Eye Exam and Stuff

Sydney had another eye exam today and it shows that the ROP is still there but looking better. She will have tests weekly to make sure the condition continues to improve. She also had her shots yesterday and she is worn out from them today. Between the shots and the eye exams, she has ZERO energy. They have to dilate her eyes each time and it's quite stressful for her. A nurse told us that they even had a baby who had to go back on the vent for a few days everytime he had his eye exams because they are that bad.

She had a few apnea and brady episodes (breathing and heart rate drops) today but they didn't last long and were totally expected by the doctors and nurses. No bottle feedings were done so that she could just rest and recover and get back to being her usual happy self.

She's pooping, peeing and tolerating all her feeds so that's a very good thing. B and I were told to register for our CPR class now because she's getting ready to come home. We will do the class this Friday. We're also going to spend a night at the hospital in one of their suites and care for her for 24 hours under a nurse's supervision. This is the home stretch!

Day 67!

Little Miss is doing great and even took three full bottles yesterday. We're going to try her with 4 bottles today and see what she does. Feedings have also been increased to 38ccs and she's tolerating it well.

Weight is 4lbs 11.5oz this morning!

Good Eats!

I called the nurse yesterday and let her know what time we were coming so she held the bottle feeding so I could do it myself! It was wonderful watching her eat like a big girl. She makes us so proud. The nurses say she keeps pulling her feeding tube completely out of her mouth, so I'm thinking she's over it. Watching her drink from the bottle is like watching someone run a marathon because it takes all her energy to keep breathing while getting the food in. Her heart rate goes up and her breathing sounds exactly like it sounds when someone is running. She never appears distressed though, just very focused. :laugh: She took 25 ccs from the bottle before she sealed her lips and REFUSED to take another drop. She spent the rest of the time smiling continuously at me.

I was soo surprised at the size of the space she occupies now. The closer the babies get to going home, the more their space shrinks and the closer to the door they literally get. She moved from her fancy private room to a private corner to a little private 4x4 space in the newborn nursery now. :rofl: The nurses say that when she can tolerate full feeds for 48 hours she should be able to come home. Of course, the final say lies with the doctors so nothing is concrete at this point.

Without further ado...pics!

What she did as soon as we walked in the room:




It doesn't look like it but her the feeding tube is not in her mouth. It is pulled out before every bottle feeding but we hadn't removed the tape from her face.

Day 65

Sydney took two FULL feedings from a slow flow bottle yesterday! This is huge, people! HUGE!!! The more she tolerates getting her meals like this, the closer we get to getting rid of the feeding tube. She really doesn't need either the tube or cannula to be removed as a requirement for her to come home. Hospitals send home many babies who are right where she's at. It could be verrry soon. I really, really hope so.

It had been 1,2,3,4,5,6,7,EIGHT days since I last saw my baby...but who's counting? We shall be reunited today and if you listen carefully you should be able to hear my squealing when we get there. :laugh:

Weight is 4lbs 9oz today. Woot!

35 Weeks!

Sydney is doing great in her open bed! She's had no problems maintaining her temperature and she's so much more alert these days. Her feedings are now at 35ccs and that resulted in a 2oz weight gain, bringing her to 4lbs 7oz. Awesome!

Daddy didn't get many pics last night. This is what happens when the crazy Mommy isn't there squealing, "take a picture! take a picture!" :laugh:

One from Christmas Day:



She was being changed and she was not loving it.


Bright eyed and bushy tailed! Since we lose most of our body heat from our heads, she's wearing two hats to keep her warm. She's also sucking hard on her feeding tube. It's her favourite thing to do.

Nine Weeks Old!

Sydney was moved to an open crib last night! Yay! She's been doing a great job keeping her temp stable too. She's such a big girl.

She's tolerating her feedings really well and took some more without the tube. She's had no oxygen desaturation and her vital signs are great.

She weighs 4lbs 5oz this morning. :)

Ultrasound Results!

Today's ultrasound results show a MILD amount of fluid whereas the last one was moderate. This means that the condition has actually improved but has not totally resolved itself just yet. Our daughter is determined to teach us patience. :laugh: There is no bleeding either. Hallelujah!

Now we have to wait another few days for the neurologist to compare this ultrasound to the previous one and determine if they still want to continue with the wait and see approach.

Keep on praying!

But as for me, I will always have hope; I will praise you more and more. My mouth will tell of your righteousness, of your salvation all day long, though I cannot count it. Psalm 71:14-15

Day 62

Little Miss weighs 4lbs 3oz this morning! She's more active than she was 2 days ago and all her vital signs and bodily functions are great. Her feedings are still at 32ccs and she's took about 5ccs from a bottle at her last feeding. I'm soo ready to be over this cold so I can go feed her myself!

Her cranial ultrasound was done this morning but the radiologist hasn't looked at it yet so we will get those results this afternoon.

Thank you so much for your prayers.

Third ROP Exam

Sydney had her third ROP exam earlier today and the tests show that her eyes look about the same - a very mild case. The fact that there has been no deterioration is a VERY good thing! She will have another follow exam in 1-2 weeks to check her eyes again as she continues to grow and her eyes mature.

Praise The Lord!

But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed. Isaiah 53:5

Merry Christmas!

Baby Girl is officially 2 months old today. Thank You Jesus for coming so that she could have life and have it abundantly. She weighs 4lbs 2oz and is doing wonderfully on her oxygen support. We are counting our blessings.

Pics!

Christmas outfit brought to you by Grandpa Ron and Aunt Janis








Enough already Daddy!

Day 60

Sydney weighs 4lbs 1oz this morning, so she has been averaging one ounce per day. Her doctors are happy with that.

She's still very lethargic and they haven't quite figured out the reason. She was squirming around on her bed yesterday but she was never awake for very long at all. The doctors didn't think much of it but the nurses that have cared for her in the past agreed that this is very much unlike her. She also was breathing very fast yesterday and they ordered a chest X-Ray and it showed no problems. We're praying that she's just tired from all the growing that she's been doing.

Unfortunately, I have a cold and that means I can't go anywhere near her. I'm thinking she could use some Mommy snuggles but it will do more harm than good at this point. My Mom and B will go see her today so hopefully she'll be awake and alert while they are there.

Indeed, in our hearts we felt the sentence of death. But this happened that we might not rely on ourselves but on God, who raises the dead. He has delivered us from such a deadly peril, and he will deliver us. On him we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many will give thanks on our behalf for the gracious favor granted us in answer to the prayers of many. - 2Corinthians 1: 9-11

Great News!!

Our little burrito weighs EXACTLY 4 pounds this morning! Woot! It's also been 36 hours since they have had to increase her oxygen support while she eats and she has had no major saturation problems at all.

She's been sleeping a lot over the past 2-3 days and only wakes up at bath time or when she's being changed. She slept throughout our entire visit yesterday, which is unlike her. Her vitals look good though and her blood work is fine so the medical team suggests that she's just hibernating so she can come home and keep us awake all day and all night. :laugh:

Day 58!

Sydney weighs 3lbs 14.5oz this morning! She continues to improve on her breathing and apparently enjoys being on her left side. She does best when she is in that position
and has no saturation problems.

Shout for joy, O heavens; rejoice, O earth; burst into song, O mountains! For the LORD comforts his people and will have compassion on his afflicted ones. - Isaiah 49:13

34 weeks!

Sydney weighs 3lbs 13.75oz this morning! We're sooo close!

Over the last 24 hours she has been doing much, much better with keeping her oxygen saturation up while eating. She still has a few swings but she's definitely improving. Thank you all for you prayers. Keep 'em coming.

Everything else is just fine with her. :)

EIGHT Weeks Old!!!

Miss Thang weighs 3lbs 11.5oz! 8 weeks seemed so far away when we started this journey and look, here we are. God is awesome.

She's trying to learn how to keep breathing effectively while receiving her feedings and having some slight difficulty with it. One week ago she was eating 24ccs over 1.5 hours and now she's at 32ccs over an hour. It's quite an adjustment for someone her size so she's trying to figure out how to handle it all. In the meantime, they increase her oxygen support while she eats and turn it back down when she's done. Please pray that she continues to improve and figures out how to do both things at once.

Today she gets to meet her maternal grandmother and she told me she's VERY excited! ;)

One ounce!

Sydney's feedings have now been increased to 32ccs and she's doing really well. The doc also started her on multivitamins to help build up her immune system and get her ready to come home. :cry: Preemies are 10-20 times more susceptible to infection and illness than full term infants so we're doing all we can to get and keep her strong.

The therapist worked with her today and she was able to handle 5ccs of milk that was fed to her slowly, through a syringe. She digested it all but she was not in the mood to ingest anymore than that. :laugh: Tomorrow, we will try her with a little more and keep increasing it each time until we can get her feeding tube removed.

She's in a great mood today too and smiling at everyone body who even glances at her. :love:

Day 55

Sydney weighs 3lbs 10.5oz this morning and her feedings have been increased to 29ccs. She's 1cc away from getting a whole ounce! What a big girl! She's great with her breathing and they have her down to her lowest setting ever as of this morning.

We also started her on getting a few ccs of milk orally and she handled it really well. When the first drops hit her mouth she looked around as if to say, "What ARE you doing?!?!?!" and spit it right out. :laugh: Then we gave her the rest and she ate it all like a champ.

This picture makes me laugh:


These pictures of us look so huge, I fear they may scare her everytime they turn her around. My poor child.

For all you worrywarts....

All is well in Sydney's world. Weight is the same as yesterday and that ok since she had big gains over the past 3 days. She's still at the same amount on her feedings and she's sooo close to being off oxygen support! It's all very exciting. She's on no medications and no new tests have been performed on her.

As we say in Jamaica, "Everyting Criss!"

Happy Now Mom and family? :wink:

Day 53

Sydney now weighs 3lbs 9.5oz and is 16.25 inches long! Just a week ago we were anticipating her hitting 3lbs and now 4 is just around the corner. The hospital won't even begin to consider her coming home until she hits 4lbs so you can just imagine how excited we are.

She was soo happy and alert yesterday and she's definitely crying (briefly) when she is bothered. Her cries are beautiful. Somebody remind us of that in 3 months, ok? :laugh:

Pics!

While she was being changed and weighed, B put his hand in front of her to protect her from falling off the bed because she was squirming all over the place. She grabbed his finger and simply would not let go and we had to pry it away so that the nurse could finish working with her. She was not happy about that.


Looking at Daddy


Hat MADE by Auntie Lisa. :love:

Day 52

Sydney is doing well in her new home and resting comfortably. She's still in a covered bed but they have started weaning her from it so that she can move to an open crib. The bed is less bells and whistles than the first one she was in because she doesn't need all that stuff anymore. She had Nurse Lola last night, who allowed us to hold her as long as we wanted to and we all had a good time.

Weight is 3lbs 80z as of last night and we are just thrilled! She's come a long way and we are amazed everyday.

Chillaxin





This is where she starts to show her displeasure after we were all fussing with her


Uh Oh...






She kept moving her head and her hat became lopsided and we decided to leave it that way. Cute, right? :laugh:

When is a step down a good thing?

When your baby gets transferred from the NICU to the "Step Down" nursery because she is no longer in need of Intensive Care! :cry: Sydney has been moved and she's having a great time in her new home.

They are also going to start allowing her to attempt oral feedings so that they can prepare her for removal of her feeding tube. It will be small amounts at a time until she can handle taking all her food that way. A therapist will be working with her (and us) to show her how to eat and still breathe at the same time. Oh, the things we take for granted. :laugh:

She's so much closer to coming home! Yay!

51 Days later...

and we have more than doubled our birth weight! Sydney weighs 3lbs 6oz this morning and that's quite a gain since yesterday. I had to ask the nurse to check that she wasn't looking at another baby's chart. She had a significant gain last Saturday too so I guess she's just figured out that this is her ticket home. :laugh: The nurse says she keeps moving her body off of her body positioner and pushing her face up against the porthole. She has to go in there and reposition her every 30 minutes or so because she looks like she's ready to be free of that thing. I'm thinking she's ready for her open bed in the Intermediate nursery.

Everything else is stable with her and she's now at 26ccs for her feedings.

33 weeks!

Baby Girl is doing so well! She's up to 25 ccs on her feedings and having no problems with that. They also switched her to a low flow cannula which is even better than what she had before. The cannula provides minute amounts of back up oxygen and it means she's requiring even less support than ever before.

She also weighs 3lbs 3.5oz this morning. Yay!

Can I get a Hallelujah?!?!?

And throw in an amen while you're at it!

Sydney is 7 weeks old today and is amazing everyone by her progress. I spoke with her lead doctor today and she said the neurosurgeon took a look at the recent ultrasounds and he is not concerned at all. He is thrilled that the condition hasn't worsened and wants to just give her some more time to grow and not consider anything invasive at this point. Yay! She is very alert, not irritable, tolerating all her feedings and having no issues with her oxygen. These are all things they look for with fluid on the brain so she's doing great. Praise the Lord.

The doctor also said, "I'm not even sure why she's still in the NICU! She no longer needs intensive care and we'll definitely have her in the intermediate nursery within a week. In fact, if another baby comes in before then, she's outta here." Woot! That means she is soooo much closer to coming home!

She was awake for a few minutes while I was there and when she opened her eyes, she looked at me and just grinned. :love: She kept smiling everytime I spoke to her and was just having a grand old time.

Woo Hoo!

Follow Up Cranial Ultrasound

This morning's ultrasound shows that Sydney's condition has not worsened since last week and it's pretty much the same. They are going to order a MRI just to get a better view of what's going on and then decide if they want to do anything or wait it out some more. There is NO bleeding and she's smiling and very happy. They expect her to be irritable because of the fluid but she's not and that's a very good thing.

The neurologists will review the most recent ultrasound between today and tomorrow and decide on the next steps they want to take.

Keep on praying, please. They are greatly appreciated and really do make a difference.

Isn't She Lovely?

Isnt she pretty
Truly the angels best
Boy, Im so happy
We have been heaven blessed
I cant believe what God has done
Through us hes given life to one
But isnt she lovely made from love - Stevie Wonder





A smile!

In Better Hands

There have been soo many songs that have ministered to us as we walk through this time in our lives. This is the one that's speaking to me today. When we falter, He's there to catch us.

Natalie Grant – In Better Hands
From the album – Relentless

It’s hard to stand
On shifting sand
It’s hard to shine
In the shadows of the night
You can’t be free
If you don’t reach for help
And you can’t love
If you don’t love yourself
But there is hope when my faith runs out…
Cause I’m in better hands now

Chorus:
It’s like the sun is shining
When the rain is pouring down
It’s like my soul is flying
Though my feet are on the ground
So take this heart of mine
There’s no doubt
I’m in better hands now

I am strong
All because of you
I stand in awe of
Every mountain that you move
I am changed
Yesterday is gone
I am safe
From this moment on…
And there’s no fear when the night comes around
I’m in better hands now

Chorus

It’s like the sun is shining
When the rain is pouring down
It’s like my soul is flying
Though my feet are on the ground
It’s like the world is silent
Though I know it isn’t true
It’s like the breath of Jesus
Is right here in this room
So take this heart of mine
There’s no doubt

You can’t be saved
If you’re not reaching out for help

Day 47!

Sydney weighs 3lbs 1.5oz this morning! We're very excited about that! Her oxygen has been turned waaaaaay down and she has had no issues with that at all.

The LORD your God is with you, he is mighty to save.He will take great delight in you, he will quiet you with his love, he will rejoice over you with singing. - Zephaniah 3:17

Follow up Eye Exam...

Sydney had her second eye exam today and it shows that she has VERY mild ROP. Apparently the diagnoses can run from very mild to mild to moderate to severe. It is a condition that usually resolves on it's own but they will do yet another exam in two weeks to check her again.

Info on ROP: http://www.nei.nih.gov/health/rop/index.asp

Keep on praying and we will keep you all updated.

Day 46!

Sydney weighs 2lbs 15oz this morning! Woot! She's doing well and her feedings have been increased to 24 ccs. The nurses seem more excited to dress her up than we are and they all say she loves bubble baths. She smiles the entire time!

Tracy (her nurse last night) did this and stuck it on her name board yesterday. I think she likes her. :D



I can't get enough of these two. AmyB, what do you notice about this picture? :rofl:


Look at that chunky arm!

I think she wants to come home...

Weight gain was 2lbs 14oz today!!! That's the biggest jump we've had so far! The 3lb mark is so close we can taste it.

All of her feedings remain the same and she's not on any medications at all. Her head circumference has been increasing but the doctors say it's right in line with what they expect since she's growing. We're waiting to see what next week's ultrasound shows but we are confident she will be ok.

At the suggestion of the nurses, we left a CD with classical music playing in her room and one of us talking to her and reading stories. She seems to enjoy it. :D We're also giving them a picture of each of us for them to tape to her bed so that she will see our faces more than the doctors and nurses and connect with us.

Day 45, here we come!

32 Weeks!

Miss Priss is doing well and had a good day. She slept alot and was very active the rest of the time. Her feedings have been increased to 23ccs every 3 hours, which is sooo close to the 1 oz mark! Her weight gain should really increase now.

In other news...she's really, really cute. :love:

Are you tired of pictures yet?

We've become those crazy people who think everyone wants to see pics of their baby everyday, all day. :rofl: She's just so photogenic though! You know it's true.

Her feedings were increased to 21ccs every three hours and she's been tolerating it very well. Hopefully she will continue to gain weight like a champ. We've spent a lot of time talking to her and praying over her the past few days too. She had some violent hiccups when I started holding her today but then she got her pacifier and they went away. She kept smiling between hiccups. :laugh:

Today's outfit brought to you by Gran Gran

6 Weeks Old!!

Where did the time go? It won't be soon before long.

Baby Girl is doing well and had another good night. She weighs 2lbs 11oz this morning! Woot! We tried to get pictures of her smiling but she would only do it when the camera was off. :laugh:

Pics:

Outfit brought to you by Auntie E


We're gonna start her on a weight lifting regimen to bulk up her shoulders so she can fill out her clothes. :rofl:


We could only catch a half smile while she was sleeping.

Milestones

Sydney weighs 2lbs 10oz this morning - exactly one pound above her birth weight! She was still her cheerful, smiling self when we went back to see her last night but we forgot to take the memory card for the camera. Sorry! We'll try again later.

She also started wearing clothes today! She's dressed in a little pink outfit looking as cute as ever. We're so excited to see her!

God is Big Enough

Big Enough - Ayiesha Woods
(Feat. Tobymac)

You turned water into wine - how extraordinary
Gave sight to the blind - and still I carry
My own load when you told me
To take your yoke ‘cause yours is easy

And even though my issues seem trivial
You alone are never to imperial
Its just the way that you love me
Its enough to convince me

And I don't wanna box you in
You've been doing big things since the world began
Sometimes I just don't wanna believe
That you're big enough - but you're big enough yeah!

I don't wanna box you in
You've been doing big things since the world began
Sometimes I just don't understand that you're big enough
But you're big enough Jesus!

You turned darkness into light - keep my lamp burning
And you are my everything
There's no denying, your love is so amazing
And even though my problems seem typical
Nothing for you is ever too difficult
You never have reservations - love without limitations

And I don't wanna box you in
You've been doing big things since the world began
Sometimes I just don't wanna believe
That you're big enough - but you're big enough yeah!

And I don't wanna box you in
You've been doing big things since the world began
Sometimes I just don't understand
That you're big enough - but you're big enough

Oh, no matter how I try to get around it - I'm reminded
Wherever I go I'm totally surrounded
It's all about you - I can never doubt you
Even if I wanted to…

And I don't wanna box you in
You've been doing big things since the world began
Sometimes I just don't wanna believe
That you're big enough - but you're big enough yeah!

And I don't wanna box you in
You've been doing big things since the world began
Sometimes I just don't understand
That you're big enough - but you're big enough

That you're big enough
That you're big enough

That you're big enough
That you're big enough yeah!
www.onlylyrics.com

Day 40!

Miss Sydney is full of personality these days! I thought I saw a smile this past weekend but figured it was my imagination. Well, when I got there today the nurse told me that she had been smiling all day, especially when she is spoken to. She was right! She was soo happy and smiled every time I talked to her or tickled her cheek. I thought babies didn't smile so early but there was no mistaking that's what she was doing.

She still doing great on the cannula and her feedings have been increased to 20ccs.

"Do not be afraid. Stand firm and you will see the deliverance the LORD will bring you today..." -Exodus 14:13

More Details...

Just spoke with the doctor again and she went into some more details about the whole thing. She said that they typically don't see this problem without bleeding in the brain and Sydney has absolutely no bleeding at all. Praise the Lord. She says that it could be something that affects her motor or cognitive skills or it could turn out be nothing and resolve itself on it's own. She thinks the neurosurgeons will be less inclined to do anything invasive because there is no bleeding so they will probably decide to watch it for now.

We have another ultrasound set in 1.5-2 weeks and we will know more then.

Jesus looked at them and said, "With man this is impossible, but with God ALL things are possible." - Matthew 19:26

Latest Developments

Sydney had a routine head ultrasound this morning. It showed that she has some fluid on her brain that could be caused by a blockage or her body producing more than she needs. The doctor is sending the film to the team of neurologists who will take a look and decide what steps they want to take, if any. Some babies outgrow the problem in time and some do not, so they want to monitor her closely and make sure that her head is not growing faster than it should be. So far her head circumference is on target with where they want it to be and it's not growing at an alarming rate.

I think the doctor knocked the wind out of us with this one. We certainly didn't see it coming. We won't know what the neurologists decide for a few days so we will keep you all posted.

She is now completely on the nasal cannula and is tolerating it well. Everything else is great too.

Day 39!

All is well with Sydney and she continues to make progress. She spent even more time on the cannula yesterday and tolerated it well. She had been very active before we got there yesterday and just wouldn't settle down and rest. I think she can see a little better now so she was enjoying her surroundings. She finally took a nap for the entire time I held her but was back to being busy once she was back in her bed.

She weighs 2lb 9oz this morning!

Eyes Wide Open - about 2 minutes before she fell asleep

Day 38!

Sydney spent even more time on the nasal cannula yesterday and handled it really well. They started her off on a high flow but had to turn it all the way down because she wasn't requiring all that support. They will keep alternating between the CPAP and the cannula for a few more days and then decide when to make the switch completely.

We had a great Kangaroo session yesterday too. She has become so much more alert over the past few days and she's much more active. Her eyes are now completely open and not half open like they used to be. She looked soo big! I'm pretty sure that had a lot to do with the huge diaper she was wearing. :laugh:

Weight was 2lb 8oz this morning. Woot!

Day 37!

Miss Sydney is just chugging along and doing everything she's supposed to do. She's on an even lower setting on her CPAP and she's one step closer to being completely switched to the cannula. Weight is 2lb 7.5oz this morning! Yay!

We've received such wonderful comments, emails and phone calls recently, and they really do help. Thank you so much. It really means a lot to know so many people are thinking of our baby.

31 Weeks

Sydney had herself another good night and is doing well this morning. She's at her lowest backup setting for oxygen on her CPAP...ever! We have also graduated to bigger diapers and last night her doctor told us that she's VERY happy with her progress. So are we!

Your love, O LORD, reaches to the heavens, your faithfulness to the skies. - Psalm 36:5

A Love Story In The Making

This one is for AmyB. That's the smallest size Beanie Baby





Like her bracelet? Daddy's wedding band.


















Videos! No, I couldn't say "She's so happy!" one more time. Leave me alone!

5 Weeks Old Today!!

Sydney is 5 weeks old today and we are very happy about that! God has been so good and she's doing so well. All her routine tests have been great and she's doing her best to grow.

Guess What?? Her Daddy got to hold her for an hour last night! We had hoped that he would have been able to hold her on Tuesday night but her heart rate was slightly elevated again and we didn't want to over stimulate her. It worked out for the best though because our new favourite nurse, Tonya (shh...don't tell the other nurses) was working last night and she went out of her way to accommodate us. We have LOTS of pictures today because she just insisted on taking all kinds of pics, set up in different ways. She's like Sydney's personal paparazzi! :laugh:

When we arrived, her heart rate was a little high but we decided that she needed some Daddy snuggles anyway. Of course, we got her out and her vital signs improved IMMEDIATELY. She wasn't in his arms for one minute before she settled down and she stayed that way for the entire hour. As soon as we put her back in her bed her heart rate went up a bit again. :laugh:

Anyway, stay tuned for pics!

All About Oxygen/Lung Support

So first, Sydney started out on a ventilator. That was the most invasive option and it involved actually sticking a tube down her throat (intubation) to help her breathe. Intubation is only done when absolutely necessary and when the patient is simply not strong enough to breathe on their own. As the patient gets stronger, the risks of being on the ventilator (bacteria build up in the tubes, damage to airways etc) far outweigh the benefits. When she was on the vent she looked liked this:



That white thing taped to her mouth was holding the tube in place.

When she got stronger, she moved to the Continuous Positive Airway Pressure (CPAP) machine that gives her air through her nose. Nasal CPAP delivers air into your airway through a specially designed nasal mask or pillows. The mask does not breathe for you; the flow of air creates enough pressure when you inhale to keep your airway open. It is not invasive at all and does not involve putting anything into her body.

On the CPAP she looked like this:



Today they started testing her on the nasal cannula which means she's needs even less breathing support than the CPAP gives her. The cannula is just a simple tube that provides her with oxygen support without the discomfort of the CPAP on her face. She hasn't been taken off the CPAP but she did perfectly for the three hours they had her on the cannula today. This is FANTASTIC news and only means she is getting stronger and her lungs are developing.

Today she looked like this:



You can actually see her face! She's doing so well.

Here's The Thing About Kangaroo Care...

It is quite possibly THE best thing in the world. I know, I know, I say something is the best thing ever almost every day but I mean it this time!! I held my daughter for 2 whole hours today. Two hours. :cry: They usually start Moms off with an hour but her nurse allowed us two hours today because she was doing so well.

At first she was swaddled and I held her like that for about 30 minutes. They were testing her with the nasal cannula today and wanted to make sure she could handle it before we started Kangaroo Care. I know some of you guys had some difficulty understanding her whole breathing thing so there will be more on that later. When she was swaddled she was a little fidgety but very relaxed. I think she was just trying to figure out what was going. Then we started actual Kangaroo Care and I am amazed by how much she settled down and just relaxed. She just laid her little head on my chest and used both her hands to hold on to me. She never let go for the entire time I was holding her. She was absolutely the most relaxed and happy she has ever been. I cannot even describe how good it was for us both.

Anyway, I know you all want pictures and thankfully she had a fantastic nurse today who was more than happy to take a few.



:love:

Believing is Seeing

Baby Girl has her one month eye exam yesterday. They were specifically checking for Retinopathy of Prematurity - ROP.

What is retinopathy of prematurity?
Retinopathy of prematurity (ROP) is a potentially blinding eye disorder that primarily affects premature infants weighing about 2¾ pounds (1250 grams) or less that are born before 31 weeks of gestation (A full-term pregnancy has a gestation of 38–42 weeks). The smaller a baby is at birth, the more likely that baby is to develop ROP. This disorder—which usually develops in both eyes—is one of the most common causes of visual loss in childhood and can lead to lifelong vision impairment and blindness.

Several complex factors may be responsible for the development of ROP. The eye starts to develop at about 16 weeks of pregnancy, when the blood vessels of the retina begin to form at the optic nerve in the back of the eye. The blood vessels grow gradually toward the edges of the developing retina, supplying oxygen and nutrients. During the last 12 weeks of a pregnancy, the eye develops rapidly. When a baby is born full-term, the retinal blood vessel growth is mostly complete (The retina usually finishes growing a few weeks to a month after birth). But if a baby is born prematurely, before these blood vessels have reached the edges of the retina, normal vessel growth may stop. The edges of the retina—the periphery—may not get enough oxygen and nutrients.

The great news is that she does not have ROP! Woot! Her eyes are still maturing so she will need to have them checked again in two weeks but so far, so good!

Her feedings have also increased from 15ccs to 18ccs and she's tolerating it perfectly. She even weighed a whopping 2lbs 6oz this morning! :confetti:

But Wait! There's More!

We officially start daily Kangaroo Care today! Admit it... it's the best news evah, right? We are super excited about it and know it will do us all good.

Being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus. - Philippians 1:6

How Sydney's Mama spends her days

Being a milk factory!!



The three bottom trays hold 16 bottles each and that top tray has about 48. She also has a freezer at the hospital that is stocked with bottles.

Mooo!!!!

No other changes have been made to Miss Thang today and she's having a great day! We just need her to eat and grow now. Eat and grow!

News You Can Use!

We are so excited we can't even stand it!! Sydney is having her PICC line and ALL IV lines removed today because she doesn't need them anymore. No more medications, no more IVs with fluids, nothing! She will be on 100% feedings for her nutrition now. Wooooo Hoooooooo!!!

As of today she will only have her feeding tube, her oxygen (the CPAP) and her external monitors to check heart rate, blood pressure and oxygen saturation.

Did I already say we were excited?? Soo exciting!!

Woot!

Day 31

Sydney's heartrate was even better when we got there yesterday. She was betweeen the 160s and 170s and the doctors are fine with that. Her temp has also been back to average for the past few days.

It's funny but she looked noticeably bigger last night. She doesn't look so "breakable" anymore and I was very relaxed when I changing her diaper. The best news is that she actually cried for the very first time. Only in this world could crying be a fantastic thing! :lol: My hands were cold when I went to change her diaper and she didn't like that at all so she let out a cry. A real live cry! Before this, she was only been able to whimper like a puppy because her lungs were so immature. It was only one little cry but it really was the best sound ever. It's funny because earlier in the day Brian was saying he was looking forward to hearing her cry for the first time. Of course she did it as soon as he left the room so he missed it. ((((B))))

Weight is 2lb 4.5oz this morning. Woot!

Day 30

After many more tests, the doctors decided to eliminate Sydney's caffeine dose yesterday. Many young preemies are given caffeine as a stimulant to encourage them to breathe. They felt that her dosage may have been too high now and that it was contributing to her elevated heartrate. They ordered a test to check her caffeine levels and we should get the results some time today. It seemed to have helped because her heartrate is now between 170 and 180 and we hope it goes down a tiny bit more. If she gets caffeine again, it will be at a greatly reduced dose.

She's doing well in every other way and weighs 2lb 4oz this morning! Looks like the cheesecake helped. :D

30 weeks!

Picture and Videos!

Out of the mouth of babes...

:cry:

This is from Amanda's prayer journal. She wrote this all on her own with no prompting or leading from anybody.

Click to view bigger.



We have the most awesome niece and nephew evah. :love:

Evening Update

Sydney's heartrate has been consistently elevated all evening. The doctors and nurses prefer her to be in the 160s and she was in the high 190s. She also spent a lot of time in the 200s and got up as high as 221 at one point. She was running a mild fever earlier in the day but that went away so they're not sure what's going on. They have run all kinds of tests on her and everything is perfectly fine. No sign of infection or anything.

They also say she's not acting sick or showing any other sign of a problem besides the heart rate. Her X-ray today was even better than the one yesterday too. She's very active, tolerating all her feeds and peeing and pooping. They're pretty stumped at this point.

I think they are going to do another EKG as well and we should get the results on those tomorrow.

It was very scary watching her heart rate go crazy when she looked absolutely fine. We'll be praying.

Thanksgiving Day - Day 28!

Things we are thankful for today:

1. The grace, mercy and love of God.
2. Sydney is ONE MONTH OLD today!
3. Sydney weighs 2lb 3oz today!
4. The great doctors and nurses who care for our daughter.
5. The best family in the world
6. Our Phenomenal friends
7. Modern Medicine and medical equipment
8. Digital cameras. :laugh:
9. The internet!
10. Our daily bread.

Happy Thanksgiving Everybody!

Be joyful always; pray continually; give thanks in all circumstances, for this is God's will for you in Christ Jesus - 1 Thessalonians 5:16-18

A lot can happen in 5 days!

Shawty is doing 100 times better this time around, than she did 5 days ago when they extubated her for the first time. When we got there yesterday, she was sleeping and looked the most rested we have seen her in about a week. No oxygen saturation problems at all and she was breathing perfectly fine. She was at 34% on the CPAP last night and was at 29% when we called this morning. Yay!

She handled the increased feedings well and doesn't show any sign of intolerance at all. Hopefully she can gain some weight now that she is past her infection and off the diuretics. I'm going to have to give her some cheesecake or something.

She starts kindergarten next week. :smile:

Extubation...Part Deux!

Sydney was extubated at 10:45 this morning and she's doing juuust fine! She's back on the CPAP machine and she hasn't had any difficulties. She's doing so well that her doctor increased her feedings to 15ccs as of 1 p.m.

Cheers all around!

Day 25!!

Sydney is having a really, really good day! She's at the lowest rate she's even been on the vent and she's doing most of the breathing herself. When she was intubated last week her X-Ray showed some more fluid in her lungs but her doctor wasn't concerned about it. She said that frequently happens when babies are extubated and struggling. They started her on more diuretics and today's X-Ray came back great.

She also has very little mucus today and that is also helping her to breathe better.

They are actually planning to try to take her off the vent again tomorrow! We thought they would wait some more but she's been doing better and better every day so they're going to try. We're praying she's strong enough to handle it now.

Thanks for all your support.

Day 24!!

Sydney continues to improve and is doing better today than she was yesterday. Last night, the doctor who was on call told us that she had a lot of thick mucus (sorry, tmi) in the back of her throat and that was contributing to her oxygen saturation problems. She can't cough or "clear her throat" on her own so they have been suctioning her more frequently and it has been helping.

The doctor was Jamaican and he's had her a couple times before. He calls her "Shorty" or "Shawty", to be exact and he talks to her like she's 5 years old. :rofl: He says he likes her because she understands patois (Jamaican dialect) and she's feisty. He's soo good with her and is very attentive to her needs. We are so happy with the way all the doctors and nurses care for her.

Her weight remains unchanged, which is good since they expected her to lose again because they started her on diuretics again yesterday. Feedings are the same and her oxygen dependence is waning. Woot!

Day 23!!

It looks like we have officially crossed the 2lb mark. Miss Thang weighed 2lbs 2.5oz this morning! She did well overnight and had no issues whatsoever. The nurse says she looked very relaxed and she's been resting well.

She's still at 14ccs for feedings and all her blood gases and X-rays are great.

So far, so good...

I just spoke with Sydney's lead doctor and she's doing much better today. She's actually at 21% on the ventilator now, which was where she was when they extubated her. It's great that she was able to go right back to that level with no problems. The doctor said they would have extubated her yesterday anyway, if only for enough time to change all the tubes that can promote infection. They just wanted to give her a chance to see where she was at but they're not really surprised that she wasn't quite ready yet.

She's very relaxed now and not having any oxygen or heart rate issues at all and her feedings remain unchanged. They're planning to try extubation again when she's closer to 30 weeks developmentally.

What an interesting cap!

She wasn't wearing her diaper cover last night but she was wearing a new cap. It's actually used to hold the CPAP tube in place. I don't know who she gets that outtie from. :laugh:




Videos. Nothing you haven't seen before. :D