Wednesday, March 28, 2012
Bela has been doing pretty darn good. I'm amazed by her.. as usual. She dosn't want to be held back any longer! She begs me to go to the park, got to the store, get back to anything normal. We're taking it slow, but she's been out to the park a couple times when it's been not too busy and she's so happy to be sitting in the sand with her shovel in hand. Sometimes it's like she didn't skip a beat. She has times still though where she seems tired, or grumpy, or like something bothers her but she just can't quite tell what it is. But overall, oh my gosh! 3 weeks post-op and she's a rockstar! I'm just so darn proud of her, for doing something so hard and for coming out of it so well. She tells everyone that she just got her heart fixed and sometimes even shows them. I'm never quite sure how to react when she pulls her shirt right up. It's like she's actually almost proud of it, as she should be, but I cannot understand how at 4 she feels that way instead of just being plain old mad about it. We've talked with her a lot about it, so I hope she understands to the best of her little ability. Sometimes I think she understands it all better than I do! She's eating a little better this week too. The only thing not improving much is her sleep. She's up all night and moans and tosses and turns and climbs in bed with us and continues to moan and toss and turn. Last night I sorta lost some patience with it.. I love snuggling with her but I really don't sleep when she's in bed with me. But she gets so sad when I put her back in her own bed (which is about 2 feet away from mine). I think she's getting spoiled, but how do I not? I don't know what to do..hmm. Hopefully with a little more time she'll start sleeping more. For some crazy reason I'm still awake. Of course she's been sleeping great since 8...
I'm still just in utter and absolute shock and filled with joy that it's over. Anticipating this surgery was torture. Serious torture. I would lie awake and think about everything. I would remember her past surgeries and how tough they were then imagine this time around being so much harder. I'd worry about complications, I'd think of the worst case scenario. Then I'd tell myself to stop, breathe, and say a prayer to stop my crazy mind. It was hard in the hospital and there's been hard moments since, and people ask how I'm doing it, and I just want to make them understand that it dosn't really matter how hard it is, the happiness to have it over and done with a great outcome makes any hard day or moment okay. I don't think even in my wildest hopes and dreams I would've thought we'd be here 4 1/2 years ago. She was just considered too weak to survive. Everyone goes through hard things. Everyone. I was just talking to a dear friend today that is going through something hard. Completely different, but hard nonetheless.
I really believe that once everything is said and done and we go back to meet our Maker, that we will understand with perfect clarity how much were loved and looked after, and that everything we went through was for a very perfect and necessary reason. We will understand all the 'why's'. We will know we were never left alone. And above all, we will thank Him for it all. The test is to trust him while we are still here going through the day to day sometimes asking 'why'.
Thursday, March 15, 2012
It's been wonderful to be home.. It's just crazy to me that we are done with the Fontan. I can't say how amazing it feels to say that. It's hard to describe what it's like to wonder and worry and speculate and dread a surgery for 4 years. I had no idea what to expect since she was so little with her previous surgeries. And I can't believe 8 days later we were home. Done. It's DONE! Feels soooooo good.
The last few days have been a little rough for Bela. She is restless and uncomfortable most of the time. It's just going to take time. It's hard to be patient for her to come back to me because she was just too good before... I have to remind myself that it's only been 10 days. I just miss her.
She wants to be held and dosn't want to walk too much. She isn't sleeping too great either. She threw up a couple times yesterday but didn't throw up today at all. I think she just needs to get all the drugs out of her system. She got a ton. She's on a ton too, can't wait til some of these are gone! This is just her 9 pm meds. Her schedule is crazy again, but lots of these will be gone soon.
As far as her arm and hand, I am feeling very hopeful because we're seeing her use it more. Today she was able to make a thumbs up with it! Her NP was finally able to give us a possible cause.. she thinks it may be peripheral nerve damage from her arterial line. It's uncommon but can happen. All that matters is that it will come back to full function. Such a scare, but it's all going to turn out ok.
Her heart is being monitored 24/7 with a portable EKG monitor for the next 3 weeks because she was having some rhythm issues. I'll find out how she's doing when we have our first appointment on Tuesday.
It is so good for her to be home. The real healing and recovery happen at home. I am so happy that she can be back with Benson and Ruthie. She just needs to realize her happy little life will go on and I think she's going to be just fine. I love her to death, it's hard to see her struggling, especially since she was doing so stinkin good. But we'll get back to that girl, even if it takes a little while.
Thank you for your help getting through the last couple weeks. We are blessed with the most amazing family and friends. We've felt your love and are so grateful for it. Thank you from the bottom of our hearts.. especially Bela's. :)
Sunday, March 11, 2012
What a difference a day makes.. especially around here.
She got her IV fluid turned off because we are feeding her through her Gtube now and she is keeping it all down. That was the last line that was connected so we were able to get rid of her IV pole and lines and pumps. This just makes it SO much easier for her to be mobile. Huge!
This morning about 10:00 the neuro doctor came in to tell us that her EEG looked perfect. Absolutely no sign of a stroke and no seizures. Yes yes yes yes yes! and a wahoo too! Can I even express the relief? She is still not using her left arm or hand, but he tested her arm for reflexes and hers were great. He believes it is nerve damage and she just has to regain full function through therapy. We've done that before, we can do that again. I know she'll be just fine, digging in the sand in no time.
She got her 'hat' off and all 50 probes that were on her head and we were able to go for another walk. She walked twice as far today. So proud of her. Her little legs got going so fast! She let us know when she was tired and we took another wagon ride.
Then we got more great news... her other chest tube was coming out!! We gave her some different meds and the removal of this one went so much better. It is out. Can I say that again? It is out! I can't believe it!!! 6 days post op... amazing.
We just finished washing her hair and all the goop from the EEG out. I massaged her head and we poured warm water over it and she loved every second of it. So good to do something that felt good for her. She is now sleeping in her daddy's arms.
Like I said... What a difference a day makes.
Saturday, March 10, 2012
My dearest Bela--
I was amazed by you when you were a baby. I've been amazing by you your entire life. But right now I've never been more amazed.
I keep reading these words from the talk The Atonement Covers All Pain,
"I have noted that children are often more naturally accepting of pain and suffering. They quietly endure with humility and meekness. I have felt a beautiful, sweet spirit surrounding these little ones."
An update... It's been hard to find a minute. To catch up from the last post... She had a good night that night after she got her PICC line in and was able to drink. She rested and drank all night...20 ounces of gatorade in one shift! She didn't wake up for the day yesterday until noon. She was sweet and quiet for awhile. She had a few bites of a pancake and some fruit loops...still didn't have a big appetite, but it was nice to see her eat anything at all for the first time. We got the update that we were going to be able to pull her left chest tube! I was SO excited for her.
Before getting her tube pulled.
Adult patients say that is the most painful part of all. She had only been taken off sedation for a few hours and finally perked up a little bit, so I was a little disappointed they had to give her something again to pull the tube that would take her away again. They suggested a med that would give her an amnesia like response and I felt wrong about it but after some debate I went against my feeling and said ok. I honestly think the hardest moments for me are when she is given a drug that affects her brain, those neuro drugs that make her eyes roll back and she dissapears somewhere for awhile. Her eyes were also shaking back and forth, it looked just like she was seizing. Dr.s said it was a normal response to the drug. Well I hate that drug then and NEVER again will she have it. They were able to pull her tube with minimal reaction from her, but that's even creepier to me. I know it's good to not give her anxiety, and I am grateful it wasn't painful for her, but to me it's worse to see her that way.
Anyway, once that was pulled out (all 18 inches of it wrapped up somewhere inside her chest) and she came back to, she immediatley perked up. She felt better from having it out, I could just see the relief in her face. PURE happiness for my heart! She gave us smiles, and oh they were amazing!!
One out, one to go!! Horray!
First smile after the tube came out. Best picture ever.
That was huge to get that out so soon. It means we are in the 25% that don't have bad drainage issues post Fontan. Another miracle and blessing. Her right side drained just a little too much in the last 24 hours to remove it. Maybe tomorrow. It is draining very little today.
She took another rest and then we were able to get her into that wagon and out of her bed.. It was GOING to happen! She needed to get out of bed. She was so sweet. She was so happy to be out of the room. We did one full lap around the unit, which took a while because she had a lot of gear to be careful with and drag along, and when we got back to her room she looked at me and whispered, 'more'. So sweet. I said, we're not done yet, she wants more! So we went for another lap and then she said all done.
First time out of bed.
She was tired. We got her in a clean bed, I read her some stories and laid next to her for a long time. Sweet moments with her. She even had some visitors and was happy and smiling. She fell asleep from 11-2, then was awake from 2-5:30 wanted to watch movies. Then slept some more this morning.
Her milrinone (IV heart med) was turned off this morning. That was the last IV med she was on.
Yesterday I noticed she didn't want to use her arms, especially her left arm. She is using her right arm a little but it is very uncoordinated and seems hard for her to move. She is not using her left arm at all. I notified the dr. last night. This morning during rounds we discussed that it was still not any better. So they ordered a stat CT scan. They were concerned about a possible stroke. It's been a scary morning. We went down immediatley to do it, I was so nervous. This is what we know so far...The neurologist told us that he did not see any sign of a stroke. But she has a little blood on the brain that didn't seem to be causing pressure or swelling, but could possibly be causing seizures. The blood is on the right side of the brain over the area that affects movement of the left arm. I'm grateful to rule out a stroke. If she is indeed having seizures and it is causing this, they will put her on a seizure medication until the blood goes away, but we still have no real answers. Right now she is getting hooked up to do a 24 hour EEG to measure her brain activity and watch for seizures. They want to see her brain activity during all stages of awake, light sleep, and deep sleep.
She is responsive and is able to shake her head yes or no to questions we ask her and laughs and smiles so that is great. She isnt talking a whole lot. This is one of those times that we're taking it a moment at a time. I feel like everything will be alright, I really do. I'm hoping it's just nerve damage or something and she just may need some therapy for awhile to get back to normal. I hope so. I am scared though. I am used to all sorts of heart issues, but not brain issues and it is frightening. She seems frightened too and that is the hardest part. She has scared eyes. There is so much being done to her. There is nothing I can say to her that she will understand. It is so hard. I'm so glad she had a few happy hours last night.
Hopefully we will have more answers in the next 24 hours.
Today's update.. phew. All I can do is pray, pray, pray. Please continue to pray for her. Thank you all SO much for your love and support.
Thursday, March 8, 2012
Finally something good for Bela! Can't tell you how good it felt to be able to tell her YES when she asked for a drink! She's been back from getting her PICC line for about 2 hours and has just been drinking and drinking the last hour. She keeps saying, a little more mommy.. So sweet. She's resting very peacefully now. Sigh.. The day is over. Now we can finally feed her tomorrow and let her be aw...ake. She might even get to take a wagon ride to the playroom if she is up to it. Thank you for your comments and prayers today...I can't tell you what they meant to me. I really can't. It was the toughest day yet, and i hope the toughest day she'll have. I think she is done with vomiting and the tremors and DONE with being NPO (food witheld). I would be miserable too if I hadn't eaten or drank since sunday. All I could think of was how thirsty I feel after one day of fasting and she had gone 5 and was told she couldn't drink for hours. She was so mad she even hit her daddy a couple times. He's the person she loves most in this world.. She was so upset. So hard.. Positive thoughts for sleep tonight so she's ready for a good day tomorrow! I know it will be.. Loves to you all and thank you for being there for us.
Tanner came to the hopsital from work.. it was the first time he had left her, but I called with a not so good update and he came right back. He is such a good daddy and a comfort to her. I just came back from leaving the room for the first time and took a little walk. Wow. I had lots of anxiety about this surgery and knew it was going to be tough but I had no idea. There is no way to prepare yourself to see your child suffer. And the worst part for me is being able to do nothing for her.
To go into a little more detail, now that Tanner is here trying to comfort Bela, she was awake from 3:30 a.m yesterday until about midnight last night. Then she slept very horribly off and on for the next 5 or so hours. Starting at about noon yesterday she started throwing up very forcefully. She got a lot of meds to try to help her but everything seemed to just make it worse. We were told to start a sedation med at 10:30 and I kept waiting for it to kick in. By 1 or so I asked to go up because it wasn't helping. She had periods where it seems like she might have been hallucinating they thought, and then her whole body would shake from pain. And all she wanted was a drink. And I couldn't give it to her. I was told to not give her any liquid because it would've made her throw up, but she was thrwoing up anyway. She would finally doze off then would quickly jerk herself upright all the sudden and scream out. At 5 a.m the nurse came in to check on her and realized the sedation med had never been connected to Bela. She hadn't been receiving it the whole time. I do not blame her.. I actually have no idea how that happened because the tube was clamped so the pump should have been beeping to let us know there was a problem. It never did. It took me a while to be over it, it was a mistake and it's okay, but it caused a lot of unecessary pain for Bela and it's hard to not think about that. When it started to kick in at 5, guess who came knocking.... stinkin xray lady. Who proceded to turn on all the lights, uncover her, lift her up to place the plate underneath her and totally make her upset again. Those are the moments in here where I want to yell at someone. I know they're just doing what they're told, but it is so hard to have been in here all night and watch what she went through and have someone pay that no attention at all. SO finally she slept a little this morning, but it only lasted a couple hours and she has been begging for a drink since about 8. She tries everything...'please, mommy, just a little bit'. I couldn't stand it anymore. I'm so glad Tanner is here now. We are almost to the time to send her to get her PICC line. It's another procedure under anesthesia so it kinda stinks, but she is still on too many meds and needs a more permanent line. We were hoping to have her off these meds but she still needs them. Once she comes back and wakes up we will try giving her small drinks and see if the vomiting will stop. I am so ready for this day to be over. She is the strongest little person I know and one day I hope to be able to tell her how completley amazing she is.
Wednesday, March 7, 2012
I've tried a couple times to grab a minute to do an update but it never happened. Today's been long. And hard. I feel so much strength sometimes that I actually wonder how and where it's coming from. And those moments are tender for me because I KNOW exactly where it's coming from. It's certainly not coming from me. But I have moments where I feel everything. I remember this rollercoaster ride all too well... One hour they are doing fantastic and you feel on top of the world. Then the next you're watching them suffer and it overtakes you. (that was avery typing and I know many want to know how bela is doing so I am finishing the update for her)
Bela had a very rough night which meant being awake for 24 hours and throwing up since about 1 pm yesterday. Of course Avery dealt with all the stressful moments and a very difficult night because as I sit here and type at the moment she is sleeping a little. I have Paul Cardall playing for Bela which she love and his music always has so much more power and meaning here in the hospital. He has been someone we have looked to for experience and hope since he is now an adult and been through difficult road. Bela is scheduled to get a PICC line put in at 1 pm and hopefully she will stay asleep and rest until they come to get her. Thank you all for the kind acts of service, words of encouragement and hope, and certainly the prayers offered in Bela's behalf. One of Avery's friends suggested we read this conference talk a few days ago https://www.lds.org/general-conference/2011/04/the-atonement-covers-all-pain?lang=eng&cid=email-shared. I have listed to the talk 3 times and read it twice and it is amazing. It has helped me feel peace and better understand the power of the atonement. The last part about "angels" is very tender. I am certain that angels have been with Bela and that gives me tremendous amount of comfort.
Tuesday, March 6, 2012
This is Tanner. Avery asked me to give an update. Bela had a good day overall. She woke up a few times and asked for water. She sat up for about 2.5 hours which was great and stayed awake for about 30 min. She was pretty out of it but at least she is not in pain. We have had a dozen updates from the nurses, doctors, and her surgeon all of which saying that "she is doing great." Great day. We could not have asked for better. She is so amazing.
The surgery is the scary part, the post op is the hard part. What a night! The surgeon told us two things are different this time around that make it much harder... 1. she's older so she'll have to wake up sooner and will feel it more and can also tell us how she's feeling. And 2. that she could be here awhile draining fluid. We are seeing the first.. She whimpers with every breathe. Every hour or so she wakes up in intense pain and has to be given more morphine. She's got a high tolerance to pain meds. She's so uncomfortable and it is literally heart breaking. When she opens her eyes they are so pained and scared. One of us is always right there for when she wakes up a little. All I feel like I can do for her is hold her hand.
Hopefully today we are going to come down on all her meds (she is still getting 6 different ones) and then we should be able to get some of her lines out and by the end of the day the goal is to have her sitting up and drinking. It'll be a big day for her.
The good news is she has pink toes for the first time in her life! look at that toe!
Hopefully today we are going to come down on all her meds (she is still getting 6 different ones) and then we should be able to get some of her lines out and by the end of the day the goal is to have her sitting up and drinking. It'll be a big day for her.
The good news is she has pink toes for the first time in her life! look at that toe!
Monday, March 5, 2012
We've been back with Bela for about an hour.. I can't take my eyes off her. She's done and I can't believe it. It's so nice to be through with that part. She is resting pretty peacefully and still pretty sedated, but is beginning to stir. When she does she gets a pained look on her face. This is a very tricky period and one that is always really difficult for us to watch. She needs to wake up enough to be able to come of the breathing machine and so she will feel pain and discomfort and get really upset. Her little arms are already restrained in anticipation of her waking up.
She did have a couple issues during surgery we were just told about. She had some arrhythmia issues and SVT (her heart rate was way too fast) and she needed to be paced back to a normal rhythm a few times. But since she has been back her numbers have all looked good. Praying they stay that way.
I feel so bad this time around wondering what she's thinking and feeling. If she is wondering why she came here perfectly fine and is waking up feeling who knows how bad. I can't imagine what it feels like to have your sternum cut open and pulled apart 4 inches and then sewn back together.
I feel seriously in AWE today of what has been done to give her life. I'm so thankful for it. I feel peace and comfort today so I KNOW that she does too.
Bela was in great spirits this morning. She really could not have been in better shape heading in to this surgery. The best thing we did for her was get her gtube back in. Everyone that sees her says how much more filled out she looks. She looks and acts like a different girl since December. She was talkative and happy from the moment we pulled her out of bed until they took her back. That makes ALL the difference in the world to me. I have been praying for that very specifically...that she wouldn't the least bit anxious or scared. I have tried very to hard to appear like nothing is wrong or bothering me the last few days, especially this morning. We laughed and played like it was just a regular appointment and she didn't skip a beat. They gave her versed and 10 minutes later she was completley loopy and after kisses and hugs they carried her away from us with a carefree smile on her face. It was perfect.
And then I buried my face in Tanners chest and let the tears come.
We've been sitting in a waiting room for the last 3 hours now with lots of other families with kids in various surgeries. We're the only ones still here from the original group of us. Every time the door opens we both perk up hoping it's news about Bela. At 9 they told us she was intubated. At 10:45 they told us that she was now on the heart and lung bypass machine. Longest three hours of my life. And they just started the work on her heart! The nurse left us with, "Settle in, this is going to be a long day." We got a chuckle out of that. You either laugh or cry right? Like we didn't know that already..
2 1/2 hours down... a few more to go.
I hope I'm strong enough to see her like this again.
Keep the prayers for her coming... we appreciate them more than we could EVER say.
Sunday, February 12, 2012
I was just about to go to bed (early for once) but I need to write some things down.. if only for me. I'm not good at documenting life, and I know I'll regret it when this busy stage of life with my babies is over. I'm going to try to be better about getting things down because I have the WORST memory. Really, I do.
There's been times in my life that I would've been glad to press fast forward during, to get through them faster, but RIGHT NOW (and I say that in uppercase because that's how fast things have been changing with Bela) things are SO perfect. I wish I could freeze my kids, just how they are. A 6 year old boy that is old enough to be helpful and have great conversations with, but still little enough to want to cuddle and get read to and want a hug when he's hurt. An almost 4 year old who at the moment has lots of energy, thinks the word 'poopy' is so funny that she uses it every other word, and loves to dance and sing. A 1 year old that seriously makes my heart melt, loves to be held, and is so determined to get walking mastered.
I was at the park saturday with Bela and Ruthie and a girl was there with her one baby about Ruthie's age and asked me how it's been with a second. I told her she was my third and she couldn't believe I had three, then couldn't believe my oldest was 6. (I can't either really). She asked me how old Bela was and I said 4 this month, and of course she said she's so tiny, so I explained that she has a heart defect and she'd had two open heart surgeries. She started to cry and it almost took me off guard. It's become so 'normal' to me. She mentioned they had waited so long to have kids that they still think it's hard just to have to get up on the weekends and not sleep in, she couldn't imagine having health issues on top of it....and I was so young! It made me think a lot that day about the course my life has taken. I was a first time mom at 21. Still growing up myself. Having kids young forces you to grow up in a way and for me it's been a good thing. There's still so much I need to change about myself and having little people around you that look to you for everything makes my desire to be better stronger....necessary. It's been wonderful for me.
I want to remember it all. I want THEM to know how much they mean to me, how much I enjoy being their mommy. How I feel RIGHT now. (In case tomorrow is one of those day I'd rather not remember..:))
6 is so fun. You are amazing-- you love to be the big brother and are so sweet to your sisters. You let Bela know that 'we don't say poopy' many times a day. For whatever reason, you would never dream of saying a 'naughty' word. You have just been sweet and obedient from day one. You want to do what's right and like to make others happy. You are still so shy. Your teacher says you are very quiet in class and your strength is art. You love to draw, and are starting to really like to write. You're reading simple books and it makes you so proud. You still like to be just like daddy and dress like him and do the things he does. You love Star Wars and motorcycles. You asks lots of questions and keep asking them if you aren't satisfied with the answer I give you. I've learned that it's just better to take the time to answer you the right way the first time. You like to play outside, and never want to come in. You don't like to run errands or go to stores... ever. You like to come in and sleep with me after daddy leaves early in the morning. I LOVE it. I think it's been an entire year since you've been sick. You're like the energizer bunny, you never stop moving, thinking, talking, playing. I love watching your mind work, it's like you have too much in there sometimes to get it in words fast enough. I love our talks at night, after the girls are in bed I lay with you in yours and we talk about the day. You start talking and don't stop until I finally say it's time for bed. I think it's also your way of pushing off bed time, and I think you think you're being tricky, but I know exactly what you're doing...:) I just enjoying it to much to let it bother me..Most nights.
It's hard to believe you're almost 4. Look at what you've been through in 4 little years! I still think you've got an old soul in your tiny body. Last time you got your monthly blood draw it was as if you'd grown up 10 years. Instead of crying, you took a deep breath, buried your head in my chest, and stuck out your arm and tried to be so brave. I was amazed by you. I didn't know whether to be happy or extremely sad. Either way, I am so proud of you. You've had a rough few months. For some reason you lost that light in your eyes and that spunky personality for a couple months. That Bela was just gone, replaced by a sad, tired, dead eyes Bela. I HATED it. Every day it went on was torture. I didn't know what happened, we ran tests, did echo's.. everything came back normal, but something was wrong. At your cath a month ago they drew some labs and your thyroid came back out of whack. So we started playing with your dose and cut way back. We also felt very strongly that your tube needed to go back in. Right after you got your tube back in you got an ear infection, so you got more antibiotics. Finally though, you are back. Your thyroid is in balance and your getting great nutrition again and you are back, and I can't tell you how wonderful it is. The last 10 days you have wanted to go outside, eat, play with friends, dance with me... all the things you love to do but didn't feel up to doing. Currently you think saying 'no' and 'poopy' 100 times a day is hilarious. You can already sing the entire new primary song for the year and you've only been to primary 3 times. You get to say the prayer in primary next week and I can't wait. You are a pro at dr. visits, and usually tell them what to do next. You're up a pound and a half since you got your tube back in! You weren't sure about having it in again at first, but now you say 'time for my tubie feed!' when you see me coming with the syringe. Surgery is coming up, and yes, I am scared to death, but YOU are strong, and you have always had angels surround you. I know we can and will get through it, one day at a time. And you will feel better... stronger. It's going to be okay. I love you so much sweet girl..
My baby that is growing up WAY too fast. It's like your first year went by in double speed. I cannot believe you're already one. It kinda breaks my heart actually. I love that you still love to be held and you're so little I do it as much as I possibly can. You still have no hair, maybe the slightest mullet on a good day. But I love your perfectly round yummy bald head. I have loved every single second of being your mommy the past year and a week. Watching your healthy body grow and function perfectly has been such a tremendous blessing I will never again take for granted. I can't tell you how much I have enjoyed nursing you. You still want to nurse once or twice a day and I am SO sad to think about it ending. So many precious moments with you curled up next to me. As I literally poured myself into you I felt so connected to you. You are perfectly content and happy 99% of the time. You are so determined to walk, and in fact, I would say that as of today you are officially walking. The last month you have fallen on your bottom and face a hundred times a day but you always get right back up and try again. You wave bye bye and give wet open mouth kisses. You love the bath and to be outside, especially being pushed in your pink car. You get so excited when you see Benson or Bela in the morning. You love to follow them around. You like to hold little objects that fit in your hands like toothbrushes and chap stick and you will NOT let go of them. You try to do everything with them still in your hands and even though you get frustrated you don't let go of them. Sometimes you even try to eat food off your tray with your mouth if things are in your hands. It's hilarious. Trying to describe to you how sweet you are to me is impossible.. I wish I could just hold you for hours and breathe you in and bury my head in your cheeks and neck. I'm kinda glad you're bald and tiny...it makes me feel like you're still my baby for a little longer..
Feels good to get that down..
Sunday, January 22, 2012
It's been busy around here. Bela's cath went really well. As well as it could've gone probably. I stayed home with Ruthie in the morning and Tanner took her and actually sent her off before I got there. Normally, that would've never been ok with me, but I have to admit that it was actually so nice to not be there for that part. They gave her versed before they took her back which made her totally loopy.. I got some great video of her as happy as she could be. Tanner said she just waved bye to him and that was it! She came out of anesthesia so much more calm than last time too, and woke up much quicker. She was so thirsty she chugged her sippy cup of water, then threw it all up but immediately wanted more. She was not happy when she had to wait. We got to come home that night and we were all so glad to sleep in our beds.
Labs drawn at the cath came back with crazy thyroid results, possibly what was causing her lack of appetite and tiredness. We've been changing up her dosing and trying to get her back in the normal range. I took her to get her blood drawn last week and her TSH was still way too low. I have to take her in again tomorrow and hopefully we'll see some improvements. I think we will...the last two days I feel like I've had my Bela back. She had a fabulous day today, was her usual funny, happy self that I havn't seen in a couple months. I felt so happy today!
We met with Dr. Nigro her amazing heart surgeon on Friday to go over the details for her surgery. While some of it went over my head, I did understand perfectly when he said her oxygen sats should be in the 90's when this is over and possibly close to 100 in the months following! I'm so anxious for her to feel the increased oxygen and feel more energy as a result. Beth also said that regardless of weight issues and thyroid issues, heart wise she is in great shape going into this surgery. Her pressures are low and her function continues to be nice and strong. Music to my ears... hearing that has kinda given me a high all weekend long! I needed to hear some good news! Dr. Nigro is confident he can repair her leaky Tricuspid valve too and that she'll do just fine during the surgery. It's the recovery that can be so hard... BUT, we'll deal with that one day at a time when that time comes.
We also decided to put her G-tube back in to give her some help with her nutrition. She hasn't been eating great, and it'll help her be stronger going into surgery and help her through the recovery as well. She has good days and not so good days with eating, and this way, we can help her out a little on those not so good days. She's trying her best, but some days she just dosn't feel good enough to want to eat much. I was very against this at first, but in the last week I have had so much clarity and reassurance about it and I know that it's the right thing for her.
So the plan is to get her thyroid back in balance, get the G-tube in this week, and get her strong and ready for a March 5th Fontan procedure and tricuspid repair. Piece of cake, right?! I'll be happy when April comes around..:)
Monday, January 9, 2012
I feel a little bit like I did before Bela was born...waiting and anticipating something that scares the heck out of me. I've know that 2012 means Bela's 3rd surgery. It has been nice to have this break, but now it's time (sigh). Bela goes in tomorrow for her pre-fontan cath. It's her 4th cath, but it never gets easier for me. Hopefully it'll be quick and easy and they'll get a really good idea of what they'll need to do during surgery.
I'm not sure what is going on but Bela hasn't been herself the last few weeks and anyone that knows her can see it. We took her in a couple weeks ago and she had an echo that looked normal and drew labs that also all came back normal, but... She is much more tired and lacks the desire to do much of anything besides read or watch movies. If we go on an errand or go outside she lasts a few minutes and then asks to go back home. So we havn't been doing too much lately. I'm not sure if she just keeps getting sick back to back (she is constantly snotty) or maybe she just needs the surgery. I'm hopeful that the Fontan will at least make her feel a little better? I always wish I could take her load for her sometimes, or just for a few moments feel how she feels, so I knew what it was like. I wish I could let her have my whole, perfect heart from time to time so she could go outside and run around and keep up with her friends.
Lately I feel kinda stuck in my own life.. I feel paralyzed sometimes by my worries. I don't really know how to describe it, but when she's struggling, or when I think too much about her surgery I just sorta function at half speed. I need the strength I get from getting on my knees frequently.
So 2012.... here we go. Please be good to my baby girl...