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.

Seizure & More Surgery

Most of you have probably been keeping up via Facebook.  For those of you that do not have fb here is the latest....

Shawn and I were watching Sunni yesterday and thinking that she looked better and that the swelling might be going down a tad, tad bit.  Then she started having what appeared to be a seizure.  Her eyebrows started going up and down.  Then her eyes started twitching along with her fingers, nose, and lips.  She was blowing huge bubbles and drooling everywhere.  Her heart rate was all over the place.  The nurse called the dr to let her know...after waiting an hour for her to even show up and these episodes happening pretty often, the dr said she didn't think it was seizures but pain.

Shawn and I disagreed with that assumption.  We knew this was not Sunni's way of showing pain.  Besides that she has had a blank look on her face.  She does not look at our faces anymore or follow our voice with her eyes.  It is like Sunni is not "there" anymore.  She does not clench our fingers with her hands.  It is heartbreaking.  We did not feel like we were getting any answers and that they weren't concerned enough by all this.

During night rounds Shawn kind of lost his cool.  And finally they listened.  He kept them there long enough that they got to witness these seizures and they finally agreed they did appear to be just that.  She got a small dose of Ativan and that helped for about an hour and the spasms slowly came back so they decided to start Phenobarbital which is used to control seizures.  She is still blowing bubbles and drooling but the spasms have gone away.

They have ordered an EEG for sometime today which measures and records electrical activity in the brain.  She will have an MRI tomorrow.

If all that was not enough, surgery came by as well and told us that the pleural effusion is loculated which means there are pockets of that fluid all in her chest that can not escape.  The two chest tubes that she has can only empty those two pockets.  And that basically she has developed scar tissue and all of that along with the fluid is compromising her left lung (what little lung she does have---we were told 25%).  SO the big plan is to have a major invasive surgery sometime this week.  They want to cut her open and "clean" out her chest.  They told us this is kind of a last resort but that they feel that this is the only option and what it has come down to.

BUT she can not have that surgery until the seizures are ruled out because the anesthesia she would have to have can not be done with brain issues going on.

The seizures could be caused by 3 things..

1.  Infection---which they have tested for and ruled out
2.  Clotting of a vessel to the brain
3.  Swelling of the brain

This is a lot to take in.  Shawn and I are just hanging in there.  We love this little girl and are definitely not ready to give up.  Please keep fighting baby girl!!

Being Still........

I know you all want an update but I hate writing something so depressing.  I have been waiting the past couple days for something good to happen so that I would have something good to say here.  Things just seem to be getting worse.  It has been the hardest week & day yet. And now it is the weekend, Friday night, the night I dread because it seems like she doesn't get stellar care on the weekends.  It seems like they drug her up to get her by til Monday.  Since the dr's rotated last week we do not feel like we have been getting the care that she needs.  It almost seems like they are so busy they do not have enough time for her.  I will admit, some of that feeling could be because she has took a turn for the worse and I am just super stressed/depressed/scared.  Enough about me though.  Here is what I can tell you about Sunni....

As you already know she started swelling Monday.  Each day she has gotten a little worse with most of the swelling in her head.  She does not look like herself, or even normal for that matter, at all.  Her head is just as big or bigger than her body.  She has gained 2 pounds this week from fluid.  I do not want to post a picture because I do not want anyone to see her like that.  It is hard to look at.  Her hair is falling out by the handfuls because of protein deficiency, they say.

They had to go up several times on her meds and the vent.  We got a call at 7am this morning (first call since she has been born other than the surgery updates) letting us know her blood gasses were terrible, she had a miserable morning, and they had to go up on the vent.  I was so scared!

The GI results came back and most of the stuff they gave her to see where it traveled (seen by xray) had to be pumped from her stomach that night because she kept vomiting and not much of it had gone anywhere.  We found out that a very small amount traveled into the bowels.  All we have heard since then is that her bowels might not be "awake" for one reason or another.  They were talking about bypassing her stomach and going straight into her small intestine (I think) to feed her.  This might require a surgical procedure but we are not sure right now.  I think they are kind of waiting to see if she stabilizes before further discussing that.

Her pleural effusion is a different story.  We get mixed answers all day depending who we talk to.  The only facts we do know is that she is getting very little drainage from either tube (jp or chest).  Whether they are working correctly, we do not know.  Mystery!

She looks aweful.  I have been in tears most of the day.  It is so hard to see your baby like that.  The drs do not really seem to be concerned about anything.  What worried me was when she finally opened her eyes this evening she did not look around like she normally does.  She stared straight up and did not move her eyes to your voice.  She has ALWAYS done that.  It was like she was not really there.  I hope it is the drugs.  I just want my baby to feel better.

Sorry no pics this time.  I promise to post some as soon as the swelling goes down.  Thank you all for loving us and loving Sunni. <3

"The LORD will fight for you; you need only to be still"

1 Month Young!

Wow how this month has flown yet drug by!  Already November 6th!  I am not sure where the time went;  yet, it seems like we have been living in the hospital far longer than 1 month.  Crazy!  We got a few 1 month photos today.  I was sad because her eyes were not open and she still is not wearing clothes but that is ok.  I bought the stickers a long time ago that you put on the babies onsie--not totally sure she would make it a whole month.  I was sad we did not have a onsie to put the sticker on but so thankful we have a baby to prop it beside.  (See pics underneath........)  Gosh, I love her!

I wish I had better news to tell you, but I do not.  Sunni is still not doing too well.  She has been in pain and really uncomfortable the last two days.  They went up on her drips yesterday and again today.  She has also required her as needed doses pretty frequently as well.  Anytime she is moved or messed with she requires more oxygen on the vent, she desats, gets sweaty, turns colors, and of course screams her silent screams.  I hate it.  HATE IT!

She is super swollen and has been ever since she got out of surgery for the chest tube the other day.  There is more fluid going in her than what is coming out.  They played with/adjusted her TPN today so maybe that will help.  They can not give her any Lasix (a diuretic) because it will take out her electrolytes which are already too low.  She is so swollen she does not look like her sweet little self.

Today she had GI testing done.  Basically they put dye stuff down her tummy tube and take a series of Xrays to see where it goes.  That was at 10 this morning and they Xrays are still showing that it has not gone anywhere.  I am not sure what that means yet because we haven't talked to the doc but I have common sense to know that is not what it should be doing.  I will report more on this tomorrow.

My poor swollen baby :(

So Precious

1 Month Today!!

Angel

:)

No clothes, no eyes.  Oh well.  Still sweet!

First time on tummy.  She likes it!

Chest Tube

Sunni had not really improved since Friday except they did up her drips so that she could rest a little more.  The surgeons decided that a chest tube was the best option since the fluid on her lungs was not getting better but showing a significant buildup.  The jp drain was not doing its job anymore.

So she had to have surgery #5 today, poor baby.  She is currently resting and still out of it from the anesthesia.  The chest tube is "doing its job" the nurse says.  I did not think it had drained a significant amount when I saw it (3cc).  I just hope that this works and no other measures have to be taken to get rid of this stubborn fluid that has put any kind of progress on hold for the past 2+ weeks. 

She has been super miserable this weekend and I have absolutely hated every minute of it for her.  I have faith that this week will hold better things for Little Miss Sunni.  :)

Happy 4 Weeks!

I am glad we got to hold her yesterday!  With the new chest tube it might be a while before the next time :/

180

Sunni did a 180 today.  We walked in and the nurse told us she was not having a good day.  She had been in pain/uncomfortable/irritable.  She had to give her PRNs of both morphine and versed pretty often.  They also had to put the repogle back in due to spitting up. Her blood pressure is up again and her color is pale.

We immediately had flash backs of the last time this happened and it was the major buildup of fluid in her chest.  We asked to talk to the (new) doc who had been in the room several times without once saying hi or introducing herself.  We told her this exact thing had happened before and the jp drain stopped working and caused all of this. She said that a chest xray does not really show fluid on the lungs very well but a chest ultrasound would.  And then they ordered an xray anyway and the ultrasound for tomorrow morning.  In the meantime Sunni is VERY uncomfortable.  I have never seen her like this.  This has been the worst day so far, including ECMO.  She looks the worst, feels the worst, and we do not feel like they are giving her the care and attention that she needs.

The room has gone from 5 babies to 8 and the nurses can not really seem to catch up.  I am not very happy right now with our current situation.  I know that some things are out of doctors and nurses hands but I feel like something could be done in this case.  Instead they are doping her up which only gives her about 10 minutes of relief most of the time.

And to make matters worse Shawn found out he will no longer be getting paid next week.  There was a misunderstanding somewhere down the road on that deal.  So he had to decide whether to go back to work next week or take some more time off unpaid.  AND our car got "tapped" and the lady left a note on our car in the parking garage.  Its not that bad, just scuffed up, but sheesh!!

I know this is a different tone for me.....but today has been rough to say the least.  I am tired and feeling defeated.  I feel exhausted from trying to stay strong.  I just want to break down and that be ok.  Its not fun to hold back tears all day long.  My faith is really being tested right now. 

 Can we please get another 180 tomorrow in the opposite direction?

I'm Back!!

I hope everyone had a Happy Halloween!  My boys and I did.  We had a really good time together and I  got to bring the littlest one back to Houston with me.  Sunni did well while I was gone....nothing too major happened.

On Monday one of the docs suggested they give a drug (Octreotide) that would slow down the drainage she has coming from her chest into her jp drain but the surgeon put a stop to that thought.  He said there is no real evidence in all the studies done on it that proves its works and the side effects aren't worth that risk.  He said it is something that we can wait out and it eventually clears up on its own we just have to have patience.  He must not know my master plan of being home by Christmas--lol.  I actually agree with that decision even though it does mean waiting longer--but that would be the best Christmas present EVER!

She had to get another IV (grrr) to give her Albumin through.  Evidently when they gave it to her the other day through her PICC line that was a no-no because it is a blood product and can clot up in the line causing more issues.

She is being weaned off her morphine and versed in increments of 5 every day in rotation.  1 med one day and the other med the next.  I hope this is slow enough to not experience the whole withdrawal thing again!

Tuesday they lowered her vent settings and she really started breathing hard.  Chest X-ray showed that her fluid had built up again in her chest and her jp drain was not draining right.  Again, this fluid is setting us back. Go away! Please!!!?!  But it was a pretty uneventful day, which we have learned to love.

Wednesday the skin team looked at the back of her head where she has a head sore.  We had felt it a few days ago and asked the nurse about it but she kind of blew it off in my opinion.  At the time she was laying on her back so we did not really see it we had just felt it when we were putting her headband on.  Its actually a scab mixed with hair about nickel size.  It looks bad to me.  They say it has probably been there since she was on ECMO and couldn't be turned much.  Hopefully it heals good and soon so she can lay on her back again.

The jp drain was being stubborn again today so at some points it was not draining until they turned her.  So they did not wean on the vent but did on meds.  Wednesday was also the last day for our dr and our neonatologist.  The docs switch every month and the neonatologists every 2 weeks.  I really do not like that! We REALLY liked this dr!  She was there the morning Sunni was born and she has been a blessing through this.  Her name is Joy Tenpenny and she is amazing.  She spends a lot of time with you and tells you everything you want and need to know in terms that you can understand.  We love her!  So we are really sad that she will be gone a whole month.

Thursday is the day I flew in with Ryder.  She had a really good day today and looked AWESOME!  I was so happy to see her so alert from coming off the meds.  I just thought she was alert before.  She got her red sutures taken out that you have probably seen in pictures.  She got a new, smaller tube to suck her tummy stuff out called an og tube because the repogle was draining very little.  AND she had like 5 dirty diapers!  So I guess with all this new stuff today they have decided that she *might* get to eat for the first time today!

I am writing this at 9am on Friday and we have yet to go to the hospital  so I do not know that it will happen for sure but I will update tonight and let you know!  I am very excited about this.  I am also hesitant, too, of course.  I pray that her little tummy and bowels wake up and know what they are doing.  They have had a rough start in life.  From being scrunched in a tiny space, moved around to a bigger space, and not fed for 27 days.  It is scary/exciting.  I hope this is one forward step.  The lactation consultant told me breast milk is "liquid gold" and will get her home faster.  We shall see lady!!  And if not I am going to go track her down :)

The incision minus the red retention sutures

Looks so Good!

Optimus & Bumblebee on Halloween!

Happy Halloween!

Exhausted!

Pretty Eyes :)

Daddy & Sunni

Not too happy about her new IV.  I am sure you can tell what is on her mind -lol

So Sunni is making little baby steps forward.  I am very happy and proud of my fighter!  If that darn fluid in her chest would GO AWAY we would be doing so much better!  So prayers for that would be greatly appreciated!