is BUSY. Between work and family there really isn't much time for much else. He is loving work, fortunatley staying busy in a field that hasn't been too great for some others in his line of work lately. I would have to say that his most favorite thing to do is rock and sing to his little girl...She has definatley stolen his heart big time. He calls her his Belarina and she is in love with him.
hmmm...where to start? I'm not sure most of the time what exactly it is that completley fills my days and keeps me so busy, but there's a lot of it whatever it is. THere's a lot of changing thrown-up-on clothes, changing diapers, giving meds, checking NG tube placement, filling bags of milk, pump feeds, rocking, puzzles, car crashing (Benson's cars), chasing, cleaning up messes..you get the point. Life is crazy and fun with a 2 and a half year old and a 5 month old with a CHD. I had 12 apointments in the last two weeks... really, 12. I even threw one for Benson in there that turned out to throw us for a big loop...I'll get to that in his update though.. I really am just trying to take advantage of this time at home and hold and love on my kids as much as I can before the world turns upside down again. I try to not think about what is coming up for my Bela... It's been especially hard latley because she has been doing sooo good and I don't want to see that end and feel back at square one again. I am learning so much latley, it's amazing what children can teach you. Benson and Bela teach me so much.. Isn't it supposed to be the other way around? All I know is I am blessed.. I admit that sometimes I get down or frusterated. I had a particularly 'down and frusterated' moment the other night. I went into Bela's room before I went to bed to make sure everything looked ok. I check her breathing, her sats, her milk, her pump, her color...all those things I wish I didn't have to watch so closely.. I realized her NG was out, it was the third time that day. SOmtiems the tube stays in for 3 days straight without coming out and sometimes it's a few times a day.. I really hate those days. So anyway, she was sleeping so peacefully and I did NOT want to shove that tube down her throat and make her gag and scream. At that moment I wished so bad that I could just let my sweet baby be just that, a sweet, normal baby that I could just let sleep, tube free. She loves to have that tube out...you can tell that she feels so much relief when it's out. But...she needed her milk...So I got all prepped to do it. Tried twice and for some reason it didn't just slide down too easily. The third time I got it down okay and taped her up.. By this time she was trying to catch her breath, gagging and screaming, so I picked her up and just held her and cried with her and told her I was so sorry... It's the little moments like that that you just wish it all went away for her sake. Most of the time I see Bela's anatomy as special and unique, a gift from my Heavenly Father.. But there are times when I wonder why. I can't wait until she is stronger, when I can take her out and show her off. When she dosn't seem so fragile, when she can do more on her own... When she can enjoy life and when the littlest things don't compleletley stress her out and wear her little body out. I was able to get in contact with the families of two girls with HLHS and Turners, one is 2 and one is 9 and it has really given me a lot of hope. They are both beautiful and happy, but most importantly, they are both survivors and I was so happy to find them. It has been so uplifting to have associations with so many amazing people that are going through similar things. Also something that has REALLY made my week this week was receiving the most special and beautiful gift...Eden's mommy Keisa gave me her milk that she so lovingly pumped for her little girl. I can't even begin to explain how happy I was. I felt like I won the lottery. I wanted sooo badly to give Bela my milk through her next surgery, but I was starting to lose my supply. I was still trying to pump as much as I could, but it just wasn't happening as much as it needed to to keep my supply up. Just as I was not able to keep up anymore, I was able to get this milk. Everytime I get a bag otu of the freezer to defrost to give to Bela I am filled with so much appreciation to Keisa for that gift. I know that Eden is looking out for her little friend...
He is the best. He'll never know how much his sweet little self helps me lots of days. He's OBSESSED with cars (the movie and all the little cars from it) and Diego. He has also learned to take off his diaper and I'm not sure what to do about his new thing-- taking it off during his nap. He did go potty in the toilet for the first time yesterday...why is that so hard to do? I don't get it....
So, about his doctor visit. Turns out Benson needs surgery...lovely huh?! When it rains it pours! Since he is only 2, he won't get mad at me for talking about it... One of his testicles never fully descended so he has to have surgery to bring it down all the way so it will not affect his ability to have children. The dr. said the word 'infertile', and I said 'do whatever the heck it takes, just don't say that word about another one of my children!' He also has a hernia, so he'll be going in on August 4th for his procedure. It isn't anything compared to Bela's, but it will be a huge deal for him and a traumatic experience. He has to get lots of anesthetics and two incisions. My poor boy... It should be a fairly easy recovery though.. We told them it needs to be before August 12th, because we had another surgery for our daugther, and luckily they were able to get us in. Which leads me to....
She will be cathed probably Aug. 12th or 13th. Like I said before, we don't know if we'll stay in between or not, but it looks like surgery might be sooner than Sept 1st. We'll see. Only Bela can tell us when it's time. Her apt. on Thursday at St. Joes was a little long and stressful, but everything still looks good. She finally hit the big 1-0!!! YEAH for a double digit weight!! She had to get blood work drawn...NOT a fun experience. I'm so on the verge of tears these days, and they just flow when hers start to flow. There are so many times when all that is going through my mind is, 'is this really good for her?' With so many apointments, sometimes I wonder... She is doing better than she ever has and it has been a wonderful little break from the up and down rollercoaster. Figuring out that she was aspirating has really helped her. She is sweet, tiny, and oh so cute.. She loves to eat her hands...constantly.
Here's some pictures taken today with my parents... My dad came do say goodbye.
My mom and dad are going back to Brazil for another church assignment... my Dad is going to be the legal counsel for all of brazil for the church. My Dad leaves in about a week, so this was goodbye for awhile and it was hard. I am definatley close to my mom and dad, and have leaned on them a lot during this. My mom is staying through Bela's next surgery and then she'll join him. It isn't very good timing, but we know that the Lord knows best!