Oxygen baby

A normal person's blood oxygen level is approximately 98-100%. Since Ivy is a "mixer" (meaning her oxygenated and de-oxygenated blood mixes together), her blood oxygen level is usually between 75 and 85%. Over the past several weeks her levels have been slowly declining (which is normal with her condition). About two weeks ago they dropped quite a bit, and then dropped even more this week. She is now between 62 and 68%, which isn't good. Since her surgery has not yet been scheduled, her cardiologist decided to put her on oxygen to see if that will help get her levels back up (and keep them up). So here she is with her little nose cannula. She's still beautiful, but I feel bad for her because it's never fun have stuff up your nose. She brings back memories of my little niece Ryan when she was on oxygen years ago.


We are wishing little Ives luck to get the oxygen she needs to be able to last a while longer until her surgery, which sounds like it is getting close. I can't wait until we don't have play this waiting game anymore. Her MRI is on May 5th so hopefully then we will have a better idea of a surgery date, we're crossing our fingers for June.

Easter Blessings

So this weekend was THE weekend for us. We had a lot of people come to Boise and stay with us for Ivy's blessing on Easter Sunday. We had tons of fun and it was so good to see everybody. Of course, Ivy looked beautiful in her easter/blessing dress, and loved being the center of attention. Scott gave her an amazing blessing (did you have any doubt, he always gives great blessings) and then we had a fun brunch at our community clubhouse. We can't wait to do it again. Well, actually we can, we aren't going to be having any more babies any time soon!

Besides Ivy's blessing we also did average Easter stuff, like coloring eggs,

Playing in our new Curious George jammies (thanks Heidi, they love them),

Playing on jumping stilts,

And putting bubbles in Russell and Collettes fountain,

You know, all very boring stuff!

4 Month Check up

Today was Miss Ivy's 4 month checkup. It's hard for me to believe that it's already been 4 months, she still feels like a newborn to me. The doctor thinks that she is doing very well developmentally, but he is a little concerned about her weight, surprise, surprise. Here are her stats:

Weight: 10 lbs (3rd percentile)

Height: 23 inches(10th percentile)

So yeah, she's small, still very close to newborn size, which probably explains my feeling like she's still a newborn. Anyway, to get her weight up the doc recommended we start giving her rice cereal once a day. I really hope that works, cause I'm getting sick of this weight issue!! Other than that all is well.

So since Ivy is now 4 months, I just thought I'd give an update on other stuff, besides stupid weight.

Ivy is very happy, she is always smiling and silly, and is hardly ever in a bad mood. She is holding her head up like a champ, and is working on getting used to laying on her side rather than her back. She hates tummy time, it makes her cry until she turns blue. Her favorite toy is her little monkey mat with its dangling monkey, zebra, and mirror. She likes to grab hold of the zebra, and gets frustrated when she can't get him. She still enjoys spending time with her pacifier, only now she gets mad because she can pull it out of her mouth, but can't put it back in. Her favorite person in the house is, of course, her mommy. She actually cries when I leave the room sometimes. She is fascinated by her crazy, out of control brothers. She could stare at them for hours while they play, fight and cry with one another. She is always happy to see daddy when he gets home from work, and loves for him to hold her for hours on end.

She is one sweet girl and we are happy to have her in our family!!

Time for an angry rant

Ok, so I know that nobody else thinks this is quite as annoying as I do, but I need to get it off my chest.
As you probably already know, Ivy has a nurse that comes to our house once a week to weigh her and check her oxygen levels to make sure she progresses well before her next surgery. Every week Ivy is supposed to have gained 5 to 7 ounces and her oxygen level needs to be between 75 and 85 to be considered thriving. Her oxygen level is always great, but for the last month or so she hasn't gained enough weight, it's always between 1 and 4 ounces. The nurse made me put her feeding tube back in about a month ago, the first week she didn't gain 5 ounces. I took it back out about 10 days later because I disagreed with her (Ivy didn't gain more weight with it in). It is known that kids get oral aversions when they have a feeding tube for too long, and I think the nurse didn't know what else to do, the tube was the easy solution. It turned out not be a solution, just a giant pain in the butt.
Last week when the nurse tried to tell me to put the tube back in I refused. I told her that it wouldn't help, and we needed to find a better solution. I suggested that one of the reasons she failed to gain weight could be that she spits up quite a bit. The nurse agreed and sent us to our pediatrician to see if he could prescribe her a second reflux medication (she is already on zantac). Our pediatrician decided to look at her overall progress instead of week to week. He said she is still within her growing curve and sees no reason to be concerned. She has gained about 2 1/2 pounds in just under 2 months, and that is fine. So he didn't prescribe the other reflux med because he thought the risks outweighed the benefits. He suggested we feed her less formula(45mL), every hour and a half, instead of the full amount(70mL) every three hours to cut down on her spitting up. So that is what we have done (except at night, because really, every hour and a half, I would probably murder someone).
Nurse Nancy came yesterday and again Ivy gained only one ounce. I have really come to dread the days that she comes because I know Ivy didn't gain enough (I weigh her myself), and Nancy is going to give me that look, like your not doing enough to make her gain weight. She asks every time, "How much are you feeding her, and how often?" Even though she knows the answer already, and then she looks at me like she doesn't believe me. It's so frustrating, I'm not lying, I feed my child, all the time it seems like. I can't do anything else, because I am always feeding her!
So now I ask you, (those of you with children)how much did your babies weigh at 4 months? Do you think your kids gained 5 to 7 ounces EVERY week? Is it possible that Ivy is just small, like my boys who are both in the 10th percentile for weight. They weren't like that when they were babies, but they are now.....does that matter.....I don't know what to do. I'm frustrated and feel like I've tried everything. If you have any suggestions please let me know, I could really use some good advice.
And FYI - In other areas Ivy is right on schedule, she smiles, coos, and laughs. She is becoming an expert holding her head up, she swats at toys dangling above her, etc. I can't imagine that anything is really wrong when she is doing so well in all other aspects!

Random Pictures and Stuff

So I haven't really posted many recent pictures in a while, so I thought I would update with a few random photos.
Here are a couple of Ivy, I was messing around with the camera and trying to get a good pic for her baby announcement, neither of these ended up being the winner, but they are super cute!

Here is Corbin teaching Dex the names of the items in this book, it is just so cute when they aren't fighting and actually enjoy each others company!

Here they are again playing nicely. They had built a "fort" using the coffee table, blankets, couch cushions and pillows.

Here is proud papa with his baby girl.....He loves her so much!

Here are the kids being silly. Dexter (as mentioned in a previous post) is obsessed with his belly button, so whenever he wears his footed jammies we have to leave the zipper partially down so he can still get to it. We thought it would be funny to do it with the others also.

Here is Dex again, he put like three pairs of shoes into his open jammies.

And again with his crazy rooster hair, this is how he wakes up each morning.

Here is sweet little Ivy at her first Cardiology appointment here in Boise, she did pretty well for the first 5 minutes of the echo, then cried for the next 10.

And one more of Ivy all dressed up for Valentines day (I realize it's tomorrow, but we celebrated today). Notice her tube is out again, but that is only because she ripped it out this morning, tape and all. If you look closely on her right cheek you can see some red splotches from the tape being ripped off, poor thing! I thought I would give her a break before putting it back in.

Wolverine baby continues to astound us

So Ivy's home health nurse, Nancy, came to our house yesterday to weigh her and check on things. Ivy weighs 8 lbs 9.5 oz now, which means she gained 6.5 ounces in one week, that is excellent weight gain! The most amazing thing is that she hasn't used her NG tube (feeding tube in her nose) for about a week, she hasn't needed it. She now takes all her feeds by bottle, even at night. So Nancy and I came to the conclusion that she doesn't need her NG tube anymore, except for taking her meds. It is pretty sad to leave an annoying tube in someones nose just for the convenience of giving them medication twice a day, so Nancy showed me a trick on giving them to her orally, told me to try it Monday night and Tuesday morning, and if she didn't spit up, the tube could come out!! Well it's Tuesday morning, and guess what, no spit up!! The tube is out and I am so happy!! We can see her beautiful face again!! She is doing so much better than anyone expected, and we are so pleased with her progress. She seems just like a normal baby now, not like she spent 7 weeks in the hospital and had 3 surgeries. You certainly can't tell from looking at her (with clothes on). We are so proud of you Ivy, keep up the good work.

Growing fat, growing up, and growing gray

This friday will be 4 weeks since Ivy was released from the hospital, and she is doing very well. Last week the doc increased her feed amount to help her gain more weight, and it is working out, on Monday she weighed in at 8 lbs 3 oz. We have a Home Health nurse, Nancy, coming over once a week to weigh her and check in on anything we need or are concerned about. We also have a Home Health physical therapist, Libby, who comes to make sure everything is developing as it should. They both said on their first visits that she looks better in person than she does on paper, which makes me feel good about her progress. Her scars are all healing up nicely, we no longer have to change the dressing on her belly scar, since the wound is closed and healed and there isn't a dressing anymore, and her chest scar looks excellent (for a scar spanning the entire length of her chest). We are currently applying for several government assistence programs to help pay for all the medical costs, (her hospital stay alone was over $300,000 not including any doctors, surgeons or anyone else, just the stay!). Of course, we have insurance but even with that we are still responsible for a significant stack of cash!! Here are some nice pics of Ivy getting big and fat, and looking adorable as usual.

Our sweet boys are growing up! We had a haircutting party a little while ago, and they didn't even cry!! They both look so much older with less hair, especially Dex, he looks like a little boy, not a baby anymore. They are both so helpful with everything (most of the time). They still fight over things a lot, but it is getting better. Dex is saying more words everyday, his favorites include: Mine, No, Mama, and remote. He still can't say Corbin or Ivy, so he calls corbin "in" and Ivy "I", so cute. Corbin got a cute little apron from Stacy for Christmas this year and he loves to wear it while we make lunch or other things, he looks so cute in it. Funny story, Scott loves jello so he bought some the other day and told Corbin that the two of them would make it, but then he forgot. So the next day Corbin brings me the jello and says, "Lets make jello." I said, "But that is a daddy project, I'm Mommy." So he says, "No, Mom's can make jello, Dad's mom made jello in Salt Lake!!" He's so funny.

a>Corbin is definately my child, eh!
And now for growing gray, that's right, I have some gray hair coming in! Thanks Ivy! I will come right out and say, it is from stress!! With no time to myself, the constant need to feed, bath, or comfort someone, and trying to keep my breastmilk from drying up its a wonder it didn't come in white! And after all that my breastmilk dried up anyway (imagine powdy lip, and chin quiver here). It's just not the same as breastfeeding, and it makes me sick to think how much money we will have to spend on formula........but what can you do.