Dysphagia Improved! :)

I bear good news today... It's such a relief to be able to give positive news on an improvement that Tesh has made.

First of all, the PA at the NS's office gave her a once over, and was pleased to say she sounds and looks great for surgery so far. We'll do blood work and all that the day before surgery. She must also have good levels with that as well.

Her swallow study went great. The Speech Pathologist said that he did NOT see any aspirating during the thicker fluids... YAY!!!! He said there was a little penetration still (meaning that it'll get a little caught in there, but then gets pushed out or coughed out) (if you think about it, whenever we drink and it goes down the "wrong tube"... it's kinda like that) He also explained that normally people swallow in one step, food is put in the mouth and with one act it's swallowed down into the esophagus. With her, she does it in 2 steps. food is put in the mouth, it travels down into her throat, sits for a split second, then is pushed down. He said that that looked pretty typical for a baby that doesn't have the experience of swallowing food. So it's going to just take some practice. He gave instructions for small bits of thin pureed foods, no scooped bits, just dip the spoon in the food. He said do this until she starts getting used to it and that I'd be able to tell when she's ready for bigger bits. After asking how long it might take her to get used to eating normal bits.. he answered, a couple weeks maybe. He sounded very optimistic about her case of dysphagia and said we wouldn't need to repeat the swallow study unless she's having problems again. He expects improvement from here on as we work with her slowly to learn how to eat food and has given the official permission to EAT!

We are going to wait until after surgery to start her on food again, as the PA suggested, to make sure that she doesn't accidentally aspirate something just before surgery, otherwise surgery won't happen. And we don't want to go there.

Every it looking up, and we are very thankful to our Merciful God for these blessings, and we are thankful to all of you for being so faithful in prayer over Teshura. Enjoy the pictures of our day today!

The car ride there!

Waiting to see the PA in the neurosurgeons office. She loves playing with paper.

On our way to the next appt. for the swallow study!

getting ready for the swallow study. She's strapped in and loved to play with them. This is her yummy looking barium... I believe they said raspberry flavored?? yuck! It don't matter what you do with it......

I'm not sure if she was in love with him...... or in love with his hair.... hmmmmm
either way, she's attracted to the speech pathologist. lol....
other pic- the baby disappeared! you can maybe see her little foot?

This is interesting... this is what we saw on screen as the barium goes down. You see the dark where her throat is? (she's facing left) That is where she'd hold it for a second and then let it go. so interesting....
(this one's for you Aunt Emily) *she's studying to be a speech pathologist:)

not very happy that they took her barium away... lol... she was hungry. She ate a whole bottle after this.

Third Times a Charm?

Ok, the nurse from the pulm.'s office called Monday and informed me that a second bacteria showed up, "strep pneumo-" (strep in the lungs) again... not serious... but needs to be treated. So she's on a second antibiotic for another 3 weeks. After that, I thought, surely the NS is going to look at this case and say "Heck NO!" I thought it was hopeless... at this point.. a part of me felt like this surgery was never going to happen.

Yesterday, I talked with my Ped. and she gave me hope that if anesth. will do it, then surely she'll be fine. She explained to me that these bacteria's that they are finding are so common in kids and that everything will be fine. I also called the PA at the NS's office to give her the "whole" case for and against Teshura having her surgery so he has all the facts.. including my last amo of... she's had no fever... and anesth. said they'd do it. 

Today, the PA calls me back to inform me that she had talked with Dr. M (ns) and he said to delay surgery once more to give her more time on antibiotics. The date has officially been changed to July 2nd.

I was actually ok with hearing this cause this means that she will be more protected because of the longer med. intake, if they were to reschedule you couldn't ask for a better date (4 days later), and with all her known facts of having these infections and on antibiotics and her dysphagia cough... they are going to do surgery!! Praise God!

This all still gives us a little over a week to prepare, which is good time to get things done. We'll be at the hospital during 4th of July, but at this rate, I don't care. We'll be home in time for my birthday... and if not (which I highly doubt) I still won't care. I'll be glad to get this over with, and that will be the best birthday gift, to have my daughter over this huge hump of surgery and sickness.

My heart is lighter again... now to the next thing for now... still taking today... keep her health and safety in your prayers.

Not Even Sure What to Pray For...

I know some of you are anxious about knowing what happened at the bronchial scope for Tesh. I'm thankful that I have so many people that care about our family to tune into what's going on, and that pray for us often.

On June 15th, Tesh had a bronchial scope done by Dr. W. (pulmonologist) He was looking for any abnormalities of the inner anatomy, and to take cultures from inside her lungs, searching for infection and/or inflammation. The question here is, "What is causing the crinkling and the coughing, that has so long been affecting her from 2 months old?" (mind you, she has already been diagnosed with dysphagia, that would cause a natural reaction to cough) But the doc. wants to be thorough, so thorough we will be.

Josh's grandparents took Tesh and I to Iowa City that day. I was nervous about the findings. Didn't know what was around the corner. She was to be sedated for this procedure, so that alone made me nervous. The nurses were very nice, getting us prepared. We waited a little while in the recovery room, before they took her to the room they were to do the scope. Ma and Pa left to get something to eat real quick, so that left just me and my little girl. It was kind of nice having that time, with no nurses... just me and her at play.

The nurse came in, it was time to bring her to the "special" room. When I got in there, Dr. W talked with me about why and how they are doing this scope, nothing new in that conversation. They had also talked about giving her a different sedative cause the one they normally use has soy in it..... interesting... They were going to have me stay until she was asleep and then have me exit the room. I'm not sure I was prepared to be in there when she fell asleep cause I was terrified with what I was about to see. (bad memories of Sarah) They had me lay her on "the" bed. She was fussing, of course, by this time she was VERY hungry and probably tired... she wanted mommy. They gave her drugs through the IV they had put in, and after fussing for a bit, as I stroked her cheek with my fingers, she fell asleep. I instantly thought, "oh, she screamed herself sleep" but then realized (duh) she is sedated. It wasn't as scary as I thought it would be, it literally looked like she just fell asleep, no scary limpness about it, just asleep. They said, "ok.. Mommy can give her kisses good-bye, and we'll see you later."
I bent down right away to kiss her good-bye. Already the tears started coming to my eyes.... what if this was the last time I kiss her alive. Thoughts of my last kisses on Sarah ran through my head. The tears started coming. I had warned the nurse there that I was a SIDS parent and that this was hard for me. Like a big girl, I gussied up some strength to get out of the room and leave her with the professionals. As I shut the door behind me, I started crying. I had to meet Ma and Pa in the waiting room, so as I walked passed everyone there, they were all looking at me, some of them wondering what happened, some of them with calm understanding expressions, as if they know the heart ache feeling.... after all, we WERE in a Pediatric Specialty Clinic in Iowa City. Ma and Pa came and sat beside me, hugging me and, yes, forced me to get something to eat. The walk was good, that way I could get out of my panic state and back into reality that she was just having a scope done and that everything would be alright. I only came back with a chai latte... Kailan can't eat like that during things like this.

It wasn't long at all by the time they told us we could come back to her. I got up quickly, so excited and glad that I could be with her and that it was over. In the recovery room lay my little baby girl, still sleeping with rosy cheeks and everything. I was pleased. Everything was looking good. Dr. W. came to tell us that he didn't find any abnormalities in her inner anatomy, which was great news. The cultures were going to take a few days to come back. She did very well with anesthesia, and the nurse wanted us to wait until she's awake and alert enough to eat. I watched her lay there, breathing normally, looking so comfortable.

After awhile, she opened her eyes, (and she always has been one that wakes quickly) saw me, and wanted me to hold her. I knew she had to be starving and the nurse let me at least hold her after taking all her monitors off. She was a little agitated but was glad to be in my arms. There was a point where she was truly getting hungry and the nurse agreed to let us give her diluted apple juice to start her off. While the nurse was getting the juice, Tesh was starting to get VERY hungry and still had the tired drugged feeling. I pulled out my last tool of comfort that I knew..... our song. "Let My Life Song Sing To You" by Casting Crowns. I started in, ... "I once was lost.... but now I'm found.... " as I kept singing she stopped crying, concentrating on my mouth, listening to my voice. Ma saw the moment to take a picture of what was happening. It was a beautiful moment between me, my daughter, and our Merciful Father. What a good idea He had, creating babies to be so tuned in to their mother's voice. :)

After that, she chugged 5 oz. of juice she has never had in her life, and we were off and free to go.

Days later I called seeking results from those cultures. No inflammation found, but there was a bacterial infection found called HiB (and yes, she had her vaccine for this) It is not serious, and in fact very mild, but can range to serious if not treated and it spreads. The nurse said it was hard to tell if she had been harboring this this whole time, or if she simply got it from the scope alone. The Dr. ordered a 3 week course of antibiotics for her infection. I called the neurosurgeon's office, (he was out of town) so I talked with the PA. She said that he may want to reschedule surgery. I cried at that point. But it was not her call so we have to wait for Dr. M to come back. Then I talked with anesthesia to see what they thought about it. They gave me more hope. They said that as long as she's not symptomatic, even though she's on antibiotics, they would do it.

So now the heart wrenching question is... surgery or no surgery right now. If she does not have surgery then we continue the worry of her head's condition and possibly the health issues that are related to it. OR  she has the surgery but MAY be more at risk for infection. Which I am left to guessing what might happen there. And I'm not stupid. Either way there are risks. I cried my eyes out all that night, in anguish. I do not have a favored side. Sometimes I feel like this surgery is never going to happen, I feel like she always going to have these unresolved issues. People have already told me that "It's in God's perfect timing.. that He knows when she'll have surgery... He knows when this will happen." I know all this, and they know I know this. My hang up is that even though I know He is in control, THAT very thing does NOT promise her life on this earth.

I want her to live, I want her live with quality. I want her to stay here with us. That is my prayer. That is my desire for her. I want her to grow up into a beautiful woman, being able to live to tell the tale of all this. I have no promise of these things. This is where my tears are coming from. I know too well that sometimes, it is in His plan to even take babies back and I don't want to do it again. It still hurts and will always hurt that I can't squeeze and kiss on Sarah. And I look at Teshura, and can't imagine my life without her. I am weak...
I have moments of strength where I don't dwell on this, but when you dissect the situation, this is what you'll find. I'm holding my breath, waiting for answers as this next week unfolds. I have NO idea what's going to happen. It's not my decision.

For now... I must only think on today... I have a sick husband that needs me, and 3 living children that need their mommy's attention.

Hold Tesh in prayer for safety with whatever happens. And for my peace with the decision made.

Praises: Tesh finally @ 8 months old rolled onto her left side, enabling her to roll around completely, she's loving it. She got her first tooth in, and she's sitting up now. These milestones are wonderful for Tesh to finally pass through because of her failure to thrive (from before) and her cranio. She is bound to be a little behind, but not far... :)