I Got To Hold Her:)

well.... I finally got to hold my baby, and it was bliss for 2 hours. She snuggled into me as much as she could and I loved every minute of it. Although she has been eating wonderfully, she has also been crying a lot, pulling and kicking her cords around. It's hard to keep her comfortable. This is very hard for me when you can only give them so much pain meds. and you can only feed them so much until there is nothing left to do but pray that she calms. I knew that the surgery was going to be the scariest thing to get past, but this is the hardest part. Getting her through the next 24 hours.
Please pray for Tesh's comfort and for our strength to get through this tough time. I am not so much physically weary as I am emotionally drained, which takes a toll physically and I'm starting to feel it.
Thank you so much for helping us hold our staff up.

God Saw Fit To Let Her Stay:)

I bring good news!

As I sat in the waiting room during surgery, there was a point where I started to get a little antsy. I would watch the desk receptionist answer phone calls and go and get parents. It was not near the time where our phone call would come, but I thought, a call to say she was doing well, would be nice. I believe the time was near 10am. I can't explain it, but I even voiced it that I wanted everyone to quiet down a little so I could hear the receptionist call our name when it was time. I was a little teased for the timing, cause we had a ways to go still, and I knew that to be true.
Then minutes later, that receptionist poked her head in and said, "Teshura Wing's parents? They are on the phone for you." I jumped up with anticapation as to what I was about to here. I was glad that they were so kind to call and give an update.
I got on that phone and heard the nurse tell me that they were closing her up and that she did very well, and Dr. M would be out to talk to us in 45 min.
I was completely shocked! With nothing else to say, I hung up the phone, relaying what was said with Josh, and then started bawling. I was so anxious to see her, and I was so relieved that IT WAS OVER! and SHE WAS WELL! I am so thankful to God for letting me keep her, and hearing our prayers. My heart is broken with relief. That's the best way I can put it.
As we came back to our "tribe" of family and friends waiting to hears news, some saw me crying and thought something may be wrong, so I quickly said, "She's fine, and I'm just so happy and relieved" Then gave them the good news.
About 30 min. later, we talked with Dr. M who said her surgery went smooth, and there were no surprises. He explained that her sagittal suture was fully fused, and that where the sutures come together in the front and back were fused as well. He said she took to surgery very well.
We were so relieved.
Since then we've been able to see her, but not hold her yet, which is breaking my heart. She cries on and off with either pain, and/or hunger. She is eating beautifully, but we have to move slow with eating to take every precaution.
Here's some pictures of her in the recovery room, and freshly in the PICU.

 

I Let Her Go

This morning has gone so smooth so far. Your prayers are all working. I woke up, alert and ready to take on the day, and...... I ate breakfast, which was a lot more than I thought I'd be able to do.

We got here at the University of Iowa Hospital at 6am. We waited for 10 min. before they took us back to a pre-op room. As Tesh grew very hungry, she became pretty cranky, wanting to be in her mommy's arms. I held her for a while as the nurses and anesthesiologists came in and out asking their usual questions, giving her the "once overs"

I wiped her body down with these special cloths they provided, put her in her gown, and watched as they marked her head as "the surgical site" The nurse called it, their "autograph". :)

Tesh became very worn and slowly fell asleep in my arms. Something I wasn't expecting.

 She slept in my arms until "they" came in to take her away from me. They told us to give our kisses and hugs and that they were ready to take her back. Sleeping Tesh was gracefully handed over and stayed asleep even in the anesth.'s arms. I don't even know how many times I kissed her. I slowly started to come to a realization of what I just did as I stood in front of the her, watching her sleep so peacefully in another's arms... the tears started coming down. I kissed her until she was out the door. Josh quickly embraced me as I cried even harder when the door shut behind her. He prayed for her, for us, for the doctors, everything.

I'm sitting here right now... little nervous, but overall calm. I found the peace I was looking for. I sought and I found. And it came just at the right time. Thank you my Lord, my King, my Peacemaker. :) Because of His love and your love through Him, I have found the courage and peace to take this day and be the mother I need to be. Thank you.

Green Light!

Thank you for all your prayers for peace. I have peace tonight and hopefully am able to keep that for tomorrow.

Everything went so smooth today as if it were "meant to be"

It's official though, we are to check in at 6am. Surgery is at 7:15, and they are expected to be done around 11:45.

Keep Tesh in your prayers for safety and quick healing. Keep Josh and I in your prayers for peace. Pray for Dr. Menezes, that God may give him wisdom and the steady hand.

Here's some pictures of us waiting at the hotel, having a relaxing time.

Where the Rubber Meets the Road

It's getting a little harder to breathe. I've been crying on and off, with thoughts in my head of my last moments with Sarah. Then I look at my Teshura, watching her, holding her, kissing her, wondering... are these going to be my last moments? I've had to work very hard on finding a peace about all this. I still haven't found it completely yet. I know that God has got all of this in His hands. I know that He loves Tesh. I know that He loves me..... and that Love is going to have to cast out my fear. (1 John 4:16-18)

I feel sick(from nerves) and need prayer for peace still. I'm not 100% we are going to pass "pre-op" due to a diaper rash that she has from all the antibiotics that she's been on and I'm not sure what her blood work will turn out to be like with all the past infections. I'm sad to leave my other babies behind, but I know they'll be in good hands with family.

I'm trying to believe with all my heart that she will be fine, like almost every baby that has had this surgery. The odds of anything serious happening to her are very slim.

My heart is breaking and may continue to until we are on the other side of all this. Where everything can only get better from there on out.... I can't wait to feel that.

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.