Sunday, July 27, 2008

The 4 of us

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 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 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!

Thursday, July 17, 2008

The last week..

has been pretty uneventful...YEAH! We couldn't ask for more at this point. Our little Bela has decided to play by the rules for the first time in her life..(well, sort of). Last Friday we made a little trip to the ER, just because she dosn't like to go too long without some thrills, I think. She had a very wet cough all last week and we were paranoid it was possibly the start of another big problem...that is how her recent heart failure all started. So we went in to have some tests done and they all came back looking great. Phew! First trip to the ER ever that didn't end up in admission. We were prepared for it but hoping and praying for it NOT to happen. She gave everyone she saw big smiles, and we knew soon after that she was okay. THe cough mysteriously decided to dissapear the next day. It was nasty while it lasted though, and has come and gone too much in her little life, so we decided to do some more testing. We went in for a barium swallow study today after her regular apt with her cardiologist. (the cardiology apt went wonderful, with Bel
weighing in at 9 lbs 9 ounces--8 ounces in one week! :)) The swallow study was not quite so wonderful. Turns out she has a severe swallowing disorder, as the speech pathologist called it. HUH?! What else!? Basically, she has very weak swallowing muscules and so she has been aspirating milk into her lungs this whole time, causing the cough and congestion, and most likely is the culprit for the pneumonia she has last month and the resulting heart failure. THey start out by giving her barium in a liquid form, the consistency of milk. If they notice any aspirations they go up to the next level of thickness. She has to go up 5 levels to the consitency of cold pudding. So bottom line of the study was: no more bottle feeding or nursing for Bela. SHe will aspirate and it is too risky to cause infections. Which sorta stinks because she actually enjoyed her bottles, they usually put her right to sleep. It also means we'll be seeing a lot more of her feeding tube, and she'll probably be using it for a lot longer now. SO much for working at the bottle and getting that thing out of her nose! It sorta upset and frusterated me a little this afternoon, but then I realized that I'm really glad we figured this all out and it will ultimatley help her stay healthier. SHe might even grow quicker without expending the calories bottle feeding. When she does start solids, I will have to thicken them up so there's not chance of aspirating. Hopefully this problem will get better over time as she gets stronger.. Barium is thick white chalky stuff and Bela decided she wanted to let me know just how gross it was so she threw up all over me right after she drank it. I left the hospital today with a huge white mess all over the front of me, and all over her...I'm sure people were wondering what the heck I feed my baby.

Overall, she's doing great. Heart wise.. everything still looks the same, which is good. Except I learned today that her aorta (which started out the size of angel hair pasta) has grown significantly (to about the size of a pen) which is a VERY good thing. In her next surgery they will be reconstructing it to make it bigger (about the size of a thumb) and doing surgery on a 'pen' is a lot less risky than 'angel hair pasta'. Sorry for all those analagies...that's the way it was explained to me. We're most likely looking at having her cathed around the middle of August and having surgery beginning of Sept. We may or may not have to stay at the hospital in between depending on what the cath shows. I sure hope we get to come home. I can't believe that's only a month away. So scary and so anticipated at the same time. There are so many risks associated with the surgery, but obviously more associated with not doing it.

We had her first apt with her endocrinologist on Tuesday for her Turners. IT was sorta wierd to have an apt for the Turners when ALL the focus has been on her heart. It was like, Oh yea, we also need to deal with this for the rest of her life. Right now she is going to need some thyroid hormone because her thyroid level came back low from her blood work. In about a year she will start growth hormone. And that's as far as I wanted to look ahead...there's much more to do but nothing that I wanted to deal with right now. The dr. probably thought I was wierd when I literally asked him to stop telling me what she needed, but I don't care...I can only take so much of what lies ahead for my daughter. He said that physically, she wasn't really a 'text book' turners baby...she dosn't have too many noticable physical symptoms. (Despite her being WAY off the growth charts). He said that she's got two of the most difficult diagnosis for growth against her so we'll continue to shout for joy for every little ounce that she gains.

She also had her developmental evaluation and we got some wonderful results...she is within her age group in every area of development right now except feeding because of the tube feeding. I was sooo happy about that!! So much hospital time and she's still keeping up. We'll get her reevaluated after this next surgery, but at least she's going into it pretty much at her level and not behind.. that really 'uneventful' these days?!?! As long as we are home and Bela is pink and smiley, I guess that's exactly what it is...

Sunday, July 6, 2008

Eden Grace Ridgway

We've shared our journey to some extent with the Ridgway family and their beautiful baby girl Eden Grace who was born the same day as Bela. It is with a very heavy heart that I make this post to write of her passing yesterday, but I write it to invite all those who read this to please pray for her family during this time. We can only imagine how difficult this time is for them, and know that they are in need of all the support and prayers that they can get. So please pray for them. Their blog is linked under our heart friends section if anyone feels prompted to leave them a message. Eden was an incredibly strong little girl who fought a valient fight. She went through so much, and I know that now she is free of any pain or suffering, and held in the loving arms of our Savior. She and her parents inspired and taught our family and her legacy will live on in the countless lives that she has touched. We love you Marcus and Keisa.

Tuesday, July 1, 2008


We started the month of June out like this:

That day still haunts me sometimes...the thoughts of losing her and wondering if I was strong enough to get through that. I still think back on the day and am in awe of the blessings that were given to us. The blessing of life. We got to the hospital with no time to spare, in fact, her heart was already in full failure by that time. They were ready to help her and they did just in time. My little angel fought until she was where she needed to be to be saved. I still can't utter a word of prayer without thanking my father in heaven for the happeninings of that day. I would get to the hospital in the mornings, and for the first time be compleltey releived to see her this way...comfortable, not doing any work, just resting. She needed a break. Her body had been working so hard, unknown to all of us. Her left lung was completley collapsed with her right lung close to it. Her heart was trying to do so much work to pump with all that extra fluid built up. I just wanted her to take her time, to get strong. A couple weeks later, my little fighter was doing so much better...already breathing tube free and on her road to recovery...again.

Even giving us some beautiful smiles. I love her smiles... They mean the world to me, knowing that she is happy and feeling well.

Now my little Bel is back home...I walk by her bassinet a million times during the day when she is napping just to see her in it. I hated when she wasn't with me, when I'd have to leave my sweet baby at the hosptial and sleep next to an empty bassinet. I love when she's by my side and I can watch her chest rise and fall, alive and well. When she is awake, she is usually in her carrier, watching my every move...she loves to be close to me, and I love to be close to her..

I gave her her first real bath after 4 months.. She loved it. Now she gets one every night...such a simple thing is such a wonderful thing for us..

Here's some pictures from the last week at home...needless to say, we are loving every minute...

Bela had her weekly apt. today with her cardiologist and it was probably the best apt we've had so far. She gave everyone lots of smiles...a very nice change from nonstop crying. Everyone kept commenting on what a different little girl she was being. She's so much happier now. Her echo looked great and best of all....she was up to 8 lbs 14 ounces!! That was 8 ounces in 6 days!! She finally hit 4 kilos, she needs to be to 5 by her surgery, and it feels like we are finally on the way. Now she just NEEDS to stay healthy. We scheduled a tentative surgery date for Sept. 1st. That was a little surreal, and a million emotions passed through me. I'm not sure if I dread that day or look forward to that day...
My friend Kami came with me to my apt. today...I can't really even say how much it meant to me that she would want to come and do that with me. Sometimes I feel sorta alone in all this, and it was so nice to share some of my 'world', the life I live day in and day out, with a friend. SHe really got a full view of that world today too...we had the full apt complete with EKG, vitals, Echo, X-rays, and checks with her docs. We're so blessed with good friends, we can't even begin to expain what it means to be supported through this when it gets hard. It's things like watching Bela go through so much, wondering how it's all going to turn out, never being certain what tomorrow will bring...that make it hard. Somedays I wonder if I can really do all seems that latley so many of Bela's dear heart friends are losing their battles, even into their later years, and it is frightening. We understand that that was the plan for their life, and we know that Bela has one too. I know it's not good to dwell on this, but as a mom, I worry. It's what I do, comes with the job. I'm working on my worry level though. I have to have trust in the Lord, and lean on Him everyday, and be grateful for what we have. Each day is a blesssing, and tonight, I am extremely grateful that the end of June is better than the start of June. We hope for a very uneventful July.. :)