Quick Update

Sorry for the delay in updates.  I am home now.  Shawn and I switched places so I could have a little break and spend some time with the boys while they are out of school.  I am without a computer and am not fond of typing on my ipad.  I asked Shawn to blog in my place but he says he cant.

So since the last blog not too much as happened; we are at another stand still.  Shortly after I blogged last they had to stop feeds because the food was all backing up and going out the g-tube.  The tube came out of her intestine and into the stomach.  The stomach does not know how to digest yet so the food was not going the right direction.  In other words she started throwing up.

They have tried a few things but to make a really long story short they are waiting two weeks and putting in a GJ tube.  It will go through the stomach and into the small intestine.  To read more about it go here.  http://www.cincinnatichildrens.org/health/g/gastro-jejuno-tube/.  We have to wait 2 weeks so the g tube has time to heal from the last surgery.

She is doing really well though.  Shawn has been working with her on physical therapy and getting a lot of snuggle time in.  I have just been attempting to get some order to my house and playing with the boys.  I planned on painting her room and getting it ready but I may leave that to Shawn.

If anything big happens between now and the time that I get back I will update.  If not I will probably not be updating til I get back to Houston. 

In the outfit that Mimi got me for Christmas!

AWESOME blankets that my nurse Michelle made me :)



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Sleeping Beauty



Beautiful Quilt from my Pre-K kids.  I LOOOVE it!

Some of the wallhangings I bought for Sunni's room

Eating & Pooping

Sunni is looking and feeling a lot better today.  Hallelujah!

She got her first food on Wednesday, December 19, at 74 days old! Wow!  Hard to believe anyone can go that long without food.  She is not eating with her mouth, of course, and it is not even going into her stomach (but it is a start!).  She is getting 8.4cc's continuously every hour.  It is not breast milk though, for now.  It is a lower calorie formula. It is pumped through the yellow tube you see in her picture (below) and bypasses her stomach straight to her intestines.

She pooped today!  A real-ish poop!  Sorry if thats TMI for you but for me it is EXCITING!! Shawn even got a picture of it sent to him today. lol  If we can just get on a regular BM schedule that would be awesome.  That means her body is starting to wake up and work and accept food.  Eventually she will not need that yellow tube and we will be able to feed her stomach.  When that happens we will be feeding her through her g-tube.  That tube was surgically placed in her abdomen that will feed her stomach directly.  I now I have mentioned this several times before but I will say it again....it will be a long road before she takes anything by mouth.  She has a terrible oral aversion because she associates anything being put in her mouth as a negative thing.  Her own fingers gag her.  It is heartbreaking.  If you want to know more about g-tubes this is a good site-- http://kidshealth.org/parent/system/surgery/g_tube.html

Currently Sunni is just recovering from surgery, working on her breathing, eating, and pooping.  That is sounding more and more like a real baby.  Now if we could start removing some of those lines & tubes going  in her.  She will be 11 weeks old tomorrow :)

I took the boys & Shawn to the airport yesterday to send them home.  I was sad that I had to spend doomsday and then Christmas alone.  Well, when I woke up still alive today (haha) I had something telling me that I needed to figure out a way to make it home for Christmas.  I am very, VERY torn on this decision. Sunni is doing good and has great nurses to take care of her.  She is really young and will not remember this time.  But my boys are old enough to remember and I sort of feel like I need to be there on Christmas for them (and me too).  So I am trying to figure everything out.  Prayers for clarity on this difficult choice I have to make would be appreciated.  I wish I could be two places at once, dangit.

Oh, and the bills are finally showing their ugly, expensive, outrageous, INSANE faces.  I saw that her repair surgery alone was $24,000.  I wish I were a surgeon.  Ok, not really.  But that is barely under what I make for an entire year! LOL

Her First Feed

Adorable!

Merry Christmas! 

Perry, at it again!  He made mustaches for her, her mobile, and ALL her animals. :)

Tummy Surgery

Monday, December 17th, Sunni finally had surgery to fix her digesting//gastro issues.  Like I have said before they were planning to do a scope first to find the problem and the ideal scenario would have been to find the issue and be able to fix it without having to make an incision.  As with every other issue so far in Sunni's short life that sounded good in theory but did not happen.

We were told that she would go back to surgery at 10 but they could not find this thing they call a blood band.  It just has stickers on it with numbers (I guess specific to her?--not sure) so they had to do MORE blood work and make her a new band before she could go to surgery.  This mommy was NOT happy.  When my baby girl has to be poked for someone elses screw up I tend to get a little upset.

She ended up going back at 11 and the procedure started at 11:28.  After sedated the ENT was able to look at her vocal cords and found that she has good airways BUT she has a paralyzed vocal cord.  There is a chance that it could resolve the issue on its own but there is also a chance that it might not.  If it does not-when she gets older she can have another procedure done that will help it.  On a side note--the ENT just happened to be from Borger (15 miles from where I live); we only found out because he had to call us and noticed the 806 area code.  AND the nurse told me that he read my blog (*embarrassing*).  How he found it, I do not know. Haha.

After the ENT was done they started the scope part of the procedure.  They ran the camera down and found out that she does not have pyloric stenosis.  I believe at that point they decided to run a tube down her nose, bypass the stomach, and feed it into the intestines.  I can not promise you the rest of this is FACT because we have yet to talk to surgery to verify and our new neonatologist can not answer any of these questions, but I will do my best from what we *thought* we understood when the surgeon briefed us right after surgery.  Evidently placing that tube did not go as planned because at 1:00 they decided they would have to make an incision.  I do not think that tube was going in like it was supposed to so they new there was some sort of obstruction that they would have to open her up to find/fix.

From what we understood, and this might be all wrong, Sunni's liver was towards the top of her abdomen when she was born and when she had her repair surgery.  As time went on it shifted down along with everything else shifting as well.  The falciform ligament is a ligament that attaches the liver to the diaphragm.  Somehow the ligament put a kink in her intestines and nothing was able to pass through.  I am not sure how they corrected this but they did and then got the tube to pass into the intestine, like planned.

The also inserted a g-tube through the outside of her belly into her stomach.  This will allow Sunni to be fed the nutrition she needs directly to her stomach.  She is going to have a big oral aversion which I have talked about in a few blogs.  She does not like anything in her mouth whatsoever---not even her own fingers.  She barely touches her own tongue and starts gagging.  Going into this I was very against getting one of these tubes but it means that we will get to go home sooner and work on oral feedings at home.  Feeding is going to be one of Sunni's biggest obstacles that will probably affect her from now on.

So you are probably wondering why she needed the tube down her nose and the one in her stomach.  They are using the one down her nose to start off with.  It feeds the intestines and the hope is to "wake them up" and get them to working.  So poop is what we need!  She needs to start having bm's.  When that starts happening we will be able to try the stomach tube.  When that starts working will will be able to pull the nose tube out and just use the g-tube.  As far as bottle feeding goes it is probably not going to happen soon but we can always pray and hope for another miracle.  We will be able to work on that at home.

And the H word.  Home.  We are very afraid to ask that question but I have a personal goal of being home early next year---like before the first of February.  This all depends on Sunni and her progress with feeds and assuming that her breathing improves and stays that way.  So join me in prayer to get my little family back together (in the Texas Panhandle) by January 31, 2013!  Pray for poop and progress with feeding.

After surgery Monday she looked and did ok.  She was just really out of it from the sedation, which is totally normal.  The first time I saw her I was sick.  The boys were done setting still and being quite at the hospital so I had to take them back to the RMH. Shawn sent me a picture of her when she came back to her room.  I was just so emotional and sick over it.  I was kind of blindsided by the g-tube.  Shawn signed consent for the surgery and I was not there when they went over details.  I was not expecting the tube.  I knew she would be intubated but I guess I did not really think about it.  All the tubes back in her when she had worked so hard getting them out one by one just gave me a defeated feeling and it felt like we were back to day 1.  I felt so bad for her.  When I finally got to see her in person that night I cried a little but not too much.  I just cant believe how tough she is.  I wish she did not know what pain was.

Tuesday she started swelling up, especially in the face, and was really pale.  The swelling gave me terrible flashbacks of the last time when she got really, really, sick and started having seizures and the stroke.  Tuesday was pretty hard.  The dr was against giving her lasix to help her pee some of that swelling off for some reason.  She was extubated Tuesday night.  She did not do as well as we had anticipated.  She had to have nose cannulas set at a higher oxygen rate than ever before.  She was desatting often.  We thought she might have to be reintubated.  I had to leave just so I wouldnt have a heart attack.  She ended up being ok and Wednesday morning someone finally talked the dr into giving lasix (hallelujah!).  That helped the swelling a lot!  She is still swollen and not looking quite like herself but she has improved a lot today.  She isnt going to let surgery get her down for too long.  Such a fighter!   

My boys have been here since Friday and they have to go back home tomorrow.  I am very sad about that.  I will be alone for Christmas but I am just going to be thankful that I have Sunni to share it with and that we have been blessed.  She is our Christmas miracle.  Thank you God, we owe it to you!

PS--If I find some of this surgery info is inaccurate whenever the surgeons decide to come around when I am  around I will update. :)  And as always, forgive my grammar, run-ons, misspellings, etc.  

Sunni in her awesome onsie from Mrs. Lidia

On her way to the OR

Cooper drew this while Sunni was in surgery.  So sweet.  "God  Help Sunni."

Right out of surgery 12-17-12

Swollen but still adorable :)

Sweet Sunni

He adores his Sister <3

Gagging & Such

Sunni is still on room air! There are times I definitely spazz out and wish she still had some oxygen to help her out--like when she is gagging.

She has major oral aversion.  I do not see her eating by mouth ANYTIME soon.  She will not suck on a pacifier---she cant even touch it to her tongue without having reflux then gagging which sometimes results in throw up.  She does this thing where she gags because her secretions are so thick, her whole face turns red, eyes roll in the back of her head and she tries really hard to hack it up but it gets stuck--and of course she desats.  It freaks me out every time.

An ENT came and looked at her vocal cords yesterday because she still is not making any sounds when she cries. From what he could see her vocal cords did not look damaged to him but she was so swollen and inflamed from her acid and reflux that he could not get a really good look.  So during surgery Monday they are going to see if they can team up and get a better look after she is sedated.

So here is a more detailed version of what is going to happen in surgery on Monday.  The first thing they are going to do is run a camera/scope down her mouth to her belly and see what they see down there.  They are going to all use their heads and see if there is a way to resolve the problem without making any incisions.  That of course would be the optimal scenario.  They may even decide to bypass the tummy and put in a feeding tube that would directly feed her intestines (from what I understand).  In other words they are going to try everything they can to avoid having to cut her open and compromising her abdomen again.  Of course either way she will have to be intubated which totally stinks.  Hopefully she gets to come off the vent again shortly after but you never know!

She has has a few sessions of physical therapy.  Some things she does well and others...not so much.  That is to be expected when a baby has been in one spot for 2 months with very little movement.  The PT is really nice and showed me some things I can do with her.  It is kind of like play time---more fun for me than her. lol

So to sum it up we have been playing, gagging, cuddling, gagging, waiting for daddy to get here (FRIDAY) and gagging and throwing up some more.

Merry Christmas Sunni!  From one of her fav nurses, Rhiannon :)

I had to throw this in there because I got to see the Weenie Wagon for the first time IN PERSON! haha

Sleeping Beauty with her fav hat from Katy Cox :)

p

Physical Therapist (Shelly) singing Jingle Bells

BIG eyes!  I see you!

All ready for Christmas with her bow from another one of her fav nurses, Michelle

Sweet, Sweet Sunni

No News is Good News :)

I just realized that I have not updated in a week.  I am so sorry--especially if you do not follow me on facebook where I have made a few little updates here and there.

Sunni is still doing very well.  The same day that I wrote the last blog she came off the high flow nose cannulas to ROOM AIR!  Nothing!  It was amazing.  I am so proud of her.  I am so amazed by her strength and determination and how far she has come.

She worked herself really hard breathing on her own for 3 days and then she started desatting randomly as low as the 70s.  They want her to be above 90 so she had to go back on oxygen.  She just got the little nose cannulas and that helped her get the rest she needed.

Since then they have weaned her down on the amount of oxygen she gets from the cannulas and I am guessing they will try her off again soon.  I really do not see the harm in letting her hang out on them for a while....but I guess that is why I am a teacher and not a doctor. Haha.

All other issues are the same.  She still does not eat.  We are still waiting on the 17th for surgery.

I am REALLY looking forward to the 14th when Shawn and my boys will be here.  I miss them SO bad.

2 Months Old (Already?)

Perry sure is creative!

First day in a bouncy seat.  So stinkin adorable!

Pretty in Red

Perry made a really neat heart mobile!

Off CPAP!

Sunni is now off the vent, off cpap, and on high flow nose cannulas!  How exciting is that!!!?

Yesterday they put her on the high flow cannulas and she has done great!  Yesterday it was on 2 liters and today they weaned it down to 1.5 liters.  The stronger her lungs get the closer we get to having.....nothing!  Room air!  She is really doing a great job.  She has been happier for much longer periods of time and is off all pain medication.

For the first time today I feel like we really bonded......like you do with a normal baby.   It was awesome.  I just love her sooo stinkin much!

There really is not a whole lot to report.  She still is not feeding, of course, so we are just hanging out til surgery on the 17th.  Not a lot will be happening til then (knock on wood).  We will just be weaning on the oxygen and getting lots of play time in.  Sunni and I are ready for the 14th so we can play with daddy and brothers, too!

Perry, our elf on the shelf has been checking in on Sunni too(with the help of her nurses--they rock)!  She has not been naughty though---he must just be just checkin' in to see if she is doing ok :)


:)

Sweet Angel

Band-Aid Mess  12/3 

Snowflakes  12/2

Flying in via Hot Air Balloon! 12/1

8 Weeks Old

Sunni is 8 weeks old today!  Wow!  I think I say that every time but time flies even when you aren't having fun.

Miss Sunni has been on CPAP for 3 days now and might be OFF CPAP tomorrow.  Today she is on the lowest setting and has been doing great.  Tomorrow they are going to try nose cannulas.  That is just the normal nosed prongs you are used to seeing on patients that need more oxygen support.  I am excited about this!  2 weeks ago I would not have thought this to be possible. God has performed a miracle through Sunni!  We will get to see her little face better and hopefully she will not be as ticked about it as she is with cpap.  She really isn't enjoying her mask much and I can not say that I blame her!

So surgery is set for the 17th.  They know she has some sort of obstruction around the pylorus area.  They will have a better idea once they get in there.  Not having a definite answer or plan is worrisome to me but I have a lot of faith in these surgeons and doctors.  And I know God has His hand on Sunni and she will get through this.  Shawn and the boys are flying down here on the 14th so they will be here for her surgery!  Thank goodness!

I think through all the complications that Sunni has had in this process I sometimes forget to praise God and be thankful for the other things that have "gone right."  So today instead of praying for specific things I would just like to praise Him for the miracle he has given me, for Sunni's lungs to have made a complete turn around, and for her to have a normal functioning heart.  Thank you God for Sunni.  She completes our family and we love her to the moon and back!



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