The Adventures of Charlotte “Lottie” Ryun

We started a new blog because this one would not let us post media anymore…not enough space. Check out the new blog! http://adventuresinryun.blogspot.com/

We wanted to share this video of Charlotte’s journey in the NICU at Fairfax Hospital.  We will post more soon!  Lottie is going in tomorrow morning to get her DOC Band…will post more pictures soon!

http://www.youtube.com/watch?v=SfRc2JOT8V0

Monday was Charlotte’s eye exam and it went really well.  She was such a trooper!  After waiting two hours and getting her off her feeding schedule we were finally seen.  Dr Jeffrey was very pleased with her progress.  She told us that she will need to see her in another 2 weeks but she thinks after that exam she will be completely healed and won’t have to be seen again!!  Praise God!  Thank you for your faithful prayers! 

Yesterday she had another all day appointment with the Pediatric Pulmonologist and the dietician.  We had to get there early so I could feed her and after she was full and happy she took  the car seat challenge again only this time she actually passed!!  Third time’s a charm!   I am so bummed that we can’t post pictures on the blog anymore but I’ll share the link from facebook at the end of this.   The dietician was so pleased with her weight gain that she said we could cut back on her calorie intake, she is now on a 24 calorie diet instead of 27.  After meeting with the dietician we finally were able to see the pulmonologist.  He’s the doctor that adjusts her medicine and reviews her monitor status and all that.  The nurse there took her monitor from us while Charlotte was doing the car seat challenge and downloaded it for the doctor to review.  He told us that she didn’t need it anymore and in fact she didn’t really need to go home on it in his opinion…it was probably ordered for peace of mind for the NICU doctors.  We are so excited to have her off of it!!  It’s so nice not to have her on a “leash” hooked up to the wall anymore!  We will see him again in another month so he can monitor her lung development.  He said that her lungs won’t be completely healed until she’s about 8 or 9 years old…this is a VERY small price to pay in the grand scheme of things!!  I know we talk about this all the time but we realize more and more that Lottie truly is a miracle from the Lord.  He has touched her body and healed her and is continuing to heal her more every day.  We are believing that she is going to do great things for Him!  Thank you for loving out little girls so much and for your continued prayers.  God bless!

http://www.facebook.com/album.php?aid=2003954&id=131500374&saved#/photo.php?pid=30124976&id=131500374

Ned&Becca

It was a long time coming…122 days, James’ birthday, Thanksgiving, Christmas, New years, Nathaniel’s birthday, our anniversary and Ned’s birthday but Charlotte is finally home with us and doing great!!  It was well worth the wait!  We couldn’t have chosen a better weekend to bring her home either…God is so good!  It was 72 degrees on Friday when we took her home and it has been beautiful ever since.  It was my plan  to update the blog yesterday when Ned took the boys to my parents but I was having such a great time cuddling with my girl that I didn’t get anything done that I was supposed to. 

We arrived home with Charlotte at around 1pm on Friday.  Ned’s sister Catharine helped us clean and pack up our room at the Ronald McDonald House.  We were so grateful to have been able to stay there for so long but we weren’t at all sad to leave it.  We were so excited to introduce Lottie to her brothers.  Nathaniel was equally excited to meet her and James was completely uninterested and then totally jealous.  Nathaniel wants to hold her all the time and any time he hears her crying he grabs her binky, runs to her and says, “don’t cry baby Charlotte!”  Today he and James went to my parents because I had a doctors appointment for Charlotte.  When he was leaving he said, “love you baby Charlotte, I be right back.”  He ran out the door and not 60 seconds later he ran back in and yelled, “I forgot to give baby Charlotte a kiss!”  James will love her in time.  

Her doctor appointment went well, she had gained some weight she is now 7lbs 15oz!  We brought her home on a heart monitor but it hasn’t gone off except for when James tried to use it as a step stool…I guess it didn’t like that too much.  It is incredibly loud and scared us half to death!  Her lungs are still very week from being on a ventilator for so long but she’s gaining weight and that’s the first step in healing them.  I know so many people are praying for us because I feel such strength and grace.  I wasn’t sure how this would all work with Ned’s arm being broken and having the boys and Lottie to look out for but she is such a great baby and it’s really been so great.  We had a little bit of a rough night Friday but Saturday and Sunday night she slept from 11:30pm to 6am!  Her nurses in the NICU, Nikki and Jackie, got her on a great schedule for home!  I want you all to know, thanks to your prayers, we got the best primary nurses in the NICU…they really loved on Charlotte and have all been in contact with us since we left to see how Lottie was adjusting and if we needed anything.  One of her nurses (the one that was with her from day 1) lives right down the road from us so I plan on stalking her as much as possible!   We have lots of doctors appointments in the next couple of months and we still need your prayers.  She did have to come home in a car bed but she’s going in in a couple of weeks to retake the car seat challenge.  They will also check on her monitor to see how many spells she’s had and if she will be able to come off of it.  She has an eye exam next week and she meets with the pediatric rehabilitation Dr. for her development.  Thank you for caring so much about our family!  We love you all!

Ned&Becca

It still looks like we’ll be bringing Lottie home in the morning. We’re praying that she makes it through the night without any spells.
We are very thankful that Ned will not have to have surgery on his arm like we thought he would. Thank you for praying! We’ll keep you posted.

Well, Charlotte had another brady spell early this morning so that means she won’t be coming tomorrow like we thought.  Dr. Workie wants to see her go at least 3 days without a spell.  We’re shooting for Friday now unless she acts up again on us!  It was pretty disappointing I have to say.  I had her room all packed up and ready to go. 

On another note:  She had another eye exam today and they had improved from last week.  She won’t have another exam for 2 weeks!  She will be going home in a car bed, she failed her car seat challenge again so they went ahead and ordered the bed for us. 

Please pray that she can make it 3 days without any spells…we’re more than ready to get home and into some sort of routine.  Also please pray for Ned, he broke his arm on Sunday and it happens to be his left arm which is the one he uses.  He sees the orthopedic surgeon on Thursday and he’ll have to have surgery on it in a week or two.  When it rains it pours!!  Thank you for your prayers!

Here’s a link for a picture of a car bed in case any of you were wondering what it looked like.:)  http://www.babyminestore.com/index.asp?PageAction=VIEWPROD&ProdID=11144

Last Saturday I started a group to walk in March for Babies in honor of Lottie.  As I was signing us up on the computer at the Ronald McDonald House a woman who had come to make lunch for us there started talking to the lady that was working the front desk.  She was telling her about her experience in the NICU at Fairfax Hospital 5 years ago.  They had a baby girl that was just under 1200 grams who only lived for a week.  Back then they considered any baby under 1200 grams to be terminal and did nothing for them but keep them comfortable until they passed (Lottie was born at 640 grams).  Hearing her heartbreaking story only confirmed our decision to raise money to go towards medical research for babies born premature.  We know that God is ultimately the reason Lottie is alive and coming home to be with us soon but being in the NICU with her for 4 months has also made us realize that God has gifted people to do His work in these tiny babies’ lives.  Ned and I have been overwhelmed by the amount of people praying for our precious Lottie and wanting to help our family out in any way possible some of whom we haven’t even met before.  We know these are hard times and we would not want to pressure anyone to give to this cause that is close to our hearts unless they really felt led by the Lord to do so.  I am only writing about this because so many people have asked what they can do for us i.e. meals, money towards medical bills, grocery shopping for our family, clothes for Lottie…instead of these things we would rather people put that money toward this cause.  We are praying that by putting our story out there for people to see it will bring them hope.  We don’t want any mother or father to have to experience the heart wrenching feeling of having to say goodbye to their precious little baby.   Our hope is that in another 5 years with the medical research they wouldn’t have to. 

For those of you who are unfamiliar with our story you can visit our blog at:  http://nedryun.blogivists.com/

Thank you all for your continued prayers and for taking the time to read this.  The walk is April 19^th (the Sunday after Easter) at Reston Town Center.  You don’t have to give money to walk with us.  Please sign up to join us in our effort at:  http://www.marchforbabies.org/s_team_page.asp?seid=643621

That’s the word right now. We’re hoping and praying that it really is this time. She is doing well. I just called on her. Last de-sat was yesterday morning, and all she went down to was 77 (they want her over 84). She’s been doing 65-75 CCs every time by the bottle, and is up to 7lbs 50zs. We’re going to have to bring her home on a monitor, and maybe a light oxygen flow. She had her hearing test on Wednesday and passed it without any problems. Had another eye test and is still holding steady at stage 2, so she’ll probably have one more on Tuesday before we go home.

Little miss Charlotte failed her car seat challenge today.:(  We were getting excited about bringing her home on Thursday but it looks like she won’t be coming home now until next week some time.  The car seat challenge isn’t what is holding her up since we can get her a car bed if we try again and she fails.  The problem she’s having now has to do with her heart rate.  She’s been for the last week or so having some spells where her heart rate will drop down below 80 and someone will have to go in and stimulate her to get her to start breathing again.  She had one of these episodes this morning and last night.  Her doctor (Dr. Park) said he wants to see her go 3 to 5 days without having one of these spells before he discharges her.  Of course we agree since we wouldn’t want to risk bringing her home if she’s not ready but we still feel a little disappointment after thinking the last couple days we’d be bringing her home this week. 

 I wish I could post a picture on here of her but our space is limited on the blog so you all will just have to check out my facebook page.   http://www.facebook.com/album.php?aid=2003898&id=131500374&saved#/album.php?aid=2003898&id=131500374

She’s looking so good!  Thank you for your prayers!

Ned&Becca