Are you ready for this?!?!

A certain big girl has not used her feeding tube in over 24 hours!!! I wish I could adequately describe how much better she is doing with feeding this week. She's so much more coordinated and her breathing is perfect. There's a theory that all the sedation last week gave her some much needed rest and allowed her lungs to FINALLY recover from RSV. My friend Amy told me that RSV can be frustrating and wow, she wasn't kidding.

The other great thing is that we are back to 12.5 ccs of flow for oxygen and that's where she needs to be weaned completely. We're thinking the docs will give her a trial run by tomorrow.

Weight is 7lbs 2.25 oz today!

Day 87!!!

Little Miss had a great night and is back in her open crib. She's still at 4 feedings per day because she gets so pooped after taking a bottle. She breathes really fast and goes right to sleep when she's done. She still taking them faster than she did before she got sick so that's an improvement.

Her weight is 5lbs 13.75oz today!!! I can hardly believe it.

Another preemie Mommy told me that sometimes getting to the end of the NICU journey can be the hardest part. You know you're close but you don't know when it will be either. You know that certain things have to be just right for the doctors to give the ok and you wait anxiously for it to happen. Every bottle she takes brings us one step closer. Every time she tolerates being weaned from oxygen, we get even closer. It gets harder to live in the moment when you're LOOKING at the finish line. We're getting there.

Does anybody need an isolette?

Cuz my baby is done with hers! Woot! Second round of tests came back negative so we're totally off quarantine now. No more impersonal mask and gloves! They're moving her back to her open bed tonight and I know she will be very happy with that.

She's also moved from Preemie Large diapers to actual newborn diapers now. :cry: It's the little things people, the little things.

Bless her heart for enduring the singing of her parents.

If you're going through a difficult time...

Be encouraged:

Hold Fast Lyrics
Artist(Band):MercyMe

To everyone who's hurting
To those who've had enough
To all the undeserving
That should cover all of us
Please do not let go
I promise there is hope

Hold fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing greater than my strife
Is His grasp
So hold fast

Will this season ever pass?
Can we stop this ride?
Will we see the sun at last?
Or could this be our lot in life?
Please do not let go
I promise you there's hope

You may think you're all alone
And there's no way that anyone could know
What you're going through
But if you only hear one thing
Just understand that we are all the same
Searching for the truth
The truth of what we're soon to face
Unless someone comes to take our place
Is there anyone?
All we want is to be free
Free from our captivity, Lord

Here it comes fast
Help is on the way
Hold fast
He's come to save the day
What I've learned in my life
One thing stronger than my strife
Is Your grasp
So hold fast
Help is on the way
So hold fast
He's come to safe the day
What I've learned in my life
One thing greater than my strife
Is Your grasp
To hold fast

Off topic

I've been immersed in the world of preemie blogging for the past weeks and have learnt so much about so many miracle babies. I recently came across a blog written by a fabulous woman named Bree, who gave birth to her own 24 weeker just over a year ago. Bree and I share very similar thoughts with regard to our faith and seeing so much of the grace of God in our children.

Today she posted about a blog that I saw over the weekend that is written by a man named Nate who is married to a woman with Cystic Fibrosis. Tricia found out she was pregnant while she was on the transplant list and her options were to terminate her pregnancy and receive the transplant or continue with the pregnancy. She chose to keep her baby. With time, she had more and more complications and gave birth at 24 weeks. Tricia and their baby girl Gwyneth are both on the ventilator and are in need of prayers. If you could, please pray for their family. Nate also keeps a blog and writes with such grace and faith. I am blessed to see him so unwavering in his devotion to God every day. Nate's blog is here: http://cfhusband.blogspot.com/

Bree mentioned a post he did recently and when I read it, it touched me in such a deep way. We know exactly what he means. Our God is so amazing. Here's the post: cfhusband.blogspot.com/2008/01/not-sad.html

During this time in our lives Brian and I have felt a rollercoaster of emotion but we have not felt despair. God gives us joy everyday. He's the reason we get up everyday and put one foot in front of the other and trust him to take care of our angel. We see the fingerprints of God everyday when we look at her. Everyday I am humbled by the events that lead to her being conceived and her life thus far. I remember when the doctor told me I would never get pregnant without having major surgery. That was a hard day. B and I went for a drive and we were just praying about what to do. Then said, outloud, "Lord, I need a rainbow." Within minutes the skies literally opened and the rain came and there was the most beautiful rainbow I have EVER seen. He told us to wait on him and that he would do what he promised. Waiting was hard but it was worth it. I remember in June of 2006 when I was praying and I heard Him say that I would conceive within a year - I found out I was pregnant on May 28, 2007. I remember in April of 2007 when he told me to take an act of faith with regard to believing for our children. I bought a newborn outfit and I was pregnant within a month. I remember being told that I was in labour 14 weeks early and feeling the grace of God. I remember giving birth and hearing my child cry. She was so small she could fit in the palm of my hand and still she cried. That's God. We see his hand everyday. So like Nate, there's no sadness here. He never promised that life wouldn't have it's trials but he did promise that he would carry is through them all. His strength is made perfect in our weakness and I cannot imagine going through this season without Him to carry us.

His love is so amazing.

Day 81!

Lil Mama is doing great! Don't just take my word for it...that's all her lead doctor kept saying last night. They are really pleased to see how well she's doing despite being on the vent only one week ago. They have been gradually weaning her and she's handling it like a champ. When I was holding her last night, we could hear that she needed some major suctioning. The nurse came and got out the fancy dandy suction thing while I held her. As soon as she saw it, she grabbed the tip and started screaming! She was holding on to it so tight, her knuckles were white and it took quite a fight to loosen her grip. It was just so funny to see such a strong reaction before the thing even touched her.

She had another eye exam today and her ROP has not worsened at all. Praise God! We're more concerned about it getting worse at this point. ROP usually begins to resolve somewhere around 38 weeks and can continue to improve throughout the first year of life. It is great news that it hasn't been worsening all this time and we're about to hit 38 weeks in a few days.

She's now at 39ccs for feedings and her weight is up to 5lbs 5.25oz today!

Day 80!

Sydney had a really good night and continues to heal from the RSV. She's still quarantined so she's not totally over it yet but we're getting there. She was a happy little girl when we were there last night but she did have one moment where she got really cranky and then started to look like she was choking. It turns out that she had reflux. I also think her feeding tube may have been too centered in her mouth (it's usually put to the side) and she may have choked on it too. As she was about to choke she pulled the tube out completely. When she finally spit up, I put her on my chest and she was happy as a clam and fell asleep almost immediately. I'm hoping we won't have to spend much more time using the feeding tube.

She weighs 5lbs 4.5oz today so I think the doctors will increase her feedings this morning when they do rounds. They want to get her back to gaining close to an ounce per day.





Immediately following the reflux incident:


Squirming and Smiling! :love:

One week later...

and Miss Thang is like a whole new person! Last night, she was the strongest and most active I have EVER seen her! The doctors say there is one major way they can tell when babies are getting and when they are getting. They get cranky. When they are really sick, they're limp and lethargic and just lay there but as soon as they start feeling better they get super annoyed by being bothered all the time or by restraints of any kind. My daughter is no exception. She managed to squirm herself into a corner of her bed last night and she was fighting to get the CPAP off her face.

We got her out and she kept reaching for the tube and was pulling on it hard. I had to really restrain her but she did manage to pull it off once when I looked away for a second. As soon as we put it back on, she threw an enormous fit! Crying, back arching, foot flexing and red faced! She was mad! We don't like seeing her upset but hearing her use her lungs was awesome! :laugh:

She continued to improve throughout the night and they decided to put her out of her misery and get her back on the cannula shortly after midnight. She's much happier with that and she had a fantastic night. No breathing problems at all. God is gooooood!

37 weeks!

After one week on the vent, Miss Priss is now off! Woot! I seriously have a love/hate relationship with that thing! She's back on the CPAP machine and doing ok so far but she still has moments where she gets very tired from breathing. She still has a lot of secretions but they are suctioning frequently.

Feedings have also been increased to 37ccs and that's where we were a week ago. She's doing great on that so far. They also put it on the schedule to try her again with a another bottle by Sunday as long as she continues to improve on the CPAP. Her weight is now 5lbs 4oz! Our baby girl is getting so big!

I didn't get a pic today but I will try to get some tonight. Stay tuned.

Reason No. 319800 I love the nurses

When we got back there last night, the first thing the nurse asked me was if I held Sydney since she had been sick. I told her no and she asked me if they had given me a specific reason for it. I told her I just figured it was because she was sick and they wanted to keep her stable and also because she was contagious. She said, "Well that's why we have her under quarantine! We have to take her out and change her linen anyway so I think she needs to be held by her Mommy. It will do you both good." :love: She also said that if she was home and sick I wouldn't just lock her in a room and not hold her for 6 days. :double love:

We got her out, she looked around for a while, smiled a lot and the went right to sleep. They suctioned her before they gave her to me but within a few minutes I could hear the rattling in her chest and feel the congestion through her back. That gunk builds up quickly!

She had a pretty good night and they were able to turn down her oxygen and she tolerated it beautifully. The problem is that they did a blood gas this morning and her CO2 levels are not where they want them to be so they turned it back up. Her monitors were not showing that she needed more oxygen so we hope that a few more hours at the higher setting will even out her blood gases. Feedings have been digested perfectly too.

Slowly but surely...

Sydney is doing better and breathing more and more on her own. Based on this, the doctors decided to start feeding her again! Woot! She's getting 10ccs every 3 hours for the next 24 hours and depending on how she tolerates it, they will increase it again. Her secretions are also a bit less than they were yesterday so we're getting somewhere.

We'll take any improvement and positive changes we can get!

Day 76

Sydney is stable this morning and doing well. She's at about the same rate on the vent but having longer periods of breathing on her own. As the hours go by, she gets more alert and active and she doesn't look miserable anymore.

We're just so anxious for her to be better and we're trying to not focus too much on the fact that she would have been home by Friday if this had not happened. When she was on the vent in the early days, I was at least able to hold her but because she's contagious we definitely can't take her out of the isolette. I would think she needs a snuggle now more than ever. It's a long week but this is what she needs to recover.

Her weight is the same and she's peeing a lot so we don't have a concern about her retaining fluid. They are still holding her feeds for now since even feeding by tube causes her to have to work hard to breathe. Hopefully, we will get there by the weekend.

Quarantine!

Sydney has been quarantined they are taking every precaution to make sure that no other babies get sick and that she doesn't get sicker.

This is what anyone person has to do before they go near her room now:



Yes, my husband is a silly billy 90% of the time. That's his "Austin Powers pose." :laugh:

There are also these signs:


She looked great last night too. Not pale, much more active and breathing a whole lot better. She loves having her head rubbed and smiled the entire time I did it last night. She gets that from her Daddy.

This morning, the nurse says she had the best night she's had since last Thursday and she's pretty happy for being on the vent. She gained another half ounce so that takes us to 5lbs 2.5oz. She still has a lot of thick secretions but they are colourless now. That's a good sign that she's on the road to recovery. Her most recent blood gases came back great too and they were able to turn down her vent settings even more and she's handling it well.

Have a great day everybody!

RSV it is

While we don't want her to be sick, I have to say that having an answer is much better than not having a clue. Sydney does indeed have RSV but we are so grateful that we caught it before we took her home. The only treatment available to her at this point is being on the vent. It allows her to take a break from working to breathe and all she really needs is time. She looks so much happier today and she was alert and active all morning. As the day progressed she did more and more breathing on her own and used the vent less. The doctor told me that most babies get over it within 5-7 days and today is day 4 of her being on the vent. I'm so grateful for those monitors and their ability to track apnea and bradycardia episodes.

The trachial culture they took yesterday also came back positive for some kind of bacterial infection. The good news is that her blood work and other tests are not positive for an infection so they are thinking that it's something that was beginning to grow on her vent tube. Even better news is that the antiobiotics that she's already on will prevent her from getting the infection and we don't have to start any new drugs on her today. We know that the risk of infections are soo much greater for patients on the vent so it is a blessing that they caught this or they would have stopped the antiobiotics since they don't work to treat RSV.

Her weight is unchanged but the doctors are happy with that since she hasn't received any nutrition but IV fluid and calories in 4 days. We are also so happy that they decided to give her a few days on just being on the vent without doing the invasive tests (MRI, spinal tap etc) that they were contemplating doing. They would have just served to make her more uncomfortable. She was also due for another eye exam today but we're going to wait and do it at the end of this week or early next week.

RSV is a pretty severe illness but in the grand scheme of things, there are so many other horrible things that could have apnea episodes as symptoms that we're choosing to look on the (somewhat) bright side.

Thanks for this Sher: So do not throw away your confidence; it will be richly rewarded. 36You need to persevere so that when you have done the will of God, you will receive what he has promised. - Hebrews 10:35-36

Day 74

I am very happy to report that Baby Girl is doing much better this morning. When we left her last night, she was all the way up to 41% on the vent but with frequent suctioning, she is now at 25%. 21% is where she would be breathing room air and won't need the vent anymore. However, if she does have RSV she will need to keep the vent in for a while because they need for her to have a tube in to get the secretions out. She can't cough up the gunk on her own and nose suctioning will have little use. I'm not thrilled with the idea of her being on the vent when she doesn't need it to breathe but it's necessary at this point.

Her nurse (Mary, one of my favourites) said that if she does have RSV, we should prepare for a long week since she will be on the vent but know that they're taking good care of her. We're grateful that we didn't take her home without monitors and therefore wouldn't know that she was having spells. It would have been so much worse. Of course, we don't want her to be sick at all but she's in good hands.

We will have test results by this afternoon.

Some good news...sort of

Sydney is still on the vent and not really tolerating being weaned BUT it does look like we may have an answer tomorrow. The respiratory therapist was working with her today suctioned her and removed copious amounts of mucus from her. When suctioned frequently, she breathes soo much better! The mucus was not clear and this suggests that there is definitely some kind of infection. Most (if any) viral infections will not show in blood tests or urine but will be seen if you test the cultures or secretions. They are actually wondering if she has RSV. It would explain why she deteriorated so fast and why she would need to go back on the ventilator. They sent some cultures to be tested today and we will have the results tomorrow afternoon. If she does have RSV, the antibiotic and IV fluids that she is on will not help her. Antibiotics treat bacterial infections and RSV is a virus so she will need other medicine.

Her cranial ultrasounds shows that her ventricles are no worse than they were during the last test so it should have no impact on her breathing. It also would not explain the mucus. The other good thing is that she is now fighting the vent and doing much more breathing on her own. Between Friday night and this morning the vent was doing most of the work. Throughout today, she has gradually been able to breathe more and more on her own and this makes us all very happy.

Thank you, thank you, thank you for your prayers. They are making a difference!

Day 73

Sydney is just about the same as she was yesterday. She's resting comfortably, when not fighting with her tubes. Her vent settings are basically the same and she's not tolerating them being turned down anymore just yet. We're so very eager to get her off the vent but if she needs, she needs it. She really is determined to teach us patience.

She also managed to gain some weight even with her feedings cut off. :laugh: She's on a high fat/high calorie IV that supplies her with nutrients for now and her weight is 5lbs 2oz this morning. At this stage, every little ounce counts so this is wonderful.

He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint - Isaiah 40:29-31

An open letter to our daughter

Sydney Sweetheart,

If you don't like having the vent in, then we need you to breathe, ok? Totally extubating yourself and freaking out your doctors and nurses is NOT the way to go. Please leave the tube alone and get some rest so that we can get you back to being happy and ready to come home.

Love,
Mommy and Daddy

"It's hard to be brave,

said piglet, sniffing slightly, "when you're only a Very Small Animal." Rabbit, who had begun to write very busily, looked up and said: "it is because you are a very small animal that you will be Useful in the adventure before us." - From Winnie the Pooh

Our little itty bitty has already impacted so many people based on the circumstances surrounding her birth to now. She's little but her purpose is great.

She's stable today and doing well on the vent. They were having some trouble weaning her during the night but now that she has rested for a bit, they managed to turn her settings down. That's a good thing. They have also restarted ALL her IV fluids that she was on in the early weeks and are still holding off on feedings for now. They are only doing a cranial ultrasound today to determine if there has been increase in the fluid that may have caused some pressure that affected her ability to breathe. The plan for the rest of the weekend is to not disturb her until absolutely necessary and give her some time to recuperate if rest is all she needs. The radiologist and neurologists will review the ultrasound on Monday and make decisions from there.

Thank you for all your prayers, phone calls and emails today. :love:

Oh What A Night.

It's not a good sign when you meet the nurse who was taking care of your baby during the day shift and she looks at you with a sad face and without saying a word, hugs you. Not a good sign. It's also not a good sign when you ask her a question and she responds, "Umm...the doctor is waiting upstairs to talk to you." In a way, it gave us a moment to prepare for bad news. We walked into Sydney's room and saw quite a bit of activity over her bed. Apparently we arrived just minutes after they decided to intubate her again. When they were about to put her on the CPAP they did a blood gas and the results were just awful. That's when they made the decision that they needed to get her back on the ventilator immediately.

So far, there's still no sign of infection in any of the tests they have done but they are talking about doing a MRI and spinal tap tomorrow just to check her thoroughly. They did another blood gas just about an hour after she was intubated the results were perfect. She is at 28% on the vent now and they are already working on weaning her. The doctor said they reviewed her charts and they notice that she started having more and more desats when they stopped her caffeine. Prior to the last 10 days, they were just considered normal behaviour but now they think she may need the stimulation for a while longer. She got a dose of caffeine earlier and they will go back to daily doses as of tomorrow.

Here's what we know for sure: God will be glorified in her life. There's really nothing else that we're sure of besides that. He is in control and prayer changes things.