Written on 8:09 PM by gracefully discovering:
Almost three years to the day...that I've blogged, SMH. When I was pregnant with the twins and had just found out about Nia's heart, a mom of an adult HLHS'er told me that the people who blog about their kiddos are the ones who are struggling and having a difficult journey--the rest of the success stories are busy living life. At the time, I didn't really pay it much attention, but as I come back to this blog to begin writing about our upcoming journey---it completely comes full circle for me.
It's been three awesome years! The girls are growing up so quickly before our eyes: both extremely smart and smart mouthed, beautiful, fun, happy and loving little ladies. They are the most amazing blessings that God has ever given us. We've been busy living life.
But here we are, round three of surgeries, and I'm back to the blog. Nia has her Fontan scheduled for 1/24 and we go in tomorrow for her pre-op appointment. She has a little a cold, so we're thinking that they are going to postpone it until she is free of any virus or infection. I know that postponing it will be the best thing for her medically, but it just gives me a little anxiety. It's like we prepare for the day as much as we can, and then it's not the day--and you have to try and prepare all over again.
We haven't really had to deal with this for 3 years---she has been doing great heart wise, just her regularly scheduled check-ups. And now all of the feelings in my stomach get all tied up in a knot and I dream and I pray and I picture her walking through those double doors, where Nick and I can't go....and the next time that I see my baby...she is sedated, with a breathing tube, IV's, chest tubes, hooked up to all of the monitors in the WORLD and I can't hold her. I can't make her feel better. It breaks my heart....but I know that she needs it and that it is going to help her heart function as normal as possible.
I went back and read all of my post from the previous surgeries and all of the overwhelming feelings came back...and then I looked at my sweet baby girl and said "look at her now," You wouldn't know what she has been through. So I'm holding on to my faith in the Lord and my trust in her surgeon and believing that in a few months, she will be back to this crazy and feisty little girl that we all know and love.
We will find out tomorrow if it's a GO.
Written on 9:36 AM by gracefully discovering:
So anyone who knows me...KNOWS that I am frugal...or cheap as some people like to call me. I am the person who will wait until things go on sale, look for a coupon, put back an item because I saw it somewhere else for .30 cents cheaper, or even drive a few blocks down for gas that is only .4 cents cheaper!
Now, don't get me wrong, I will splurge for things like nice shoes, my hair, or things that I really want. But for the most part, I don't like to waste money. I think it has a lot to do with me growing up po' and not wanting to ever go back there again!
Anyway, I have learned the hard way though, that being frugal or cheap isn't always the best and could in fact cause one to spend more money than she would have if she had just bought the brand named in the first place. I feel it's my duty to warn the people on which items are a MUST HAVE name brand:
3. 1. TAMPONS! Do not, and I repeat, DO NOT be cheap like me and buy the Wal-greens brand tampons...even if the box says comparable to Tampax Pearl. It's not, trust me! Just go ahead and spend the extra $1.49 to get the real thing. Your clothes will appreciate you in the end.
2. DRAINO: If you think that Drain-X will do the job...think again. It won't, your sink will still be clogged, even if you use the whole dayum bottle!
3.Peanut Butter: Fake peanut butter just doesn't taste the same...I don't know what it is but it just doesn't spread right on the bread! Your taste buds will thank you for this one. The real thing is always only about .50 more...not that big of a deal.
Paper Towels: I try and try to buy cheap paper towels, and every time that I try to wipe something up- I get mad at myself for being a cheap-o. They wither and tear so easily, that I have to end up using more- which makes me buy more and in the end spend more money!
5. Vanilla Wafers: Nothing can compare to Keebler's Nilla wafers! Nothing, so don't cheap out...you WILL be disappointed.
6. Dish detergent and washing powder: Clothes and dishes wish still be dirty! Or you will have to use a whole lot of it to get it clean. Stick with your brands...but look for coupons!
7.Deodorant: Now, I haven't done this one..but I can just imagine- that nobody would want to walk around smelling like cheap deodorant!
That's all I have for now, if I think of more...I will create a new post. I'll try a lot of things off brand just to see if its good. Sometimes, you can't even tell the difference...but there are a few exceptions. So beware!
Written on 11:54 AM by gracefully discovering:
Today Nia gets moved to the regular floor! This morning they took her last central line out- so we are free to go in about 2 hours!
I forgot to mention yesterday that Nia pulled BOTH of her IV's out of her wrist! This morning, I was holding her..and I looked down and she had her bottom stitch wrapped around her thumb! This little girl is so feisty! I guess she was telling them that she is ready to go home!
I'm happy that we are going to the floor- BC at least there is a pull out bed in the room. last night, I crawled up in two sitting chairs...definitely not the most comfortable...but it served its purpose. I was close by Nia whenever she woke up.
That's all for now- peace!
Written on 10:56 PM by gracefully discovering:
So last night was my night at home with Naomi...but before that, mommy and daddy went on a little date!
Durante sat at the hospital with Nia ( I just hate leaving her by herself...so we had to send a replacement) and Phebe watched Naomi. Nick and I needed some alone time and it was nice. Although, we only went to dinner (and I had the BEST strawberry banana margarita..yum!) it was great convo and lots of fun!
Anyway, Naomi and I had a good time together...and I swear- having one baby is a BREEZE!
Nick stayed with Nia last night...and I get a call this morning that she "woke up a new baby." Normally Nia is kinda quiet and just chills. But today, according to Nick, she was laughing and smiling and playing all morning and afternoon! He made a video and I don't know how to upload it, but once I figure it out, I will post it. She looked so cute and HAPPY! I was told my another heart mom that after the Glenn she saw a huge increase in her baby's energy. So maybe this is it! Who knows?
Her blood pressure is doing much better. They have her on 8ml of Captopril 3x a day...which is A LOT! She doesn't seem to like the taste of it, so I asked them to flavor it...and it didn't seem to make a difference. I tasted it to see if was nasty-but it didn't taste like anything to me. I really hope its not this hard to give her the medicine when we go home...because I will quickly hand that responsibility over to daddy!
She is sleeping now...and seems to be singing or moaning or something. It's quite entertaining!! I need to try and sleep while she is...but this chair isn't very comfortable...and...I need to pump! 2 more months and counting!!!!!!!!!
Written on 8:46 PM by gracefully discovering:
Nia is doing great! SHe is still in the CVICU- only because her blood pressure REFUSES to go down! They have tried a few medicines- but they are not working. They even had the renal Doctor come in and check her kidneys, but THANK GOD nothing was wrong. I couldn't imagine dealing with heart and kidney problems!
She is a super star on the CVICU floor...people LOVE her! They are always coming in the room talking about how cute she is. When I came in today, someone had made/given her a pinkknit hat and made her a name sign for her crib! She is quite the people magnet.
She is sharing a room with two other babies that just had the same surgery. It's so funny because all three of them are about 2 weeks a part from each other. They all have different heart conditions- but had the same surgery. I feel so bad for one of the little girls. No one ever comes to visit her. Well, I saw her mom yesterday for about 30 minutes. She seemed nice- and I didn't want to be too nosy and ask her why no one was here with her!
She is married and the little girl is her only baby.....so I don't know why this precious baby is so alone ALL of the time! But I don't know her situation, so I can't judge.
But what I can do, is show this little girl some attention. So when I read to Nia, I sit in the middle of them so that she can get story time too. I even bought her a halloween onesie when I went to get Nia's today. Although, I don't think that they can wear it!! But it'll be cute for a picture!! I hope her mommy doesn't mind. She seems (the baby) very cranky and it could be because of the pain from the surgery...but I bet some of it it because she misses her mommy and daddy...or someone who feels familiar. Mom did say that baby had been in the hospital for a while before the surgery.
Anyway, Nia is just progressing fabulously...just like last time. I hope it continues and that we are all back home being one big happy family in no time. Nick and I have been swapping out babies! Tonight is my night at the hospital and he is at home with Naomi. Last night Naomi and I bonded big time.
I love my girls...Nia just woke up and is ready to eat...so peace out!
Written on 4:05 PM by gracefully discovering:
So the day that we have been waiting for, for the past 2 weeks is finally here. As I type, they are cutting through the scar tissue (from the first surgery) to get to her heart. She went back around 12:20pm and they gave us our first update at around 3:15. She did well with the anesthesia, but they had a tough time getting her central line is because she was on the chubby side (the nurse's words..not mine).
This morning I held her for so long because I know it'll probably be a few days before I can hold her again. She was so cute and didn't have a clue about what she would soon endure. She was a little fussy because she couldn't eat anything after 9am...and even still she could only have Pedialyte after 3am. But she calmed down and went to sleep- which was good!
Last night, I kept having the dream where they took her through the double doors and we couldn't go with her...and this afternoon....it happened. They took her and we couldn't go and I cried. But I must say, I am much calmer this time around. For the Norwood, I was a complete mess...probably had a lot to do with all of the hormones from just having two babies.
I'll update again once we hear something.
I'm missing Naomi big time. She stayed with Mrs. J last night and is staying with Audrey tonight. Tomorrow, she will be with either mommy or daddy! (I'm thinking mommy- I don't know if I can last 3 days!)
Written on 2:41 PM by gracefully discovering:
Got a call from Mary, the Cardiac nurse, and she said that Nia is scheduled for surgery Tuesday...pending a negative flu test that she will take on Monday.
The part that sucks is that all of our help will be GONE next week and Texas Children's has a new rule that no children under 12 can visit the hospital. I talked to her about it and she said that Naomi would be able to be there with us as long as Nia is in CVICU- but once she gets to step down she wouldn't be able to stay.
I'm going to talk to the Social Worker and see what arrangements can be made. I mean, there has to be an exception to the rule (there always is)....and if there isn't, a Social Worker always knows how to get it done!! (I'm just a tad bit biased)
So please pray that my little pumpkin can have her surgery next week and that it goes extremely well!
thankyouverymuch!
