Struggles, Blessings, and Motherhood - A short novel :)

Wow. I don't know where to begin...

I guess I'll start with Skylar since that is what most of you care most about and are interested in reading about - after all, this blog is dedicated to her and keeping you updated with her life :) with my occasional ramblings of inner thoughts!

Skylar is doing fairly well - no more scary drops out of no where and no more blood - YAY! I think mainly because I have been suctioning her much more frequently and catching it as soon as I can so I don't have to go down her nose if at all possible. If I hear her try to swallow, I suction. If she coughs, I suction. If she gives me a crinkle brow and squirmy face, I suction... then check her diaper, lol. Usually her oxygen levels will stay in the upper 90s during the day and if they drop to the mid or lower 90s, I suction and do some form of breathing treatment until I get a big chunk of mucous out to prevent any major drops later. So far so good. Our chiropractor has been really fabulous (we haven't been since before our hospital visit) and he actually came out to our house today because he was concerned for Skylar and wanted to make sure she was okay. We haven't been out of the house since I left the in-laws because traveling is such a hassle, not to mention I am by myself and it's extremely overwhelming if she drops while I am driving or with lugging all of the equipment, car bed, and other such things that make it more difficult than "normal." To think I thought a diaper bag was difficult the first month we had her... ha! I promise I'll try to post pictures soon of her equipment and nursery now so you can have a better idea of the things I talk about.

Anyway, I am hoping a van and her special stroller will be much better and make us more mobile. I feel like her machines have us tied to the house right now, but honestly I am okay with that because it's less chance of her catching the latest virus or bacterial infection. Thankfully people are still bringing us dinner every Tuesday, Thursday and Sunday so I get some interaction with the outside world. I really look forward to dinner days and meeting new people or seeing old friends! With that said, if you're in the area and healthy, feel free to call me and swing by :) We are usually up for visitors. Tonight, we really had a great time with some friends from church - they brought their little girl who was born just a week before Skylar and I think they became friends... that is, until Skylar got scared by her squeals... it was cute. A lot of people write me messages or call me and tell me how blown away they are by my strength and faith. I definitely have to give God all of the glory there and also admit how blown away I am by peoples generosity and thoughtfulness. The family tonight was a great example - they brought us flowers, a toy for Skylar, and a wonderful Mother's Day card for me, a donation for our family, in addition to dinner. It's such a gift to see God working through others and to see how Skylar has mobilized the hands and feet of Christ. It truly brightened up our day and the flowers are a beautiful addition to our living room. I am not sure what kind they are, but they just make me think of peace and comfort. I will smile every time I look at them.

Okay, back to the stroller speaking of amazing generosity. I spoke with Ashley Manross tonight and their family wants to give us their little boy's Jazz EasyS stroller that has the van tie downs and a few accessories (usually retails around $3,000) and I almost cried. We feel so extremely blessed by the Manross family and I hate the fact that it's because they no longer have their little boy to use the stuff that they're giving us. What an incredible family... talk about strength. And since I mentioned strength, the Miller family (another SMA family we've met that I've mentioned before) comes to mind. They also gave us some really helpful contact information this week and are working on getting us some back-up equipment in case one of our machines fails since insurance won't cover multiples. We'll be needing to purchase a generator too in case the power goes out because only the feeding pump and suction machine run on battery... Crazy things you would never think of right?! Both families have been extremely helpful with giving us information, supplies, equipment, an ear to listen and good advice going forward. They've helped us think of things we would've never come up with on our own. At least we have plenty of oxygen for whatever situation, lol.

So on a more serious note, thinking about Mother's Day has been really hard. I know it's coming, I know it's going to be emotional, and I know I will treasure that day forever (hopefully). I keep praying to God for a miracle, but then I think, why me? Why Skylar? We don't deserve it any more than anyone else. I hope He finds favor on our family and chooses to heal her, but my eyes have truly been opened to the suffering of this world. I mean, in college, through mission trips to other countries, I have seen orphans, struggling families, and other heart breaking situations (and I really do have compassion for them), but you don't really know something until you experience it. I now know what it is like to truly suffer and have been given a glimpse of how huge a sacrifice Jesus' death was... When Skylar was first diagnosed, I felt like my heart was torn out and shredded to a million pieces and then put back together just enough to keep beating. My heart still aches every day. I know there are thousands and thousands of other SMA children and families suffering out there. I know there are other completely horrific diseases taking the lives of thousands and thousands each day. There are so many people suffering, He can't heal them all - that's what Heaven is for. I know the financial burden and emotional burden strains families to the point of bankruptcy or divorce, which is something we fight against on a daily basis. So why us? Why should we get the miracle? We already have received one miracle in the Jones family... (for those of you who don't know, my husband was struck by lightening when he was 10 years old on mother's day and wasn't expected to live) So is that it? I have been struggling to remind myself that there is no trick or ritual or deed that can get me that miracle. I keep thinking, "If only I could pray the right things... say the right words... touch her the right way... believe more... have more trust/faith..." the list goes on... that maybe then, Skylar would be healed. Of course I know deep down that is a lie, but my mind still goes there. I know that it is up to God. I plead, I cry, and I pray that God would choose Skylar to be healed. I also know so many other families who have done the same - and some have lost multiple children to SMA... where was their miracle? I wish I understood. I hope someday God will give us the insight into why things happen the way they do.

I know God gave me the perfect daughter. At first, I felt like I got robbed - how come I have such a short time with her?! Doesn't God know that I have all of the love in the world to give and a whole lifetime to give it?! I felt like a bratty little kid, "It's not fair!" but I also know that life is not fair and try to be positive no matter what the circumstances are. Believe it or not, it could be worse! So on the bright side, she can't resist me and squirm when I want to hug her and love her and cuddle with her. Skylar doesn't cry hardly anymore, and even when she did, it was so soft and cute that it never got on my nerves. She never spit up, screamed, threw a fit, or anything like that. She'll just lay there in her crib, content with looking around until I come and play with her or sit with her laying on my lap in the rocking chair. She's so alert and smart. She loves animated films (we watched Cars and Ice Age together this week and she loved it - Finding Nemo is next - after all, she is my little nemo)! She puts up with all of the crap that I am forced to do to her in order to keep her here - like deep suctioning, the torturous cough assist, whacking her back to knock the mucous loose, and stuff like that. Skylar tolerates things amazingly well for a little baby. She made it through surgery like a champ and brings smiles to all of the nurses and doctors in the hospital. She brings joy to those who meet her and I feel so blessed to be her mother. I am so honored that God chose me to raise her. She's so perfect that I know she'll make a great little angel. Oh how I long for her to wrap her little arms around my neck, for her to say the word "mommy" and hear her sweet little voice, for her to sit up and look around, to share a five guys burger with her or a chick-fil-a sandwich (two items she's quite familiar with since she was growing in my belly :) I would love to play with her in the pool, take her out to the park and let her run around with other kids, and the list goes on. I had a good cry tonight thinking about it all. It almost broke my heart earlier when Kyle got home and came into the nursery when I had Skylar laying on my lap... he reached out and grabbed her little hand and said, "I'm gonna miss you Skylar" and just looked into her bright eyes for a couple minutes. Of course, my eyes filled with tears. It was so sweet yet so sad. I stared into her bright eyes too and just admired her beauty and the amazing little girl God has given us. I really hope I get to see her grow up.

It's been a challenge to be completely selfless. "Daily I struggle to die to myself so that I might truly live!" struck me when I first read it on a friend's blog and it still does today. I can definitely see how easy it is for families fall apart during tough times. We are both working our butts off to make this work and it's easy to feel unappreciated and become bitter. I was reminded this week through another friend's monthly update "Blessed are the poor in spirit. If you set out to live the teachings of Jesus, you have already failed dramatically; you will surely not be able to. But if you agree with God that you are not able to do this, you might stumble into the beginning of everything that is possible..." Thank God.

Well, this is turning into a novel (it was supposed to be a short update, hahaha) and the sleeves on my t-shirt are still kind of damp because I didn't have any tissues around so I am going to get ready for bed. I am already 4 hours late getting to sleep and actually have to look somewhat presentable tomorrow going to the GI-doctor for Skylar's check up. Fresh air! Oh yeah - if you've made it this far and feel led to pray for us, one minor thing to add to the list is that Skylar's g-tube peg has irritated and broken down the skin right around it. We're treating it and padding it to prevent further infection, but it still looks uncomfortable for now. It's not like she needs another thing to deal with, ya know? Or me for that matter, lol. It's hard enough getting her feeds, treatments, diapers, therapy, massage, baths and other stuff taken care of, let alone wound care. As always, thanks for reading. Peace to you.

Rest and Peace

So we had a good full day of rest and made it through dinner Saturday when the alarm went off again. This time, it dropped fast and wasn't coming back up... It went into the 70s, and I got it back up to 80, but it was holding steady. I was fishing around her mouth and top of her throat with the catheter and couldn't get anything so I went into her nose. All of a sudden, light red blood came out with her mucous and I freaked. I mean, I held it together until I got her back up into the 90s, but was emotionally, physically, and spiritually exhausted. How much more of this am I going to have to endure? Why can't Skylar be a healthy little girl?! I called the pulmonologist on her cell phone to make sure the blood wasn't a really bad sign and that we were okay staying at home. She said that the nurses typically are aggressive and probably irritated the membranes and I probably just scraped the already sensitive tissue and it should be fine. A sigh of relief, but my chest still hurt. In the same way that I hold my breath during really intense parts of a movie, I am pretty sure I hold my breath until I can get Skylar back up into the 90s...

Anyway, once she was on bi-pap that night, she did much better. We did her breathing treatments early the next morning and kept her on bi-pap a little longer than usual just to make sure she got a nice break and some good rest. Kyle returned Sunday afternoon and we went back home - Kyle driving, Reese on my lap in the front, Skylar laying down across the back seat and all of her equipment in tow. We are out-growing the blazer fast, hahaha! It was quite a site. She only dropped slightly on the way home (around 88-89) and a little suction held her over until we got home and could plug up the machines. Since then, I've been suctioning at least every hour (some hours it's every 5 - 10 minutes) during the day and that has prevented any further drops into the 70s... we still get an occasional drop into the 80s, but I can handle that. I have learned that her little contorted face is either from pooping or working up a mucous plug to her throat. I have also learned that 94 or below on the pulse ox means there is some mucous somewhere and I have to get it out. If I don't, it will just keep growing and cause a bigger drop when it moves back in front of her airway.

I've been doing some baby massage with her to prevent her muscles from turning to scar tissue, she still wears her splints at night to help her wrists, feet, and ankles, she tolerates her breathing treatments and chest therapy, and we somehow manage to have time to play a little bit during the day on top of her feeding routine. Being hooked up to the pulse ox constantly is a little restricting, but we're still figuring everything out - what works and what doesn't.

On a side note - if anything ever happens in Atlanta where there is a shortage of oxygen, everyone should come to our house! I think we have enough O2 to keep a small village alive!!! We have 7 smaller travel tanks, a concentrator, and a large O2 tank for home backup in case the power went out and the concentrator didn't work. It's pretty ridiculous. Skylar doesn't even use oxygen on a regular basis - it is just for emergency use only and I thought we would be ok with just the one small travel tank... Kyle and I joked around that we would start an Oxygen bar in our backyard by the garden to offset some of the medical bills, ha!

We're doing well though and have had some good family time this week. Kyle and I prayed at Skylar's crib-side last night together, shared a few tears, and are continuing to take things one day at a time, even though it's hard not to think of the future and what might happen. Thank you for the prayers and support. Peace.

25 going on 60...

So yesterday started with a phone call from our wonderful neighbors saying that they saw our dog just cruising around the neighborhood and picked him up and have him in their fenced in back yard... Either Kyle let him out unknowingly when he was packing the car, forgot to lock the back door and the wind blew it open (not too likely but it has happened before) or our house had been broken into and the door was left open... Lucky for us, our house was fine and Reese is just a sneaky little thing - he does this somewhat frequently and drives us crazy because he just loves to run around! Thank God for good neighbors - I would've freaked if Reese wasn't home when I got home knowing Kyle had been gone all day. Anyway, I just knew that the day was not going to be an easy one.

So checking out of the hospital, Skylar had been doing well all day and I kinda felt like she was hiding some mucous from us... My mother-in-law helped me load up all of her equipment we got from the hospital and then we went home to get Reese and pack up the rest of her stuff. We got to our home, put the pulse ox on her, and she was doing alright. I put her in the crib while I was unloading some stuff and my mother-in-law was playing with her. I left the door open so I could hear the alarm - that awful sound that I am so thankful for. Sure enough, it starts beeping and it wasn't stopping so I ran into the house and started suctioning. I hadn't unloaded all of her equipment so I was a little nervous. Luckily, after some pounding, suctioning, and the cough assist, we were able to get her back up...

Since Kyle is out of town this weekend, we're staying at the in-laws. Once I had everything packed up in the car, including the dog, we headed north and prayed for traffic to be moving. My mother-in-law left a little before me so she could give me updates if there was a block and I was able to go another route. We joked around that she was like a pace car and I was more like an ambulance driver... I get so nervous transporting her in the car until we are able to travel with all of her machines. Even then, when it's just me and her, if her pulse ox goes off, I have to safely pull off to the side of the road and take care of her - just a little nerve racking. It was kind of bizarre, but at 5:30 going north on 85, we were moving the whole time!!! I was in the HOV lane - not sure if a baby counts as a second person, but I had a dog too and felt like I could argue my way out of a ticket if I got pulled over, lol. Skylar slept most of the way and we arrived safely in record time for rush hour traffic. I was unloading the car and as I was carrying her in, her pulse ox went off again, but this time it dropped fast. Welcome home! It was a nice way to greet grandpa (not!). So the alarm is going off, I stop in the garage and squat down to suction her out, pound her chest (at this point most everything is still in the car or not plugged in yet in the house) and was slightly nervous that I wouldn't have what I needed... luckily she came back up enough to move her inside and start hooking things up. She seemed to recover fine and I continued to set up her equipment. I knew another drop was coming...

We were past due for a breathing treatment and wanted to make sure I had the cough assist plugged in first. As I was setting up her little corner, that dreadful alarm sounded again. She dropped fast this time (which I kind of expected since I couldn't get a whole lot out the time before and really needed to do a breathing treatment with her). By this point, grandma and I are exhausted from her other two drops and go through the routine again. This time, I had more of what I needed within arms reach. It took a lot longer to get her back up since her oxygen dropped in the low 70s, but we did it and got a huge mucous plug out. I figured that was what had been moving around causing the previous drops but we just couldn't get it out before. Grandma and I needed a drink...

I always joke with people that I am 25 going on 60 (or 80 depending on the day, lol) with all of the stress I am under right now, but by the grace of God, I have somehow managed to adapt and press on learning as much as I possibly can to make Skylar's life the best it can be while it lasts. These damn mucous plugs are going to do me in though - hopefully they won't be what does Skylar in. Thankfully I learned how to deep suction with catheters while in the hospital and that has made it a lot easier. Grandma made a rule that Skylar's not allowed to drop her O2 levels like that again while at grandma and grandpas house, lol. So yesterday was a rough evening, but luckily, once we got the plug out, it was smooth sailing and she had a good night sleep.

Today has been pretty good - just recovering still (mostly me) from yesterday... It's a lot more work when you don't have nurses around to help you with the feeds, taking care of her g-tube (the skin is slightly irritated around the port), doing her breathing treatments, etc. I'll try to take a picture of her nursery once we get home and everything set up because now we have an oxygen tank in addition to some more machines and it's becoming quite a sight. Once we get the power supply from the Manross family for the car, I will feel more confident driving with her (the only thing that has a car adapter is the suction machine) and our next step is to get a van...

Once Skylar grows our of the car bed we are using now (which will be in the next few months probably), we will have to get a special stroller for her (a couple thousand dollars which insurance will hopefully cover) that can tie down in a van. A van will also be a better transport for her equipment - the cough assist, oxygen tank, suction machine, bi-pap, and other smaller things take up quite a bit of room and are not easily accessible in my 2 door Blazer! With that said, we're going to have a fundraiser in June for that purpose. More details to come on that later though - just thought I would let everyone know it is coming :)

Hope you have a great rest of the weekend - I know we're happy to be resting today!