Sharon on Sipap

Hopefully this video works, it's taken me a few tries. Enjoy!

Update & a few pictures

I just wanted to give everyone an update on Sharon. Yesterday they switched her from the breathing tube to Sipap, which just has short prongs that go into the nose & blow minimal amounts of oxygen, requiring her to breathe much more for herself. She's been doing really well on it, & hasn't had any problems with her oxygen saturation even when does get upset. We have been really pleased with her progress since her surgery. She's recovered really well, & is having virtually no breathing troubles anymore.
I took this picture today because she is wearing a little onesie. It's still a little big, but she looks so cute! One new thing since she's had the breathing tube removed, we can actually hear her cry, & cough & sneeze. It's kind of sad hearing her cry, especially when I can't do anything to help her. She does love her pacifier, & it usually helps to calm her down. Hopefully she'll suck that well when breastfeeding because she sure goes to town on the pacifier! Here's a picture of her on her stomach so that you can see the incision where they went in to do the PDA surgery. It's about 1 1/2" to 2" long, pretty big for her. It's healing well & hasn't shown any sign of infection, which is wonderful!
Sharon did get past the 4 lb mark, but it was because she was retaining tons of water. She has lost that water weight, and went back down to 3 lbs 10 oz yesterday. She is back up to 3 lbs 13 oz today, and is growing quickly. She's now getting 1 oz of milk per feeding & loves feeding time. She is also maintaining her own body temperature. We weren't expecting them to have her do this so quickly, but she seems to be doing fine, and is always nice and warm. If she has trouble they will just plug her back into the bed so that it will compensate if she gets too hot or too cold.

We are so excited with all of Sharon's progress & can't wait for her to be able to come home! It's so nice to hold her without all the extra tubes & wires, and will be even greater when it is just her! Thank you for all your prayers, we know that they've been heard and answered on Sharon's behalf! We love you!

A short video of Sharon in the hospital

I thought you all might want to see a video of Sharon. We recently bought a video camera, & I thought it would be nice to share this because we only have a list of four people that can visit her with us, so this way you all get to see her. She is all hooked up to various IVs, ventilator & monitors because of the surgery she had recently. She is doing really well, & is really enjoying the morphine & sedative they give her to help with the pain. We are doing well & will share more videos as we take them.

Quick Update

I just wanted to let you all know that Sharon's surgery yesterday went very well. There were no complications, & she was already awake when we got to see her. We are hoping that this will help with getting her off of the ventilator and breathing on her own. The surgery was to close the PDA vein that's just outside the heart.

Daddy's Little Girl

October Scrapbook Pages

Baby Scrapbook Pages

Kangaroo Care

Since Sharon has had this bacteria, we've had to wear gloves, gowns and masks, which means that I haven't been able to do Kangaroo Care with her. Kangaroo Care is skin to skin cuddling with the baby and mom. I got to do it twice before the gowns, but haven't been able to do it since. Sharon's doctor recently got the approval for us to do Kangaroo Care again, and I am so excited! We did it on Saturday, and it was so wonderful! She is so soft and warm, and fits so well down the front of my shirt, just like a little joey. Maybe we'll start calling her Shari Jo =). Here's a picture of the new Grandma with Sharon!

The flowers on her moomoo were pink

I just thought you all might get a kick out of this moomoo that Sharon was wearing yesterday when we went to visit her. I sure got a kick out it! It was very loud!
You might notice how red and puffy her eyes are and that's because of the eye exam she had just as we got there. I wondered how exactly you give an infant an eye exam? "Please read aloud the 3rd line of letters." Wait, she can't read! Really the doctor just is checking the retinas to make sure they are disease free and forming correctly. Her eyes are good, aside from being underdeveloped simply due to her age. Her eyelids were all red from the doctor trying to keep them open so that he could actually see her eyes. She wasn't too thrilled about that!
I got to hold her yesterday, and she's certainly feeling heavier, and is easier to hold as she gets bigger. She is up to 1350 grams, which is still just under 3 pounds. They did an echocardiogram on Monday and we heard the results yesterday. The PDA (the vein in her heart) hasn't closed but it is small, so they are not planning on doing surgery in the immediate future (huge sigh of relief). They have also upped her feeds to 25 cc of milk every three hours, which is awesome, because I am really running out of freezer space.

Almost 3 pounds

That's right, Sharon is almost 3 pounds. She is up to 1340 grams and looking so good! She is still very congested & stops breathing periodically, but she is doing well. She's still digesting her milk, which she gets ina dose of 23 cc every 3 hours. She is looking bigger each time we see her. We both got to hold her on Sunday & it was so nice! We are excited for the progress she is making.

Congratulations Meghan!

My sister Meghan got engaged a little over a month ago and I never posted about it. I did take some engagement pictures for the happy couple this morning & just wanted to share a couple of the pictures from the shoot. I think they turned out well. I'm sure it helps that they are super happy just to be around each other. Congratulations Sis!

Shh...the baby's sleeping.

We took this picture yesterday.

One month update

This picture was from the 29th, when Shari was still on the Sipap breathing machine. She did fairly well on it, but did end up getting too tired, so they put her breathing tube back in on the morning of the 30th. She received two blood transfusions to help with her oxygen saturation, but it wasn't quite enough to keep her breathing on her own. She is much more relaxed now that she doesn't have to breathe all the time, and she looks much better rested.

I took this picture yesterday. Just so you know, this is a yawn, not crying. I got to hold her for about an hour and a half yesterday (which is just about all my arms can handle). It was nice to be able to hold her again, because it's been about a week with all the drama she's had. Yesterday she was up to 1210 grams, which is just over 2 lbs 10 oz. We are looking forward to 2 lb 12 oz because that will mean she'll have gained 1 whole pound since she was born. Oh, she is now one month old by the way, and we are so excited about that!

Sharon has become a favorite of some of the nurses because she is such a good baby. She is very good about telling the nurses what she wants, and then going back to sleep once they've given it to her. She'll wiggle a lot if she doesn't like her position, and then she'll snuggle in when they move her. If she doesn't like what you are doing she puts her hands up to her face or puts her hand out to say stop. She is doing really well, and we love seeing her little personality shine! I'm thinking of making her a halloween costume, which will consist of a white crocheted beanie with a crocheted spider on it. I think it would be really cute, I just hope the nurses will let her wear it. I'll have to post a picture once I make it.

What a handful!

When we got to the hospital today, our favorite nurse told us that Sharon had pulled out her breathing tube this morning at 6 AM. I guess she just got tired of it again (since this is the second time she's pulled it out). They put a different breathing device on her that just goes over her nose & pushes oxygen mixed with regular air down her nose, and requires a lot more breathing on her part. She has to breathe in order for the oxygen to get all the way into her lungs. We think she looks like a very strange elephant, but she seemed a little happier to have more room in her mouth. She's lasted about 12 hours this way, rather than just the 6 hours that she lasted last time.
She's up to 2 lbs 6 oz now, but will probably have lost some when they weigh her again because of how hard she's having to work to get enough oxygen. She definitely looks a little chubbier & we love seeing her grow!
So, there's the update on our ornery little girl.

Sorry it's been so long since I updated. I've gotten requests for an update, so here it is, along with some pictures from this week. You can see in them that Sharon has started filling out, mainly due to her good digestion of the milk she's getting. Here's a picture with her little dog beanie baby, just to show a bit of scale.
On Monday, Sharon reached her highest weight ever of 1050 grams, which is around 2 lbs. 5 oz. They started weaning her ventilator support as well, to try to get her to start breathing on her own more. Unfortunately, the bacteria in her throat and lungs is causing extra secretions & Sharon was struggling to keep up her oxygen saturation. After a couple of very stressful days of having her crash on her oxygen, they bumped her vent support back up, and she's had two great days. She certainly is more active when she's got more oxygen, and it's good to see her moving around a bit more.

I like this picture of her with the hat on, mainly because I think it makes her look like a grouchy old lady. They have started treating her with an antibiotic for the bacteria in her throat, since it is basically acting as a pneumonia by causing all the congestion in her lungs. Hopefully with this treatment it will help her be able to breath a lot better.I took this picture yesterday when she had her eyes open really wide. You can see how light her hair is, and we are kind of wondering if it might have some red in it. It's hard to see how cute her face is with it all taped and squished like that, but take my word for it, she's the cutest baby in the world (and I'm not biased at all!).

She is now up to 19 ml of milk every three hours. She's doing well digesting it, and has very interesting looking poop because of the milk (it's totally normal, I just hadn't ever seen breast milk poop before).

This picture is of Ammon looking through at Sharon. She was all bundled up like a burrito with her dog today. It was cute. Her nurse also stuck a little bow to her head & she looked so sweet!

I don't remember if I said that she is now 14 1/2 inches long and I will get an updated length on Monday. She is doing well, even with the bacteria problems. We love getting to see her & are amazed at her growth & strength! Thanks for all your love, support & prayers.

Just an update

It's been a few days since I posted an update, so I thought all of you might enjoy some news & a few pictures. Sharon is doing really well. She's been getting steadily larger amounts of breast milk each day & she's been doing a great job digesting it. She is up to 15 cc of milk, which is about half an ounce (I know, it doesn't seem like much, but she is pretty tiny). I called for an update this morning since we aren't going to be able to make it down to visit her today. This will be the first day I haven't seen her since she was born!
This picture was taken right after we got her settled into my arms to hold her yesterday. That is her "leave me alone" sign. She tends to do that, or put her hand up with the palm out, which means "stop." This is just her way of telling us that she doesn't like it and wants to be left alone. She will also get the hiccups if she gets too stressed, which the nurse told us is fairly common.

She is gaining weight well. She was born at 1 lb 12 oz and is now up to 2 lbs 4 oz. Her arms and legs aren't as scrawny as when she was born, and her little tummy is filling out as well. Her head is also looking so much better, since she's well hydrated & the bruising is gone. Her black eye is also almost totally healed.
She measured 13.5 inches at birth, and is now 1 inch longer at 14.5. She continues to do well, though she is up and down on her oxygen saturation, which is totally normally for a baby this small. She is still very grouchy when it comes time to change her diaper and other things that require her to be moved around.

We were comparing some of the first pictures we took of Sharon with this one that we took yesterday. You can tell that she has grown because she fills out her skin better. Her arms and legs are bigger & her stomach is definitely rounder. Her skin is also not as translucent as it was.

We are excited for her progress & continued growth. Thank you again for all your help & prayers.
Also, a special thanks to the Relief Society sisters in both the Hualapi Foothills & Kingman Wards for their gifts. You have no idea how much they are appreciated, and how they fulfilled specific needs. We love you & are amazed at your willingness to help so freely! Thank you!

Joy & Sorrow

This morning I was reading a post from one of my friends about joy & sorrow, & I really got to thinking about our current circumstances. I know that a lot of you might read my blog posts about Sharon & think, "Wow, she's taking this really well!" Yes, it may seem that way, because I really do try to think positively, but I want you to know, that in those quiet moments during the middle of the night (usually while I'm pumping), it is hard to keep those nagging, terrifying thoughts from creeping in. Those are the hardest moments, when I start to worry about the future & whether I will have my little girl much longer. I am constantly amazed at her strength & fight, & hope that I can be half as strong as her! I know that Heavenly Father is most definitely in control of things, but not having a crystal ball that allows me to see the future makes it hard to keep from worrying.
I pray every day that this beautiful girl will be allowed to stay with us for a very long time. I can't even imagine the pain I would feel if she were to be taken back after such a short time. Even just thinking about it has brought tears to my eyes. But, I also know that we are an eternal family. Just because I am in a tough spot doesn't mean the truths learned in Holy temples stop applying. I know that my sweet Sharon is mine for eternity & that if I don't have the opportunity to raise her now, I will later. I don't believe that a loving Heavenly Father would take her away & not let me see her again. I have never known the kind of love that I feel for this amazing child! My heart has grown beyond measure in the last two and half weeks & I know that I will never be the same.
I am grateful for my husband, for his strong testimony, & for his ability to keep me grounded when I feel like everything is beyond my control. I am grateful that he understands that sometimes I just need to cry. The crying doesn't mean that I have lost faith, or that I am afraid, it just means that I have too many emotions & thoughts & feelings inside & crying seems to be the only way they are able to be released.
I am also grateful for the church hymns & the children's primary songs, because I know that they teach basic gospel principles that are true. Music has always been the fastest way for the Spirit to touch my soul, & I know that I have gained my testimony largely through melody & harmony & eternal lyrics. They speak peace & comfort when nothing else can!
Sorry for this long post. Conversation of joy & sorrow just got me thinking about this time of life. I have felt the greatest sorrow, fear, & worry in the last two & half weeks, but I have also felt the sweetest joy & happiness & peace. I know that my Heavenly Father loves me, & loves Sharon. I know that this experience is changing me, shaping me into something better. It surely hurts, but I can tell that I am going to be so much better off when it's all said & done.
Thanks Angela for reminding me of the blues!

Hello Daddy!

Yesterday was a good visit to the hospital. It was Ammon's first time holding Sharon, & it was so exciting! He is such a good papa! He was kind of scared because she is just so tiny, but I think he was able to get over than after holding her. It looks like the weird bacteria has disappeared. We will know for sure today as this is the last day of the culture, so we are hoping it is gone so we don't have to wear the gowns, masks and gloves anymore. Shari's belly button scab fell off, so now we can see her cute little belly button. She lost 5 grams yesterday, but is still at 895, which is right at two pounds. The echocardiogram showed that the vein in her heart is still open but is small to moderate size. We are hoping it will still close on its own, and the doctors are keeping an eye on it for the next few days. She was doing really well. They are going to be slowly increasing the amount of milk she gets after every third feeding. She is pooping well on her own, and actually filled her pants just before we left yesterday. Good girl! We love our tiny baby & thank you for all your prayers on her behalf! We know that those prayers have been heard as she has been doing so well!

A good way to lose weight

So Sharon has some kind of bacteria growing in her throat that isn't really supposed to be there, so she is in isolation until further notice. What does that mean for us? That means that we have to wear gloves, gowns & masks. I did get to hold her yesterday (which is when this picture was taken), though not today because she was getting a blood transfusion. All the stuff we have to wear makes it even hotter in the room, & makes us sweat a lot more. We haven't stayed very long lately because it is just so hot in the room & under the plastic gowns. She is still doing well, & weighs just under 2 pounds right now. She is being fed 2 cc of milk every three hours now & she is doing fairly well. The vein in her heart is still open & causing some problems with her oxygen saturation, but that's fairly normal. We have to wait until Monday to find out if this bacteria is something to worry about, since Infectious Disease Control apparently doesn't work on weekends. We are still positive & love seeing our little girl! Her eyes are opening more frequently & a bit wider, & she looks so sweet with them open! Thanks for your continued prayers!

Her eyes are open!

When my mom and I got to the hospital to visit Sharon today, the nurse told us that her eyes are finally open (they've been fused shut since she was born). We were so excited & just hoped she would open them while we were there!
We got our wish & got to see her little eyes open a little bit. She didn't like the bright lights, so the nurse shaded her face a little so I could get a picture. She had them opened more, but squeezed them shut with the lights on. So, this picture is as good as I got today. Doesn't she look sweet!