I think if I went back and counted, about 75% of my blog posts beginning with some kind of explanation or apology for not updating more frequently. So here's another one...
I know that there are a lot of you who I talk to IRL or know my family and friends that get frequent verbal updates as to how we're doing, but that there are also some of you who keep checking my blog waiting for updates and have no idea how things are going for us- and to you I apologize!
Taylor was released from the hospital way sooner than we had anticipated on Thursday the 29th. The Dr's and nurses were all very pleased with how her body is handling her condition and felt comfortable letting us go home and continuing our waiting game of monitoring her condition as her little body further develops. We feel especially blessed with how well she's doing due to the fact that it is very rare that a baby with Ebstein's be released from the hospital w/o having had open heart surgery!
We're not out of the woods on her not having to have surgery yet though. She has appointments with her cardiologist, Dr. Stephen Pophal, every 2 weeks for at least the next few months. We went to our first appt. last Thursday (the 5th) and he's very pleased with how she's doing still. I walked away still wishing that I had more specifics about what to expect in the future- but I also can accept the fact that there's not really an answer to my questions b/c so much depends on so many other things that none of us can control.
Some of the thing that they're monitoring with her are: her blood oxygen saturation levels (that they're high enough) and then how those change as her heart and lungs develop over the next few months, her weight gain to ensure that her body is taking in enough calories and that he organs are functioning well and getting the blood flow that they need, and then still watching for the development of an arrhythmia. There are plenty of other things too, but those are the biggies.
So how is her condition effecting her and our day to day lives? She came home from the hospital with a Pulse Oximeter monitor that tells us her Blood Oxygen saturation and her heart rate at any given moment. They have the range of levels that they want her to be within programmed into the machine and an obnoxious beeping alarm goes off if she's outside of those ranges. Currently this is the source of many negative feelings within me! See, it isn't a life or death matter if she goes outside of a range- it's just something we needing to be watching for and ensure she's not consistently outside the normal ranges, or being there for more than a couple minutes (which still is not urgent, just a red flag to be looked into more). We she jumps outside of those ranges for a few seconds all of the time! Particularly in the middle of the night when she's sleeping and extra relaxed- which means in the middle of the night I have a loud beeping alarm going off regularly that makes me get up and check on her only to discover that she's fine and her levels have usually already returned to where they should. Luckily she's gone from having to be hooked up to it 24:7 to now just having it on when she's sleeping and we're no right there watching her. In a few months she may not have to have it at all. I'll be doing a happy dance that day!
So back to our day to day. She's only on one medication- Sildenafil, more commonly known as Viagra! I actually knew prior to her needing it, that viagra's original usage was to assist with increased blood flow in babies and then they discovered an interesting side effect in adult males and you all know the rest of the story.. The funny thing though is that she has to take it orally 3x a day, which means a decent sized liquid bottle of it every month. I guess that this is so much more of a prescription sized than it's common usage that pharmacies can't or won't fill it w/o all kinds of special authorization from the Dr. and insurance companies. I guess they don't want some poor guy overdosing!
Because of the need to monitor her calorie & food intake, she has to have all but one or two feedings a day via a bottle so that we know exactly how much she's taking in. No big deal if you just formula feed, but since I like to try to breastfeed for as long as I can keep it up (only 4 months with Hailey and 6 with Katelyn) this means that I have to pump and then feed her. This takes more than twice as long as just nursing! I can nurse her a couple times a day, but she's become a little lazy about it since the bottle is so much easier, so I still end up pumping. The couple pros I've found (in making an intentional effort to find a bright side) is that there so much less discomfort when my milk came in b/c of having to pump so regularly and not waiting on her to be hungry and then I can also hand over a bottle to anyone who wants to feed her.
Other than those things and the fact that we are way bigger germ-a-phobes with her than we were with the other girls, things feel very normal around her. Well, at least what I would expect as normal for having a new baby and 2 other young kids. Which actually means that our house is very chaotic!! But I love it and the girls absolutely lover her. I was hoping the the novelty of having a new baby in the house would have worn off so that I wouldn't have to keep them from constantly touching and kissing her, but I love seeing how much they love her and I'm looking forward to seeing them play together as they get older!
Sunday, February 8, 2009
I think if I went back and counted, about 75% of my blog posts beginning with some kind of explanation or apology for not updating more frequently. So here's another one...
Wednesday, January 28, 2009
Hey scrapbookers! I just found out about a need that I know that all of you can help with! The Child Life offices here at St. Joe's does activities for the families of pediatric patients at the hospital- they do tours for siblings and patients to teach them about the hospital in kid's terminology, do craft activities for kids and are working on having some activities to help parents pass the time as well.
My mom and I just talked to the director on our floor and she was telling us about a mom teaching how her how to to crochet and then maybe she could teach other people. Taylor is currently wearing a crocheted round-loom baby beanie that my SIL Toni made for her. My mom was telling her about how those would be easy for moms here to learn and then they could make them for other babies or to donate to the pediatric units here. So my mom is going to come teach her how to do it.
So then scrapbooking came up and they are wanting to have scrapbook days/nights here for the parents, but they haven't started it yet because they don't have any scrapbook paper! I told her how I have so much paper that I know that I will never use and that I have a lot of friends who scrapbook that I'm sure have gobs of unused paper as well and that I would try to gather some up for her.
SO- for all of you Phoenix readers, if you would like to help me gather together a decent size donation of scrapbook paper and supplies to donate to the Child Life Center here- please let me know ASAP!
The director was thrilled about the idea of having these things donated and the help that my mom was going to offer on the beanies- so that leads me to wonder what else all of us crafty/scrappy people could do to volunteer here!
Tuesday, January 27, 2009
Taylor was born on Friday Jan 23rd at 12:08am. She weighed 7lbs 6oz and was 19.75 inches long. She's adorable, which I know I'm very biased- but she's also won over every nurse and hospital personnel that have met her.
She's had a rough little life so far though. About 10 hours after she was born she was AirEvac'd down to St. Joseph's in Phoenix via leer jet (she already likes to ride in style!). I got to ride with her (yes meaning I was discharged from the hospital about 9hrs after delivery) and then Ryan had to drive down and met us.
Once here she was diagnosed with a rare Congenial Heart Disorder called Ebstein's Anomaly. Which the short and sweet is that her tricuspid valve is malformed which causes leakage between the upper and lower chambers and unoxygenated blood to be distributed to her body- which could cause her to cyanotic (or turn blue) and make her organs not function. Also, because of the cross flow of blood in her heart, her right atrium is very enlarged which could cause a heart arrhythmia.
With all that said about her actual heart condition, she's doing great. When any baby is born, there is a duct that closes that basically forces the heart to use all 4 chambers, something that isn't necessary during utero. At this point we're just waiting for that to close to then see how her body reacts when that happens.
She has a private room at St. Joe's in the CardioThorasic Intensive Care Unit- or CtICU. Today she was able to downsize the amount of equipment hooked up to her because she is eating on her own and doesn't need all of the IV nourishment, she doesn't need oxygen because her blood oxygen levels are going great on room air. She also was able to have a line removed from her belly button which will allow her to be picked up and fed a lot easier (some nurses have let us and others haven't because of it).
Overall, everything we hear from the staff hear sounds like they're all very hopeful about how she's doing and (fingers crossed) that she won't need to have surgery. But once again, that all depends on what happens when we know that the duct has closed.
Either way, we've learned and read enough that this is a condition that she'll be dealing with her whole life. We'll probably go home with monitors and oxygen and mommy and daddy needing to be very informed of what to watch for and do in the event that her condition worsens.
We've had so much support from friends and family and have been truly blessed. I can't say that the last 4 days have been easy for us, but the burden has definitely been lifted by everyone who has helped us with Hailey & Katelyn, provided us with things to make our stay more comfortable, put her name on temple prayer rolls in multiple states, had gifts sent to the room, or just sent well wishes and offers to help in any way we need. Although being away from home has made day to day logistics a little difficult, being in Phoenix where we're surrounded by friends and family has been so helpful!
I'll do my best to keep my blog updated as we actually have updates to share. As I said- we're playing a waiting game right now. But with as well as she's doing, the wait hasn't been so bad.
Thank you again for everyone out there praying for our family!
Thursday, January 22, 2009
I hadn't gotten to post this sooner, but I thought you all would like to know that at I've been scheduled for an induction at 5:30 this morning! I'll be sure share info and pics of my little angel ASAP!
Sunday, January 4, 2009
I wanted to post more tonight, but have to get to bed. But one quick update on baby. My Dr.'s office shared with me two weeks ago that they've been considering my due date Jan 24th rather than the 17th this whole time- yet they never mentioned it to me! Can you believe it?! You just don't tell a woman who is 9 months pregnant that she has a whole extra week!! After more discussion last week though, my technical due date could be sometime between the two dates (all based on the fact that I don't have a regular 28 day menstrual cycle in case you're wondering). So I only have 13-20 days left! Maybe less is I go early. And boy am I ready!
I wasn't planning on really doing anything formal for Hailey's birthday this year- I know, bad mom. But as she knew about her birthday coming up she kept talking about her party and her cousins and friends being there, etc etc. A lot of expectations. I knew that only my parents and Ryan's parents would be in town and then Kevin and Hilary were coming- which meant no kids or cousins. So very last minute I called up 2 of her friends from church who were actually in town the Saturday before Christmas and had them come over to join in the party. We let the girls make their own personal pizzas and my dad did pizza for everyone else (thanks dad!) and the girls got to decorate foam tiaras, wore dress up jewelry and Hil and I painted the girls fingernails. For being low budget and last minute- it went well and the girls had a blast and Hailey thought it was amazing, which is all that really matters to me!
Hailey is the best gift receiver ever, everything was exactly 'what she's always wanted' and 'what she'd been dreaming of' etc etc. I don't know where she gets these things, but she's hilarious and always makes us smile! She got a lot of great gifts, but the funny thing is that I would have to say that her favorite gift of the day was a Hallmark music card that played Cinderella music and the girls danced and danced to it. Hailey and Katelyn still fight over opening it and occasionally I hear it open late at night whil Hailey's supposed to be sleeping. I can't get mad though- it's kind of cute!
So I can honestly say that in the 7 years that we've been married, we've lived in Prescott, I've working full time for WF, and now with 2 almost 3 kids- I've done little to nothing for myself. Hobbies, education, just recreation in general have all kind of fallen by the wayside. I've known it's important for personal balance and enjoying life and having a creative outlet, etc etc. But I know that all of you can understand the list of excuses that can get in the way- being busy, tired, wanting to spend more time with family, needing to spend the time cleaning, catching up on laundry, etc etc etc.
Ryan has always encouraged me to pursue hobbies/passions- especially photography which is what I was going to school for and really enjoyed when we were first married. But I get frustrated with how much my skills and knowledge have regressed and it's just not as enjoyable anymore- basically because I feel like I should be better than I am.
In the last year though I've had a different interest, but done nothing about it. It's something that I have no prior experience with and no pre-existing skills with- but would love to master. My wonderful husband has been pushing me to go for it, I've put it off due to list of above excuses. But finally at the beginning of December (pretty much the worst time due to the above list) I took a Wilton Level 1 cake decorating class at JoAnns. It was 4 classes in 2 weeks- Tuesday and Friday nights from 6-8.
Ryan was super supportive and even a little pushy about me taking this class and even helped me with the "homework." The homework involved baking 2 different 2-tiered 9 inch round cakes and a batch of cupcakes. I also had to make 2 different kinds of buttercream frosting- going through about 9 pounds of powered sugar in 2 weeks- yuck! I'm not even a fan of frosting, it's just too much sugar for me!
As insanely tiring as it was to do this while 8.5 months pregnant, right before Christmas, and 2 nights a week after a full day of work- I LOVED it, as much as I thought I would. I can't wait to take the next level classes, but am going to wait a couple of months with the new babino coming very soon.
Here are some pictures of what I was doing:
There's a reason that this is such a tight shot- I have a VERY funny story about this first cake, but I'll have to save it for another time!
This was my 2nd cake (I don't have pictures of my cupcakes)..
Then Hailey's birthday was 2 weeks later...
The perfectionist in me has to say that I did this cake really late at night and then RIGHT before her party was about to start- so there's a lot that I would try to do better if I had more time.
While I was doing this class, I've been borrowing all of my mom's cake decorating supplies. She used to do cake decorating as well when I was really little and even did a few wedding cakes for people at church. So she had most everything that I needed. For Christmas though, my husband decided to continue being supportive of this interest of mine and bought me a 101 Piece Wilton Cake Decorating caddy and toolkit that has everything I need! The kit also has a decorating how-to and idea book and I've already used more powdered sugar to whip up some frosting and tried teaching myself more techniques.
I really need some reasons to decorate a cake and someone to give it too! I just can't eat anymore cake for a long time after having so much cake around in the last month- so if you have need for a cake, let me know, I'd love to have the opportunity to practice!
Thanksgiving for us was very very quiet. Ryan had to work Thanksgiving day until 2:30, all of our family (on both sides) were doing dinner in Phoenix and I had to work the next day, so all in all- it was going to be a really rushed trip if we went down. So we opted to make Thanksgiving dinner on our own for the first year ever. We looked around for anyone in our ward that didn't have plans either, but in the end it was just us. It was our first turkey and Ryan was all excited to try brining (sp?) it with a method he saw on Rachel Ray. I did a ton of cooking while Ryan was at work, he got home at 3:10ish and we ate this by 3:30....
I mention the time because I was really proud of being able to pull this off by myself with both girls because I wear out VERY easily being on my feet. But everything turned out great- especially the turkey. We were really proud of it for our first try! We had way too much food for our little family, but it was nice to have left overs!
Mid-November we had my first princess and the pea experience. No mattresses were invloved though. There was just a little princess Katelyn and multiple peas, up her nose. I retrieved 3, yes 3 peas relatively easily, but there was one more that I could see, but not get out. Sometimes it would get close to coming out and she'd sniff and it would go right back up- taunting me! I tried a lot of very creative tacticts- but nothing worked. Ryan came home from school that night and woke her up to try to get it out also. I don't think we were her favorite people that night! Eventually we gave up. Luckily it fell out of her nose during the night or else we would have had to take her to the Dr. the next day, and I'm sure she wouldn't have liked that at all! Needless to say, we began watching her eating/hiding of food much closer after that!