Sunday, May 30, 2010

Many New Things! And Pictures!

So Skylar was quite the little flirt in the hospital during our last visit a month ago... there was a pulmonologist on call who would come visit us daily and Skylar's face would just light up when he came in the room - he was tall, brown hair, big smile... She would just smile back at him all the time - it was quite hilarious. Anyway, I say this because she hasn't done that ever before or since then, until now. Our good friend Thomas Clay came to visit us this past weekend - he's tall, brown hair, blue eyes, nice smile and all the girls love him... including Skylar! She could not stop smiling at him and this was HUGE because she had been fussy, consistent elevated heart rate, etc. for two days and really made you work for smiles. Kyle and I were lucky to get one a day from her and then all of a sudden, she's just all smiles for Thomas. He officially asked Skylar to be his girlfriend so all you other women out there - just know that Thomas is taken now, lol! Here's a picture of Skylar gazing at Thomas from across the couch :) I didn't get the smile captured, but know that it was adorable! We had a fun week and weekend with friends - old and new. It was great to see everyone!!!

So to catch you up on some things... We finally ordered the waterway baby neck ring so that Skylar could hopefully enjoy her bath time more. Ever since she grew out of her infant tub, our bath options have been extremely limited. Since she can't support her head at all, it's been challenging to figure out a way to keep her above water and still wash her and play with her. The inflatable neck ring was our last hope before I invented something myself... Luckily, it worked! Skylar's neck is a little small for it, so we added a washcloth in front to help with chin support that doesn't cut off her airway, but she seems to be getting used to it. I know it looks like a cast or something, but it's actually quite nice. We've used it twice now and the second time in the tub, she moved her leg by herself (something she hadn't done for at least two months because her thighs have gotten some fat on them and are much heavier now - I think she's about 11.5 lbs now...). We're hoping that as she gets used to it, she'll feel more comfortable moving and may even gain some control back in her legs. We'll see.

We've been watching movies during the day to keep Skylar entertained. Not that I don't love trying to keep her attention, but I think after all day with mommy, she gets a little bored :) So with new additions like Ratatouille and TinkerBell (thank you friends!!!), we're staying entertained! Kyle, however, has still not given into the animated movies... he has watched The Patriot with Skylar (thankfully she fell asleep at the beginning) and has viewed films like Vitus (a foreign film) and Avatar (at least it has bright colors despite the darker parts) with her as well. Don't get me wrong, all great movies, but Skylar's still a little young, lol. I will say he and Skylar watched Robin Hood, the cartoon, because it's his all time favorite, but we're still working on the others, hahaha. Here she is asleep on the couch afterward with a fuzzy head...

We're having a fundraiser June 19th to help raise money to go towards getting a van to transport Skylar and all of her equipment. It would actually be a fun Father's Day activity if you're still looking for something to do... Because of my love of photography, and the amazing talents and generosity of a great photographer named Tessa, ( we're going to do a photo shoot fundraiser. There will be more information on the "Help Fight" page of Skylar's website and an event on facebook is coming, but basically you can pay a mini session fee to get 10-15 pictures of your family or friends and a 5x7 printed picture will be included with the fee. The pictures will be available to order online if you want more or to share with family and friends. All session fees and profit from ordering will go straight back to our family. Also, Tessa has graciously committed to donating a percentage of her profits for the month of June back to us as well so if you can't make it out June 19th and still want pictures, give her a call! She's coming to our house tomorrow to do pictures of our family - I'll put those up soon, but until then, you can have a picture of Skylar with her sweaty head mohawk :)

She's such an amazing little girl and does so well putting up with me!!! Even when I have to suction her, use the cough assist (which is pretty much like the scream extractor in Monsters, Inc.), and other torturous things, she doesn't even shed a tear anymore... She's my little champ. And then of course I do crazy things like give her mohawks :) What a trooper! At least she doesn't have to put up with scratchy lace and uncomfortable clothes... I do the best I can.

We have two check-ups this week - GI and Pulmonology. As I mentioned before, Skylar's heart rate has been a little elevated lately, but no fever or anything yet. Her mucous has been a little cloudy so we're wondering if she's fighting off an infection of some sort of if it's just the teething thing. If you could pray for her body to stay healthy, that would be much appreciated. So far, so good. We bumped up her bi-pap settings too so she's trying to adjust to the higher pressure of air at night which has been a little hard for her. I don't think she slept much at all last night (the first night on her most recent increase in a series of three) but she adjusted well to the previous ones so we're hoping tonight will be a better night. Oh shoot, I forgot to take a picture of the new additions in the nursery, but I'll just add that to my next post if I can remember!

One last thing to mention - I know it's a long post (at least there are pictures :) but a lot of people have asked lately... If you want to make a monetary donation to our family, you can do so through our church (and it can be tax-deductible) by sending it to Trinity Anglican Mission with an extra note that it is going to our family in addition to putting it in the memo line. Check the "help fight" page of Skylar's site for full details. That's all folks... Thanks for reading! I'll be updating again soon with our family pictures and more fundraiser details :) Have a great week!!!

Wednesday, May 19, 2010

Halfway There... 6 Months Old :)

Today is Skylar's 6 month "birthday" so we're halfway to beating the odds of seeing her first year birthday celebration! It was a glorious day, but more on that later. Here's my little angel :) Her brown mullet disappeared a few months ago and this strawberry blond hair is growing fast! We'll see if it changes color... still got those big blue eyes though!

This past weekend was great - Kyle woke up early to meet his mom, Gramma, Aunt Wendy, and cousin Kimberly at the Flying Biscuit (yum!) for breakfast and then they brought me back a bacon, egg & cheese biscuit - so nice to have a good breakfast! They had just arrived in Atlanta and would be visiting for a few days and we were happy to have them. While they were here on Friday, the Manross family came by with the special stroller, battery hook up for the car, an extra suction machine for us, and other misc. supplies. What a HUGE blessing! The stroller is amazing and Skylar loves it! She seems really comfortable in it... I took her outside in it for the first time today - below is a picture...

We have her pretty far reclined and her pulse ox machine fits nicely on the foot rest... the canopy is detachable and the suction machine hangs on the back handle. We're still working on getting it all set up with the portable power supply and other machines, but this is a great start and a huge help.

Anyway, we had fun with family and friends and had a great start to the weekend. The rest of the weekend was spent with family over meals and movies and it was really nice. Kyle and I have decided to split up church services so that we don't have to take Skylar out (even though I am sure she enjoys seeing people and other people enjoy seeing her, it's just a pain and kind of risky without the van and power supplies). Kyle went to the first service with his family and then came back while I went to the second service. We had lunch with everyone after I got home and enjoyed the company.

Kyle's family went to Ikea and bought us a really nice shelf unit for the nursery to help us organize her machines and medical supplies (picture coming soon). Our chiropractor came over today and even noticed that it looked much more put together, lol. A friend of mine from high school came over today as well and brought lunch so we could catch up with each other (we hadn't seen each other in over a year!) and she got to meet Skylar. Again, we're so humbled and thankful for people's generosity and thoughtfulness. We've gotten some stuff in the mail from people we haven't even met in addition to gifts from friends and it just means so much words can not express. We're continually blown away by the movement of God's hands and feet through this time.

Skylar's been pretty fussy lately - I am pretty sure the tooth pains are hitting her. Last week, I thought I might have broken a rib or she might have a bad lung infection because she would cry every time right before her oxygen dropped or when I would move her. We took her to get a chest x-ray (which I think I mentioned last post) and all was good minus a little inflammation. She's been sticking her tongue out more and sucking on her bottom lip, which I think is her compensating from not being able to suck her thumb or chew on something. Skylar was actually able to get her right first finger close to her mouth though and she's almost able to chew on it... She's a cutie, even when she's fussy. She'll give a few smiles out here and there still, but you have to work for them!

As I have been watching more and more Disney/Pixar films with Skylar, I am amazed how many of them have such great messages. Kung Fu Panda has a line spoken by the wise old turtle, "Yesterday is history, tomorrow is a mystery, but today is a gift... that is why it is called the present." I think it is a great reminder to live every day one day at a time because none of us are guaranteed tomorrow. We've watched Cars, Finding Nemo, Monsters Inc., and a few others too :) She really enjoys them and usually watches the entire thing if she's not tired. I need to get Ratatouille, Over the Hedge, and some other more recent movies so I don't have all of the ones we have memorized in the next month or so. She's kind of past the Baby Einstein stage, but we still watch some of them occasionally.

Kyle and I just watched Evan Almighty recently through our netflix and it was pretty hilarious. It was also a good reminder on trusting God, knowing God doesn't always answer our prayers the way we want Him to, and knowing that God's plan ultimately is the best even if you can't understand it at the time.

I kind of feel like I am stuck just waiting right now. There is a lot of progress being made with SMA research, some testing has succeeded in mice trials and is now being tested on primates, but it could take a year or two for the FDA to approve clinical trials. I don't know that we have the time for that. Also, if there is a "cure" I am wondering if it will even work fully for Skylar since she has scar tissue already in her limbs and the effects and damage may not be reversible. What if we give her the "cure" and it doesn't work? Or it only works partly? Anyway, I am just waiting on God and not worrying about tomorrow, because it is a mystery and I could go nuts thinking about all the "what ifs" and such. A friend of mine passed on some song lyrics to me and although I am not crazy about the actual tune, I really loved the lyrics:

I'm waiting
I'm waiting on You, Lord
And I am hopeful
I'm waiting on You, Lord
Though it is painful
But patiently, I will wait

I will move ahead, bold and confident
Taking every step in obedience
While I'm waiting
I will serve You
While I'm waiting
I will worship
While I'm waiting
I will not faint
I'll be running the race
Even while I wait

I'm waiting
I'm waiting on You, Lord
And I am peaceful
I'm waiting on You, Lord
Though it's not easy
But faithfully, I will wait
Yes, I will wait

Thanks for reading - hope you enjoyed the new pictures :) Peace to you.

Thursday, May 13, 2010

A whirlwind of a week...

As we continue to be blessed by the amazing people in our lives, we remain busy...

Friday was frantic - I woke up to a barf dog. I saw him eating grass before so I knew it was coming. It was our first day out of the house since our trip to the hospital two weeks prior. We were on our way to the GI doctor - I was actually packed up and ready to go with Skylar on time! In the car, all of her equipment in tow, taking a bowl of water to Reese (who I put in our neighbor's fenced in backyard) only to find that he had escaped through a hole in the back fence... Crap! I do not have time for this... Luckily, I knew where he typically wanders off to and found him in record time! Back in the house he goes. We were still able to make it to the office building on time. I was in the process of unloading all of her equipment and realized there was no way I was going to be able to carry it all by myself because none of it fit under the stroller (which I should have tested instead of assuming I could at least fit the suction machine under there...) I somehow managed to get everything out of the car and in a manageable position and then I put Skylar in the jogging stroller (since it reclines pretty far back). As soon as I moved her to the stroller, the alarm sounded and there went her oxygen level... I spent about 20 minutes out in the parking garage where it was hot and sticky trying to get Skylar stabilized with just the suction machine. I flagged down a young guy to help me carry her stuff in and find an outlet to use her cough assist (something I couldn't use out in the garage). I sat in the lobby and called the GI office to let them know what was going on and they sent someone down to help me get to their office. Leaving the office was the same story. I dropped the cough assist from waist high onto the asphalt and heard a crack. S*#@! That thing is so heavy - I hope I didn't break it. I swore I would never go out by myself again - especially without a portable power supply and a stroller that would hold more stuff. A van would be nice too. I swung by home, said hello to a friend that had dropped by and since Skylar was in the car already, we decided to try to get to the chiropractor. I should've just called it a day. More dropping her O2 levels in the parking lot, more frantic running around trying to get all of her machines to an outlet and getting her stabilized. Thankfully, the cough assist still worked though it looks banged up some on the side (oops). I got home and got a much needed hug from my husband after a long and stressful day.

Saturday was his turn. I woke up to a pretty arrangement of flowers with a note from Skylar :) Kyle babysat while I went out, spent some gift cards we've had forever, ran some errands, and just experienced freedom. Seriously, that word was flashing in my head the entire day. An amazing sense of freedom. The sun was shining, there was a cool breeze, and I was able to drive without worrying if my daughter's oxygen was going to drop and I was going to have to cut people off to get to the side of the road and suction her out. It was amazing. It was my first real day "off duty" by myself. Kyle did well (I only got one or two phone calls) and he fell asleep as soon as his head hit the pillow. I am pretty sure he now understands why I am so exhausted even though I "don't do anything all day" and I want to go sleep as soon as Skylar's out for the night. He did great though and I was happy he got some extended one on one time with her. Skylar gave him a nice present too because I came home to a bare crib that had been stripped down and I heard the washer going... Apparently Daddy got a big smelly diaper that was a little runny and leaked in the crib, hahaha :)

Sunday we had an interesting sermon about the miracle healing of a man who was paralyzed for 38 years or so and seemed somewhat undeserving... (if you want to listen to it you can go to and check it out) it made me think about our situation and my last blog post and how no one can really predict a miracle and there's no rhyme or reason to why people get them and others don't. Anyway, it was my mom's birthday as well as Mother's day so we ended up spending most of the day with family cooking out and enjoying our backyard after church. Kyle and I were tired (combined with stress makes us a little grumpy) so as soon as everyone left around 4 or 5, Skylar slept hard, Kyle napped in the hammock on the porch, and I crashed in the bed. We woke up at 9pm, lol, and I made some phone calls to other family for Mother's Day, had a late dinner, and then got a few things done before going back to sleep. So really my Mother's Day was Saturday...

This week has been hectic as well. We had the phone consult and physical evaluation by Babies Can't Wait - a federally funded state program to help babies with disabilities get help in the home. Basically, a physical therapist will be coming to our house to help do some exercises with Skylar (not sure how often) but any little bit will help. We just have to make sure we get on their schedule first thing so they are not bringing a bunch of germs into our home.

We also had a home visit from our pediatrician last night. Skylar has been crying the past two days which is pretty serious for her. She only cries when she has a super heavy diaper or if something is hurting her... so I have been concerned I accidentally broke one of her ribs or she has pneumonia or something like that because she would only cry right before her oxygen dropped or when I moved her chest area. We went to get a chest x-ray this morning and there was some inflammation, but no pneumonia or broken bones which was awesome! The pediatrician said he thinks that the routine we're on is good and it seems that we are managing whatever she's dealing with pretty well. If it gets worse, we'll start her on antibiotics or something, but hopefully it will clear up on its own. Until then, Skylar's little pitiful cries break my heart!!!

He was impressed and shocked we didn't have home help and said that most people would've crumbled by now... Praise God for unexplainable strength, peace, and amazing people in our lives who support us. He's going to work on trying to get insurance to cover a respiratory therapist to come help me, even if just for a few hours a day. YAY! Hopefully that will work out so I can have some time to spend with Reese - our poor neglected whiny dog who just wants to play and run around all day. I'm looking forward to getting some help so I can have time to eat (and not inhale my food any chance I get in between Skylar's routine) or just do "normal" things.

Other updates: we applied for life insurance for Skylar right before she was diagnosed and finally got denied... I think they've been spending the past 4 months trying to figure out what was wrong with her - it was a long shot, but oh well. I'm in the process of trying to get medicaid for Skylar and also apply to a few other programs to get some help financially. We're starting to feel the stress with money, medical bills that have drained our savings, my car repairs, the property we own that we were hoping to build on but don't see how that's possible anymore, etc... I'll be meeting with a girl next week to finalize the fundraiser details for June and will post those soon if anyone feels led to help us out in that way (please don't feel obligated)! Random thought: Can you believe in another week Skylar will be 6 months old?! As always, thanks for reading :)

Friday, May 7, 2010

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.

Tuesday, May 4, 2010

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.

Saturday, May 1, 2010

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!