the latest ups and downs with Natalie

[JenaW]

Thank you all so much for your continued support and prayers. You have no idea how much encouragement I get from coming here and reading all of your responses. I started to post last night. But after logging on to another message board and learning that a friend's baby had been diagnosed with trisomy 18 at birth (they had NO IDEA despite multiple ultrasounds and visits with a perinatologist), and then taken off of life support, I was too emotional to post. This mom has been through way more than her share of pregnancy heartache (more than 5 losses, SEVERE postpartum hemorrhage nearly leading to a hysterectomy after the birth of her daughter), and the diagnosis and now death of her new baby seems even more unfair. I can not even begin to imagine how she is dealing with all of this....

As for Natalie, the past few weeks have been full of ups and downs. With Natalie off the the vent and on nasal canula for a while now, we were hopeful that she would make it home by her due date around Christmas. Last week she starting making progress with oral feedings - on two separate occasions she took a full feed (24 cc's of fortified EBM) by bottle from me, and several other half feeds from nurses. She has also latched on several times, but more for just play...she hasn't really gotten much nutrition from breastfeeding yet, but I will keep trying. So we thought things were going well. However, during the past few days Natalie started having more "B's and D's" (episodes where she drops her heart rate and her oxygen saturation). Yesterday, after taking most of a feed from a bottle, her nurse noticed she seemed pretty stressed and was breathing very fast. I had wondered several times in the past few days if these "episodes" were being caused by an aspiration pneumonia, since during her first oral feed late last week she seemed to have aspirated a few cc's of milk. They FINALLY ordered a chest x-ray last evening, after I brought it up again. The x-ray was inconclusive. Last night they were not sure if the haziness in her lungs was from something pathologic (i.e. a pneumonia) or just from her "normal" damaged lungs. When I called last evening the nurse said they were discussing putting her back on the ventilator as a precaution, so it could be done in a controlled manner, before she got too tired from breathing and it had to be done emergently. They promised to call me so I could be there if that was the case, and when I woke up at 4am and hadn't heard anything, I called again. Apparently, she had stabilized somewhat and they decided to watch her for the time being. This morning when I got to the NICU she was still breathing faster than normal, and was requiring much higher oxygen than previously (up from a low of 23 when she first came off the vent and CPAP - probbaly due to the help of the steroids, to the mid 30's last week, to a high of 60 today). A second x-ray earlier today pretty much ruled out pneumonia, but did show definite fluid around her lungs. So they decided to give her additional breathing treatments and some diuretics ("water pills"). They also held her 2pm feeding because they did not want to give her any additional fluid. When I left this afternoon, she was still doing about the same - not any better, but definitely not any worse either. The resident was pretty pessimistic about her condition, but when I spoke to the attending, he said he did not really consider this a setback, and said it was not at all unexpected given how sick she was for so long. He went on to say he is pretty certain she does not have pneumonia (which WOULD have been a major setback). The plan is to let her rest for a few days (i.e. higher oxygen so she is not working as hard, no oral feedings, low stimulation) and see how she responds. He also told me in his opinion it is "extremely unlikely" (direct quote from him, but he has been wrong about Natalie before) that she will make it home for Christmas. He thinks she needs a few more weeks in the NICU, and then maybe as much as A MONTH OR TWO!!! at a transitional care unit (sort of like rehab for an older patient). I am praying that he is wrong, but in my heart, I think I already knew she wouldn't be home for Christmas. I guess I should be thankful I still have her - there were so many times in the beginning we thought she was going to die - and I am!! I was just hoping to have a happy Christmas at home with my family, and now it will be quite bittersweet.

Anyways.....

I'll share a few recent pics. The first two are of her immediately after she came off of the CPAP. You can see the ventilator still hovering in the background. They kept it in the room for several days "just in case." The other two are of Natalie and I kangarooing (holding her skin-to-skin) the day after she came off of CPAP.

Thanks!

Jera

http://img.photobucket.com/albums/v636/gwn76/PB140256.jpg

http://img.photobucket.com/albums/v636/gwn76/PB140258.jpg

http://img.photobucket.com/albums/v636/gwn76/PB150327.jpg

http://img.photobucket.com/albums/v636/gwn76/PB150312.jpg

[wencit]

Oh my goodness! The first thing I noticed in those pictures is that Natalie is definitely getting bigger. She's not as teeny tiny as she was when she was first born. That's a positive sign, at least!

Continued well wishes and good thoughts to you and Natalie...

[billysmommy]

Jera,
Thanks for the update. Natalie is beautiful and getting big :) We are thinking of you guys every day and sending lots of "grow big wishes"

[new_mommy25]

You have a beautiful daughter. Thanks for the pictures. You are a strong mama and I admire you. I will continue to keep little Natalie in my thoughts.
Hugs,

[kfcboston]

Oh gosh, Jera, the kangaroo shots are just so precious I wanna cry. Go, Natalie, go! She is so lucky to have a mama like you.

[ErinMC]

Wow, she is so much bigger than the early pictures! Thanks for sharing Jera. Even though she probably won't be home for Christmas, at least she is getting wonderful medical care and is progressing.

I'm so sorry to hear about your friend's baby, too.

Erin

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

[bostonsmama]

Hey Jera, Glad you're hangning in there! I was thinking about you the other day when I saw a show on premies in the NICU. Our prayers continue to be with you and your family (especially as Natalie makes this delicate transition from the ventilator to the O2 tube).

Edited to delete question.

Hugs mama. You two look so peaceful with each other. Great pics.

Praying for a home-by-Christmas miracle!

Larissa
who's gettin in the holiday mood

"Children have never been very good at listening to their elders, but they have never failed to imitate them." -
James Baldwin

[ismommy]

Oh my look at her eyes. She is a beauty in her little pink hat. Thank you for taking the time to update us. I wll continue to send good thoughst and hope she will be home for Christmas
Helene
mommy to Isabella
and Gunner
http://www.mothering.com/discussions/images/smilies/candle.gif

[icunurse]

Oh! She's getting so big!! I will keep all of you in my prayers
Traci
~Connor's Mom 02/2004~
Agency paperwork completed - waiting for #2!

[jd11365]

Jera, she is so precious! Thank you so much for sharing with us. We continue to think about you and Nataile and you are always in our prayers.

[almostamom]

Jera, I'm so incredibly sorry for your friend. What a devastating loss.

Thank you for the pictures of Natalie - she's absolutely beautiful. She is a fighter! :) You all are in our prayers every day.

Hugs,
~Linda~
DS 11/9/04

[karolyp]

Oh my, she's gotten so much bigger!! Thanks so much for the update. As always, you and your little one are in my prayers.

I'm sorry about your friend's loss too.

[jk3]

She's precious. Your family continues to be in my thoughts. Thanks for the update.

Jenn
DS 6/3/03

[ribbit1019]

Oh Jera! That is so heartbreaking about your friend. I can understand needing to take a breath after news like that.
You and Natalie are such a strong pair. There is no doubt that she is very much like her mama! I am so sorry about the news about Christmas. I pray that next Christmas (and all the ones after) your wonderful family will get to be together.
Thank you for the pictures, Natalie is so beautiful!

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

[tarahsolazy]

She looks great! Hopefully she'll rest up the next few days and be ready to nurse again, at least "for fun" soon.

This does not sound like a big setback to me, either, not that you asked my opinion:)

[brittone2]

What a gorgeous little girl you have! She is definitely getting bigger...wow! I love the Kangarooing pics...she looks very content to be snuggled with her mama.

I hope that this is all just a temporary setback and will all resolve itself soon. I'll continue to hold you both in my thoughts.

[candybomiller]

Jera,

I'm very sorry to hear about your friend.

Natalie is absolutely beautiful. You and your family remain in our thoughts and prayers.

[tarabenet]

Oh, Jera, she's looking so much bigger and stronger! What an amazing little girl, and what a strong family, too. Christmas would be special, but it is an artificial deadline for a homecoming. As long as you do have her, that is a pretty amazing miracle right there. But I'll still be keeping my fingers crossed for a Christmas at home, you know!

[mudder17]

Wow, she's grown so much! Jera, I've been thinking of you and Natalie a lot lately and I'm sorry she won't be home for Christmas, but I'm also glad she's made a lot of improvements. I will continue keeping her (and you all) in my prayers.

Lots of love,

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

[Ryansmommy]

Hi Jera
She is so beautiful!!
I have never posted before but I have been follwing Natalie's progress and just want you to know that you and your precious little girl are in my prayers every night.

Dawn

[lisams]

I was just thinking of you guys as I was logging in! She is just so beautiful, her eyes are so bright!

I'm sorry to hear about the downs and that she may not be home for Christmas. I can imagine that is very frustrating and sad for you to not know for sure.

I think about you guys daily and always look forward to updates and pictures. I'm praying that you will have more "ups" here very soon!

[pritchettzoo]

The picture of her holding your hand is breathtakingly beautiful.

Anna
Mama to Gracie (Sept '03) and Eli (July '05)

[american_mama]

Jera, her hands in those kangaroo shots are so precious, and she's just embracing you like it's the best place in the world to be. I'm sure it is! December is not even begun yet, and I hope Natalie has a few positive surprises in store for everyone over the next few weeks.

[jec2]

hugs mama. you are doing such an amazing job and it so lovely to see the two of you snuggled up together. just precious. I hope you get to have your sweet baby home with you soon.

[C99]

Oh Jera!

Those kangaroo photos are just precious. So beautiful!

I know it's sad that she won't be home with you for Christmas. But she's such a fighter! She will be home with you next Christmas and that will make the celebration so much the better. Big hugs to you. You (and Natalie) are AMAZING!

[aliceinwonderland]

she is gorgeous. I love the pics of you skin to skin. I hope she is home with you very soon!

[MarisaSF]

Dear Jera,
Thank you so much for the update and for sharing Natalie's photos. I am amazed by how much bigger she is. Keep growing, little one! That hat is absolutely precious.
I'm so sorry to hear about your friend. Please let her know she's got a lot of people (who don't even know her) thinking of her and her family!
I know from personal experience how hard it is to have a loved one in the hospital over Christmas when you really want your whole family together. Hugs to you all and Happy holidays!

[urquie]

what a precious little angel she is! thank you for keeping us updated. as always, you are in our prayers.

[tina-t]

She is so precious! You are all in our prayers.

I am so sorry for your friend's loss.

[s_gosney]

Jera-
I'm so glad to hear that Natalie is getting bigger and increasingly stronger. I can't imagine how long this road must seem to you. You are handling it with incredible strength. I will continue to pray for Natalie and the rest of your family.

[RwnMayfair]

Jera, she's absolutely adorable. :) Thank you for sharing the pictures! She, you, and your whole family are in my thoughts!

-Melissa

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

http://lilypie.com/pic/051122/0DU8.jpg http://b3.lilypie.com/11Vom5/.png
http://lilypie.com/pic/051122/bQLg.jpg http://b1.lilypie.com/9Ogqm5/.png

[jerseygirl07067]

Jera, thank you for the update. I think of you and Natalie often. She is an amazing fighter.

Marcy

[heidiann]

thank you for sharing the pictures, the last one of her holding on to your finger is just precious.
as always, you guys are in my prayers.


heidi
Jillian born 10/20/05

[kensjen]

Jera,

I'm so glad you took the time to share photos and give us an update. I think of Natalie and your family almost daily, and always wonder how you all are doing. She is just so precious!!

I hope your little one is home with you as soon as possible. She is such the little fighter, it won't be long. :)

Hugs mama! And I am so sorry about your friend. That is just awful. Tell her we're all thinking of her.

[HannaAddict]

Jera,
Natalie is just gorgeous. She is perfect and has such beautiful eyes. I love the photos. It sounds like she is doing really well, all things considered. I know that the breathing issues are so hard and can be so up and down, it has to be terribly hard. And, thank you again for taking your time to update us. I really do keep you and Natalie in my thoughts and am so happy to hear that she is growing and see you snuggling in the pictures. Keep growing little one. All my good thoughts.

Take care,
Kimberly

[darby24]

Thanks for sharing your cutie. She looks wonderful!

My thoughts are still with you and your family.

[kep]

Jera,

Thanks for the update. Natalie is such a sweet little thing, and she's growing so big. I can hardly believe she's the same baby as the first pictures you shared of her. She looks very content to be snuggling with Mama. Thanks for sharing your little girl with us. We'll be thinking of your friends, too. What a horrible, sad loss. Big hugs to them.

Kelli
Mommy to my beautiful little boy, Luke (April 2003)

Before you were conceived I wanted you.
Before you were born I loved you.
Before you were here an hour I would die for you.
This is the miracle of life.
Maureen Hawkins

[Tori_s mom]

Jera,

I'm so sorry to hear about your friend's loss. Bless her heart. I'll be thinking of her.

Thanks for sharing pics and news about Natalie. I've been stalking the boards for updates. ;) Even though Natalie's had ups and downs this week, I'm so amazed at how she's grown and how far she's come since she was born. She is a little miracle. Hang in there, mama! You and your whole family are still in my thoughts and prayers.

Tasha

[kimbe]

Keep up the good work Natalie!

She is such a cutie pie!

[jenmcadams]

Thanks so much for the update and the pictures. She is so gorgeous :)

[ctmom]

beautiful pictures of a beautiful baby. You are in my prayers...

Mary

[CiderLogan]

Thanks for the updates. She looks fantastic - much bigger and stronger than her previous pictures. I'm sorry you won't have her home for Christmas, but knowing she is there waiting for you has got to make you feel a little better, I hope.

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

[jbowman]

Continued prayers for you and Natalie, Jera. Thinking of you!

[papal]

Jera, sending you a big hug mama. Natalie is just beautiful and the kangaroo picture made my heart swell. Natalie is always in my thoughts and prayers. Sending her continued love and, support so she is home really really soon.

[brigmaman]

What a beautiful, strong babe! We'll continue to pray.

[steph2003]

continued prayers for Natalie & your family...

[McQ]

What a sweetheart. You and Natalie are always in my thoughts.

Allison
~ mama to Declan and Meghan

[bcky2]

what a sweetie!!! she looks so at home resting on you :) i continue to keep you in my thoughts and prayers.

[starrynight]

She is getting bigger! I'm praying for a Christmas miracle that she can come home. (hugs) hang in there, I'm glad to hear it's not pneumonia.

[zuzu]

Natialie is such a strong, sweet baby girl. You're always in my thoughts, and I'm hoping she gets to come home soon.


Melissa, mom to Sarah (5/03)

[barbarhow]

Oh Jera-What a heartbreak your friend has gone through. I am so sorry for her and for all the feelings that it must bring up for you.
The pictures of Natalie are wonderful. I am amazed at how much she has grown. She is an incredible little girl who is obviously thriving with all your love. Hang in there. I hope the next few days continue to make her stronger. Thank you for taking the time to update us.
Barbara-mom to Jack 3/27/03, a Red Sox fan
and Anna 5/12/05, my little Yankee fan!

[daniele_ut]

Jera - Natalie has grown so much! She is just beautiful, and those eyes!! They just draw you right in. I wish that there was some way Natalie could be with you and your family for Christmas, but I am SO glad that she is getting such excellent care and that she has been making so many improvements.

I am also so sorry to hear of your friend's terrible loss.

[pb&j]

Jera -

Continued well-wishes to you and your family. Natalie looks so big compared to the last pics! I'm sending you peace and strength...


-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)

[KBecks]

Jera, thanks so much for the update. I am sad for you that Natalie won't be home by Christmas, but my prayers are that when she comes home, she comes home REALLY HEALTHY.

I can only imagine the stress of going to the hospital all the time, not to mention the medical expenses. I'll continue to pray for you and Natalie and your family and that you all stay strong and close to each other while Natalie is getting better.

[crayonblue]

Natalie has gotten so much bigger! I love the last picture. I am continuing to pray for you and Natalie.

[alkagift]

Jera, Natalie is such a sweetheart, how beautiful she is! I hope this little break will allow her to rest up and get stronger. We're thinking of you often!

Allison
Mommy to Matthew, who is TWO!

[Zana]

She's so beautiful and I'm lost in admiration at your amazing strength. Prayers and wishes for her to come home as soon as possible!

[Dcclerk]

What a love! I can't get over how gorgeous that last picture is. You and your whole family remain in our prayers...

[saschalicks]

I cannot believe how big she's getting. It's amazing. Hang in there mama! Natalie is definitely a fighter...

[cinrein]

She's beautiful. And growing a lot just from the last pics you shared with us.

We still keep you and especially Natalie in our prayers. I think you are an incredibly strong Mama. I hope with everything I have in me that you can bring her home soon. To have her for Christmas would just be perfect.

Cindy and Anna February 2003

[missym]

Jera, thank you for the update, and for sharing the beautiful pictures of Natalie. She's wonderful!

Missy, mom to Gwen 03/03 and Rebecca 09/05

[kozachka]

Thank you for the update, Jera. Natalie looks so much bigger than in the last pictures you've posted. And those kangaroo shots are just precious.

Sorry to hear about your friend's loss, my heart goes out to her and her family. I can only imagine what you are going through but you are one amazing mama. You and Natalie are in my thoughts.

[dr mom]

The utter peace and comfort I see in her face when she's lying safe in Mommy's arms brings tears to my eyes - it takes me back to when my own DS was a newborn. There's noplace they'd rather be than snuggled up next to Mommy! Here's hoping you'll have Natalie home for good sooner rather than later - I know every moment you get to hold her has been precious to you, and hopefully soon the NICU will be but a memory. Thanks for sharing your beautiful daughter with us!

[muskiesusan]

Jera, thank you for taking the time to post an update and some pictures. Your baby is beautiful and I can't believe how big she has gotten.

I will continue to keep your family in my thoughts.

Susan
Mom to Nick 10/01
& Alex 04/04

[ilovetivo]

Jera, I'm not up on what you've all been going thru, but I read this post and want to give you my best. It sounds like Natalie's a little miracle baby. I love how she's holding your hand in the last pic. You seem very strong and brave for your little girl. Hugs and prayers for Natalie and your family.

[SweetTooth]

Jera,
You & your family continue to be in my thoughts. Natalie is darling & that last picture is so precious.

[daisyandacorn]

Thank you.
That photo of you holding her, and her holding onto your thumb is just beautiful.
Susan

[TahliasMom]

Jera - thank you for sharing the pics. she's so precious and i especially love the last pic. we'll continue to pray for you and your family. hang in there!

[wendmatt]

Oh Jera
Natalie is so beautiful, I;m so glad she is doing well. I don't post every time but I think of you often and hope she'll be home with you soon.

[TaChapm]

Oh Jera...she is so sweet. I hope and pray that Natalie will prove everyone wrong and be home very soon.

Tara
Mommy to Jackson 11-10-02
Tyler William 6-9-05

http://b4.lilypie.com/p1eI0/.png[/img][/url]

http://lilypie.com/baby1/060609/3/0/1/-6/.png

[tippy]

Thank you for your post and updated pictures. Natalie really looks terrific. I can't help remembering the picture with your DH's wedding band. She's come so far. The kangaroo pics are amazing. So are you. Your strength and poise are an inspiration. I hope you get to take your gal home soon!

Teva
Mom to AJ born 1-8-03