything to eat or drink 2 hrs before the study but her feeding schedule worked out great around that! When we arrived they had me sit her in a bucket seat with a "seat belt" that was taller than I was. This was so she could be at the height of the xray machine (fluoroscope). They mixed some barium with simply thick to a nectar consistency (which is what we have to thicken to right now) and she swallowed it just fine with no problems. They had me bring my bottles and nipples this time which really helped. We watched on the screen as she swallowed the barium and all seemed well. They then gave her Gerber brand pears mixed with barium and she did great once again.

**on a side note I was hesitant for them to give her the Gerber pears as the Gerber baby food is sweetened with lactose which Delilah has an intolerance to. I haven't given her any of the Gerber foods for about 3 months now but I thought, well I guess its worth trying again. BIG MISTAKE! Sure she ate it up (she is a Snell! lol) but later when we got home she was fussy and in pain from her stomach not handling the milk proteins well. We had a horrible night and I know now that I will continue to make my own baby food and we have sworn off Gerber!**

Ok back to the story :) After she did great with the nectar consistency and stage 2 baby food they gave her straight barium not thickened with anything. Right away you could see the barium pool in the back of her throat and attempt to enter her trachea. Numerous times the speech therapist said "penetration, penetration" meaning that it was penetrating her trachea and she was aspirating but the dr snapped back that she was wrong and it wasn't penetrating. Scott and I both were there and saw it pool and saw some go down her trachea so I was VERY confused as to why the dr didn't see it. After the straight barium we got her cleaned up and the speech therapist told us she handled the "thins" fine as well as the thickened foods so we did not need to thicken her Neocate due to any swallowing abnormality but we should talk to our GI about still thickening for her reflux.

We left and both decided the dr was crazy and we were going to thicken anyway as it went down much better this way. Her GI called me a few days later and left me a message saying she did aspirate and we needed to schedule her endoscope (EGD) so he could see if there were any structural abnormalities with her stomach or intestines. He then called back 5 min later and left another message saying there was an addendum to the report and she didn't aspirate but he wanted to still do the EGD. I swear all these drs are a bit on the loopy side! After a lot of thought and researching it further we have decided to not go further with the EGD and any other invasive testing. We still have her sleep study this Friday but I believe this will be the end of her testing. I have decided I am sick of my child being a test subject constantly and the drs doing numerous tests that they later say were "unnecessary" or "unreliable". Delilah is doing well on the 40mg Zegerid (20mg twice a day) and she has not set off her cardiac/apnea alarm in a few weeks. She is also much happier throughout the day and does not require that I constantly hold her.

The first 7 months of her life have been such a roller coster ride full of extreme ups and downs. We have seen so many doctors, had too many tests to count, tried a handful of medications and with all of that the doctors still cannot tell me what is causing her to stop breathing at night. As long as her reflux is controlled, she is comfortable, happy and improving I am OK with not knowing 100% what the problem is. This is huge for me! I strive to know things, I am very impatient and not great with surprises. My life is on a schedule where I know when and what to expect and that's how I am the happiest. For them to not allow me to determine her exact problem has been very hard for me. But for the sake of Delilah and my sanity I will "go with it" and just see how things turn out. I'm even having horrible anxiety admitting this!!! I love my little girl more than the world itself and its very hard to talk about this but I am finally feeling like I can enjoy her and we have bonded so much in just the past few weeks.

When she was born I instantly loved her, that has only intensified but my ability to help her or be with the crying/screaming all day tested my nerves. I didn't know how to help her. I didn't know what I was doing wrong. I didn't know why she cried with me and not others. I honestly felt I was going crazy. This is when my PPD kicked in. This is not something that is commonly spoken about as no mom wants to EVER admit they couldn't deal with their child or felt as though they needed a "break" from them. I did feel this way and it continued to worsen. When Scott got home from work I was done. I needed to be by myself. Its only now, that I am more at peace with things and know I have done every possible thing to help her that I can hold her and gaze into her eyes and just be happy. When she was younger I tried so hard to be that mom who wanted to hold their baby all the time but I wasn't. She was unhappy and so was I. I know Scott tried to understand it but there was no way he possibly could. I was put on medication for my PPD and have been working very hard to not let those negative thoughts run my life. I am sharing this now because I know its not my fault and i want other moms to know they are not alone. Even the best moms can have PPD. The key is to get over that hurdle in your life. This is what I am doing now.

Delilahs smile melts my heart and when she looks at me with those big beautiful eyes I feel like she can see right through me. When I'm having a bad day so is she and when I'm happy she follows suit. I can now say that I truly enjoy being with her everyday and I could not imagine my life any other way. Following her birth I was adamant that we were not going to have another child but I feel as though maybe in a year or so I will be in a place where I can love and be there for another child. I know this blog went drastically from one subject to another but sometimes you just need to get things out. I feel like sharing things helps you move past them. I want to thank everyone for their continued support. Without all your shoulders to cry on I wouldn't be the mom I am today.