Friday, July 31, 2009

Room-In

Last night I got the opportunity to room-in with my sweet girl at the hospital. They asked me to stay to see how she would do solely nursing through several hours. Needless to say, I jumped at the chance! It was so wonderful to get to sleep with her next to my bed.

I use the term 'sleep' loosely since there was absolutely no sleeping going on. Please keep this in mind when you're reading this post:)

Scotlon had to work but Hailey was so kind and stayed with me so I wasn't alone. She was a huge help and I could not have done it without her. Around 5:30, the machine had been beeping non-stop because the wires were twisted, Alaina wanted no part of nursing or the bottle I was trying to give her, I was running on about 90 minutes of sleep total, and I was so glad for another person in the room with me. Hailey kept me from going completely crazy and I will forever be grateful for her!

This morning after her 9:00 feeding the nurse pulled Alaina's feeding tube out. They want to observe her for 24 hours and if nothing crazy happens, Scotlon and I will room-in again tomorrow evening. Then on Sunday we will get to take our sweet daughter home! We are VERY excited and just a little nervous. Please pray that everything goes smoothly and that the next time I'm writing, it will be with my girl sitting next to me!

Love,
Stephanie

Thursday, July 30, 2009

No news is good news

Alaina has had a wonderful week! They were able to turn of her oxygen so she is breathing completely on her own now. Also, the doctors let me start trying to nurse 2-3 times a day if I'm there. If you have any mail to send I can get you the address since I never leave now:) I think that the nurses are probably getting tired of seeing me there!

We are getting really close to being able to take her home. The ONLY thing that we're waiting on is for her to take all her feeds without needing any through the feeding tube. After she does that for 24 hours, they'll pull the tube and then observe her for 24 hours and we're home free!!! She's doing better but she'll get a few down and then have to tube some so the clock starts over again. We're both so ready and anxious that it's hard to be patient during this last leg!

Please pray that she continues healing and that she is able to come home soon!

Love,
Stephanie

Thursday, July 23, 2009

I can't think of a witty title so we'll just go with 'Update'

Today has been a good day, full of rest for me. I spent a lot longer at the hospital yesterday and I think it wore me out more than I realized! It was a wonderful day though and I wouldn't have traded it. Aunt Jana, Aunt Hailey, Uncle Michael & Hannah all came to meet Alaina! Hannah had to wait outside because she is still a little young to visit, but they'll be spending a lot of time together in the near future.

Alaina also had a visit from our pastor and she decided to show off her ever-improving lung power for him! I can't blame her though since they were inserting a new feeding tube up her nose. Of course...if she would stop pulling it out they wouldn't have to put a new one in as often. I tried to tell her that but she refuses to listen. I never would have expected a stubborn child since Scotlon and I are so easy going and sweet...ha! In reality, I'm shocked that she's not more of a pill given the genes that she got:)

Last night when Scotlon got there to visit, she had managed to work her oxygen tube out and it was resting up on the bridge of her nose. The good news is that her stats were okay and she was breathing totally on her own for a few minutes. It's too much work for her to keep that up right now though so the nurse put new tape on the tube and we're hoping that she'll leave it alone.

Her feedings are going okay so far. She's not doing really fantastic but she's not doing really badly either. She gets a good rhythym going and tends to take about half the bottle before she needs a break. Once she sits up to burp, she gets tired and has no interest in working for the other half of the bottle. The physical therapist has reassured us that this is perfectly normal and that feedings are typically the last thing to master before kids leave. We are continuing to pray that she gets the hang of it. Once she gets it down a little better, they are going to let me try to nurse. I'm very hopeful that maybe by the weekend or first of next week, they'll let us try. Not that I don't love my pump, but feeding my kid has to be more rewarding than feeling like cattle...


Sometimes I get so tired and frustrated but then I look at that sweet face and it's totally worth it. Don't you just want to squeeze her???

I love that face too:)

Her new room in the Intermediate Care Unit. They didn't know her room was in ladybugs when they made the sign for her crib.

Aunt Jana, Aunt Hailey, Alaina & Me. We all look so much alike in this picture though none of us are actually related!


"Then they cried to the Lord
In their trouble and he saved them from their distress.
He sent forth his word and healed them; he rescued them from the grave.
Let them give thanks to the Lord for his unfailing love
and his wonderful deeds for men."
~Psalm 107:19-21
Love,
Stephanie

Tuesday, July 21, 2009

Major Strides

Alaina is doing FANTASTIC! She has made some major strides in the last few days and they're hopeful that we can take her home in as little as two weeks!!! Please continue to pray that she heals at the rate that she has been and that there are no big setbacks. We have two big hurdles to cross and then observe for a couple of days and we are home free!

1. She needs to get down to 21% on her oxygen and be able to turn the flow off completely. She is currently hovering between 30%-35% and her flow is 1 liter. She was on 3.5 liters just 3 days ago!

2. She needs to be able to eat all of her feedings orally instead of through a feeding tube. Currently they're trying to give her a bottle twice a day to see how she does. So far she seems to be getting the hang of it slowly but surely. Once she is doing better with the two they'll start increasing the number of times that they try to bottle feed.

She was moved down to the Intermediate Care Unit from the Special Needs Nursery so we're one step closer to the door:)

I am going to the hospital now so that I can get there in time to try to bottle feed. I'll take some pictures of her new room to share while I'm there. Thank you for your continued prayers and support. They are what is carrying us through day to day and I thank God for providing people to share the burden with as well as celebrate with.

Love,
Stephanie

Tuesday, July 14, 2009

Picture Post

Here are some new pictures of my sweet girl! There's not much new to report right now as far as she's concerned. She is getting better slowly but surely and it's just going to take time for her lungs to heal after the trauma that they've been through. She's doing really well though and we're praying for the rest of her recovery to be speedy! We are both so ready to have our baby girl home with us. Thank you so much for your continued prayers and support. It means more to us than I can even begin to tell you.





I just love the back of her sweet head:)

Throwing a major tantrum!

Sleeping peacefully after finishing our tantrum.

Snuggled in daddy's arms and all is right with the world.

Love,

Stephanie

Sunday, July 12, 2009

Quick update

It's been a crazy couple of days so I'm just now getting on to post. Alaina is doing well and hanging in there. She is definitely a rotten little stinker though...she pulled her intubation tube out on Friday night. They watched her closely and decided that she didn't need to have a new one put in. She is now getting oxygen through a nasal tube. She is stable and just trying to work on continuing to heal. And, for tonight that's all I've got since the storm is getting really nasty here and I need to turn off the computer. I promise new pictures and more info soon.

Love,
Stephanie

Saturday, July 11, 2009

It will never lose it's power

Angie posted this over on her blog and it both made me laugh and brought tears to my eyes. God never fails to have me hear exactly what He wants me to and His methods never cease to amaze me. Please take time to watch the video; it's only a few minutes and I promise it will make you smile. Enjoy!



Love,
Stephanie

Thursday, July 9, 2009

Back to good old Gainesville!

Man, do we have some huge praises since the last time that I posted! Even more so than when Hailey posted for me (thank you to her by the way). I know that you've all been dying to know what's going on by the number of phone calls we've received and it warms my heart that there's that many people praying for us out there!

Alaina has made incredible strides in the last 4 days. She had an AWESOME nurse at Eggleston named Risa who had a tough love approach and told Alaina that she was not allowed to be a diva anymore. Just because it was a holiday weekend did not mean that it was going to be drama-filled and she needed to settle down. Apparently Alaina realized that she was not going to be able to milk it anymore and settled down happily! Scotlon and I are thrilled to learn that now so that we can be prepared with a no diva rule in our house in the future:)

They were able to wean her off of the Nitric Oxide that she was on and lower her Oxygen even further. Because of these things we were able to hold her! Scotlon was there on Tuesday night when they decided to let us hold her and he is quick to remind me that he held her first. He feels this is very fair since I held her for nine months. I tried to tell him that I paid my dues in swollen ankles, back aches, the incision in my belly, but he wouldn't budge.

Anyway...

I spent just over three hours with her snuggled in my arms yesterday and got to feed her for the first time. Granted, it's through a feeding tube but it was my milk feeding her and that made me feel very much like a mommy. I know that I am a mommy but it doesn't always feel like it so yesterday was just incredible.

Today we got the call that they were shipping her back to Gainesville! She came back this afternoon and we have already been over to make sure that our girl got settled in okay. She wasn't as thrilled by this car trip but seems to have calmed down a bit more now. We're hoping that she stays calm so we can get moving on making some more progress.

We still have absolutely no idea how long it will be before she comes home to us. There's still a long way to go before that happens, but unless something crazy pops up, we feel very confident that we will at least get to bring her home at some point. Up until now that's been up in the air and it feels really good to see an end in sight!

Lord we praise you! Thank you for the healing that you have done thus far on our sweet girl. We ask that you continue to put a healing hand on her and love her as only You can. Please provde strength and peace for Scotlon and I as we walk through this season. Please help us to remember that you have a purpose for every thing that is happening right now and that you will use this for your glory!

Psalm 100:5 - "For the LORD is good and his love endures forever; his faithfulness continues through all generations."

Dark eyes just like her daddy!

Love that sweet girl!

Daddy and Alaina completely in love with each other


Mommy trying REALLY hard not to cry (which lasted about 30 seconds)

Love,
Stephanie


Wednesday, July 8, 2009

Please Stay Tuned…

I am commandeering Stephanie's blog for one more super short post; the Internet is down at the Hughes residence, so that is the reason Stephanie has not updated you about Alaina since Monday morning. I will not give away anything special, but Stephanie has some very exciting news to share as soon as their Internet connection is up & running!

I return you to your regularly scheduled blogger,
Hailey

Monday, July 6, 2009

Holiday Weekend

This weekend was a little bit of a tough one for us. Alaina continues to be stable and is happy hanging out where she is. There have been no major leaps ahead in her progress and no major setbacks. We are thrilled of course with the fact that she is stable but frustrated as well at the lack of progress forward.

Saturday was her first holiday and it was really hard to not have her with us. She had a little outfit that we bought and she was supposed to be home with us wearing it. We were supposed to be enjoying the day with our new daughter, laughing and loving, not driving home from Eggleston's empty handed. We came in and just sat there together, trying to ignore all of the fireworks outside. Normally we love the fireworks but our hearts weren't in it this year. This was just not the way that it was supposed to be.

Please don't misunderstand, we are so happy that she's doing okay. We praise Jesus for all of the progress that she has made so far. We belive whole heartedly that He can heal our baby girl. We still have a long road ahead though and right now, we're both so exhausted and emotionally drained that we can't see straight.

We continue to ask for your prayers for Alaina to be healed. Will you also pray for strength and peace for Scotlon and I? We want to remain focused on the positive and not let anything steal our joy in the progress that Alaina has made. I've included the newest picture of our girl-her daddy brought in pink mittens instead of those yucky white hospital ones.


Matthew 11:28- "Come to me, all you who are weary and burdened, and I will give you rest."

Love,
Stephanie

Friday, July 3, 2009

Little Milestones

I promise one day that I'm going to get my post up before the very end of the day. Well, I promise to at least try to get it up before the end of the day.

Our visit with Alaina today was incredible. The paralytic that they had her on is continuing to work it's way out of her body and she's moving around a lot more. I put my finger under hers today and she flexed her fingers around it and held on. What a feeling to hold my daughters hand for the first time.

Today was actually full of firsts! We happened to be there during the time that they were taking her vitals and we got to help. I took her temperature and got to change her diaper. Which, by the way, is not as easy as it sounds when you're working around a lot of tubes. She put up with my shaking hands though and we got the job done. Speaking of diapers, she has already outgrown her newborn diapers and has moved to size one! We finally got a measurement of her length and she's 22 inches long. I can not believe what a big girl we have!

Her stats all look about the same today. We just got our bedtime report and she's stable and tucked in for the evening. Her blood pressure has been going up and down and they would like for it to be a little steadier. She's still on the nitric oxide along with oxygen and they want for her to come off of that completely before they transfer her back to Gainesville. Overall, she's continuing to improve but needs a lot more time to heal.

What a praise for her to have come this far! Less than a week ago we were facing very grim possibilities. The power of prayer is an amazing thing and 6 days later, here we are! We are very aware of the fact that things could still take a turn for the worse, but are choosing to trust that God has us exactly where we are supposed to be in this moment. We will continue to praise Him for all of her milestone's and lean on Him for strength when things aren't going as well.

Please continue to pray for Alaina's healing and for strength for Scotlon and I. We were talking earlier about how people without faith in God get through things like this. I can't even begin to imagine how much harder this would be if we didn't have hope that it was going to get better. If we didn't know for a fact that He is with her tonight, watching over her as she sleeps. Our sweet Jesus has been holding us every step of the way and I am so grateful that He is.

Psalm 106:1~ "Praise the LORD. Give thanks to the LORD, for he is good; his love endures forever."

Love,
Stephanie

Thursday, July 2, 2009

Girlie Girl

I am going to be brief tonight as it's been a good, but long day and I am drained. Alaina is doing very well today. They have taken her off of her blood pressure medication completely and have turned her oxygen down. The most exciting thing though is that they have taken her off the paralytic. She's still very sedated but she's moving around a little bit. We were there for about two hours earlier and we got to touch her soft skin and see her open her eyes! They are dark just like her daddy's and I am thrilled that she got his eyes.

If Alaina continues to improve the way that she is, there is talk of moving her back to the NICU in Gainesville in the next couple of days. We are cautiously optimistic and would love nothing more than to have her so close to home. Of course, the more exciting part is that they will not move her back until they feel that she is out of the woods. We're still not there, but it seems that there may be an end in sight! Praise Jesus and His awesome healing power!

One of the things that we did today was take our girl a bow for her hair. The nurse was sweet enough to put it in and take a picture for us, which I included below. Isn't she just beautiful?


Love and blessings,
Stephanie

Wednesday, July 1, 2009

Home

Hello all. I apologize for not getting this post up sooner. I had really great intentions this afternoon but found it difficult to type with my eyes closed. Who knew that pain medication made you so sleepy?

Alaina has had a good day and is doing well right now. They have stabalized her blood pressure and were able to turn down that particular medication. She's not weaned from it completely but it's half of what they were giving her previously. They had turned down her oxygen to 85% earlier today but have moved it back up to 95% now. We were a little concerned about that but the nurse explained that they will continue to move it back and forth while her lungs are getting stronger. They want her lungs to get used to working on their own but then give them time to rest until they are strong enough to be off of the additional oxygen completely.

Overall she is doing very well today. In fact, the transport team said that as soon as they were headed towards Atlanta, she started to improve. Apparently she just wanted to go on a road trip and see the city:) She's still in critical condition and we're far from out of the woods but it is such a relief to have some positive news to report.

I was discharged from the hospital this morning and am settled in at home. Walking through the door without my baby is the hardest thing I have ever done. I stood with Scotlon in her nursery and cried because she should have been there with us. I know that it's only a matter of time and she'll be here, it's just so surreal to be here without her right now. We're praying really, really hard that that day comes very soon. Until then I'm getting as much rest as possible so that I'll be all healed when she does come home.

A dear sister in Christ reminded me that I once posted this verse and I think it's perfect for today.

"My soul trusts in You; and in the shadow of Your wings I will make my refuge, until these calamities have passed by." Psalm 57:1

He is good ALL the time and we are resting in His love and peace tonight.

Love,
Stephanie