Off the ventilator - and over 5 pounds!

Well, after 59 days Riley finally made that one huge step we've been waiting for. This morning the nurse called Pam to let her know they were going to be exhibating Riley. It was getting to the point that if they left her on the ventilator she was going to need a bigger tube. They figured since they needed to take it out anyways, they would try her on the C-PAP (Continuous Positive Airway Pressure) and see how she did. Worst case, they would just re-inhibate her with the new larger tube anyways. Pam went down there to watch all this happen and I think it surprised everyone that after an hour, Riley was actually doing better than she had been doing recently on the ventilator. Her O2 has been hovering at 38-40% all day, which is no higher than she had been in awhile on the ventilator. As of tonight, she was still doing great. Her throat is a little sore and hoarse from having the tube in there for so long, so we still haven't heard her cry, but she is starting to make little whimpers. Can't wait to hear her belt out a good scream!

There is still a good chance that she'll end up back on the ventilator. What will often happen is she could get "tired" and run out of energy trying to breathe on her own, and will need that assistance back until she gets a little more mature. But based on how well she has done so far today, and the fact that she has grown as much as she has, she should have the necessary energy reserves to make it without going back to the ventilator.

Also, last night she continued her astonishing weight gain by surprising us and getting over 5 pounds - 5lb 2oz in fact! She's packing it on quickly and is even starting to get little rolls in her legs! Its actually kind of cute, and she's really starting to look like a full-term baby (if you can ignore the tubes all over the place).

She's back on the Nebutal (sedative), but that was to calm her down from all of today's excitement more than anything. They've stopped the antibiotics from the recent infections, so hopefully those pesky things stay away for awhile. 4 infections in 2 weeks is enough for me! They are also continuing the CPT treatments, where they put a vibrator on her chest and back a few times a day to break up mucus plugs in her lungs to clear the airways. When the ventilator was in, they would then suction them out but now it will be up to her to "hack" them up and they will suction them from her mouth. She had a little trouble at first, but is already showing her ability to adapt.

I feel bad that I couldn't be there to celebrate last night, or to witness today's events. For the first time since May 11th, I didn't make the trip to Wesley (that's 81 days in a row for those of you counting). I had to leave town for work, and figured it was better to get it done now rather than after she came home. It was tough since it was the first day since she was born that I haven't been able to talk to her or touch her...

Here's a photo from tonight. As you can see, the C-PAP is a little less intrusive, but still tons of tubes and still hides a lot of her face. The blue tube goes down her throat to her stomach, releasing some of the excess oxygen that ends up there. Orange tube is her feeding tube that goes in her nose, down her throat, and into the stomach as well.

Busy weekend

Riley had quite a busy weekend. With my sisters both back in town, and Pam's Grandparents in from Minnesota, she had quite a few visitors. She was very excited to meet 2 of her 3 living Great-Grandparents. In addition, we were able to each hold her over the weekend. She did real well on Friday evening, and slept in my arms for nearly an hour. Then yesterday afternoon she was doing okay until she decided to rip the IV out of her arm - I had blood gushing all over the place and she made a real mess. Luckily, the nurses were all over it and it was under control quickly. Tonight, the nurse got tangled in the ventilator lines and accidentally unhooked one of the, which set off all kinds of alarms - but once again there were nurses that jumped right in and got us set right back up, all the while Riley was in Pam's arms and was just looking around trying to figure out what the commotion was all about.

No real big changes in her status - ventilator settings are down a bit, and her weight is up to 4lb 12oz. Hoping she might get off the ventilator some time this week, but no guarantee. Feedings are up to 42mL. She's still on antibiotics for the infections, and will continue to get the phenobarbital for awhile. She's looking really good, but primary focus is still on getting her to breathe on her own.

Here's a few pictures from the weekend...

Another family photo...much better than the first one I think.

A close-up from Sunday. She's really a big girl now!
Here's a great one of Mommy and baby from tonight. She's really done well with skin-to-skin holding and seems to enjoy being in Pam's arms.

New bed for Riley!

Yesterday came with another great surprise. Riley finally got the new bed, an open crib, that we were hoping to see for a little while. Her weight is up at 4lb 8oz, and is holding steady - and her temperature has remained stable on her own as well, so they felt it was time to move her up.

This past week she had another few small setbacks which delayed the bed a little. She came down with another infection, Pseudomanas (?), which they found in her lungs. Her blood and urine cultures came back clean, which the doctor said is a good thing. He said they caught it early enough that it is easy to treat, but if it had spread to her blood then it would have required a lot more to treat than simple antibiotics. But she has reacted well to the drugs she's on now, and is back on the path to getting the ventilator out by next week. PIP/PEEP are at 21/6, and vent rate is down to 22. At this rate, we are still hoping this weekend or first of next week she'll get her first chance since birth to breathe on her own.

Here's a picture of Riley's new bed:

And a closeup...can't see much since she's all bundled up to keep warm.

Family Photo

On Friday night I got to hold Riley for a little bit again, and we took the opportunity to get our first family photo. It didn't turn out that good, but here it is anyways. Too bad Baxter couldn't make it, for the complete family portrait.

Today she started having more episodes of A&B (apnea and bradycardia), so was requiring a lot more monitoring and bagging due to frequent desats. Her phenobarb levels were low as well, so they gave her another dose. She'll probably end up back on the chloro-hydrate as well to get her calm. We went up twice today and both times she was very active, and wasn't rebounding as well as she had the past few days. We are hoping this is just a small setback and she'll get back to the positive pace she had been on this week. Her weight was up again though, up to 4lb 5oz. Just wish her lungs would grow as quickly as the rest of her body! Here's another photo from tonight, looking like a big girl and very alert.

4 pounds and growing

Riley officially crossed the 4 pound mark yesterday, and decided she wasn't done there...got up to 1900g (4lb 3oz) at last night's weigh-in! She's averaging over an ounce a day in the past few weeks. Today the doctor gave us encouraging news as well. He said they lowered her PIP again, and if she continues in this direction with no more setbacks, she could be off the ventilator as soon as next weekend. Even though she has gotten to the right point in weight and temperature control, they will probably wait to move her to the open bed, just because the ventilator tubes don't stay still very well in the open bed. We've been told we could hold her just about every day if we wanted, but can only do it when we are there alone. So in between visits from family and friends, we are trying to do that as much as possible. I'll try to keep posting pics when I get some good ones.

The one question I get asked the most is "So when will you be bringing her home?" The best answer up until now has always been "We don't know, hopefully by due date - August 29th." With the encouraging news from the doctor today, we are hopeful that it will be a few weeks earlier than planned - so probably a month from now. It just depends on if she can stay off the ventilator, and take the bottle feedings - which we can't even try until after the ventilator comes out. We're keeping our fingers crossed that she keeps heading in this positive direction.

In other news, congratulations to our friends Brandon and Ashley, who had their first baby early this morning. Welcome Joscelyn! I'm sure Riley, Joscelyn, Sam, Koelton, Sydney, and Jayton are going to have a blast together...and soon to come are Zach and Claire - all within a year of each other! The neighborhood is really filling up with babies quickly, there must be something in the water.

Daddy's turn

I finally got my turn to hold Riley on Monday. I meant to get this posted sooner, but the past few nights have been busy with softball. We didn't do "skin-to-skin", but I did get to hold her in my arms for about an hour. She was awake for part of the time, and seemed very content with me handling her. Since then, they have taken her off the antibiotics, and are confident she is infection free (for now). They've also scaled back the sedatives, and she hasn't had any in a few days - which means she is more alert, and more active. Unfortunately, her oxygen still dips every time she squirms, but now its not dropping as far and she gets back up on her own without needing adjustment. They are still working to wean down the ventilator settings to get her off of it, but no word on how much longer they think it will be. Her weight is still going up, but the past 2 days she has held steady at around 1770g, about 3lb 14-15oz. She should be crossing that 4lb mark any day now! When she can stay above 1800g, and can hold her temperature, she will be moved to an open-air bed, that looks just like a small crib. It will make handling, touching, and seeing her much easier than the enclosed incubator bed. At that point, she will have crossed 2 of the 4 milestones she needs to come home - weight gain, holding temperature; still needing independent breathing and bottle/breast feeding.

Here's a picture of Riley with her dad for the first time...

And another one from last night, Riley showing us she already knows how to "high five":

On a side note...can you believe we've already had over 2000 visitors to this site? Wow! I never knew we were this popular! Thank you to everyone who follows Riley's progress and is sending in their thoughts and prayers. We appreciate so much everything you all have done for us. We love reading the comments you leave on here, and feel so blessed that so many people are keeping tabs on our little girl. Thanks!!

3 steps forward, 2 steps back

Well after such a great week, Riley had another small setback this week. The day after Pam got to hold her, she had a rough night and a bad start to the day so I wasn't able to hold her. As it turns out, Riley now has a slight infection. Nothing too bad, but they have her back on antibiotics (which means that darn IV is back in her), and her oxygen needs have gone back up as a result. She's started to calm down now, and the sedatives are keeping her content, but now its going to be another few days before I can hold her for the first time. Lucky Pam, she got hers in before the infection set in. Unfortunately, it seems like every time she makes some real progress, she takes a small step backward.

On the bright side, Riley is still gaining weight like crazy. At this point, she's averaging over an ounce a day - and tonight was up to 3lb 14oz!!! At this rate, she's going to be 6 pounds by the time she comes home. But I'm sure the gain will slow down a bit as time goes on. The formula they are giving her is surely causing this gain, which is what it was intended for, but they don't plan on backing it off unless she gets into the "too big" category. She is filling out nicely and from all accounts, is looking more and more like my baby pictures every day.

Her ventilator settings have gone up a bit thanks to this infection. For those of you following this, PIP/PEEP settings are at 27/6 (up from 24/6 last week) and FiO2 is hovering between 40-50. We need to get those down around 17/4 and 25 to get her off the ventilator - and even then she'll still be on oxygen through a nose feed (like you see a lot of elderly people one, just a little smaller). The doctor even told me I needed to keep telling Riley its time to get off that ventilator - he said if I don't establish the dominance now that she'll always think she can get her way when she's older - HAHA!

Haven't got too many good pictures the past few days, but here's one I took last night that turned out okay. You can really tell she's getting bigger, and is looking cute in all her new clothes.

Mom and baby, together at last!

Well finally after 36 days, Mommy got to hold her baby. Today over Pam's lunch break, they let her do "skin-to-skin" holding with Riley for well over an hour. It was long-awaited, and I know Pam thoroughly enjoyed it. We were hoping I would get to hold her tonight, but they don't want to do it more than once a day. So I'll have to wait until tomorrow....

Riley has been doing very well with her oxygen lately, remaining stable and consistently low with her O2 needs. They are keeping the chloro-hydrate (sedative) treatments regular at about 6-8 hours apart, which is likely a major part in keeping her O2 stable. Very few incidents of steep oxygen de-saturation, and they haven't had to bag her in a few days now. In addition, she has gained a bit more weight and is up to 3lb 9oz. She's looking cute in her new clothes too. Feedings are at 30mL (1 oz), and will keep increasing as she gains weight. Hoping to get that ventilator out in a few weeks, and might be able to start bottle feeding at that point! It seems like she has really hit her stride and is making huge improvements every day.

Here's the picture the nurse took a few days ago, when Riley was very alert. Sorry for the grainy quality, it was scanned in.

Our nurse took this one last night, with Riley showing off her new clothes.
I took this one last night too, she looks so much more like a full-term baby than she did a month ago!

And here's the proud Mommy holding her daughter for the first time.

Check back soon, I'll post pictures after I get to hold her.

Growing bigger

Hope you all had a great 4th of July. We were welcomed at the NICU yesterday with a nice little gift from the hospital, a fridge magnet decorated for the 4th with Riley's footprints! We compared it to her footprints from birth, and you can really see the growth. And this morning our nurse had taken a photo of Riley and printed it off for us - I guess she was very alert and she got a good snapshot of her with her eyes open. If I can get it scanned in, I'll post it.

Riley is up over 1500g now - a little over 3lb 5oz! Today we were surprised to find out she was wearing clothes for the first time. They had her in a little onesie and wrapped up in a blanket. They're starting to wean her off the temperature control a little, and hope to have her moved to an open "crib" when she hits 1800g - which at this rate will be in a few weeks.

As for her lungs, she has been a lot more stable the past few days. They haven't had to bag her in a few days, and her episodes of de-sat aren't as often or as extreme as they had been - all of which are great signs. She is taking to handlings a lot better, and has had positive reactions every time Pam and I have touched her lately. All this means we should be able to start holding her. The nurse hinted that if we came back tonight, they might let us try it, but don't know if we'll get free to do that or not - so might have to wait until tomorrow. With our busy lives, how are we ever going to handle a baby? Ha!

Here are a few photos from yesterday...notice how light her hair has gotten, almost has a red tint to it. Since there is no red hair in our family, I'm going to have to look at our mailman, plumber, etc. (Haha!)

Riley is 1 month old!

Wow...I know I've said this before, but it's amazing how fast time is flying. As of just a few minutes ago (8:49pm) Riley was officially 1 month old. And as of last night, she was almost exactly a pound heavier than birth - around 3lb 4.5oz. Just looking at her, and comparing to pictures from birth, its awesome to see how much she has improved. Her skin color is more "normal", her whole body just seems more filled out, and her face is looking good too.

Riley had her first eye exam the other day. They were testing for Retinopathy of Prematurity (ROP). This is somewhat common in premature infants, due to the amount of oxygen they are receiving - it can cause extra oxygen in the eyes, which results in extra blood vessels forming, which can detach the retinas. Laser surgery can fix this, but luckily Riley passed the test and won't need that. They will check this once again in a few weeks, but just like the other tests, its rare for something like this to occur after a negative test.

When we were up there today, one of the doctors gave us a complete run-down of Riley's condition in every category. She is ahead of the game in weight gain, feedings, size, and overall development. Her lungs are still a little behind, but she hasn't had as many instances of de-sat lately, and the seizure activity has stopped, from what they can tell. They had to turn up her PIP today, but since doing that she has been very stable. They are still very hopeful that over the next week she'll be weaned back down and have that ventilator out soon. Given her growth, that creates some optimism in this area. If she can remain stable through her handlings, we should be able to start doing some skin-to-skin.

Since everyone has been asking, here are a few photos of the nursery. Thanks again to the Grandmas for all their help getting it together. It's still a mess, as we've been sorting through all the stuff from the shower, getting furniture put together, and also purchased some more barely-used "hand-me-downs" from some friends tonight. Just need Riley to be there to complete it now!





I know I don't say this enough, but thank you to all who are sending in your thoughts and prayers, and the many who have stopped by to help us in many different areas. We are extremely appreciative and have felt very loved lately.