Count your blessings....

The last few weeks have been really rough for me. I have been feeling very overwhelmed and frustrated with everything going on with Hallie and how much care she needs. I feel like my life is consumed with Hallie. I can't tell you the last time I read a book and which for those of you that know me, know how big that is for me. I only watch tv if I'm folding laundry or some other multi-tasking. I am having a hard time keeping my house presentable, let alone clean and germ free for Miss Hallie.

Tucker failed his hearing test, so I am worried about him and whether his not speaking at all right now is an indication that his speech will be delayed. We will test him again in 2 months, and then 2 months after that before making a determination of whether he will require speech therapy. So it is a little ways off, but it is something else to add to my load. He has hit this phase where he is as cute as can be until he doesn't get what he wants and then he turns into this gremlin that I don't recognize or really like. And he has had a cold for the last week with a constantly runny nose that I get to wipe all of the time. He also wants to be held. I love holding him, but I don't get much accomplished that way. Just one more thing to deal with.

And then Carson has hit this phase where he is Mr. Dramatic. He throws these temper tantrums over the littlest thing. You ask him to do his homework and he starts wailing and gnashing and throwing this tantrum that would rival a 2 year old. You would think asking him to shower was tantamount to asking him to cut off a finger. Honestly, it is a huge relief to send him out the door to school each day and I am not necessarily looking forward to him coming back in the door. What has been a somewhat manageable day turns quickly into a nightmare as he is causing Hallie and Tucker to scream and he won't listen to me either. I have to ask him at least 8-10 times to do something, before I finally lose it and force him to do it. It is just a ton of drama at the moment. Plus he started football a few weeks ago, so 3x a week I get to drive him to football. Next week they move to a park closer to us, which will be nice. I mistakenly thought that since Derrick is coaching him, I could let him take Carson and have an hour or so more in my day. Silly me. Carson asked me after the first practice why I wasn't there. I told him it was just practice and I would come to the games. He informed me that he was the only one there without a parent (not hardly). I asked him why his daddy didn't count. Didn't I know that his dad is not there for him? He needs someone to watch him specifically. So I get to take Hallie and Tucker and sit on the sidelines and chase Tucker around in the cold for an hour on Mondays, Wednesdays, and Fridays.

Derrick has been working a lot lately. In order to cut costs, they are no longer pulling in labor for the smaller shows, so all of the salaried people are working more and more. I keep telling myself that at least we still have a job, but it means that he is working at least 1 weekend day, and sometimes both. I hate taking my kids to church by myself. I feel like it's a losing battle and I am not getting a single thing out of it. Then to top it off, Derrick got sent to New Orleans for 10 days. They asked everybody in the office to use their connections throughout the company and see if they needed help on any of the big shows. Basically, this means that the office they are helping out will pay their salary and expenses. It takes them off of the Reno office's books for that time. I understand the reasoning, but when I am already feeling overwhelmed, it just adds insult to injury. Derrick will get back on the 9th and then probably home for about 2 weeks and then to Vegas for 10 more days or so. That means I will not be getting much help from that direction.

And Hallie, Hallie, Hallie-- the cause of most of my stress. 4 days a week our bed time routine consists of mixing her formula, putting it in the feeding bag, programming and priming the pump, mixing her laxative and probiotic in water, hooking her to her tubing, injecting the laxative, probiotic, and now nectar concentrate into it, unhooking that, cleaning around her button, which is very tender at the moment for whatever reason, hooking her up to her pump, cleaning my hands intensely, taking a rubbing alchol wipe to the end of her central line, flushing the line with saline and then heparin in order to keep it from clotting off, wiping down her entire bathroom with a clorox wipe, singing her Here Comes Santa Claus (year round) and finally tucking her in bed. The other 3 nights instead of doing the whole formula bit, I get to sterlize everything in the bathroom, take the TPN and vitamins from the refrigerator, clean the port, clean the vials of vitamins, take a syringe with a needle, insert into the first vial, draw back and pull out, then inject contents of vial 1 into TPN bag, throw the syringe into the sharps container, pull out new syringe, repeat process with vial 2. Then I get to tear off the divider between her tpn and lipids and mix everything together. After everything is mixed, I get to pull off the plug on the bag, insert tubing, place siphon on end of tubing, attach tubing to pump, prime the tubing, making sure the filter is completely filled and there is no air left, cleaning end with alcohol wipe, cleaning her central line hub, flushing with saline (which makes her gag to the point of retching so I have to give her a sucker in order to avoid getting puked on) and attaching the tubing to the central line. It is a very long process.

She can't bathe, so we had to get creative. Every other night she gets wiped down with a wash cloth. On the other days, I have to tape up her central line, cover with saran wrap and tape down, put her in the bathtub with a few inches of water and let her lay on a baby bath sling. This allows her head to hang over the edge of it, then I get to stand in the water with her and wash her quickly, then wash her hair and get her out, all without letting the line get wet.

We are at the doctor all of the time. I started out this week thinking that I only had 1 appointment this week and none next week, so it was a good time for Derrick to be gone. I took Hallie to her GI doc on Tuesday. She did gain weight, which is great, but is still having very abnormal bowel movments. He started her on the nectar concentrate (I had to go to 5 stores to find it) and wants to see her back in a week. He also wanted me to take her to the surgeon so that he could remove the stitch in her central because it was very red and irritated around the insertion site and he was worried it was going to get infected. So I got to take her Wednesday to the surgeon. I made arrangements for someone to watch Tucker, since we would be exposing her central line and I didn't need his help and germs to be around it. We got there and luckily, I had thought ahead and brought a dressing change kit and a new dressing because they weren't prepared and were just going to slap a tegaderm on it until I got her home. And they weren't going to clean it either-- major problem. For whatever reason, as I was leaning over the table holding her down, I started to get nauseated and then hot and clammy. About the time they finally finished, I had to sit down because I thought I was going to pass out. I have never done that before! I have seen her through so much worse, so I am not sure what happened. It was very bizarre. Anyways, tomorrow the nurse is coming to do a blood draw, they will deliver her new batch of TPN on Monday and Tuesday we are back to the GI doc. If her g-tube doesn't stop being so sensitive, I am going to have to take her into the pediatrician as well.

Once a week, I have to change the central line dressing, which takes about half an hour and has to be done completely sterile. I can't have the dog or Tucker around and I need an extra set of hands in order to keep her hands away from the insertion site. Once a month I have to change her g-tube, which is a pretty fast process, but the minute you take it out, it is like a volcano with all of her stomach contents, so the clean up is not fun.

It just has gotten to be a lot and it would be different if it was only going on for a month or two, but she has been a ton of work since January and it is starting to take a toll. I worry about how this is affecting Carson. I don't want him to resent Hallie for taking up so much of my time. I don't want him to feel like I am not a good mom to him. I am starting to feel resentful of Derrick for getting to go to work and coach football and all of the other normal things he gets to do and I don't. And then I get mad at myself for feeling that way. It has just been very difficult the last little while. I find myself welling up in tears frequently and the other night when I had to change Hallie's g-tube, she started crying and so I started crying. I hate having to be the one to do all of this mean stuff to her. I hate forcing her to endure yet another uncomfortable procedure. I am short with the kids and with Derrick and it has just gotten a little out of control.

So, I started praying for help. I know that no one can take away what I have to deal with, but I needed a better perspective on things to get through it all. It started to change when I was walking through Kohl's a few weeks ago, looking for a fall dress for Hallie (why are dresses so hard to come by right now?). I was walking by their home decor section and saw a tile with the saying on it "when we put our cares in His Hands, He puts His peace in our hearts". It stopped me in my tracks. It really struck a chord in my heart and I had to have that tile. What an incredible reminder of what we need to do in order to get through this life. I picked it up to see how much it was and realized it was a 2 pack. The other tile reads " Peace on the outside comes from knowing God on the inside". Wow. It made me think-- am I doing everything I need to in order to be close to the Lord? How many times have I made the decision that doing those dishes was more important than reading my scriptures. How many times when I am discouraged and frustrated, have I forgotten to pray and turn it over to the Lord. And what a bonus-- the tiles were on sale for 50% off! So, one is now in my kitchen and one in my hall. And everytime I see them, I am reminded that the Lord does care.

The next thing that helped was when I was digging through my closet trying to find something. I found a cross stitch that I started before Carson was born and didn't finish until just before Hallie was born. It is a 11 x 14 picture of Christ holding a little child. I have never had it framed, so I decided to make it a priority. I finally found a frame for it and Derrick hung it above Hallie's bed. In a weird way, the child kind of looks like Hallie. Everytime I walk into her room, I feel this peace descending on me. I know the Lord is watching over Hallie. Whatever path she continues on, He is aware of her and her needs and when I can't be with her in the surgery room, He sends someone to watch over her for me. I have had far too many experiences to believe otherwise.

As I was getting overwhelmed with Derrick leaving, we found a cheap air fare from Salt Lake to Reno. My sister has been wanting to come out to visit for awhile, but with her soccer schedule, it makes it very difficult to find a time. It just happens to be UEA in Utah where the kids get 2 days off of school and soccer is limited. What a perfect time for her to come out. She is flying in Saturday morning and will be here until Monday. It is a short trip, but it breaks up the time that Derrick is gone. I only have to get through 3 days before she is here, and then 4 days after by myself.

I was already starting to feel more peaceful and confident that I could handle whatever was required of me when I read my friend's blog. She and her husband are trying to decide whether to adopt and she was writing about how she felt the Lord had prepared her to get to this point. She can look back at specific instances in her life and say that subconciously, she knew that she was going to have the opportunity to the adopt, even from as old as 5 or 6. She has children of her own, but cannot have anymore and is now moving forward with adopting. It really made me think and put together some thoughts that I have been having for the last month or two. I have been prepared to take care of Hallie. I have been looking back at my life and choices that I have made or jobs that I have had that have prepared me to care for her. For those that know my family, we have a weird medical back ground-- from my mom having a tumor when I was in the 3rd grade that had hair and teeth, to my sister being conceived with only half of the working parts needed, to my dad having a rare disease that caused him to just drop to the ground in the middle of no where and requiring brain surgery to fix, I have been exposed to a lot of different medical conditions growing up and have almost come to accept them as the norm. When Hallie was born, while I was prepared for all of her problems, I wasn't shocked to learn about her 5 spleens or any other thing. I took an anatomy class in high school. There really wasn't a reason for it, it was just sounded like a better option than the alternative. I took an anatomy class in college, complete with cadavers. I didn't love it, it didn't help towards my major, I'm really not sure why I did it, but that information has become invaluable to me in trying to figure Hallie out. I have had so many comments from doctors or nurses about how well I know Hallie's body and how much I understand it. I have been told that is part of the reason that she is still here, that I have such a good understanding of her that I can really help guide her doctors in figuring out what is wrong with her. I did medical billing for 2 years, while I was pregnant with Carson and from home after he was born. I understand insurance companies and how they work and how to get them to pay claims that they don't want to. My life would be so much more stressful if I had to muddle through all of that and not have the background that I have. The Lord has truly prepared me in my life to be the best possible mom and deal with whatever we may have to face. He is not asking me to do this by myself. He has given me the tools necessary to get through this and will make me strong enough to face whatever may come. My friend's blog really helped take all of these random thoughts in my head and make them gel together. Thanks Rachel! I really needed that right now.

I have talked to the pedicatrician and she is helping set up a home care nurse that will come in twice a week-- once during the day so that I can go help in Carson's class and once at night so that Derrick and I can actually go out or so that when Derrick is working, I can actually do funny things like go to a PTA meeting or visiting teaching without Hallie. They are getting us a handicap parking pass. It's not much in terms of relieving stress, but it will make things more convenient at the store, especially with the holiday rush coming up. I have spoken with the pharmacist and we are switching up her TPN schedule. Instead of Monday, Wednesday, Friday, which coincides with Carson's football, making those evenings a nightmare, we are switching it to Sunday, Tuesday, and Thursday. We finally got her trust fund papers finalized, which is a big relief and now just need to get her tax id # (way more difficult than it should be) and then we can start approaching bigger corperations to see if they can donate and help out with some of her medical expenses. Right now, we are paying about $2,000 a month out of pocket in just her nutrition and doctor visits. That doesn't include any of her bills for her hospitalizations or surgery. That in and of itself is like this heavy rock sitting on my chest. We have raised about $6,000 so far, but that has gone very quickly. We are starting a new fundraiser next week selling candles. I have 15 people around the country that are going to be selling them for me so that I don't have to try and do it all myself. We have a salon that is going to be staying open on a Saturday and donating 100% of the money to Hallie. We have several other things in the works, and we are hoping that we will soon have more money flowing in to help with that stressor.

The final thing that really made a difference was at the GI doc on Tuesday. We were sitting in the waiting room when we saw a mom walk in with a baby that had a trach tube. In comparison, we are dealing with nothing. In Utah, we are around kids that are really sick a lot more when she is at the children's hospital. It helps us keep perspective. When we are in Reno, you don't see that many chronically ill children, so it is easy to keep sight of the fact that it could be worse.

In all, I have taken an inventory of my blessings and am extremely grateful for the many people that the Lord has put in our lives in order to help us through this. I am grateful for every small step Hallie takes towards being well. In a funny way, she is making up for everything by all of a sudden being on this helpful kick. She folds my towels for me-- and nicely. Carson folds them in a heap and I have to refold them. Hallie folds them neatly, and even though it is not the way I do it, I can actually put them away that way. She started making her own bed and cleaning her room ( a constant battle with Carson who still claims he doesn't know how to make his bed), although she told my mom that you just shove it all in the closet, so be careful when approaching her closet-- it might explode! The other day, she even made my bed. I was cleaning her closet and went to check on her, only to find her in my room, making my bed. What a surprise! The Lord blesses you so much, regardless of the trials He puts in your life. He is mindful of each and every one of us and if we just pause for a moment, we will be able to see the many blessing in our lives.