Friday, July 31, 2009
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.
Monday, July 27, 2009
Thursday, July 23, 2009
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:
Sunday, July 19, 2009
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.
Friday, July 17, 2009
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.
Wednesday, July 15, 2009
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!!
Sunday, July 12, 2009
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.
Wednesday, July 8, 2009
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.
Sunday, July 5, 2009
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!)
Thursday, July 2, 2009
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.