Friday, April 30, 2010

Bustin' Outta This Joint!

Well today was a super productive day- we got little splints for Skylar (which she just has to wear while sleeping to help straighten her feet and wrists out and looks adorable :) and I learned how to give her massages, work out scar tissue, and other fun stuff. I met with a case worker who is going to help us try to get some extra help at home and financial aid. I also collected business cards of everyone I've been in touch with and might even miss this place just because it's been such a good experience. It's been a long day however, so I am going to cut this short and go to bed. We'll be checking out Friday early afternoon hopefully and going home with lots of goodies... and by goodies I mean an oxygen tank, bi-pap, ambu-bag, and those types of things, lol. Thanks for checking in on us! Have a great weekend - I know we will :) Yay for a nice comfy bed!!!

Wednesday, April 28, 2010

An eventful day!

Today was a fabulous day full of God sends! We only had one episode (Kyle doesn't like me using that word, but I struggle to find another word to describe Skylar's drop in oxygen levels) where Skylar was in the 70s today, but we got the mucous out and she's been great. Her lung x-rays looked much better than when we were first admitted on Monday and we were able to talk to the nutritionist who said Skylar's diet looked good for now - yay!

So this morning, Ashley came to visit and brought me breakfast and a fun basket of snacks! We were able to chat for a while and it was great to see her again. If you can remember to pray for their family, please do so as their 4 year old little girl is still working through losing her little brother just a few months ago... Anyway, they've been such an encouragement and great support for us so far. After she left, I met some of the staff in the tech clinic that we will be working with from here on out to get equipment, deal with sick visits for Skylar, etc.

I have also been working to start a Families of SMA chapter here in GA because there isn't one and there is a huge need for one! Atlanta has Children's Healthcare and is a huge city that people travel to from all over the south east. It's silly not to have a chapter here. FSMA was so great in sending us a care package when we were first diagnosed with toys that Skylar could actually play with and other helpful information. They've given us a car bed on loan for as long as we need it and have been wonderful in their support to us. I would like to make sure that any families that come after us have a place to go to in GA to seek help and advice because I didn't have a clue which doctor to turn to... Luckily, I had awesome recommendations from my pediatrician and other specialists and ended up with a good team of doctors working with us. All that to say, two women - a head nurse here in the TICU and a case manager in the tech clinic were willing to help me out and are actually trying to hold a clinic here in the hospital to educate a lot of nurses and doctors about SMA. They asked me if I would be willing to speak at the event and I said I would love to if it meant helping people understand what SMA means. I think that might happen in August and they might be getting a lot of helpful info from FSMA as well as working with the Hope and Light Foundation...

In the afternoon, two clowns came in with a guitar and played songs and sang for little miss Skylar and she was all smiles, but wasn't sure about the big red noses, lol. After they left, the chaplain came in to meet us and just kind of see how we were doing. As well as can be expected :) Then my mom brought me lunch and as I was taking care of some stuff online (working on re-designing the SMA Space networking site and editing a few pictures) a physical therapist came in to evaluate Skylar.

Let me preface this by saying I put out a call last month to the moms at my church to see if anyone had extra breast milk they had pumped to donate for Skylar since I could no longer pump. I also asked my doula to ask clients of hers that were healthy, not on meds, no STDs, etc. who could donate as well since it would be better for Skylar to be getting some antibodies (even if they weren't mine) instead of no antibodies at all. I think that has helped her fight off infections so far and just offers her unique nutrition as well. Anyway, I got a great response and have been so thankful for the women who have been able and willing to donate. My mom actually went and picked some up for a girl named Sarah who lives in Chamblee for me since I can't travel much. Well today, our physical therapist comes in and my mom says, "hey, I know you" and she smiles and says hi and introduces herself to me as Sarah, the mom in Chamblee. How crazy is that?!?! I thought that was just super awesome that we could meet, I could properly thank her, she got to meet Skylar and help her with therapy.

I was able to be squeezed in at my OBGYN today at the last minute today at 3pm so I left my mom here with Skylar and the nursing staff to get checked out (I have a cyst on my ovary that is causing some pain, but it's nothing serious and should go away on its own). It was great to see Dr. Combs again (the doctor who delivered Skylar) and also the other doctors - Bennet and Kleiss who I have seen for years. They all asked about Skylar and wanted to make sure I was doing okay too - it was just really nice to talk to them all about it... our office just started testing for SMA at the beginning of the year.

I came back after a quick shower at home (definitely a nice treat) and met Kyle, Sarah and Pradeep (two good friends of mine from high school) for dinner in Skylar's room :) she had been given a sponge bath and was in the other cute little dress I brought with us - compliments of the Bodens! I'll post pictures soon because she's just adorable!!! Skylar was happy to see us but was pretty tired from physical therapy and playing with grandma all afternoon so she started crashing early. The home health care company came to deliver an oxygen tank to take home with us, a bi-pap machine, and other supplies we'll need at home. Once the bi-pap had been approved by the engineers here at the hospital, we hooked Skylar up to it and she's sleeping well! We might even get to go home tomorrow since we're using the home bi-pap tonight for a test run if all goes well :) I'll keep you posted!

My little orchid :)

So Skylar is doing really well - she was all smiles as soon as we took the bi-pap off her today. However, when we had to put it back on at night she was super fussy. I don't blame her, but hopefully she'll get used to it quickly and can truly benefit from the rest it can give her instead of trying to resist it. She's sleeping well now - I am going to crash as soon as this posts and hopefully will sleep well too.

Ashley Manross is going to visit for breakfast and she said she'd be willing to donate some more supplies to us like a power supply for the car so we can travel more safely with Skylar's machines - huge blessing! She's already saved us over $500 through her generosity of donating her little boy's SMA stuff to us and we are super grateful!!! I hope we can do the same for someone else in the future. Anyway, we're looking forward to seeing her again and the nurse staff in the TICU is excited to see her as well.

I'll leave you with a little poem that someone shared with me through our website contact form:

As tho grifted in a vine
you are rooted on a tree,
Oh wild orchid!
You are beautiful to me.


Tuesday, April 27, 2010

Moved to the TICU

We are out of the PICU (pediatric ICU) and into the TICU (technology ICU) which has been great!!! I can't tell you how impressed I am with the entire experience so far. If a hospital visit can be pleasant, this is by far the most pleasant visit ever! All of the nurses have been amazing and I seriously am just so floored how fabulous everyone has been. The TICU is typically for patients who have a trach or are on assisted breathing of some sort (usually long-term) but Skylar gets to come here because of her breathing machines - mainly the cough assist and the bi-pap.

Because it's more for long term patients, the rooms have bigger windows, the halls are more decorated, there are games and play toys like a jumperoo, bouncer seat, etc. and even though Skylar can't use those, it makes the atmosphere so much better. We have really enjoyed being here and getting taken care of by the nurses. I am partly enjoying this because I know Skylar is pretty much recovered and is doing well so I am not emotionally upset or distraught that I could lose her and the visit hasn't been depressing. A lot of the nurses have dealt with SMA babies here in the TICU and know some of the families I have mentioned previously in my blog.

So we're staying here tonight to get monitored and test her blood levels again. We met with a nutritionist today who has worked with SMA babies (she worked at the Children's hospital in Birmingham for two years before coming here) and has been a huge blessing - nutrition is one area where we were lacking guidance and trying to find someone to help us. Dr. Sedor, the pulmonologist, has visited us twice today and is making sure we get exactly what we need at home so that we hopefully don't end up back here if at all possible. We're going to see how Skylar does tonight on the bi-pap again and then we might go home tomorrow evening. We may need to stay one more night though to use the home equipment here in the hospital so that we know for sure it's set up right and we don't have problems with it.

I'll keep you posted. For now, Skylar is enjoying looking out her new big window at all the leaves blowing in the wind...

ER Visit #1 - a long day

So today was our first trip to the ER... not one I want to make again, that's for sure!

We had a scheduled hospital admittance today to get our bi-pap machine since they couldn't get our sleep study scheduled for another 2.5 weeks. We had her pulse-ox and cough assist delivered last week and we just started monitoring her Wednesday I think... She's supposed to stay in the mid 90 range for her oxygen level, but the first night we used it, she was consistently dropping into the 80s, which meant the alarm was going off every 30 minutes to an hour and soon became the most dreadful sound in the world. Not only did it wake me from a dead sleep, but it caused my blood pressure to raise and sent me into a panic... Don't get me wrong, I am very thankful for the darn thing because it will prevent me from walking in on a blue baby, but I hate that sound none the less. Anyway, we started getting adjusted to the sound and soon realized just because the alarm was going off wasn't necessarily a reason to be scared, it was more of a warning.

Well Friday evening, we had a real warning and didn't get to her fast enough and saw the numbers quickly drop into the 70s. We suctioned her out, pounded on her chest to knock any mucous loose, suctioned her again, and the numbers started coming back up. I called the pulmonologist Friday evening (she gave me her cell phone number so I could reach her directly which is awesome) and let her know what happened and told her we really need the bi-pap machine to help Skylar's lungs. She agreed and said since it was the evening on Friday, if we could make it through the weekend, she could admit us into the hospital on Monday first thing. We went ahead and made the plan and went on with our weekend.

Sunday, we were able to meet up with the Miller Family (founders of the Hope and Light Foundation) to learn from their experiences - they showed us many helpful things and we learned a great deal from them. We shared with them that Skylar had some issues with her oxygen stats and they said it sounded like she had a mucous plug moving around in her lungs. We tried to get it out using the cough assist and other lung therapies, but I was still unsuccessful. Monday morning, I wake up to the sound of the alarm on the pulse-ox. I get out of bed and see the numbers quickly dropping to the 80s. I grab the cough assist first and start doing a few repetitions. The numbers are in the 70s. I start to panic. That is not the direction I want them to go. I start pounding on her chest, suctioning her out, and I do the cough assist again. I hit 80. Holding steady. CRAP! What else do I do?! 80 is not good enough! I grab the nebulizer, and thanks to the Millers, had some saline solution to use to break up the mucous. After that treatment, a little more suctioning, nose spray, and some more suctioning, she was back up in the 90s - a sigh of relief. That took way too long. Skylar held steady at 95 after that and I was exhausted. After staying awake for a little bit to make sure she was holding steady at 95, I decided to get a little more rest before getting packed to go to the hospital.

I wake up to the alarm again - just high 80s... not horrible, easy to get back to the 90s and I am packing our bags. She held steady in the 90s again so I decided to take her by the chiropractor on the way to the hospital since I knew we would be there for a few days and we've been trying to get to the chiropractor almost every day. Skylar has a bit of scoliosis already since she doesn't have any muscles to keep her bones in place and a few of her vertebrae are already fusing together since she doesn't move much. We've already seen some progress and our chiropractor has a great heart to help her. Anyway, we made the pit stop there, then on to the ER to get admitted.

When we arrived, I had to wait in line to check in and then we had to wait some more for the initial evaluation (thankfully there wasn't a real emergency or I would've freaked out!!!). When they finally called us up, I could tell Skylar was struggling with some mucous in her mouth, and they took her vital signs... back in the mid 70s for oxygen. As much as I hated that for Skylar, it got us back to a room right away. Once we got to the room, she was back up in the 90s. The ER pediatrician came in and was checking her out and out of nowhere she dropped fast into the 70s... then 60s. Thank God we were in the ER! I saw the 60s and started to panic and I think the doctor did too. I turned to get the suction machine, the doctor grabbed the oxygen mask and I started pounding her chest. We were able to get her back pretty quick, but she lost some color on that one. It's not a good feeling when your baby turns a little blue.

Our pulmonologist came in to check on us and give us the plan for the next few days, the nurse staff came in to get her blood and IV set up, we went to get a chest x-ray (which showed she had mucous in her right lung), the respiratory therapist came in to hook me up with treatments for Skylar, the doctor came back to make sure we were stable (well, mainly Skylar, but I was stable too :) and everyone was on top of their game. Everything happened pretty fast, and everyone was fantastic! This is probably the best experience yet with Children's Scottish Rite. We got moved to the PICU, met the great nursing staff (we have one of the same nurses from last visit which is great) and Skylar's resting well now that she's getting used to the bi-pap machine. I am soon to follow.

I will update you soon with our plans, how Skylar is doing, and the like. I would like to confess my amazement with God's perfect timing - we feel extremely well taken care of today. It's a major comfort to know that even though you're not in control, there is a God who is and has a perfect plan. I hope it has a happy ending, but I also know that my plan is not always the best one, and just pray for continued wisdom, strength, and peace as we take each day at a time. I am so thankful we came to the hospital when we did so that not only were they able to help me when Skylar dropped into the 60s, but we were able to catch the mucous in her lung before it turned into pneumonia. Serious thanks to God for that. Pneumonia could be fatal or cause a major loss of strength. It's been a long day and I think the nurses are coming in 4 hours to get another chest x-ray so I better get to bed now... be back soon. Thanks for the prayers. Praise God for today.

Saturday, April 24, 2010

Lots of updates :)

So I have waited too long... I'll try to make each update brief :) and include pictures!

Skylar's dedication was fabulous! Our pastor has an amazing heart and prayed over us for strength, healing, and peace. Skylar wasn't too happy that day and almost fussed on stage, but she's been giving more smiles recently and even some more giggles again. We had a great time with family and friends cooking out in our backyard and enjoying the amazing weather. It was fun to tell people to pluck some leaves from our garden if they wanted lettuce on their burger too! Below is a picture in a onesie that I made for her at one of my baby showers with some girls at my church - so fun!

So with that said, Skylar is feeling better, but still no tooth. Other people say they see white too so I know I am not making it up, lol. I'm not sure how long a tooth takes to poke through, but it will be fun to see it once it decides to show up. Here's a recent picture of Skylar with her awesome elephant (one of her fav toys). I love her bright eyes that speak so many words...

I have had the privilege of connecting with Stephanie and Aaron who founded the Hope and Light Foundation to raise money for SMA research. They have a 6 year old daughter with SMA and have been fighting hard since day one to keep her here. A sad but familiar story I am hearing a lot - the doctors told them to go home and love their baby because there was nothing that could be done. They picked up, moved to CA where one doctor was doing SMA research, and when the college was going to shut him down, they personally funded his research to keep it going. AMAZING! They created the Hope and Light Foundation when they moved back to Atlanta to raise money for researchers and are excited with the progress being made. We are excited to meet them on Sunday and see their precious little girl. They've been really helpful lately with sharing information and are going to teach us a lot when we see them Sunday.

On a side note: I feel like right now, there are extreme highs and lows for a lot of people in our lives - news of pregnancies, miscarriages, new life, recent deaths, extreme illness and major growth. It is good to know that we can all celebrate and mourn together even though it can be overwhelming. Right now, most of my days are "good days" but even then, there are still sad moments. I think we're doing alright though and are extremely grateful for everyone who has brought us a meal, given us gifts, prayed for us and with us, listened to us share our experiences - mainly me, lol - and for letting us know you care. I always tell people, "I don't know how people go through something like this without faith..." and of course it is a huge help to have friends and family surround you with love as well! THANK YOU!

A new Skylar update: Because we couldn't get a sleep study scheduled until mid-may (our pulmonologist office kind of dropped the ball and we've had a bit of drama getting it all straightened out - which it should be straightened out now) we are getting checked into the hospital on Monday to get a bi-pap machine and will probably stay there a few days to make sure it works and that Skylar is doing well.

We added two more machines to the nursery: a pulse-ox machine (monitors her heart rate and oxygen level in her blood) and a cough assist machine. The pulse-ox was an interesting addition because there is an alarm that goes off when her oxygen level drops out of the 90s and the first time we used it was two nights ago - I think I was up every half hour silencing the alarm and checking on Skylar (part of the reason we're going to the hospital Monday) while Kyle moved to the couch to get some rest. She's doing much better now because I make sure to clear her out using all methods possible before I put her down to sleep and can monitor her better. The cough assist has been neat (although unpleasant for Skylar) because it forces air in and pulls the air back out to simulate a cough and get the mucous up.

More coming soon on future events and plans so check back often. I'll try to update frequently while in the hospital too. Thanks for reading :)

Thursday, April 15, 2010

Little Miss Grumpster!

So I wish I could title this Little Miss Sunshine, but Skylar hasn't smiled in days! We thought it might be constipation (which was definitely a problem) because that makes me grumpy too, but prune juice really works! I came home to find a naked diaper baby and found out that Kyle got a pretty nasty poo diaper today that leaked, lol. We have had her on an ounce of prune juice for two or three days now and it has helped a lot, but still no giggles. We got a half smile yesterday, but it faded quickly.

After lots of furrowed brows and frowns, I think I might know what is going on... a tooth! I don't know for sure, but it would explain a lot. I think there is a little white tint to her gums on top :) Anyway, she's been sleeping a lot and just so grumpy! It's too bad she can't pull anything up to her mouth to chew on, and anything I put near her mouth she just licks. I got her to munch on my pinky finger tip the other day and an ice cold washcloth yesterday, so we'll see. I'm anxiously awaiting its arrival! Hopefully she'll be smiles on Sunday for her dedication... who knows, she might even reach the big 10 pound mark too when she turns 5 months on the 19th - c'mon double digits! We'll keep you posted!

Sunday, April 11, 2010

Blessings, Blessings, and More Blessings!

Wow - so much has happened since my last blog post. I will apologize in advance for this being long. I realized this past week that some of you reading this have never met me... I think most people would agree that I am a "talker" and I have to admit I can talk about anything to anyone for any amount of time most of the time, lol. Let me just say that I don't waste cell phone minutes :) and I tend to write how I talk so sorry if you're wishing I was more "to the point" about things. I tend to go off on tangents, but I promise I will try to get back to the original point and hopefully not bore your pants off in the process.

Okay, first off, we had a GREAT Easter! Skylar got to meet some family members on my side of the family who came into town a few days before Easter and we had a blast. We made it to the morning service at Trinity and had family over for lunch afterward... and not just any lunch - a serious feast! We had a wonderful time of celebration and truly recognizing the meaning of the cross and resurrection. It was such a blessing to have family come visit, everyone healthy, Skylar at home, and amazing weather! We are looking forward to the Easter season - 50 days to celebrate life, love, and a living God.

Coming home before Easter, I was exhausted after the hospital stay, but Skylar was pretty tuckered out too. No more big messy diapers - YAY! She was only on pain medicine for a few days on an as-needed basis at home and did remarkably well recovering. The incision sites look like they are healing great and her GI check up last Friday went well too - we just got the okay to give her a little prune juice or laxative to help with her constipation so hopefully that will relieve some belly aches. Her g-tube feedings are up to the schedule we were on before the surgery (a 30 minute feed every 3.5 hours) and she is handling them just fine. My milk supply is running low from not pumping enough after a crazy schedule in the hospital and at home so we are pretty much doing all formula feeds now. I haven't given up completely though. This week, we have a check up with the surgeon just so he can see how things are healing and check the g-tube as well, but I expect a good report.

I think Skylar is feeling a lot better after the fundo procedure (not having the reflux as badly) because she's started giggling a lot more. It's the sweetest little sound I have ever heard and it's quite hilarious as an outsider looking in on the two of us I am sure. I'll get her to smile real big by talking to her or playing with her arms or something, and then she give me a little giggle, and then I'll smile real big and laugh with her, then she'll wait until I am done laughing, and will giggle again, and the more she laughs, the more it makes me laugh and it's a wonderful cycle.

Kyle and I had a nice day to ourselves this past Saturday hiking in North Georgia and it was a much needed break - another blessing. The grandparents watched Skylar for us and got to experience the giggles. It was beautiful weather and just some good time to talk about things and enjoy each other. Kyle and I also took some fun pictures of Skylar this past weekend and will hopefully be posting some soon.

The only thing that is of some concern is this dang pollen. Not only is everything yellow and nasty, but Skylar has had a ton of mucous lately. Mucous = very bad for breathing and swallowing. Luckily, our suction machine helps get most of it out, but it sounds like a lawn mower every time you start it up and run it. Skylar has learned to spit out the mucous if she is in a position that allows her to (sitting up or laying on her side) but she creates these little white bubbles when she does it and sometimes ends up looking like Santa Clause if I don't wipe them away. Hopefully we will get a nice hard rain next week to clear all of this out.

So besides a miraculous recovery from a major surgery, another blessing has been the people who have been brought into our lives lately. Of course our friends and family who have been there since the beginning continue to be a blessing, but more recently, two wonderful women (one I mentioned last post who helped me with some questions) and another incredible woman who has lost two boys to SMA now - her name is also Ashley. She has been a huge God send and has hooked me up with a car seat for Skylar that allows her to lie down on her back instead of standard sitting position which makes it harder for her to breathe and swallow. Not only has she donated the car seat, but she has put me in touch with two incredible doctors who have dedicated their careers to SMA and has given me wonderful advice on treatments and care for Skylar. If you feel led, please pray for their family as they just lost their second son this past February and are still so amazing in having the heart to help us and the strength to go forward with love. If you want to learn more about their story, you can check out their blog,

Another blessing: we are going to have Skylar's baby dedication this coming weekend and pray that we all stay healthy so that it is possible. We love our church and the amazing family at Trinity that has surrounded us with prayer, love and support. Kyle and I both are completely ready for this and although I might be an emotional mess on stage during it all, our hearts have already dedicated her to our Lord and God and we look forward to doing it publicly for family and friends to be a part of and celebrate with us.

Anyway, thank you all for reading, praying, and supporting us through this not so easy journey we've been forced to travel. I am sure we'll continue to have pot holes, wrong turns, road blocks and all the other not so fun stuff that goes with traveling the unknown, but I also hope that we continue to have great company, beautiful scenery, and pleasant things too. I am comforted to know that we've put our trust in God and He is guiding our every step - so even if we do have an unexpected turn or a break down, He knows what we need and how to get us to the end destination even if we have to change routes. All I know is that we wouldn't be getting through this any other way. Peace.

ps - I will do my best to keep the next post short... or at least shorter. It might be another update through pictures :) I like those.

Friday, April 2, 2010

The Biggest Poo Ever!!!

Just before we left the hospital, we had just finished Skylar's second full feed that she seemed to tolerate pretty well. The nurses left to get our paperwork and all of a sudden Skylar started fussing. She's an extremely good baby and really only fusses when there's a reason (she's in pain, not comfortable, tired, etc.). So I wasn't too sure if she needed pain medicine or what, until I heard the sound.

Let me interrupt to tell you that ever since we put her on the high calorie formula last week, her poo has been really thick like paste, a little on the green side, and she's been a little backed up because of the iron. It smells way worse too. At the hospital today, her belly was looking a little bloated after her last feed, but we had a farrell gas release bag and thought that would take care of any bloating so we didn't think much of it.

So back to the story... At first, it sounded like a normal wet breast-fed poo so I was actually excited because it seemed like it was easy for her to get out. I heard some gas in the mix and definitely smelled some funk. Then I heard even more bubbles and force exploding in her diaper and it just kept coming - I lifted up her little gown to see some green coming out the side of her diaper on the right. There was a moment of silence. Thinking she couldn't possibly have more in there, and not wanting any more to pour out, I was about to take off her diaper to try and get the mess off her. Just as I was undoing the tabs, I think some dynamite went off and poo came shooting up her back and out both sides of the diaper! It was all sorts of consistencies and colors - green thick paste, watery brown, white chunks, you name it. Gagging, I press the red nurse call button. No answer. I pres it again, and again, and again the way my dad presses elevator buttons, ha. No response. I go out in the hallway and look at four nurses just chillin at the desk (our nurse was not there) and I let them know that I pressed the nurse call button and I needed some serious help. My nurse showed up with her assistant and their faces both dropped. Once I made sure there was nothing to be alarmed about (other than the amount of poo) I busted out laughing - gagging and eyes watering - and said, "how did dad get out of this one?!"

We didn't even know where to begin because it was spilling out of her diaper everywhere. We emptied the crib/bed and wrapped the diaper in the blanket she was laying on and threw all of it away. We used about 6 wipes and switched to 4 wash cloths to clean her off. It was quite ridiculous. My dad and Nana showed up as I was drying her off and were welcomed by the nice smell :) Kyle caught a whiff of it when he went to throw something away as we were leaving and was shocked. It is the type of smell that sticks to your nose hairs and you feel like it's on you somewhere because you keep smelling it and have the strongest urge to shower. Anyway, it gave me a good laugh looking back on it all. I am hoping that it won't happen again because it was really nice to have two other people to help and be on the hospital bedding that you can just throw away... but most of all for Skylar's sake because her poor little belly and bottom!!! Not knowing if it was caused by the heavy drugs, recovery from being put under, IV fluids, the change in formula, or all of the above, we decided to change her feed schedule slightly and hoped that her body got rid of what it needed to.

Coming home, we now feed her over an hour period instead of a half hour period to give her belly more time to process and adjust. We are also back on the Similac Isomil Advance soy formula with iron instead of the milk based they gave us in the hospital and will continue to mix the powder into a high calorie diet. We're still alternating between formula and breast milk if I can keep pumping and producing... It's after 1:30 AM and I am exhausted. I was tired at 9:30 PM and was ready to pass out then, but I had to suction her out, get ready for another feed, pump, put her c-pap on for the night (which made her more fussy and upset) and have been suctioning her out since. I finally gave her some tylenol with codeine to knock her out for the night because I thought her fussiness could be pain related (I mean, she did have major surgery two days ago) and am waiting on her feed to finish. Kyle's asleep and will hopefully get enough rest to be productive at work tomorrow. We have family in town and will be busy through Easter, but I am really hoping to find time for a nap during the day before I have to do this all over again tomorrow night. Some of you have asked, so I'll give you a run down of our daily schedule sometime soon once it's established, lol. The feed just finished so I am off to bed only to get up in 2 hours to do it again... sweet dreams. At least Skylar's asleep now.

Thursday, April 1, 2010

No April Fools - We're Going Home!

So this will be my last post from the hospital today - no jokes here! We're going home soon :)

I wanted to leave you all with some song lyrics that have been coming to my mind a lot lately. Sometimes I sing them to Skylar (until she starts crying when I get out of tune or she gets bored, lol) but I thought they were worth sharing as Easter approaches... It's a song by Ginny Owens called "If You Want Me To" (Ginny Owens has a really cool story too, being blind and writing her own music and playing the piano - I was actually lucky enough to get to see her live at Clemson of all places and talk with her afterwards... a really cool experience). Anyway, enough rambling, lol. Here's the song:

The pathway is broken
And the signs are unclear
And I don't know the reason why You brought me here
But just because You love me the way that You do
I'm gonna walk through the valley
If You want me to

Cause I'm not who I was
When I took my first step
And I'm clinging to the promise
You're not through with me yet
So if all of these trials bring me closer to You
Then I will go through the fire
If You want me to

It may not be the way I would have chosen
When You lead me through a world that's not my home
But You never said it would be easy
You only said I'll never go alone

So when the whole world turns against me
And I'm all by myself
And I can't hear You answer my cries for help
I'll remember the sufferin' Your love put You through
And I will go through the valley
If You want me to

When I cross over Jordan, I'm gonna sing, gonna shout
Gonna look into your eyes and see you never let me down
So take me on the pathway that leads me home to you
And I will walk through the valley if you want me to

Yes, I will walk through the valley if you want me to

Goal for the day: Go Home :)

So I am pretty sure we'll be leaving this evening! It's really remarkable how well she's done - I think she knew family was coming in town tonight and didn't want to be seen in the hospital, lol. She looks great though... you would honestly never know she just went through a serious surgery. We'll continue on the schedule for feeding at home of 3.5 ounces every 3.5 hours with hopes of increasing that soon to 4 ounces every 4 hours. I'll be working with her doctors soon to see about dropping one of the night time feedings so I can keep my sanity. I don't know what we would have done the past two weeks without friends and family bringing us dinner...

Anyway, she's handled her full feedings over an hour time span and now we are going to try over a half hour period (like we did at home) and we'll have two more of those to make sure she does well before being released. I might request to stay through rush hour traffic, hahaha, seriously though :) She's such a good girl - even all of the nurses have been extremely impressed with her alertness, non-fussiness, etc. She just rests on her back and looks around quite content. I think she'll be glad to get home though - much more fun things to look at even though Children's does a great job for a hospital...

One of my best friends is watching Reese for us and I am pretty sure he's going to be sad coming home. Right now, he is getting to stay outside all day in this beautiful weather in a large fenced in backyard with his girlfriend. Lila is a chocolate lab/chow mix who he absolutely loves to chase around the yard and play with. Hopefully I can take him for a run around the neighborhood this weekend and play with him outside so he doesn't get too depressed and neglected, lol. He's such a good dog.

I'll let you know how things go! Stay tuned :) and have a good day!