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!

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.

Goodbye RSV!!

Cultures sent to the lab yesterday came back negative so it's official! Sydney no longer has any traces of RSV!! Woot! They are doing another culture today (just to be safe) and if that comes back negative tomorrow, she will be free from her isolette. She definitely misses her open crib. When I spoke to the nurse I could hear that she was laughing as she picked up to the phone. She said, "Oh, we're just here laughing at your baby. She's doing her best to get out of that thing. Everytime we adjust her, she squirms all the way over and sticks her face up against the port hole and screams." :laugh: Poor thing.

She still has some secretions but nothing more than the average baby has. She's still breathing and eating well too.

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.