Thursday, January 29, 2009

Wednesday, January 21, 2009

Even better today!

We were able to come home after the apt. They were a little unsure of what to do with her, there was talk of admitting her for IV nutrition so we could keep the NG out for a few days and let her nose heal, but we decided against it. Beth inserted her NG and then her nose bled for the next 45 minutes. She could see how bad it was. So she was put on flonase and zyrtec to try and stop the congetion and open up her airways so she can breathe and hopefully heal faster. I gave her one dose last night and the difference was huge. I put her down last night at 5:45 and she is STILL asleep at 9:30! She was so exhausted from not sleeping and she can fnially breathe! When I checked on her this morning she had no snot in her nose! You can still hear it when she breathes but if feels so nice to see her get some relief after 2 months. So we'll continue this for a few days and hopefully she'll fight through this virus she has and get over it quickly. I just got her RSV swab results and they were negative!! :) Her fever is gone this morning finally.. Thank you for your prayers and thoughts!! You never know what these things might turn into, and I sure hope we're past the worst.. It is so stressful when she is sick..the fear of knowing that her life is so fragile and not knowing whats wrong and what we should do when it's 2 a.m. and she is so sick. It's nice to breathe a little eaiser now.

We did get some G-tube news that was a little disappointing for me. She has to be a month out of any illness. So we have to get her over this, which could take who knows how long, then wait a full 4 weeks!! I was hopeful we could just get it down and over with and be done with the NG so she could heal, but it looks like it'll be a little while. We'll get through it though.. And who knows..maybe in this next month and a half or so we'll see another miracle with her eating.. But if not, we at least have a plan set up. It feels good to at least have that. Either way in a few weeks she'll have it out for good!

Monday, January 19, 2009

Better Today

Thank you so much for your sweet, encouaraging comments, and for the suggestions about the G-tube. I think we are going to go ahead and do it, I feel that it is what is best for Bela at this point and the right thing to do. It is going to be very hard for me to hand her over again though, even for a small procedure compared to what she has been through. I am dreading sending her off with the surgoen, but I am really looking forward to life without an NG! Without the daily frusterations and pain that it involves. I can't wait to see all of her face and let her cheeks, nose, and throat heal. I can't wait for the enormous pressure I feel to get her to eat (and get the tube out) to be gone. Once the G-tube is healed it won't bother Bela at all, she won't even know it's there, so we'll be able to just take it at her pace. We'll still work hard at getting her to eat, but go as slowly as she needs it to be able to make eating a positive, enjoyable thing again, something she dosn't have to be afraid of. Now that I have made the decision I'm ready to go ahead with it, and I feel so much relief.
We've managed to stay out of the far. Last night she was still burning up all night. In between motrin doses it got up to 102.5. With motrin it would linger around 100.8. She slept horribly and coudln't get comfortable.. When she woke up from her first nap around 10 she seemed a little better. She was at least perked up a little and could hold her head up. Her color looked much better today too. She still had a temp all day but it stayed around 99.8. I'm hoping for a better night tonight so she can rest. We started her on azythromycin yesterday and I hope that it helps. Her last antiobiotic did nothing, so if this is still viral it won't do anything for her. Her drs want to see her first thing tomorrow so we're going in for some tests and to see what her sats are. I finally turned my pulse oximeter monitor in a couple weeks ago and I don't like not knowing what her saturations are. I'm used to being able to check and it makes me so nervous. They're worried it's RSV... Oh I pray it's not!! It's just plain hard to have a sick baby, and when I know she's so fragile and weak already it's so scary. I wonder if it will always be like this, but I so hope not. I'll post after her apt tomorrow.. hopefully we'll come home.. :)

Sunday, January 18, 2009


...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?

Wednesday, January 14, 2009

Catch up

Here's a TON of pictures of the last month or so.. My mom has been asking me to put up pictures of Christmas since Christmas morning..sorry mom. Here they are..

Some random shots.. in some of these you'll notice the absence of the very annoying NG tube!! She has been able to have "NG vacations" as her cardiologist put it because she is now eating baby food pretty darn good. The vacations only last about 3/4s the day for now, but it is SO nice to not be 100% dependant on that thing. Whenever we take it out her congestion and cough go away and they come right back when it is put back in... :( Someday soon I hope to be rid of it, but she still has a ways to go because she WILL NOT take her liquids!!

This is my bugger on his first day of PRIMARY!! I have a child in primary.. super wierd for me..

We came home on New Years Eve to this:

She didn't want to miss out on ringing in the new year... It is the only night in the last 4 months she has woken up like that. I think she must be the most excited of anyone that this year (shouldn't) hold any surgeries for her!! It's going to be a great year!! It's been so crazy for so long and it is really starting to calm down a lot. She is such a happy and social (if mommy's close) baby girl. She waves hi and blows kisses.. She is an absolute joy and just melts my heart everytime I look at her.
We had a cardiology apt. and a endocrinology apt this last week. Both appointments went great. She is on the charts for her length!! (3rd percentile, but she is ON) SHe is not however on for weight, in facts she's sorta been dropping off a little lately, but she is still following her own curve pretty well and everyone is happy with it. She is 15 lbs 5 ounces. Her heart function looked great, great pulses, great sats, great x-ray. It couln't have been a better cardiogolgy appointment(besides the fact the it took 4 hours). I'm always so nervous before those apts that we might get bad news, getting good news is a HUGE relief.
We are counting our blessings, always realizing the God is in charge of this sometimes difficult and crazy, but beautiful life... It helps to remember that..

Thank you to those of you who have prayed for Jersey girl's family.. They have been incredibly positive and strong thoughout the last week. Although I can't even imagine the difficult emotions they have experienced, I know from speaking to them that there have been many blessings from this. They still need love and prayers...thank you so much!

Til next time.. (hopefully sooner)..

Tuesday, January 6, 2009

Angel Jersey

This is Tanner after several months of not posting. It has been a hard two days for a heart parent. One of my dearest friends from high school lost his 6 week old daughter Jersey yesterday. She was born with a heart defect but had severe lung and kidney issues. We love Chris and Heidi and ask all our friends and blog followers to pray for them this week.