Monday, April 7, 2014

Its been almost a YEAR! WOW!


I think I have been putting this off for long enough.  My last post was nearly a year ago.  My, my, my;  how things have changed--for the better HALLELUJAH!  I skimmed over the last blog just so I would know where I left off and it nearly made me have a heart attack.  Last year (especially April, May, June, and July) was the worst time of my life.  I literally thought I would die.

Last blog was about stents being placed.  Thank God I have forgotten some details.  What I do remember literally makes me sick at my stomach, my heart race, and tears flow.  I was alone most of the time.  In the PICU you can not eat, drink, or shower.  I could shower every once in a while if I signed up for a room in the RMD (at 1pm daily) but I barely had enough energy to make it to the other end of the hall.  I ate once a day and/or if my sweet cousin Kim brought me something.  (If it werent for her I do not know what I would have done).  I cried or slept most of the time.  Sunni was not well enough to hold or play with.  She slept most of the time too.  I could go on and on but really this is about Sunni.

Shortly after the stents were placed they knew they had to remove them.  One had slipped down into her heart and the other into her kidneys.  This meant she had to have open heart surgery.  The doctors were not optimistic.  The heart surgeon had confidence the whole time.......but the team didnt. They told us she was already weak and that she had already lost a lot of blood and was sure to lose a lot more with the surgery.

 They let us bring the boys back the night before to have "dinner" with Sunni.  I felt like they were asking us to have "the last supper."  The next morning before she went back I truly felt like we were saying goodbye.  I prayed harder than I ever had.  I was really mad at God at this time but I knew He was listening.  I told Him that if Sunni was going to die within the next year or keep suffering like she had to PLEASE TAKE HER IN THIS SURGERY.  Take her while she is out.  And do it peacefully.  I was going to be so mad at Him if he did not listen to me.  I was pretty convinced this was it.  It hurt.

Right Before Surgery

What seemed like the longest surgery she had been through we got news that her surgery went good.  All stents were removed successfully and they did not have to do as many things as they originally thought.  I could not believe it.  I was happy and mad at the same time.  When I first saw her it was so hard.  She looked terrible.  Her surgery was a success in their eyes but I was looking at my baby with lines coming out of every appendage.  A chest wired and sewed up.  Scars everywhere.  It hurts to even think about now.
Shortly After

Drips Galore

What made me the most mad about it was she would never had to go through it if those stents werent placed.  They never had every teams "ok" or agreement to place them in the first place.  It was so maddening.  She recovered fairly quickly from this surgery and was moved back to the general floor were we spent the rest of May, June, and July.  It was a battle of trying to get her on the right amount of milk and off of oxygen.  She had another surgery in June to do a fundo and a few other things.

Looking MUCH better!

Next blog will be about how she is now......This one has exhausted me.  Sorry.

PS..Dear Raelyn, thank you for all your sweet comments.  I saw them all.  And I was very selfish not to write anything back.  I have been trying to heal since I got back in July.  I hope you forgive me :)

Saturday, May 18, 2013

Not prepared....

Yesterday (May 17) Sunni had 3 stents placed in her SVC;  a vessel going into the heart.  During the procedure she had to get a blood transfusion due to blood loss which is not that uncommon.  They thought they had gotten them successfully placed as seen by ultrasound of some kind.  After the procedure they were not able to get Sunni off the ventilator.

Supposedly they did not anticipate her having to go back to the PICU afterwards but I believe they had to have known.  They told us before they took her that the procedure was going to take about 4 hours and it did.  They said with her being intubated and sedated that long they did not feel comfortable taking her off.  And then they decided that they were going to have to keep her sedated because they did not want her moving her leg.

The size of the incision on her left leg (that is where they gained access) was too big and if she bent it and moved it around it could cause more bleeding.

Also the night before the procedure her picc line stopped drawing back blood.  Several days before that we noticed that her picc line leg was swollen and turned red when she was upset and the other leg stayed normal.  It also was also hard to get blood at times and not others.  They did an ultrasound to check for clots at that time and were unable to find one.  Right before they took her back for the procedure the picc line had totally come out and was leaking everywhere.  During the procedure yesterday they found a clot in the vessel but were able to place the line back in.  It however can not draw back blood.  Before she ever went I asked probably 6 people to PLEASE not bring her back without a line that draws back.  Go figure!

So the answer to that dilemma was to put an art line in her wrist.  Sunni does not had a good history with art lines....they do not last but a few days. So when that stops pulling back I am not sure what they are going to do.  For the clot at the picc line site they are putting her on a constant heparin drip hoping to get rid of it little by little.

Currently she has a ton of drips going.  I will post a picture to show you.  She is getting SOME formula, TPN, lipids, sedatives, and a paralysis drug to keep her still.  Since she is on a paralytic she has a foley catheter as well.  And that is not even including the 15 other meds she is on.

The only time she was on this many drips was on her first week of life.

She is very, very swollen.  The picture does no justice to actually seeing her.  She is probably at her biggest right now. She is connected to more tubes and wires than I have ever seen her on.  We were told she would be extubated today but her xray did not look good and neither are her numbers or gasses.

So swollen.  Poor Angel

They made it sound like this procedure was going to be a piece of cake for her.  Supposedly they did not even intend on her having to go into the PICU.  We are upset because it seems like she is at her worst and we were definitely not prepared for this.  They are allowing our boys back but only 2 people can be at the bedside at a time.  So we are still not able to be all together.  If we spend time with the boys then Sunni is alone.

I would not be surprised if she is not table to have her surgery next Thursday.  That means even longer in the hospital.  I just thank God that Shawn is here and I am not having to do this alone.  Thank you for your continued prayers....we need them now more than ever.
3rd time in the PICU since April 8

Wednesday, May 15, 2013

Stents & Surgery....&FAMILY

So in the last blog I was not very detailed because SO much has happened in the last month and a half.  I did mention that her head swelled up and she was moved back to the PICU.   Her heart rate was elevated and it effected her breathing rate too.  Long story short she has a clot in her superior vena cava (SVC)--which is the main vessel that takes blood from the head into the right atrium of the heart.  Sounds serious right?

See the large blue vessel at top left?--That is the SVC

They took her to interventional radiology.  They shot a dye into her to get a picture of the anatomy of her veins to see exactly what was going on.  Come to find out she has many clots in her chest and her whole left side was totally occluded.  When that happens your body makes collateral veins to compensate the blood flow.  They tried breaking up some of the clots but were not able to because they were all old clots and had already attached themselves to the walls of the vessels.  When that happens there is nothing they can do.

They also attempted to break up some of the clot in the SVC but once again were not able to. They talked about putting a stent in to help that flow but decided against it.  Since she is a baby and will be growing she will have to have several stents placed as she grows.  Also stents can still clot and even break inside.  Instead they decided that the blood thinner she was starting would keep what flow she did have from getting any worse.

The reason I recapped the whole scenario is because it is happening again.  Her head is swelling and the superior vena cava is having very little to no flow.  I am awaiting cardiology to show up and explain why now they want to do a stent.  I am guessing it is because it has become more of an emergent situation but I just want to hear why they have changed their mind.  A different cardiologist is on service so maybe it is just a difference of opinion.  I will update Sunni's fb page if we decide to go ahead with the stents and then later blog about it after it is done.

On May 23rd, if Sunni is stable, she will be having a pretty major surgery.  Anytime her abdomen is opened it is risky due to all her previous surgeries.  She will have a nissen fundoplication where the top part of the stomach is wrapped and sewn tightly around the esophagus.  This will help tremendously with her throwing up.  It usually makes it impossible to throw up.  The reason she has not had this sooner is because her stomach has never emptied.  She has a stomach emptying test 2 weeks ago and the contrast went through for the first time at a pretty normal rate.  HALLELUJAH! This is BIG news for Sunni.  PTL!

She will also be having something done to her pylorus.  They will not know until they get in there what to do but they want it to be wider so that food could easier pass through.  She does not have pyloric stenosis but the surgeon just wants to give her the best chance possible to be able to eat through the stomach instead of the jejunum someday.  Some of you may have read that she was fed (pedialyte) to her stomach for the very first time a few days ago.  That was very short lived as she started vomiting large volumes.  That was the very first time her stomach had any type of food in it.

She will also be getting another button/tube put in her abdomen.  They want her to have separate G & J tubes.  So instead of having one button/tube she will have two.  I am not really fond of that idea AT ALL but I really trust this surgeon and GI doctor so I will go with it if they think that is what she needs.

So that is what is going on in the roller coaster we call life.  The only GREAT news I have is that my husband and boys will be on their way to Houston TOMORROW!  Shawn is taking a leave of absence from work.  It will not be easy financially but it is what our family needs right now.  As strong as I may be I just can not do this alone anymore.  I need my boys (all 3 of them) and they need me.  I have such a peaceful feeling right now even through all the drama here at the hospital knowing we will be a family for 30 days.  My heart is happy right now.

I can never say thank you enough to the people that have supported us since day one, who have prayed for Sunni, and kept up with us.  It means the world to my husband and I.  
I do not like this pic--but this is what she looks like when her head swells which is worse on the right side of her face than anything.

I love her Sunny disposition!

This is my favorite picture of her to date.  Yellow is her color.

Sunday, May 12, 2013

It's been a While....

It seems like I am always apologizing for the lack of updates....but this time I feel like I have a good excuse.  Since coming home from the hospital (and going straight back) life could be described in one word; hectic.  I will just start from the beginning and give you a brief(ish) Cliff Notes version of our lives since the last post.

We brought our little bundle of Sunni home on March 7, a day after she turned 5 months old!  I knew home life would not be easy but I had no idea it would be that hard either.  When we first arrived home my youngest son had strep throat so we had to keep Sunni upstairs with her older brother and daddy and I took care of him.  Shawn happened to be on his 7 off (PTL) so we took turns sleeping watching Sunni sleep.  Shawn bought a cot and we "sleep" right beside her in her room.  

She was on 6-8 meds at a time which are given around the clock.  She is also on continuous feeds so you have to keep that milk bag filled up every 4 hours.  So as you can imagine it was not conducive for sleep.  We were on the nicu's med schedule when we first came home which was a nightmare because none of the meds were given together which kept us up a lot at night.  We finally had a home health company come and help us 5 days a week for 8 hours a day.  They helped up group her meds to where we only had to get up at 10, 2, and 6 for meds.  And we TRIED to get the milk on that schedule too but it did not always play out that way.  I think Shawn and & I were both missing the nicu very badly.  I never thought we would!

 Once we got home Sunni started throwing up more and more and more to where it was about 30 times a day and it was burning her cheeks and her mouth would bleed.  That precious girl would still smile between the throwing up.  We spent 2-3 days a week at the doctors offices, hospital, and specialists the month we were home.  We also made a trip to Houston around Easter to try and figure out the throwing up.

It was a very hard month at home but at the same time it was good.  I got to enjoy all three of my kiddos and watch them interact.  I got to say hi to my husband outside of the hospital setting.  We were all under the same roof. 

On April 6 my super wonderful friends threw Sunni & I the best baby shower EVER.  She made a haul with tons of cute clothes, diapers, toys, and accessories.  A lot of preparation went into the shower and a lot of love.  It meant the WORLD to me.  

Sunni was throwing up all day every day at this point.  She was very miserable and not really herself.  She was not happy like she had been and I noticed that her head was getting bigger and bigger.  It donned on me after the shower that Sunni probably had hydrocephalus.  We decided that the next day we were going to have to do something.  Shawn was going to drive Sunni all the way to Houston by himself. Thankfully one of my friends asked if we had heard of Care Flite, which is kind of like ambulance air.  We called them and they came to pick Shawn & Sunni up and flew them to Houston.  Thank goodness for that!  That would have been a really miserable car ride.

So Sunni was admitted to the hospital (same one she left the month before) on April 7.  They immediately found the hydrocephalus in a CT scan and then she had a fast MRI to confirm.  We had hoped that that was why she was throwing up so much because that is one symptom.  

On April 9 she had brain surgery.  They did a "Third Ventriculostomy."  Read that if you want to know more about it.  It is an alternative to having a shunt placed.  They decided a shunt would not be ideal for Sunni since they typically drain to the chest area or abdomen and those are both trouble spots for her.

After surgery she came back NOT herself at ALL.  She was screaming frantically and scared.  She did not want to be touched or even talked to.  She was having a hard time breathing and started getting fevers.  Shawn & I tried really hard to comfort her but she was not having it and was in a lot of pain.  We were very worried.  When she was not throwing a fit (which she has never done to this extent at ALL) we would try to get her to smile and she would not even grin.  We kept telling the doctors this is not how she is and is not the same baby we sent in to that OR.  

If you have been following me on fb you know that we have been having a LOT of problems with this hospital and after done here we will never return.  NEVER.  Just so you know the NICU here is fabulous and the picu has MUCH to be desired. 

This month has been by far the WORST of the last 7.  It has been far harder than her ecmo days.

The neuro surgeons would not acknowledge our concerns and said everything was normal.  She started getting the fevers so her general team wanted to do a spinal tap and put in a picc line at the same time.  The neuro surgeons said not to do the spinal tap because the findings would look funny since she just had surgery on her brain (everyone's does afterwards).  They did it anyway.  So yes, they thought for 3 days she had meningitis and it turned out negative.  During the wait it was like a battle between the team and the surgeons and whoever won would get to celebrate.  Then her head started swelling due to a clot in the vessel that takes blood from the head to the right atrium of the heart.  This was caused by her being more susceptible to clotting and because if the picc line they put in her arm the day before.  The maddening part about that was that I did all I could short of begging to not get the picc line in her arm AND I told them she had clotting trouble in the past and the doctors would not listen to me.  Argued even.

She was moved back to the PICU after her head started swelling.  At this time they did not realize the clot was due to the picc line in the arm.  When the finally figured it out the doctor told us they needed to move the picc line from the arm to the groin.  Since she was going to have to be intubated and sedated for that they were going to coordinate it with an mri.  By coordinate we "thought" they meant as in coordinate with time so that she would be intubated for the littlest time possible.  Instead she was intubated at 9 in the morning, the picc line was done right then and she was not taken back for mri until 10 o clock that night!  I was FURIOUS!!

When she finally got back from MRI they could not get her off the ventilator because her gasses were bad. She was not extubated til the next morning.  I made sure they knew my frustrations how angry I was.  I am actually still fuming about this (3 weeks later) and they have not heard the last of it.  She still has not been able to get off oxygen.  Their excuse was that emergencies came up.  There is more to the story but it is not important.  That night I told them I wanted to talk to the highest up person they had at the hospital.  They told me someone was coming but they never showed up.  I tried calling a patient advocate but they had incorrect information written on their bulletin board.  So the next morning I was sure to be up and ready at 8 am.  

We ended up having a meeting with the nurse manager, a case worker, patient relations and a few others.  We had been very unhappy with the whole hospital stay and we just layed it all out on the table with the major complaint being what happened the day before.  We were assured we would see change and then the doctors came in.  One was the attending that Shawn yelled at about an hour prior.  I thought they were there to address the issues we had been having with them instead we were hit with devastating news.  Sunni had another stroke and it had done some more damage to the brain.  There was also some bleeding in the brain.  I was upset and mad.  I will never know if all of this could have prevented but I decided not to live wondering so I am just moving on.

After all of this they wanted to start blood thinners to try and help the clot.  That came with the risk of possibly making the brain bleed worse but they believed that the blood could be residual from her surgery.  They started heparin and kept an eye on it through ultrasound.  After a few days they decided it was not helping enough so they wanted to send her to interventional radiology to get the anatomy of all her veins and to possibly remove the clot.  When they got in they found that the main veins in her left side were totally occluded and had already made collateral veins.   There was nothing they could do about the many clots because they were old (formed over a long period of time) and were now a part of her veins.  

That news was pretty hard to take as I was by myself and not really sure what it all meant.  They stopped heparin and started Lovenox which is a daily injection of blood thinner that she will be on long term.  They started lasix, a diuretic, 3 times a day and that took the swelling right off.  In fact she was very dehydrated.  She had lost 3 pounds!  They did not even weigh her until I asked.  She looked terrible.  She was able to get off oxygen for a few days at this time due to being so dry.  We were told on a Thursday we were getting out of the picu.  In case you are wondering why is sucks so bad in there it is because the nurses are not friendly or helpful, the doctors do not listen to parents AT ALL, you can not eat or drink, you can not shower, it is loud, and just a high stress environment.  There is no sleep in the picu.  This was very hard on me.  Definitely the worst time of my life.

So Thursday came and went....then Friday, Saturday, and Sunday, and Monday.  Monday night I had had it.  I decided to find out why Sunni was still in the picu.  She was not on oxygen and did not require "intensive care." Also--Sunni's GI issues were ready to be tackled now that everything else had kind of went away.  GI had not came to see her in 5 days.  I was really upset.  It seemed to me like we were shoved to the side.  I asked to talk to the charge nurse and a doctor....I was not my sweet self, that is for sure.  An hour later we had a room; and an hour after that GI came by.  Squeaky wheel gets the grease, I guess.  And then the next morning Sunni's pediatrician accused me of having hospital psychosis and told me he was going to send someone in to see me.  (No one ever showed up).

So since all that drama GI has exhausted every possible medicine trying to figure out something to help her throwing up.  Nothing has worked.  So next week we are looking at surgery.  I think we will get more of a solid plan tomorrow so as soon as I do I will post again. (Maybe, lol).  I talked Shawn into letting me bring the laptop because I was informed people needed a blog update.  Sorry Yall!  If you do not follow Sunni's Story on fb please do.  It is a lot quicker to update on.  When I start writing things with my iphone it is really hard to read.....I am sure you are all nodding your heads in agreement.

I got to go home last week and spend the week with my boys while my husband stayed with Sunni.  It was MUCH MUCH needed one my end and theirs.  I feel a lot better now.  Hopefully this surgery will get us home.....soon!

Sorry for the lack of update and for not giving up on us.  We appreciate your support, as always.

Thursday, February 28, 2013

The "H" Word

Hey strangers!  I feel like it has been forever since I have updated.  Sometimes updating this blog feels like a chore.  I have been keeping everyone somewhat updated on Sunni's Facebook page so hopefully you all aren't too upset with me :)

Sunni is doing really good!  Since the last blog she has been making all progress.  She got to full feeds and got to be taken off of TPN and lipids. *Hooray!!*  She is still having a lot of output from her g-tube but is throwing up less.

She had her surgery this past Monday, February 25th.  She went from a G-tube to a GJ-tube.  I have explained this before but it is basically a tube that goes through her stomach and bypasses it to deliver food (formula) straight to the small intestine.   Hopefully one day her stomach will decide to start working and she will be able to at least get food into her stomach but only time will tell.  Sometimes when kids get bigger and more active motility increases and that is possible but Sunni has a pretty extreme case.  The surgery took 2.5 hours when typically it only takes 15 minutes for a person/baby with a normal anatomy.  So if/when the tube gets pulled out by accident or something happens to it we are going to be in BIG trouble!  I have already been having nightmares over this, literally.

So before surgery we knew that going home is going to be coming up pretty quickly.  They had told us that after surgery she needs to get back on full feeds and needs to come down to 1 liter of oxygen before she can go home.  She was on 2 liters at the time and we were not real sure how easy it would be to get her to 1.  So the day after surgery they took her down to 1 and she rocked it!  The next day they went down to .5 and  again, she did well!  So TODAY they decided to see if she needed her cannulas at all so they turned it off.  So far she has been doing great!  I have very mixed emotions about this.  I am SO happy and thankful that she is breathing room air BUT I do not like the thought of going home without oxygen at least for emergencies.  Sunni is unpredictable.  You just never know.  Going home is scary anyway but going home without all the gadgets and monitors that she has had since day 1 is terrifying.

Since she has met her goals the plan is to go home next week if everything continues to move in the right direction.  We do not have a day yet.  Shawn and I are so ready--and the boys too!  I have said it a million times; even though we are ready and excited we are also scared and concerned.  Sunni will not be a normal baby.  We are going to have to be very cautious with her.  She will be very susceptible to sickness.  She will always have respiratory issues.  The everyday cold will hospitalize her.  The thought scares me to death!  With that being said we are going to have set rules for our home to protect Sunni especially during cold and flu season.  I know my friends and family will understand because they do not want us to be put right back in the hospital after this 5 month stay.  I have really dreaded typing this since day 1 but it must be done.

*All visitors must have a flu shot and have had a dtap within 10 years.  Absolutely NO sniffles even if you think it is allergies.  No kids under 14 until after flu season.  After flu season any kids that come over have to be current on their immunizations.  Smokers have to wear a gown.  Everyone must wash their hands and arms 100 times then sanitize.  Okay, maybe only 2ce.*

I am not wanting to offend anyone but just protect my little girl that we have fought for.  I wish things did not have to be this way.  I did not know how fortunate I was having two healthy boys.  Our lives have been changed forever.  BUT she is worth it.

Sunni is a fighter.  Her fight will never be over unfortunately.  But we are ready to move on to the next chapter.  I want to thank each and every one of you who have been on this roller coaster with us since day 1.  We would never have made it this far without your love and support.  So many of you have prayed for Sunni and  my family and we could never thank you enough.  You diligently kept up with our story;  cried with us, prayed with us, smiled with us, and rejoiced with us.  Thank you from the bottom of my heart for that.  You are the reason I was able to stay "strong" through this.  We love you and Sunni loves you.

By the way---For some of you that have no idea what the H word is--its home :)  lol, kidding.  They say not to let the baby know the plan or else they might act up so that plan gets ruined.  I am not that superstitious but I am not taking the chance either!

Happy Valentines Day 2013

Loving on her Monkey

No Cannula! And BOTH shoes on! :) 
GJ tube

So cute--Getting an EEG

Momma's Girl

Headed down to surgery in her Wagon

Sweet, Sweet Sunni <3

Wednesday, February 6, 2013

Praise Report-4 Months!

Yes!  A praise report!  I have been waiting a LONG time to be able to write a true praise report.  Sunni has had a good WEEK!  Not just day---but week!  It is the first time in her life that she has had a good week.

She is still throwing up several times a day but that beats the 10+ that she was before!  She seems to be a lot happier and is throwing smiles out like crazy!  Hallelujah!

My parents came to Houston to visit Friday (Feb 1).  It was a great time for them to come because she was in a great mood, smiley, and having some of the best days of her life.  They enjoyed seeing her and I certainly enjoyed them.  I actually came home with them and now Shawn is on his way to Houston so he can visit with  Sunni and I can have boy time.

SO--As I wrote in the last blog we are just waiting on GJ tube surgery which could be in the time frame of February 11-March 17.  The reason a date it not set yet is because they are waiting on her Gtube to heal.  I will update as soon as I hear when the surgery might be.  I am SO ready for her to come home but so very scared and do not want to rush things.

The only real significant thing that is happening right now is feeds.  The doc wants to get her off TPN and lipids ASAP.  TPN has given Sunni the nutrition that she needs and has not been able to get with formula/breastmilk since she was born.  TPN also has negative effects on the body.  It can cause liver damage and other things that I started reading about and stopped because I did not want to freak myself out.    So right now she is on 14 ml's/hr and she needs to be on 24/hr before they can turn off the TPN.  They have been going up by one in the morning and another one at night (so 2 a day).  If all goes well and she is still tolerating going up she should be able to get to 24 by Monday.  I am so excited about this!  I can not wait to get rid of that yellow bag!

Today she is 4 months old!  Wow!  Where has the time gone?

She discovered her tongue!

Big smile!

Smilin' for her Nurses.

Chillin' in her Boppy

Attempting to make Handprints...

Hand Print or T-Rex?  LOL
We decided to go with feet instead.  Our awesome nurse Michelle made her this shirt--ruffles and all.  Michelle rocks!

Momma's Girl

They can NOT wait for their Sister to come home! :)

Tuesday, January 29, 2013

The Plan

We finally have a -plan-.  I kind of feel like we have has a planless plan for a while now.  I know that does not make sense but you get the point, right?

Sunni has been doing pretty good for the most part.  She has been throwing up a LOT though.  Saturday was a record high of 10-12 times just on the day shift.  It was miserable for her and heartbreaking to watch for me.  I hate it!  The amount of times she throws up all depends on if her g-tube is draining properly which is does some days and does not other days.  I keep Shawn updated and it was/is aggravating for both of us to feel like there is something they can do about it to make it start working again so that she will not throw up as much.  You can plainly see that is hurts her.  It is bile.  We all know how bad bile burns.  It even burns her skin where it gets on her cheeks.

Well---they say there is nothing they can do to fix the gtube since it has not been long enough since it was placed.  They did do another GI test on Friday to see if they could see what the problem was or if there was one at all but it showed it to be fine.  They put in 60cc's of contrast through the gtube and into her stomach and were able to pull 40cc's back out.  The rest *supposedly* went through.  If you have follwed Sunni's Story closely you know that nothing has gone through and past her stomach before.  I was shocked to hear this.  The contrast was in her intestines the next morning seen by xray.  I dont know think all 20cc's went through because she did throw up that afternoon.  This finding excited me!  I have hope that she will not *always* have to be fed into her intestines.

One of our night nurses somehow got the gtube bag to start working Sunday night so her throwing up has lessened HALLELUJAH!  Today she only threw up like 3 times.  She had a really good day--it made me happy.  When Sunni is happy, mommy can be happy.

Monday we got one of our favorite dr's back on service.  He will be on for two weeks so I think it will be a good two weeks.  He is really agressive and proactive.  I really trust him.  He is very straight forward and I like that.  He is not the kind to just set back and ride things out--he likes to see change.  So today he met with surgery and GI and they devised a plan. Finally.

Getting a GJ tube is the next step.  She can not get a GJ tube until 8 weeks after her last at the very earliest and her Gtube spot has to be totally healed.  It has to be a hole that is part of the body.  They will start looking and checking on this in 2 weeks (which will be the 8 weeks after last surgery).  The surgeon would actually prefer it to be 3 months (yes, MONTHS) after her last surgery which was December 17th.  So I am just going to assume that she will not be getting a GJ tube until around March 17.  I do not want to set myself up for disappointment.

So assuming March 17th is the surgery date and  assuming it will take a few weeks to heal and make sure that she is doing ok (eating, gaining weight, pooping etc)....I am just going to guesstimate we will be here til April.  I know this is what needs to be done but it is really heartbreaking to think about being away from home that much longer.

I can not believe Sunni will be 6 months (or more) when she finally gets to come home.  I remember reading a CDH blog about a little boy named Jude when I was pregnant and I was so sad for he and his family for being 6.5 months before getting to go home.  I guess I never considered that Sunni's Story might be written that way as well.  I still talk to Jude's mom from time to time on fb.  These CDH mom's are so strong.  As I read their blogs and hear how strong they sound I wonder if they are secretly feeling as defeated as I do some days.  No one understands until they have been there and done it.  No one understands what these babies endure and will endure for the rest of their lives.  Even when we get home life will never be the same.  I tried not to turn this blog into a pity party but just pray for me.  I am really struggling with this.  I just really miss my boys, husband, and family.

And to leave you on a sweet note..........

Peek-A-Boo Momma!

She has the CUTEST yawn.  It is a sweet sound.

Her legs are getting really bruised from her daily shot of  Lovenox.  Poor baby.

Really, Mom?  Hehehe

Daddy asked if I was happy---So Mommy sent this pic and  asked him what he thought.

Best lil Sister

A Gift from God