Update on Natalie

[JenaW]

I know Sharyn gave you the good news a few days ago, and I wanted to share some more. Sorry I hvae been so slow with my updates. My parents actually have my older kids again in NY, so I SHOULD have more free time, but I have been using it to get things done around the house that have been neglected, and of course spending lots of extra time at the hospital.

Natalie continues to impress everyone. Thursday night Natalie managed to pull out her breathing tube yet again (I think this is about the fifth time). This time they decided to give her a chance to prove she could breathe without it. Despite the attending physician's insistance that she was NOT ready for this (her ventilator settings were still pretty high - they had been attempting to wean down on her rate, but her blood gas that morning was not that great, so they were planning on having her "rest" for a day or two at the current settings) she did great. After about an hour of breathing on her own (with just supplimental blow-by oxygen) they got a blood gas and x-ray. Things looked fine so they decided to put her on "cycled CPAP" instead of reintubating her. I guess they were worried that she would tire out if she had to keep breathing on her own). This isn't traditional CPAP (that they use for sleep apnea where you just get a small amount of constant pressure to keep your airways open and decrease the work of breathing). Instead of a mask, she has long nasal prongs (versus the endotracheal tube she used to have that goes all the way into her bronchi) that do assist her somehow in breathing, but she is doing most of the work on her own. (Can you tell I am a bit confused by all of this?? And no one can really explain it to me so I understand it). Anyways - the point is she is doing incredibly well. Apparently the attending physician was a bit peeved when she came on that following morning (she spent about an hour the previous night telling me that Natalie was not ready for this and to do it might stress her too much). Thank God that the fellow who was on call and Natalie's nurse decided to ignore (or were unaware of) her advice and went ahead and let her try anyways. On my insistence they finally started the steroids and she is now almost breathing room air (we breathe 21% oxygen in the air, and she is on 23-25%). This is INCREDIBLE, as many preemies go home on oxygen. I am told that her oxyden demands will most likely go up once the effects of the steroids wear off, and also once she is actually breathing on her own without any assistance, but for now I am happy with this! DH FINALLY got to hold her for the first time, and I have been kangarooing with her nearly every day! I can not wait until I can FINALLY try to put her to my breast. They gave her a pacifier yesterday and she went to town on it. Of course, there is still the size issue (my nipples and breasts are definitely NOT preemie size!!!).

I can not begin to thank you all for your continued support and prayers. Natalie truely is a miracle, and I am convinced that we owe her survival to the hundreds of people who are praying for her. I owe MY survival to all of you and your encouragement. You have no idea how much your words have sustained me through this ordeal. We still have no clue when we will be able to bring her home. Obviously weight gain is still a big issue. She was up to 2 pounds 13oz, but has lost a few ounces over the past few days, and was down to 2lbs 11oz last night. She needs to get off the CPAP all together and be breathing entirely on her own, with no "A's, B's, or D's" (no episodes where she stops breathing, drops her heart rate or her oxygen saturation). She also needs to be taking all of her feeds by bottle and breast. Right now she still gets everything via an orogastric tube, and they will not start bottle/breast feeding until she is off the breathing support. Her due date was December 26th, and we would love to have her home by Christmas. I think that goal is attainable, especially if she continues to progress as she has, but no one at the hospital is willing to commit to that yet. We'll see. Natalie seems to have her own agenda. Already in the three days she has been on CPAP she has pulled her nasal prongs out 4-5 times!!!

Here are some more pics! They are from the last week or two. I need to upload the new ones of her on CPAP.

Thanks again.

Jera

http://img.photobucket.com/albums/v636/gwn76/PA220170.jpg

http://img.photobucket.com/albums/v636/gwn76/PB080231.jpg

http://img.photobucket.com/albums/v636/gwn76/PB040208.jpg

[ismommy]

Jera,
thank you so much for sharing her photos. what a sweetie. i am so happy for you all that she is doing better than expected, what a strong little girl just like her mama
Helene
mommy to Isabella
and Gunner
http://www.mothering.com/discussions/images/smilies/candle.gif

[cvharris]

Jera,

Thanks so much for keeping us updated. I'm so happy that Natalie is a fighter and continues to do well. Sounds like she is making amazing progress. She looks great.

I hope she continues to improve and is home by Christmas. Take care of yourself and please let us know if you need anything.

Carolee
Mama to Ben (6/03)
It's a BOY! Baby brother due 12/18/05

[barbarhow]

Jera you have an amazing little girl! Boy is she feisty. So glad that she continues to progress. I look forward to the updates. I am thrilled for you that your DH finally got to hold her. A million hugs to you and Natalie. Let us know if there is anything you need.
Barbara-mom to Jack 3/27/03, a Red Sox fan
and Anna 5/12/05, my little Yankee fan!

[brigmaman]

What wonderful news. :) I'm so happy to hear this. It has made my day. I'll continue to pray for Natalie's strength to increase!

[icunurse]

She's getting to be such a big girl! She's so beautiful! My prayers for you and your family and for Natalie to keep that fiesty spirit.
Traci
~Connor's Mom 02/2004~
Agency paperwork completed - waiting for #2!

[jd11365]

Way to go Natalie!!! Jera, she looks amazing...definitely on her way to coming home! What a fighter!!!

Thank you so much for taking the time to keep us updated. I'm sure you have so many things to do, and I know you know we are thinking of you both everyday. It's a pleasure to hear such wonderful news and see her beautiful pictures!

Sending lots of hugs and continued prayers your way!!!

[stella]

I am so glad to hear that she's doing so well! I look forward to the updates! Thank you.

Claire

[mommd]

Thank you for your update. I'm glad to hear things are going well. I will continue to keep you and your family in my thoughts and prayers.

[bluej]

Jera,
Reading Natalie's updates are truly a highlight of my day. I love to hear how your little fighter is doing. I will be praying that your best Christmas present will be Natalie at home celebrating with you!

[bcky2]

what a beautiful little angel! i am so happy to hear that things are looking good. she sounds like a little fighter :) i will keep my fingers crossed that she gets to have christmas at home with her family.

[Roleysmom]

Jera, Natalie is such a beautiful little girl. She looks so much stronger than she did in the pictures you posted earlier. The prayers, love, and strength of her formidable Mamma and Daddy and those who care about them are working wonders! You are an amazingly strong woman.

Paula -- mom to Roley Julia, January '02

[kensjen]

Jera,

Your little girl is just precious, I love the photos. Thank you for sharing them with us. I am so glad to hear that Natalie is having more good days than bad, she is such the feisty little one. Our thoughts and prayers are still with you.

Thanks for taking the time for the update. Big HUGS to you mama!!

[slknight]

Jera, my continued prayers are with you and Natalie. She sounds like quite a fighter. Thanks for sharing the beautiful pictures.

[COElizabeth]

Thank you, Jera, for sharing Natalie's updates and pictures with us. I am so thrilled to hear your good news and am ever more amazed at the strength of you and your beautiful baby girl. I hope and pray that Natalie continues to progress so well and that she is home with her loving family as soon as possible.

Elizabeth, Mom to James, 9-20-02
and Charlotte, 11-04-04

[turtledove]

Jera - Thank you for sharing pictures of Natalie. I love hearing how well she is doing and you are both in my prayers!

[dr mom]

Natalie is such a beautiful baby - I especially love that last picture, with her perfect kissable little baby toes. She's proved to have a strong spirit, and I pray she will continue to thrive and grow. I can't imagine a better Christmas present than bringing your daughter home to stay.

[tarabenet]

I just love the days when I log in here and see an update on this little darling's incredible progress! Thank you so much for sharing. She and the rest of your family will certainly continue to be in my prayers.

Benet

[murpheyblue]

Jera, I am in awe of you and your amazing Natalie. I think of you and your family everyday. I'm so glad to hear that your DH got to hold her and that you are getting more contact with her. I'm sure she get s so much comfort and strength from your touch.

[american_mama]

I learn so much reading these updates, about preemie medical issues and about the strength of moms and babies. You are both doing amazing things! I love the photo of her taken through the incubator armhole; she looks like she is lounging on a beach.

[littleme2]

Your daughter is so beautiful. Thank you for sharing such wonderful news and pictures.

YOU are so strong and amazing!!

[RwnMayfair]

Jera, Natalie looks like such a sweetie. Thank you for sharing the pictures. And I'm glad things are going well and hope she is able to be home with you all by Christmas! Thank you for the update!

-Melissa

Taran, November 20, 2003
Elowen, August 20, 2005

http://lilypie.com/pic/051031/edeJ.jpg http://b2.lilypie.com/jn4Ym4/.png
http://lilypie.com/pic/051031/bvVl.jpg http://b1.lilypie.com/9Ogqm5/.png

[ykc]

So glad to hear that Natalie is improving every day! Babies are unbelievably resilient, aren't they?

BTW, I think you have a pretty good understanding of CPAP. The only difference, really, between the CPAP used for sleep apnea and the nasal CPAP that Natalie is getting is how the extra pressure is delivered (face mask vs nasal prongs). The ventilator, through the nasal prongs, provides a little extra boost of air pressure to help Natalie keep her lungs open when she breathes out, so she doesn't have to work quite as hard to reinflate them when she breathes in. Anything beyond that explanation is too technical for me!

Keeping you and your family in my thoughts!

[pb&j]

Go, Natalie, go!!!


-Ry,
mom to Emma, stillborn 11/04/04
and Max, edd 01/15/06 - it's a HEALTHY BOY!

http://lilypie.com/days/060115/3/25/1/-5/.png[/img] ([img)

[brittone2]

Thanks for the update!! I'm so thrilled you are getting the chance to hold Natalie a lot now....that must feel amazing!!! It sounds like she continues make exciting progress. I hope with all of my heart that she'll soon be latching on and nursing and hopefully home with you before long.

[Vajrastorm]

Jera, I don't usually respond. Shyness, perhaps. I'd like you to know that I have been following your story since before Natalie was born, and my thoughts and heart have been with you all this time.

I love reading updates on Natalie. I often come to the Lounge just to see if there is any news about her.

We've never met, nor even talked, but I am overjoyed that Natalie is such a tough little girl. Writing this makes me choked up.

More people than you will ever know care about her life.

[McQ]

Jera ~ This is such wonderful news. Natalie is such a feisty little sweetie. What a love. Take care mama ~ we're thinking of you too.

Allison
~ mama to Declan and Meghan

[mudder17]

Jera, first off, you have nothing to apologize for and I am just so thrilled by Natalie's progress (but nothing compared to you, I'm sure!)! These pictures are so heartwarming to see because it is so obvious that she has grown and has improved so much! I will pray that she comes home to all of you for Christmas and that she continues to outdo all of the doctors' predictions. :) Thanks so much for the update! Please go give Natalie a hug from all of us!

Eileen

http://www.mothering.com/discussions/images/smilies/candle.gif for Leah
http://www.gynosaur.com/assets/ribbons/ribbon_emerald_18m.gif

http://tickers.baby-gaga.com/t/catcatcvi20040222_4_Kaya+is.png
Kaya's a cousin! 10/1/05, 5lb13oz

[tina-t]

She is so precious and amazing. You, Natalie and the rest of your family continue to be in our prayers.

[HannaAddict]

Jera,
Thank you so much for taking the time to update us. I am just so happy for you and your husband that he has been able to hold her and that you are able to cuddle her more and more. Natalie is a tough little cookie and a cute one at that. I love the pictures of her. Keep growing and getting stronger little Natalie!

Kimberly

[zuzu]

Jera, what wonderful news! Thanks for sharing pictures of your sweet little girl. I hope she continues to find more and more strength - I'll bet she gets that from her mama. :)

[deenass]

All I can say is WOW!!! Sounds like Natalie is as strong as her mama. So glad to hear the cintinued good news!

[VClute]

I, like a lot of other people here, regularly check to see if there's an update on your sweet DD. I don't know you at all, but I have been praying for you and I'm so thrilled things are going well. I LOVE the last picture with her leg thrown over the pillow. TOO CUTE! Thanks again.

Amy in NC
mom to Dixon, born 2/14/05

[momma_boo]

I just realized that I never replied to your previous posts. Thank you for the update with such great news. It is amazing to see the strength and fighting spirit that Natalie has. I cannot imagine how hard it is for you and your family but I'm sure her progress is uplifting.

[cinrein]

I'm so happy to read your update. Go Natalie go!! And many hugs to you Jera. I hope you can bring that sweet baby home soon.

Looking at her pics, Natalie has really grown. She's beautiful. :)

Cindy and Anna February 2003

[Moneypenny]

What wonderful news! Thank you so much for taking the time to update us and share pictures of your beautiful little fighter!
Susan
mama to my cutie pie, Avery
http://www.gynosaur.com/assets/ribbons/ribbon_gold_12m.gif[/img][/url]
We made it to a year!

[ribbit1019]

Thanks for the update on your precious little angel Jera! Natalie is definitely a fighter, I am glad she is doing so well.

Hugs to you again! I am sure it is so hard dealing with all this and missing your other two little ones.

You are an amazing woman!

Christy
"My Mommy" to Maddy born 06/09/04
http://lilypie.com/baby2/040609/3/4/0/-5/.png
and soon to Little Man due 03/02/06
http://bd.lilypie.com/cKLom4/.png

Join the BBB Preggo Pals!!
http://s14.invisionfree.com/BBB_Preggo_Pals/index.php?act=Reg&CODE=0

[mharling]

What a sweet little fighter!! And how wonderful that you and dh both get to hold her. She is simply amazing and I hope she can experience her first Christmas at home. Big hugs to you and thank you for the update and pictures.

Mary - Some days work. Some days don't.
Lane - April 2003
Faye - March 2005

[elliput]

Thank you for the update. You have such an amazing little fighter!

[nd93]

What a beautiful Daughter!! How can someone so little pull out her tubes?!? Amazing, she obviously has her own ideas and wants to be heard! You are all being so strong. Thank you for the updates. Here's to more continued good news!

[TraciG]

I am SO HAPPY Natalie is doing so well, I pray she will come home for Christmas !!!!!!!!!!!

[tarahsolazy]

YAY Natalie! You go girl! She looks great, I love the last pic, preemies love to stretch out like that.

Don't be too worried if she goes home on oxygen, Jera, it seems daunting, but most families say its no big deal.

I hope you get your Christmas present.

[steph2003]

She is a little angel - thanks for sharing the update & photos. We are all still pulling for her!

[SweetTooth]

What a miraculous little fighter! I continue to keep her & you all in my thoughts. Thanks for the pictures. You can tell she has grown quite a bit. Sending positive, healthy, growing vibes your way....

[CiderLogan]

I'm so glad you updated - and with such great news! I think of you often.

Jenny
Mom to Julia, 8/03
...and another one due 5/29/06!

[khakismom]

She is an ANGEL Jera! You and Natalie are in my prayers every day! Thank you so much for sharing her with us! HUGS!!!!

[Tori_s mom]

Jera,

Your news and pics brought such happy tears to my eyes. I check the lounge regularly for updates on Natalie. She is an amazing baby (as I'm sure you agree). I'll keep your family in my thoughts and prayers and hope Natalie can come home for Christmas.

Hugs,
Tasha

[ErinMC]

Jera - Thanks for the wonderful update! Brings tears to my eyes every time we get another update on her improvements. :-)

Erin

Mom to Chase Feb. 2004
... and another coming in June :-)

[mamicka]

I can't even get through your whole post, I'm crying. That's such great news! The pictures are precious - it's good to have her sweet little face in mind head while praying for you guys. Please, keep them coming!

Allison

[R2sweetboys]

Jera,
Thank you for taking the time to come here and let us know how you, Natalie, and your family are doing. I find it amazing that you even come here at all considering how busy you are. As many PPs have mentioned, many of us really look forward to hearing about you! I'm so glad that Natalie is doing so well. She is just beautiful. :)


What a blessing that your parents are able to help you out by taking your older kids. I can't imagine how hard it must be to take care of your other children while also spending time with Natalie,taking care of your home,etc. You are clearly a very strong woman and I know you inspire me and many other people. I hope that sometime soon you are able to sneak in a little time to yourself just to take care of YOU. You certainly deserve it! God bless you and your family. Sincerely,

~Leslie

SAHM to...
Ryan 8/14/00
Matthew 2/14/03

[amp]

Jera, it's always so nice to see you here and to hear you bringing good news! HOnestly, the only thing I can think to say is that your girl has a fierce fight in her and I'm sure she got it from you. The both of you, and your family, continue to amaze me. I'm honored that you continue to share Natalie's life with us. She is simply amazing.

[jk3]

Jera,

Thanks so much for taking the time to write such a detailed update. I am so happy that Natalie is such a strong little baby. I hope she continues to impress everyone around her and that she is able to go home as soon as possible. Thinking about your family,

Jenn
DS 6/3/03

[8isenough]

She is so precious! Thank you for keeping us updated. You have much to be thankful for this Thanksgiving. I will continue to pray for you and your family. (love the last pic of her with her little footie kicked up. :) )

Sterling

[calebsmama03]

Thank you for the update! You both continue to be in my thoughts and prayers. Go Natalie!!!
Lynne
Mommy to C 3/03
http://www.gynosaur.com/assets/ribbons/ribbon_emerald_18m.gif[/img][/url]
And Miss Purple, 5/05