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 :)



Add caption

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!



If you have not already signed this....please do!  It only takes 2 minutes!  CDH research!

http://www.change.org/petitions/in-support-of-congressional-bill-s-3396-for-congenital-diaphragmatic-hernia-research?utm_campaign=share_button_mobile&utm_medium=facebook&utm_source=share_petition&utm_term=15937783

The Roller Coaster Continues..

Just when you think you can breathe (no pun intended) in NICU something else happens.

Sunni is doing excellent in most areas; most recently BREATHING!  As of yesterday she is on cpap!  This is a huge deal!  HUGE!  One doc suggested that some day she may have to be trached----Sunni proved them wrong.  She is doing so good on cpap that she will probably be on a nose cannula or maybe even nothing by the end of next week! :))  Praise God!

So my last blog left off on Monday with the plan on being extubated the following day.  So I went in Tuesday morning with that HIGH hope.  I was so excited!  I had planned on videoing it and taking lost of pictures. Well... she had just got back from having the upper GI test.  She has had this once before and it ended in the same result.  None of the barium passes through and she ends of gagging and barfing it up ALL day long.  It is horrible to watch.  HORRIBLE!

During rounds they explained that none of the barium passed through her bowel and that she was going to have to have surgery.  They believe that she has pyloric stenosis.  Food from your stomach passes through your pylorus into your small intestine.  In pyloric stenosis the muscle is thickened and will not let that food pass.  Sunni has all those symptoms but they did an ultrasound and the muscle does not look as thick as it typically does with other cases.  At that point they decided surgery was needed to correct this and told me it would be Thursday or Friday.  AND since she was going to have surgery they were not going to extubate her since she would have to be put right back on the vent for surgery.  I was very upset.

I called Shawn and let him know and he immediately made plans to drive down Wednesday so that he could be here for surgery.  They originally told me the surgery by Sunni's standards would be a piece of cake.  So Wedneday Shawn drove down and Sunni had a terrible day.  She is now off on both drips so she is awake and alert and she was very aware of that vent tube.  She gagged and spit of all day Tuesday and Wednesday.  Other than that not much happened.  We waited around for surgery to set a time for surgery and never heard a thing.

Thursday morning Shawn made it up there and she was extubated!  They didnt even call and tell us.  And they had already made rounds and did NOT want to do surgery. They wanted to try a medication first that would supposedly relax the muscle and let food pass.  I think it was called atrophy.  I could be wrong though.  At that point I felt like throwing a fit that would top any fit my 3 year old has ever thrown.  Shawn just drove 600 miles for you to decide medication was an option?  Are you serious?  Why hasnt this been tried before?  She hasn't eaten in 53 days.  And this is just now brought to the table?  I was still made about not getting to be there for the extubation as well. GRRR

So they explained to us how risky this surgery would be.  She has already been through so much they needed to give her time to rest and heal.  If they do the surgery she will more than likely lose her spleen the surgeon said.  All the scar tissue would be a risk.  And the main issue being that if it is truly pyloric stenosis and since her muscle is not thick like they typically see they could damage it all together.  I did not ask exactly what that meant but I have a pretty good idea.  The surgeon was very clear the surgery is not wanted, a last resort, very risky and dangerous.

WELL GUESS WHAT!!  Today they say they HAVE to do surgery because that medicine they wanted to try is in a shortage across the US.  Our luck.  That is all I have for now.  Shawn and I have a very difficult decision to make.  As far as the docs are concerned this is our only option.  I feel like there has to be a way of knowing that she does or does not have pyloric stenosis without cutting her open first.

The longer she is on TPN the more likely her liver will be damaged.  Please pray for our decision making along with the doctors.  Pray that if anything can be done other than surgery that it comes to light.  Pray that if she does have to have this surgery that it is much more successful and easier than they are predicting.

CPAP!  Yay!  aka  Elephant Mask

Sooo Beautiful!  

I love these bracelets!

Very Special Outfit

I have already wrote a blog today to update you but this deserves it's very own post because today Sunni got to wear a very special outfit.

When I first found out that Sunni had CDH I was 21 weeks pregnant.  I started researching everything I could about CDH online.  Some things were scary, some sad, and some very encouraging.  Along the way I found that personal blogs from other CDH families were the best thing to read because they really told it "how it is."

In that search I found Baby Bee, aka Bonnie.  She was born 4 days prior to me finding out about Sunni's condition.  I ready every single blog that her sweet mommy posted and kept up with her every single day.  I cried and smiled many, many times.  I prayed for Bonnie like she was my own.  I was rooting for her every step of the way.  She too was on ECMO and had many trying times.  Most importantly, Bonnie is a CDH survivor and she gave me hope!  (You can find her blog listed on the right side of my page if you want to meet her).

So when my journey started after Sunni was born, Bonnie's mom, Leslie was there for advice and encouragement.  One day I got a very special package in the mail from baby Bonnie.  I immediately recognized it.  It was an outfit that Bonnie wore in NICU and I had remembered seeing her pictured in it.  How awesome!  I was so excited!  Then I read the card enclosed and found out that the outfit had belonged to another CDH survivor before Bonnie named Lilly.  So Sunni is the 3rd CDH baby to wear this outfit and I think it it the coolest thing ever!  It brings tears to my eyes, actually.

So here it is.  Sunni in the very special outfit.  Thank you Lilly and Bonnie!  Sunni will too pass this outfit on when the time comes.  It is SUCH an honor to wear this. :)

Tomorrow is a BIG day!

Sunni is still being a little rock star.  She looks AWESOME!  Today they went down more on the morphine. So she is at 5 on morphine and 10 on versed.  We are slowly getting there!  Hopefully getting off the meds her bowels will wake up.

Tomorrow is a BIG day for Sunni.  They are going to take her off the vent and put her on cpap!  That means she will not have a big tube in her throat anymore!  We will be able to HEAR her for the first time!  I know it will be very hoarse at first and for a while--but I am SO ready to hear her cries and see those lips!  They think she will transition over really easy so I am hoping they are right--but there is always that chance she will not tolerate it.  I have a feeling she will do just fine :)

The doctor said that they will try giving her a tiny bit of breast milk 24 hours after she is extubated.  I am not sure that still stands though because they tried changing her repogle to gravity instead of suction today and she starting spitting up.  Spitting up is also a sign of withdrawal though.  Also they are ordering another upper GI test.  So I will not hold my breath on the feeding thing.

She is having an MRI/MRA/MRV right now as I type.  Hopefully it will be unchanged from the last one with the hematoma possibly going away.  The radiologist is reaaaallllyyy slow at reading MRI's so we may or may not get those results tomorrow.  I do not hold my breath for results anymore.

The doctor let me know that even though she looks amazing and has made a huge improvement to not think the battle is over.  He said that was a big hurdle but the major bump in the road will be feeding.  He said that most parents see what looks like a healthy baby and are ready to go home but feeding is frustrating and a long process.  In other words, we will not be home anytime soon.  I already knew that, thank goodness, from reading other CDH blogs.  Otherwise I would be one of those parents that he was talking about.

Today my super awesome cousin picked me up and treated me to a pedicure and massage.  It was awesome!  So shout out to Kim for being the best and getting me out of the hospital for a few hours and making my toes all pretty.  <3

I can not wait to report back tomorrow and let you all know how it goes!  Pray, pray, pray!

Milestone Day--7 Weeks!

Today Sunni is 7 weeks old!  It is hard to believe we have been in NICU for 49 days.
4 BIG things happened today:

1.  She is now free of all chest tubes!!  Hip, Hip, Hooray!  (Please fluid, STAY AWAY!)
2.  She got to wear clothes for the first time today!  We barely got the outfit on her because it was newborn size and it was way too small.  I did not think she would be 7 weeks old before she got to wear clothes.  Oh well, that gives mommy something to go shop for :)
3.  She got a BIG girl bed!  In NICU you have to "earn" these beds.  That is what our nurse Michelle and I were talking about.  It is just a blue railed bed but I remember telling Shawn that first week that I couldn't wait for Sunni to have a blue bed--(means they are doing better).  She can regulate her own temperature and  is working on getting some of those tubes removed so she got one!
4.  Shawn and the boys went home today.  Shawn has to go back to work tomorrow night.  We are really fortunate that he was able to stay this long.  I got this! :-)

Sunni is still doing well.  She has made LEAPS and BOUNDS of progress in the last 8 days.  Since the minute after surgery last Friday (the 16th) she has steadily gotten better.  Even though there have been a few rough spots with the few docs we didnt care for---this hospital is exceptional.  I love ALL the nurses and the surgeons are excellent.  We have had THE BEST fellow doc there is.  And 3 of the 4 neonatologists we have had are wonderful.  I am very happy we chose to come to Houston.

We have at least 6 primary nurses that take care of Sunni and we love each of them.  They really love Sunni and take great care of her.  We know we can rest easy at night and leave during the day if needed and she will be in great hands.

Sunni is still where she was on drips on my previous blog.  She was getting a little agitated and showing some signs of withdrawal so they have let her "catch up" the last couple of days.  I bet they will start going down again on Monday.  She weighs 8lbs 4oz.  So she has lost about a lb of fluid, which is awesome.

They are trialing her on to the cpap setting twice a day this weekend with a goal to extubate sometime this next week if possible.  This is my ultimate goal.  I have never heard her cry.  Since she has been on the vent for 7 weeks she will probably not have much of a voice--but I cant wait to hear even the hoarse cry.  I also want to see those precious lips.  And most of all I want her to get off that vent and be able to do some breathing on her own.

She is still having bile and she is spitting up too, most likely due to the lowered drips and withdrawal.  She is still not feeding but I think it will be soon!  I am fixing to go on a crazy pumpfest to try and get my milk back---wish me luck!

That is really all.  Not a whole lot of changes since the last blog.  She is looking better and better everyday.  Shawn got to hold her yesterday and I held her twice today!  God is good!

Goodbye OLD bed!

Looks like the monkey is praying--but her nurse put him there for something for her to look at during her tummy time.

In Mommy's Arms :)

Some of Sunni's Fans

Big Girl Bed & Mobile! Yay

First Time in Clothes!!

Napping with Monkey on Thanksgiving

Aunt M'Liss loves me :)

Happy Thanksgiving :-)

Still Looking Up...

As the title of the blog says.....things are still looking up.  Sunni is still making progress.  The dr actually said she was doing awesome this morning.  I do not think we have heard that before.  God has answered our prayers!

I prayed last week for a sign, for a miracle, to keep my Sunni here.  I have to admit though, I lost some hope.  I thought we would have to say goodbye when I was not ready.  I did not want her to be in pain any longer.  But selfishly, I wanted to keep her too.  I wrote to you in the last blog about the chaplain at the hospital that came and prayed for Sunni.  Her name is Glenda.  She talked to Sunni and I swear that was the turning point for Sunni.  Call it what you will--but God was there.  Sunni opened her eyes to tell us not to be afraid;  "I am still here and still fighting--for you and for me."  She assured us this before and after surgery, too.  I am so proud of her.  Sunni has a purpose here on earth.  She has already taught me so many things.  Never give up, don't sweat the small things, and how important family is are just a few things. 

So here is a quick update on my precious sunshine.....

They went down on her drips yesterday and today.  She is on Morphine for pain and Versed for anxiety.  Please pray she does not go through withdrawals like she has in the past and that she stays comfortable.  I am trusting that the doctors know what they are doing and not weaning too fast.  She is also on phenobarbital for seizures.  They have to adjust the levels of this according to how much she needs so they take her blood to test the levels ever so often.  She is also on blood thinners which she will more than likely have to take from now on because she clots so easily.  

They also have to take blood to test her blood gasses to make sure she is within a certain area.  The better the gas the more she gets to go down on the ventilator.  The hope is that she might get to be extubated one day (the sooner the better).  This is one of my biggest worries because she only has about 25% of her left lung.  One of my favorite doctors shared her suspicion with us that Sunni may have to be trached one day due to not being able to come off the vent.  This lady is really smart.  Please help me pray that this is not the case.  Pray that Sunni is able to breathe on her own one day (sooner than later) and will be able to transition to cpap and ultimately to a nose cannula one day.

She is also on lasix which is a diuretic that helps her pee.  This has been working fabulously.  She has lost a LOT of fluid and is shrinking back down to her normal size *slowly*.  I am not sure of her exact weight at the moment but I will ask after they weigh her tonight.  This tells me that her kidneys are still working.

Sunni has never had milk--breast milk nor formula of any kind.  She has a continuous drip of TPN (Total Parenteral Nutrition).  That of course is not like eating.  I am so ready to start feeding her!  She is 45 days old today and has never eaten (or wore clothes or cried).  In order to eat the stomach bile has to slow down and become less.  Tomorrow they are going to see if they can change her repogle to gravity and see how she does.  That means the tube going down to her belly is on suction and tomorrow they will turn the suction off.  If she handles that we will try feeding.  They will stick another tube down her nose and feed her a very small amount of breast milk.  If/when this happens the hope is that she will tolerate it, keep it down, and her bowels will "wake up."  Last week I was very depressed and sad so I stopped pumping.  I really regret that now with the talk of possibly feeding soon.  Hopefully I can get my milk supply back.  (Any tips would be appreciated).

As far as her brain and development---it is still the same atm.  She will have a repeat MRI at some point--probably when she gets a little bit better and gets some tubes taken out here and there.  Hopefully she will stop having seizures when the hematoma absorbs back into the body like they think is will eventually.  If not, she will be on medication for them from now on.  We are ready to take on whatever the future holds for our precious daughter.  I know she will not be a typical child in any area and that is ok.

So that is the highlights for now.  I hope that this is a better explanation of what is going on with her.  I know that last blog was crazy. lol  I went back and read it and couldn't even understand what I wrote at times.  I am still blaming my pregnancy for my loss of memory and difficulty communicating :)

I want to thank you all for the prayers.  I know I say it every time but I love you all and appreciate them from the bottom of my heart.  For specific prayers you can pray for her lungs to continue to improve and be able to go lower and lower on the vent, for her pain to stay under control with the lowering of her drips, and her bile to lessen so that she may get fed soon.  These are my top 3 prayers right now so please join me.

Sunni & Cooper, her biggest big brother :-)

Rainbow after the Storm?

You all have been so patient with me for an update.  This has been the hardest week of our life, no doubt.  I have never felt agony, stress, and heartbreak like we have this week.  My last post ended with her having seizures and a possible surgery.  That was last Sunday.

Monday the doctors rotated and we got a new doctor and she is very proactive.  She had Sunni when she was born and was ready to do something about what was going on.  Sunni looked awful   She was so swollen she was unrecognizable.  The core of her body was red and inflamed, hard as a rock, and really swollen.  She had not been awake or moving period since her seizures started on Saturday.

She started the morning with an MRI and EEG.  At this point the neonatologist thought the repair patch was infected and that she would possibly have to have surgery to replace it and the cleaning of the chest at the same time.  That all changed the next morning when we got the devastating MRI results.

Sunni had had a stroke.  Oxygen had not gotten to her brain and some of her brain tissue had been damaged.  She had clotting in her Venus System (which takes blood back to the rest of your body from the brain). She also had a hematoma (a pool of blood) on her right frontal lobe that has and is causing the seizures. They also found a cyst in the back of her brain.  At the time we did not know what all that meant exactly.  We were so lost.  She was not moving her body either so we were unsure if she was paralyzed.  She was not responding to pain either.  Along with the way she looked and this new news we felt like it might be the end.  They planned surgery for the next morning and planned a meeting for us to "discuss Sunni's future and the future of our family."  The surgery was set for 7:30 and the meeting for 3:30.

Shawn and I were at the hospital by 6:30am on Wednesday prepared to tell Sunni goodbye and send her into surgery.  We went and saw her.  I had the worst feeling in my stomach.  Then surgery came in.  His exact words do not come to mind but something like, "We have postponed surgery until after your meeting with neurology so you will have the knowledge to make a better decision."  I immediately broke down.  I knew what they meant by that.  Evidently the surgeon felt sorry for me and went and got the doctor to help me understand that this did not mean we couldn't go through with the surgery.  They just wanted us to wait so we would understand what Sunni's life might be like.  Well, that sure did not help me.  The nurse put the screens up so Shawn and I could have some private time.  I cant describe that feeling.  We were mad, sad, upset, heartbroken...etc etc.

A chaplain came in and talked to us.  She prayed for Sunni.  Then she started talking to Sunni.  You could immediately see Sunni moving more than she had moved since Saturday (and this was Wednesday).  Then all of a sudden she opened 1 eye!! She was SO swollen that this was no small feat.  We gained a little bit of hope in a split second.  She was looking around but we could not tell if she was really "there" or not.  Either way, we were more hopeful.  We tried keeping her awake but she just was not able for long.  Our awesome nurse let us hold her.  We had not held her since she got the chest tube over a week ago.  She is attached to so many lines and tubes it is really difficult to get it all together carefully.  And she does not do well with movement.  Between holding her and seeing an eye open we felt a tad better.

3:30 came.  We went into yet another conference room.  I really hate these rooms.  A table where everyone sets around a box of Kleenex.  The dr's filed in, some of our nurses, and other members of her team along with the Neurologist.  All of the stuff about her brain I mentioned before was gone over again.  We found out that she was actually born without her left jugular.  Remember her being on ECMO?  The right jugular was cut and seared off after ECMO.  So--this is very rare.  Her right one no longer works due to ECMO (which saved her life initially) and then she was not born with the other.  This had never happened in their hospital before.  Her body had to reroute new ways for blood to get back to the rest of the body from the brain.  They went over every area with us.  I do not want to go into all the details but they made it very clear that Sunni will never be normal and still may not make it even at that.  She will always be behind in areas like moving, talking, learning and may even never be able to do those things.  And that is only due to the brain injury.  Then we have the respiratory issues.  The seizures (meds from now on).  Blood clotting (blood thinners from here on out).  Her kidneys are not currently working well.  And the list goes on.  They were not sugar coating it but not telling us to give up either.  This is just the short version of this meeting.  I think it lasted like 2 hours.  The decision to proceed with the surgery was up to us.

I do not think anyone should have to make a decision like this one.  We cant even decide where to eat most of the time.  We did not want to give up hope on her.  We decided to have them come off the sedation a little so we could see if our baby was still there.  We were going to proceed at any sign.  (Still keeping in mind the eye that was open earlier that morning).  Thursday we saw a tad bit of movement and she was responding more to pain---so that was a good sign.

We left the hospital around 6 and did not even make it to eat before we got a call from our dr saying the surgeons would HAVE to operate the next morning.  They had done a chest ultrasound and found that she had an infected abscess around her left lung that needed to be removed stat.  They would go ahead and clean out the scar tissue and fluid then too.

So Friday morning Shawn got up early to go see her before surgery and Ryder and I stayed home.  As soon as he walked in the room--guess what!?  She opened both eyes!  He was going to run back and get me but I told him no.  He needed to stay with her the whole time she had her eyes open and talk to her.  I didnt want to chance her going back to sleep before we could get back.  We did facetime and we got to see both eyes open--looking around--pretty alert.  We were ecstatic!!  This was the sign we had been waiting for.  When she went in for surgery at 10:00 we had felt 100% more hopeful this time.

She was in there from 10-1:00.  The actual surgery was only about an hour.  The surgeon came to the waiting area and told us that it went way better than expected.  Her lung had grown and looked better than they thought.  They were happy with the surgery and her lung.  They tried to find the leak source of the chylothorax.  They could not.  It could mean that it has already resolved itself but might not have and only time will tell.  They could not tell if the patch was infected or not.  Since she was infected they could not have done that procedure anyway.  It did not appear to be infected so for now they are going to assume that it is not, but again, only time will tell.

We went straight up to see her after the news.  We waited just a few minutes for transport to bring her back to her room.  She finally came back so we could  see her.  She did not look bad at all for just having surgery.  We expected her to actually be worse but she was not.  We did not see her incision because it is bandaged up.  Now she has two chest tubes :(  Ouch!  Guess what happened about 10 minutes after she came back.  She opened BOTH eyes AGAIN!  She was telling us that her battle is not over yet.  She was telling her prayer warriors that God is listening and not to give up on here.  She is letting us all know she is fighting and not giving up.  She is my hero.  It is funny how someone so small can teach you such a big lesson.

Shawn had to leave Friday afternoon to go celebrate Cooper's birthday with him on Saturday and to pick him up and bring him back with him. ((A big THANK YOU to each and every one of you that came to help make his birthday special.  He had a great time!--He deserved it)).

Saturday I was by myself.  (I got a taste of how it will feel being all alone next week).  Fortunately I got to the hospital to hear great news.  First of all she looked way better than she had, her swelling actually went down a bit (not typical for being after a surgery), her chest X-Ray looked AMAZING, good blood gasses, down on vent, and awake!  They started her back on blood thinners and phenobarbital for her seizures.  She has had 2 EEG's and they still show seizure activity.  They had said that her tummy gunk had slowed down so they may try feeding soon--but later she threw up and it aspirated bile into her lungs.  That was the only bad happening of the day.  They started lasix to get her peeing better and to lose some of the swelling.

Today she looked SO good.  Her swelling was definitely improving; but she still does not look like herself.  She is down on her drips and she is tolerating it.  She is moving a tad more (not a lot) and definitely responding to pain.  They are still watching her lungs where she aspirated the bile the day before.  The other not so good thing at the moment is that she has a TERRIBLE bed sore on the back of her head.  Its about nickel size so far where she will never have hair again.  They had to shave the back of her head today to keep it clean and dressed. Ugh!

Sunni is by no means in the clear but she is showing signs of improvement which is very promising.  It has restored our hope and faith.  The out pour of love from our friends and family has helped us to keep on going this week.  We have had hundreds of people praying with us and for us.  It has been amazing.  And as my fb friends know---even people in Singapore!! WOW!

Sunni & Her Fighter Onesie from the Williams :)

Her pretty bow stuck in what is left of her hair with hair gel--from same awesome nurse! 

Our very first picture as a complete family!

My Babies

She actually enjoys tummy time.  And she looks so cute and comfy doing it!

This was BEFORE surgery on Friday 11/16.  Her beautiful eyes we were so thankful to see once more

Sunni's Turkey Bow--Made by same great, talented nurse, Michelle.

Please excuse the grammar, mispellings, and run-ons. I am so tired!  I think I fell asleep few times while typing.  I will most definitely update more often.  This was rough.