Then they toasted and looked like this
This was the ending result
I got some of the CUTEST pictures of my kids! I LOVE these 4 angels. They mean everything to me.My favorite shot is the one I got of Payzlee trying to lick the mellows off her cheek!!!
Blake went in on Fri to have a gastric emptying scan done. They inserted formula and dye into his gtube to see how quickly it moves through in digestion. at least once a month, Blake stops being able to tolerate 90% of his day feeds and 100% of his night feeds. He throws up for a week straight and has no energy and is super cranky and testy. He is up most of the night throwing up and crying. It breaks my heart. We haven't gotten the results of this test. We will in the next few days though and I will update then. After they inserted the mixture into Blake's gtube, they took an xray of his belly and then every 15 min for an hour they took a picture of his belly again. Blake did AMAZING. He was so good and so calm and HAPPY! Here are some pictures of him during the scans.
The picture is random but I thought I'd break up this post a bit with some pictures as it is hard for me to write and could be hard to read.
So we went back at 6:00 ish and got Payzlee prepped and ready. She was cranky and tired. They took vitals and we got her in her gown. I talked to all of the drs, several nurses, and the anesthesiologist. I signed my life away about a million times and fought off the tears harder than I ever have before. Surgery on your kid is so hard to do. Surgery without your husband there is even harder. I didn't want to be alone. I wanted to have Shaun sitting there holding my hand. But because of various reasons with his job and boss, that just wasn't an option. A text is just not the same as the words said while sitting next to me holding my hand.
Because Payzlee aspirates and does not have healthy lungs, we are at risk every time we put her under; a greater risk than a kid without medical issues going under. They explained all of this to me the day before and the day of surgery. I knew the risks and I didn't want to sign those papers but I knew I had to. When the anesthesiologist came in right before surgery, she asked me if I understood the risks. She talked to me about her being at a greater risk for bad things happening. I understood. She told me that she was at an even greater risk because she had been sick. The only thing is, with her continually getting sick, no time would be a better time. We needed to figure out why she is aspirating now. I knew the risks. I had heard them multiple times. But something about hearing how she could have to be in the ICU intubated and have a machine breathe for her, about 10 min before they took her back to surgery, it hit me like a ton of bricks in my gut. It literally took the breath away from me and I pretty much held my breath until the anesthesiologist left the room. I remember it being so hard to take a full breath for hours after I heard those words.
It was now time for Payzlee to go back to surgery. As long as it is an option, I will always go back with my sweet babies, place them on the operating table, hold their hand, stroke their hair, and kiss them as they fall asleep. Always. I will also always remember the fear in their eyes and the look on their face as they sob in fear. But it is worth that tiny bad moment in case anything ever happens to them; just to say I was the last person they saw!
When I left the operating room, I was taken to a special room off the waiting room. I was told I could get something to eat but had to go back to that room to wait; they needed me there during surgery. It was only me in a room with a couch, a table, and some chairs. It wasn't very big but it felt huge. I went through the motions of eating a small thing for breakfast but I could feel the panic rising and I felt like throwing up. I still couldn't take a full breath of air. I prayed. I didn't know what else to do so I prayed. That's all I could do. My mom really believes those from beyond the veil were there sitting by me but I couldn't feel them. I felt all alone. Finally after an hour or so, part of the team came and talked to me. They told me Payzlee's lungs are still swollen and inflamed but there wasn't infection which is GREAT news. We have to give her an inhaler every day to help with that. She is still aspirating even though we don't give her fluid by mouth anymore. She could be aspirating on her spit though we aren't 100% sure. I know it happens because I see her choke on her spit sometimes and you can tell she has just aspirated. The ENT came in about 20 min later. Tubes were placed fine and he was glad they did them because she had a lot of scar tissue in her ears. Now for the hard part. They found NOTHING wrong with her anatomy. Our next step is to do a brain MRI. A brain MRI will tell us if there is anything wrong inside her head to be causing this. It can be a couple of different things like Chiari Malformation and a few I don't remember. But the doctor told me that for some reason which they don't fully understand, aspirating and neurological issues can go hand in hand and can be quite common. In 2 weeks Payzlee will go under (yes it has to be sedated) for a brain MRI. I feel frustrated. Either we have no idea why she aspirates and will never know why, OR something is wrong in her brain. This just seems SO UNFAIR to me. This beautiful little baby may have something wrong in her brain. Yep it's a lot to take and let sink in. At times like these, I am often reminded by the spirit that it's going to be ok but also to remember that these cute little spirits of ours are on loan to us. They have a mission on this Earth and they will fulfill it in the amount of time it takes to complete that. I am on loan to my family as well. We never know how long any of us will be on this Earth. We can't remember what all our mission entails but I do know how hard each of us fought to come here to this Earth. I am so very grateful for the chance to be Tayla, Mylee, Blake, and Payzlee's mom. Because of our struggles and the simple reminders I get, I try to live each life to it's fullest. I try to rediscover things with my kids and I try to say sorry often. I try to say I love you every chance I can and hug them often. Although the thought of having Payzlees diagnosis be something in her brain terrifies me beyond measure, I am trying to focus on her and the here and now. It will all be ok. I have been holding on tightly to one of my favorite quotes lately.....COME WHAT MAY AND LOVE IT.
The kids thought this was SO FUN. Blake especially. He didn't understand that he needed to spread peanut butter around the whole entire pine cone. He thought he could put a huge huge glob of peanut butter in one spot and call it good!!!
He LOVED rolling it into the seeds too. That was his FAVORITE part!
Here's some pictures of the girls and Blake working on their feeders and then holding the done product up
So then, because I am supposed to document with pictures, this whole thing, I thought I should let Payzlee have at it. I was scared, not gonna lie, peanut butter and bird seed. I could see the catastrophe in my head. So I snapped a few pictures super fast in between helping her. (Shaun conveniently got called out as we sat down to do this)So I help her spread the peanut butter.
Then I helped her roll it in the bird seed. She wanted to play in it.
And then it happened. As tried to get Payzlee to show me her feeder by holding it up. She looked at it, like SERIOUSLY looked at. And then as I snapped a few pictures she took a bite of it. Not just a kid bite but THE BIGGEST bite I have ever seen her take with anything ever. All I could do was laugh and snap pictures. I thought for sure she would spit it out since there was seeds on it but to my surprise she looked at me, chewed, and swallowed. She did it a second time too as I stood there amazed at what had just happened.
Here's a few more of all the kids!
Back in January, Payzlee had a swallow study done. She had to swallow barium in different forms of liquids and foods and also with various consistencies. Even with the thickest thickener, Payzlee was aspirating, meaning she was swallowing ALL liquids and thin solids into her lungs. Because of this we were admitted to the hospital for an emergency NG Tube placement (nasal gastric tube or feeding tube) Payzlee is not allowed to have liquids by mouth or thin solids like ice cream, apple sauce ect. She has a Gtube (gastric feeding tube) in her belly now. You can see it in the picture above. She has all of her liquids by feeding tube.
We met with the ENT about a month ago and he told me what they plan to do. On March 25th we have a swallow study for Payzlee, exactly like the one that showed she couldn't have liquids, except this one is with ALL solid food. We believe she is aspirating on ALL FOODS not just thin solids and liquids. If this is the case, Payzlee will no longer be able to have any food or drink by mouth. April 2nd we go in to have an upper gi done. Basically it is a barium drink that she will drink and they will photograph her anatomy; everything the barium touches. mouth, throat, esophagus, lungs, stomach, and intestines. They are looking to see if she has malformations, abnormalities, if things are too small, too big, something obstructing, and a number of other things. On April 8th we will go in for clinic the day before surgery. We will meet with 5 or 6 drs (I forget) and it will be a MINIMUM of 4 hours long for this lovely appointment. They will go over EVERYTHING that will happen the next day. From what I know, (I will be able to fill in more details after the 8th) they will be putting Payzlee under and the ENT is going to check out her anatomy. He especially wants to look at her vocal cords. They will have her under a lighter sedation so that they can make her cough. When she coughs, they will be able to see her vocal cords. There should be a dam by your vocal cords that keeps fluids from going into your lungs. They want to know if it's intact and formed right or if it is more of a cup, not there, or is malformed in any way. He will also look at anything he sees on the upper gi. If he sees something that could be causing her issues he will look with the camera at that particular spot to see what it may be and if it can or should be fixed. After he is done, a pulmonologist will go in, put fluids into her lungs (I know freaking scary right? I gasp every time I think about it) and then he will suck the fluids back out. He is checking the health of her lungs. Because she had been aspirating for so long, her lungs more than likely are not in the best shape. The fact that she hasn't had infections in her lungs show that on the outside everything appears to be fine with her lungs, however, she could have bacteria growing in them or infection in them. By injecting fluid and then pulling it back out, the dr is hoping to see exactly how well her lungs are doing. Aspirating the amount of fluids Payzlee has been, makes her more susceptible to lung issues like pneumonia and bronchitis so we have to steer clear of people when colds come around. After that dr is done, her GI will step in and do another scope on her. Because she is still having GI issues this is important to do. He will be taking tissue samples from her throat, esophagus, stomach, and intestine I believe. They will be able to tell if there is inflammation or EoE like what Blake has. They told me this is an in and out procedure normally, but they told me to plan on packing a hospital bag. They said that if the ENT does find something, he may fix it and if that is the case we will stay. But also if her oxygen drops at all they will keep her overnight. This is a scary thing for us. PLEASE keep us in your prayers. Shaun will not be able to get off work to go to this surgery with me. I have an AMAZING friend who is helping me with the kids that day but Shaun does not have any sick days and vacation days don't kick in until after this surgery so I will be going alone. Anyone who knows me well knows I don't do surgeries very well. Blake has stopped breathing while under before so I don't handle surgery let alone being without my husband during a surgery. I will keep everyone updated and let everyone know what else I find out on the 8th.
Now for a few more pics of our Beasty!!! She's so cute when she sleeps!!!!
Shaun and I have the most perfect family. Our wedding song is Keeper of the Stars by Tracy Byrd and it says in it, "I hold everything, when I hold you in my arms. And I've got all I'll ever need, thanks to the keeper of the stars." It doesn't matter which member of my family I hold but when I hold them, I know all is right, and all WILL BE right, and I truly have everything in the world right there in my arms.
