Sunday, January 18, 2009

Concerned..

...That is how I'm feeling today. This weekend the cold that Bela has had since our last hopsital stay the day after Thanksgiving has all the sudden gotten a lot worse. She is just plain miserable. She is so junky, her nose is constantly full of yellow snot--so she can't breathe very well and her little lips and hands turn blue. She has a yucky cough, and worst of all, last night she spiked a fever.. Since she's had this cold we've watched for other symptoms like de-sating, fever, difficulty breathing, or vomiting and until today thankfully she's had none of them so we've been able to stay at home and try to get her well. But no matter what we've done she just coudln't kick it. And last night when she felt hot when I went in to get her I felt my heart sink.. So now we just wait and see what direction she goes. It has stayed right between 100-101, and if it goes above 101 we have to go to the hospital. It shouldn't be that big of a deal to go to the hospital, she's spent so much time there, but for some reason today it's literally making me feel sick. I CANNOT describe how horrible it is to watch my already fragile, sick, and miserable baby be put through every test imaginable when all I want to do is let her rest and cuddle her at home. Because she's at higher risk for infections in her blood we have to be cautious and have her examined everytime but it just plain STINKS!! Please say a little prayer for her today...
We think a major reason for all the sinus problems she's had is her tube. In my last post I mentioned taking breaks from it, but we havn't been able to latley because she hasn't been wanting to eat anything. She just feels yucky and so the tube has had to be in contantly. She pulls in out an average of 3 times a day and it is so aweful putting it back in all the time. I think something is really wrong with her nasal cavity or her throat or something because lately when we put it in she screams in pain more than usual. She always cries, but latley is seems to hurt her really bad. Yesterday on the 4th insertion Tanner pulled out a bunch of blood. It is so horrible to know that I am hurting her, and I have no idea to what extent, but I have NO other option to feed her. And when she is sick is when she needs her fluids the most. So it's been a very stressful weekend for all of us. I called Beth our NP and she is going to set up a meeting with the surgeon that would place a G-tube for us. I think it is our only option at this point. SHe is just not close enough to getting the tube out, and I think it is hurting her more than we even know. I really believe that she will not make much progress with her eating until it is out. She has nothing but bad emotions associated with eating because something has forcefully been shoved down her throat her whole life-- why would she want to choose to put something down it? Especially if it is sore? Anyone out there with G-tubes have any advice?

18 comments:

The Simmons Family said...

Poor Bela!! I PRAY that she feels better and you don't have to go to the hospital... the tests are NOT fun!

I've always gone back and forth on the Gtube. If I had to change Owen's more than once every 30 days, there would be NO question. I only do it when it's time to do it and it's aweful. I can't imagine changing it several times a day. Also... if she's getting congestion and BLOOD... YIKES! I'm sure it's just raw in there from going in and out.

You'll make the RIGHT decision for Bela. We think about you guys a lot! We REALLY should get the babies together since we live so close.

Andrea

Lily's Mama! said...

Hey Avery, Im so sorry that Bela isn't getting any better. I saw this post and my heart sunk also. I almost cried towards the end because I can only imagine how you feel. Even though Bela isn't my child, I am so very attached to her and how she does because of her special connection to Lily. We are lifting our voices even louder right now to the heavens asking for this cold to just leave Bela alone. I will put a prayer request out for her right now also. Keep us updated on how she is doing. If she is admitted let me know, I am praying that she isn't though. She is a tough little girl...she will stomp through this like she has everything else....it is just taking her a little bit more time to do though.

No about the g-tube...I have heard mixed reviews about it. Some of my Heart Parent friends swear that it is the greatest thing and then others want nothing to do with it. I do know that friend of mine wishes she would have stuck with the G-tube over the G-button..she told me to tell anyone who is thinking about the g-button to NOT do it....so if the NG isnt working, then I think the G-tube is a good option for Miss Bela... ok I am rambling now...give Bela kisses for us...and tell her Lily and I are praying for a speedy recovery!

Sending you our Hugs and Love
Jenna and Lily

The Silly Nilly Family said...

I'm so sorry for little Bella and all the challenges. I just can't imagine. Sometimes a mother just knows what needs to happen for her baby. I hope she gets better soon. God bless you!

lundgrenville said...

Oh Avery-
Our prayers are with you...I think your heart is a bit fragile with the last couple of weeks filled with stress & heartache...The Lord loves you!
That sweet Bela holds a special place in my heart...I cant stop thinking about that little Angel.
As far as the advice...I would do what your heart tells you. You know whats best for her..the only advice that I can offer is...the less stress & pain, the better!
Lots of love!
Hugs to you Avery..Kiss those toes for me! :)

Jillian said...

my cousin amie has a little girl with a g-tube. She is SO educated in all of that info...her blog is amiestarks.typepad.com leave her a comment or email her. She would be more than happy to help you out!

Amber said...

I am SO sorry she's not feeling well. I get it...along with so many other heart moms...I get it.

As far as the g-tube goes...as a pediatric nurse and a mama of a heart baby that has one, I would love to offer you specific advice if you would want. Feel free to e-mail me bakerfam01@verizon.net

Hang in there...praying for a quick recovery and comfort for all.

Matt and Jennae Porter said...

No g-tube advice here, sorry. This must be so frustrating for you... you probably feel like Bela already has so much crap to deal with, she shouldn't have to deal with normal baby coughs and colds too, huh?? Hopefully tomorrow will be a better day.
I do have a bunch of lotions/creams for you that I got from my work, but I've held off on bringing them by b/c Savannah has had RSV, and until she is totally healthy I don't want to risk bringing any germs into your house. Hopefully I'll get them over to you soon!!

ashley said...

poor little bela, that is rough! she will be in our prayers and i hope that things go well this week. it stinks having a sick kid, and sounds like with her it is even worse.

Sally said...

Oh Little Bela..make that cold go away! Poor thing! Let me know if I can do anything this week. Can Bens come play tomorrow or Tuesday sometime?

Anonymous said...

As a NICU/PICU nurse, I LOVE g buttons- they are so user-friendly and much less traumatic on an already fragile child. That being said, they are not without their own risks- infection at the insertion site, falling/pulled out, etc. But I still prefer them over NGs.

kindra

The Butcher Family said...

Praying for precious Bela to kick this cold thing so you don't have to go back to the hospital....but if that's the case we will pray for God to set your hearts and minds right to handle it once again. You are so strong, Avery and I know you'll know what is best for her.
Annabelle had a g-tube and we loved it. Meds and feeds were very easy...actually she would sleep through some during the night. I think it helped her reflux a little, too. Now, I don't have extensive info about it but I can tell you that it was the right choice for us. I was very, very apprehensive about getting it but relieved once we did. It made our time together very special...I would start a feed, hook her up and cuddle her through the entire thing. I will be praying for you as you make this decision, friend.
Love and heart hugs to you~ Rebecca

Matt and Stacey said...

Oh Avery,
I know we've had this talk about NG's vs. G-tubes before and I have no idea what the right answer is. Last surgery when the ENT dr. came in and said that Addie's vocal chord was paralyzed and swallowing would be difficult at best, I would have sent her down for a G-tube at that moment!

The benefit of the G-tube, in my opinion, is not only would it make eating by mouth more of an enjoyable experience for her, I think it would help take some of the pressure off you guys to make her eat. Tough decision, I know, but I'm sure you will do what's best...

That cold sounds nasty! I pray that she gets over it soon without the help of the PCTICU! We are thinking about you guys. Please call if you need anything....
Stacey

Mel said...

I'm so sorry to hear about Bela. Poor little thing- that breaks my heart. Can Benson come over? Dallin would love to have him come play.

Jan Moran said...

Hi Avery,
It's Jan Moran. I've been following Bela's progress & adding my prayers since her birth. I have a dear friend in my ward whose baby has similar issues. I've spent lots of hours helping out since he was born. He's had a g tube since he was a few days old & it was switched to a g button a few months later.It makes feeding & meds quite easy. He's now 20 months & eats by mouth but still takes all liquids via the tube. I agree with your friend who said it takes away some stress, like wondering if they're getting adequate nutrition and fluids. You just hook up the pump & cuddle.Sorry this is so long. I'm sure my friend would be happy to discuss if you want. You can email me at jan@culbertsonbonding.com.

The Ridgway Family said...

Avery,

I pray that Bel does not have to go back to the hospital, but more than anything, I pray that she will get better no matter what has to be done. I think of you all the time as Bela holds such a special place in my heart.

I am so sorry that this is so stressful for you right now. I can not imagine at all what it is like, but know that I think of you every day.

Love, Keisa

The Mason Family said...

Hi Avery...I have been following your blog for some time now and I am so glad that Bela has done so well!

I am sorry to hear that she still hasn't recovered from her cold. I pray that she gets past it soon.

As for the G-tube, my heart baby Carlie had one placed when she was just a couple of weeks old. Our hospital feels that the child thrives better and it is less stress on the parents. But when it was first brought to my attention that this is their 'protocol' I was very against it. After talking it over with several doctors and nurses, we went ahead and gave consent. Within a week I was very comfortable with it and was so glad that we had the G-tube. Carlie threw up at least once a day, if not more. I did try to give her a bottle and then whatever she didn't finish we would run through her tube. By the time Carlie turned one, we no longer used her G-tube because she was eating and drinking much better.

If you should have any other questions, please feel free to contact me (shannon_mike2000@yahoo.com). I do hope that Bela begins to feel better soon...best wishes.

Shannon Mason

Michele said...

Wow, I felt stressed just reading your post!! I can't believe you are having to put the tube down that often. It is by far the WORST thing I have to do to Gracie and frequently brings me to tears. I think that if the projection is that our little babies will need some sort of tube for another year or so, then the G-tube starts sounding better and better. I read from your latest post that you have decided on a g-tube. You are the only one who knows what's best for her. I look forward to hearing how she's doing with her new tube and seeing LOTS of cute pictures without a tube on her face! Good luck!

Mimi said...

Oh.... baby girl!! i am so sorry. I know this is crazy but every time Mia throws up her tube I say a prayer that she will miraculously take a bottle and we won't have to put it back in. I literally just shoved one back down an hour ago. It's not fun! Our feeding therapist said to keep the G-tube in our back pocket. I wouldn't probably go for it because of what you are experiencing. I have heard from other moms that they like them. I am so sorry!! I am sort of feeling your pain. Feel better sweet Bela!