More SLEEP STUDY PICTURES 7/29/2010

Sisterly LOVE ((Hailey's First Day of School 7/20/10))

Brianna is starting to miss Hailey now that H-H started school! You can see in the picture of Brianna and Hailey (Hailey's first day of school) that Brianna was super thrilled to have Hailey back and Hailey was just tired, sleepy, and cranky... getting up early the first day wasnt easy, but she is getting better at it. I have to brag, that Hailey is doing good at school, she is loving it... her teacher says she is one of her best students! YAY here are some pictures of my baby girls.


Oh I must add... Hailey was very sick for her first week of school, diarrhea vomitting and severe stomach ache to the point where I thought it may be her apendix!I took her to the E.R turned out she had e-coli in her intestinal tract as well as her urinary tract!!! OUCH very strong infection !!! She was put on a 10 day antibiotics which we finished yesterday yay and she is doing much much better! Oh yeah its a never ending story Brie had canker sores for a week and those were very painful to her to the point were she had two of her ALTE spells/episodes on tuesday 7/27 and 7/28 they were very scary! They lasted long and she completely fainted! On 7/28 I was home alone with my girls so that scared the crap out of me. The sores are clearing now and she is doing much better!

Sleep Study CPAP Titron 7/29/2010 ((forgot a pic))

I had to show what I meant by "big blue cement balls with CHOCO bear" :P I have a few of her hugging the ball and sitting on CHOCO bear in the lobby I will find them and post :)

Sleep Study CPAP Titron 7/29/2010

We had a third sleep study for Brianna on 7/29/10. I dreaded this day for months, I have to admit I rescheduled, I cancelled, I didnt show until finally it came down to WE HAVE to do it... we cant put a pause in Brianna's plan of care. So we went through with it. Remembering the last study in December 2009, I felt sick to my stomach with the last one Brianna had several of her ALTE spells (apperant life threatning events where she stops breathing and faints) and it was very difficult to get her to sleep at all, she woke up several of times. So I thought this one would more or less be the same if not worse since she is older and gets what is going on more. Well, Princess Brianna proved me wrong... yet again (and I say that with love and quite happy about it).

We packed some dolls and the beloved Mickey Mouse and a dolly that played music and had a night light... we packed big sister Haileys stuff and took her to my moms house. (Hailey of course didnt mind this at all since she loves going to Grandma and Titos "abuelitos" house and hang out with auntie Jessie).

So after dropping off H-H at my moms we headed to CHOC Childrens hospital (oh yeah in Nana's van because mommy "I" lost my car key its been now 5 days and I still dont find it so I have to get a locksmith to make me a key for our Honda with an immobilizer yay extra expense that was not expected right? NOT) any way so we headed to the hospital. Before checking in we allowed Brianna to play with the BIG BLUE cement balls that they have at the front entrance of the hospital with CHOCO Bear on them. Brie loooooooooved them! She was determined to get a kiss from the painted CHOCO bear on one of the balls! She kept putting her cheek to it and hugging it, it was ADORABLE! She ran back and forth from ball to ball then ran in to the lobby to see the big Bear at the entrance.

Brie stayed with daddy and I went in to do the check in paper work. We walked down to the basement to the diagnostics lab and we were situated in a room (they wanted Daddy to leave and only Brie and I to stay but I was so convinced that it was going to get so bad that I couldnt do it alone so I made them allow the hubby to stay).

I was trying to kill time, I tube fed Brie played with her until finally at around 9:30 I asked them to come hook her all up.

Hook up was HORRIBLE (BUT Brianna made me SUPER PROUD, she did not have an episode!!!! HORRAY) She cried so much her eyes were puffy and red, her asthma kicked in and she was wheezing terribly she was gagging and choking poor baby would probably have puked if it wasnt for the fonduplication that she has. God helped us through the worst part which was putting it all on! How do they expect a child to sleep with all of this crap?

Since her last sleep study was outdated to try CPAP right off the back we decided we would do a half and half (first half regular sleep study, other half CPAP titron).

Good girl fell asleep at 10:34p.m WOW is right! I thought for sure she would wake up within the hour! NOPE she didnt, she was sooooooooooooooooooooooooooooooooooooooooooooooooooooo goood! I was and am very proud of her! by 12:30ish the lady doing the study came in and told us that she had not had any apnea yet so that if she didnt have any apneas by 2am that we wouldnt do the CPAP after all. By 2 am she told us she had two (can you believe that?!) only two apneas and that they were short and self resolved. That if she continued that way then we wouldnt do the CPAP. WELL OF COURSE>>>> YOU GUESSED IT!!!!
Around 2:20am she started having apneas a few back to back (she had finally fallen into deep sleep and she was dreaming sooo she started having apneas, a few central ones and a few obstructive ones. She said that in her opinion they werent enough or long enough for CPAP but since the DR ordered it she said it was up to me if we wanted to start CPAP.

Well by this time its 2:50am the study is over in 2 hours... by the time we WAKE her up (because yes my little baby was still sleeping all hooked up to all of this) and then try to get her to keep the mask on and then try to get her to sleep it was going to be time to go home, they arent allowed to go past 5 am so if our pulmonary still wants a CPAP study then we will have to do yet a 4th study with all night BiPap and CPAP but for what the lady that did the test was saying she is showing improvement and doesnt think she will end up being a candidate for CPAP BUT that is of course up to our pulmonary, so we will check in with her in 2 weeks when all results are sent to her.

Taking everything off was a huge pain too, she cried, choked, gagged, her eyes were puffy and red but she still didnt have a spell/episode (daddy and I coudnt be more proud).

She was so so happy to be leaving the hospital she cuddled with me on the seat while we waited for the transport bus to take us to the parking structure. She sweetly leaned up against me sucking on her beloved pacifier :)

Will post what our pulmonary says in a couple weeks.

Buh-bye bottle, hello g-tube !

April 6th 2008 Brianna was hospitalized again. She was still having her then called "breath holding spells" (turning purple in the face not breathing and fainting) several times a day. The doctor in charged of Brianna Dr Armstrong was a real douche bag. He kept telling me that Brianna was deliberatly holding her breath when she would get upset, that it was normal and it was of no harm to her. This enraged me greatly! After I watched my baby have these episodes a few times a day sometimes for no reason, (she wasnt upset, etc) I decided my husband and I would video tape the next episode and conversation with Dr Armstrong and I would after threaten him that if he wasnt going to do further testing we would see what legal actions we could take. After videotaping an episode you can see it on this link http://www.youtube.com/watch?v=annFEKEEVlU (copy it and paste it) Dr Armstrong ordered a barium swallow study to see if aspiration was the issue for the following morning.

I had gone to work that morning since I had already missed a lot of work with Briannas hospitalization and surgery the previous month. When I got off of work I drove straight to the hospital... when I walked into the room you could see my husband Angels eyes were puffy and red, he had been crying. I asked him what was going on and he wouldnt tell me, he wasnt brave enough. I asked what the results of the swallow study were, but he lied he said he didnt know... that they just came in about 20 minutes before I got there and asked him to stop feeding Brianna (she was in the middle of a feed) that they were going to take her bottles away and not feed her until they had further information from the doctors as to what the next step was. My heart is still breaking as I remember and type this... my husband said "she was so hungry I couldnt do that to my baby, they didnt tell me why I had to stop feeding her so I let her have her last bottle" little did we know that that really was literally going to be her last bottle.

I couldnt wait for the doctors to make their rounds the next morning... so I asked the nurse that was caring for Brianna what the results were (she said "didnt your husband explain it to you?) (my poor husband wasnt strong enough to break the news to me and after she told me what the results were it made sense to me of why my husband allowed her to drink the last bottle)... Her name was Sarah (the nurse) Sarah Jackson... she said the swallow study shows aspiration (with every few swallows Brianna aspirates some liquids into her lungs) putting her at risk for reocurring pnumonias. I asked her what the doctors wanted to do. She said the doctors are thinking a g-tube was the best option for her and no longer allow her to drink by mouth.

(I was lost... what is a g-tube? Not feed my baby by mouth?....what!?!?!?)

She said the doctors and the speech pathalogist who read the swallow studies results would come talk to us with their final decision the next morning.

My aunt Leonor and uncle Fermin came over to visit that night... I remember their faces... speechless. A little after they arrived labs came in for blood work and I wasnt able to stay in the room and watch, I walked out... I walked across the hospital hallway in the 4th floor and I cried, and cried, nurses asked if I was okay... I had to say yes so they could leave me alone. My aunt and husband stayed with Brianna to help hold her and soothe her... I remember catching a climpse of my aunt talking to Brianna and helping hold her as I walked out... I was weak and I hated myself for being so weak but I couldnt help it.

My uncle walked over to me a few minutes later to check on me and I told him what was going on. You could tell he felt for us, for her.

The following morning April 8th 2008... we talked to the doctors who told us their plans were placing a gtube, that when we had made a decision to let them know so they could schedule surgery that they would give us time to think about it. Next the speech pathalogist showed us the video of her swallow study... yep I saw the liquid entering my babies lungs... yep it broke my heart into a billion pieces because actually SEEING formula dropping into your childs lungs as she eats is hard and you know that the feeding tube is a must, which is extreamly hard to accept.

They said they tried thick it formula (thicker formula) and she aspirated that as well. The only good thing (then) was that she would be able to continue eating pureed foods (gurber). To this day I am thankful to God that she wasnt deprived of both liquids and pureeds at the same time because it would have been too big of a hit to the gut for me as a mother. She continued eating pureeds until 18 months old when she begun aspirating them too. She is currently gtube dependant 100%

My husband and I talked about it, but we knew what the decision was... Brianna was getting a feeding tube.

We told the doctors her decision and they scheduled the surgery for the next morning.
Putting your baby through a second surgery in less than a month is hard... very hard... too hard... to much to handle... but what choice do you have when its a must?

April 9th 2008 Brianna had her feeding tube placed, surgery was a sucess THANK GOD... and we say good bye to bottles... and hello to feeding tubes, syringes, feeding pumps, feeding bags, special formulas, gause pads, airing out syringes, and constant fights with medical companies for on time deliveries of these supplies.

As I try to update the past it has now been 2 years and 2 months since Brianna has had her feeding tube and we are very used to it now... I think I have forgotten how to bottle feed babies... lol.

Thanks for reading.

Mommy

Agenesis of the Corpus Callosum diagnose

I cant remember if it was the day of or the day after her first surgery that we received Brianna's ACC diagose, but here is a little of what happened.

Dr Seth came in to Brianna's room in PICU (pediatric intensive care unit) and told my husband Angel and I that he needed to talk to both of us alone. My mom, sisters and mother in law were visiting and he asked them to leave the room... my heart immediately sunk (this couldnt be happy news)...

I remember Seth perfectly... tall light skin blue eyes blond hair... I stared at him for a while afraid to ask what was going on...

He asked me to take a seat, and asked my husband to sit next to me and hold me. My immediate thought there was "terminal findings?" "what did they find out" "what's wrong with my baby" "is she going to die"?...

I sat down on the couch they provide for you to sleep on during your stay... Brianna was still sedated and asleep due to the anestetics (they were keeping her asleep until they could take out her ventilator)... I stared off through Dr Seth and my husband to look at my daughter one last time before hearing what I already knew and felt deep down in my heart that would change our lives forever...

Seth started speaking (in a gentle voice) I didnt want to hear him! "We received the results of the CT Scan that Anaheim memorial performed on Brianna before she was brought to CHOC"... I was nauseas I wanted to throw up and I was shaky... I wanted to tell him to shut up, but of course there was no use... I had to hear what was comming. I didnt look at my husband, I didnt look at Brianna, I didnt look at Seth... I stared into the floor... I didnt move... afraid of what was coming next.
"The scan shows that she has AGENESIS OF THE CORPUS CALLOSUM" (my mind was spinning and I was in shock, what is agenesis of the corpus callosum what the hell is a corpus callosum what is it and is it vital is this compatible with life will she die) I spoke shakingly and very quietly... "wh-at, d d does that mean?) he said "it means she is missing a part of her brain it is called a corpus callosum" MISSING A PART OF HER BRAIN KEPT REPEATING ITSELF IN MY HEAD OVER, AND OVER, AND OVER, AND OVER AGAIN... I fell to the floor, my husband didnt cry he was strong he picked me up and held me to his chest, I was crying... I then pulled the strength from I have no idea where to speak again because now there was another question in my head (I didnt dare ask "will she die" because I didnt know if I could handle that, so I asked the second question in my head... "can anything be done? will she have to have brain surgery"?...
Seth gave me time to relax, he told my husband to hold me up so that I could breathe. He then spoke. But I cant remember exactly what he said, I was hyperventilating at this point and I dont know how I didnt faint. I was crying, coughing gagging, and I just couldnt breathe.
He said "fortunately (good word) the part of the brain that she is missing doesnt require any intervention, it forms in the first few weeks of gestation, and if it doesnt form then it never will. Some people are walking around today and dont even know they are missing this part of their brain" (something like that).
I remember bits and pieces he then went on to talk to me about the differnt types of ACC, partial, complete, etc... and told us that the scan shows that Brianna is completely missing hers. This specific doctor told me then that it was best to have complete absense than partial absense (dont know about that)... he went on to talk about ACC varies widely, from mild to moderate to severe mental retardation, physical retardation and learning disorders. He said some children walk talk and function almost typically and some are severely disabled and never walk talk etc.
We just had to wait... and see. He then said they would do an MRI that night to CONFIRM the agenesis of corpus callosum diagnose and to make sure it was isolated and didnt have enlarged ventricles (sp) or fluid or any other anomality in the brain. (We got confirmation on the MRI results the next night she does have ACC no other brain anomality).

I ran out of the room couldnt take it anymore... I dont know if my husband and Seth stayed to talk but I ran out to the hall where my family was...

I fell to the floor against a wall next to the restrooms in the hall way os PICU...

I cried.

Cried some more.

I screamed.

I yelled.

Hit the floor.

and cried more.

My mother in law came to me and tried to hold me and ask me what was going on but I wanted nothing to do with them.

I later asked one of the nurses to write down AGENESIS OF THE CORPUS CALLOSUM for me so that I could go "google" it and find info. The info I found then devestated me... thank God I eventually found NODCC and the ACC blog and Angels Around the World

More to come in "Getting a Feeding Tube).

Life Saving Emergency Surgery...

After the first hospitalization everything seemed fine. Until March 7th 2008 Brianna (at the time 5 1/2 months old) started getting sick... throwing up all day and getting very lathargic. She wasnt spitting up her formula she was throwing up a nasty green black foul smelling liquid (we later found it was stomach acid/bile). We took her into her pediatricians office that morning(at the time thank God not her current pediatrician) and he said she may be going through a stomach virus, to give her pedyalite for 24 hours. We took her home bought pedyalites she seemed to feel better with pedyalite (poor baby was dehydrated I am sure) but shortly after she would throw it up. I will never ever ever forget this day. We (my husband and our older daughter Hailey, Brianna and I) stopped by a local KFC for lunch that day we set Brianna on the floor next to our table in her carseat as we ate. When we were almost done I looked down only to find her carseat over a huge puddle of greenish blackish vomit (it was so much it was hard to believe it was coming from this little baby) we didnt see her throw it up but we knew. My poor baby was drenched in bile, we quickly ran out to get in the car to rush home to change her while walking to the car I called her pediatrician. He suggested we try pedialyte for another 6-8 hours and see how she felt (he wasnt seeing what we were seeing) and that if she didnt feel better to take her straight to CHOC's Emergency room (Children's Hospital of Orange County) and have her get an xray of her tummy to check for an obstruction. I hug up on him... told my husband I was going home bathing her changing her and taking her straight to the emergency room the heck with waiting 6-8 hours more I said. On our way home I called my big sister Mayra, I asked her to come pick up Hailey so that we could take Brianna to the hosptial. My sister (bless her heart) came quick the second she drove off with Hailey...

Brianna stopped breathing again!

So much for driving ourselves to CHOC. I ran out, I wasnt strong enough, my dear husband was (he had no choice)... he tried to resusitate her and get her to start breathing again as I ran to the street fell to my knees and called 911.

I need an ambulance NOW
My baby is not breathing
shes 5 months old
(gave her the address)
hysterically crying
"stay on the phone with me she asked"
I cant my baby is not breathing, I kept yelling at the poor 911 lady "you do not understand my baby is NOT breathing"
She went off about the ambulance is on its way...
I kept yelling and crying hysterically
HURRY
HURRY
PLEASE
PLEASE
HURRY shes still not breathing.

(now that I think of it I was never given instructions to do CPR on her)

All the neighboors were out staring at me, I heard the sirens of the ambulance and fire trucks in the distance.

HURRY HURRY HURRY PLEASE HURRY - I pleaded.

Just then I heard Brianna start crying... that meant SHE IS BREATHING!

I told the lady "shes crying" she said thats good we want her to keep crying as long as shes crying she is breathing... (I had never been so happy to hear a babys cry until this day).

The ambulance arrived, she was breathing but very pale they quickly put oxygen on her and put her and my husband in the ambulance. I followed the ambulance. One thing I will never forget the ambulance turned into a dead end to turn around because it couldnt just back up from where it was and I was so nervous that I followed the ambulance and made a U turn also instead of waiting for it to turn around.

So much for CHOC.

We were taken into Anaheim Memorial Hospital, again. I hate this hospital.

Once there, they rushed her in and Brianna continued to have these "not breathing" episodes as we didnt know what they were yet or why they were happening. The doctors didnt know what to do with her. They immediately called CHOC "come get this baby we do not know how to care for her"... doctors at CHOC asked Anaheim Memorial Hospital to perform a CT Scan of Brianna's head and start an IV and put her on oxygen until they sent a transport ambulance for her.

They did the CT Scan (this was horrific for us to watch, as this was all very scary for 18 and 24 year old parents at the time.

The nurses in the ER couldnt get an IV in, once CHOC's transport got there they HAD to put one in they were not allowed to drive her to CHOC without a line.
They poked her legs, no luck, her arms, no luck. Finally they said we have to try her neck or forehead... I just about fainted. I couldnt choose... I walked outside of the curtains (to this day I assume my husband decided). They put the IV line on her forhead... hearing her cry almost killed me. I almost couldnt breathe everyone stared at me crying. To open the curtains again walk in and see my baby with an IV line on her forehead was too much for me, I didnt even know they could do that much less did I expect my child to get one there.

They were ready to transport her to CHOC... at this time it was already March 09,2008 maybe 1 am?

My husband rode in the ambulance I was too weak. I took the streets they took the freeway.

When I arrived at the hospital and they finally told me to what floor to go to (PICU pediatric intensive care unit) my heart sunk more, I felt a thousand punches to my stomach.

When I finally got to the room... there was no baby. Only my husband. I frrrrrreaked! Where is she I asked? He said they took her down to do a film study on her stomach... basically an endoscopy but at the time we described it as putting a tiny camera down her throat to see what was going on in her tummy that was causing this.

I was impatient I think every minute I asked about "baby Serrano" when finally two nurses came to get us.... oh Lord, I thought why are they comming to get us why cant they bring Brie back. They asked us to walk with them downstairs... a million questions were in my head.

When we got there they began to explain that Brianna had her intestinines all twisted and backwards they call this intestinal malrotation and a bowel obstruction. That they needed to perform surgery IMMEDIATELY and that the surgeon was on his way... it was now a little passed 2 am. I fell to the floor I was in shock I couldnt cry... I just stared at my precious chubby little baby girl sucking on a bottle nipple because they lost her pacifier. I got put I went to the crib and caressed her, kissed her, prayed for her, and began to cry.

The surgeon arrived (Dr. Lam), sweet short asian man... He got called in the middle of the night in his sleep to rush to the hospital to operate my baby...

He started to carefully explain the procedure to us (not only were they going to correct the malrotation and take out the obstructed part and reattach her intestines but also remove her apendix, I didnt want to hear it... what was happening, this wasnt supposed to happen, not my child, not my baby, was I dreaming?

I will never forget when I told the doctor "how are you going to do surgery on a little baby when you dont even know why she stops breathing" he then said the following I would probably bet exact words "we will watch her carefully, she will have a ventilator breathing for her, if we dont operate her in the next couple of hours she will not make it"....

That shut me up.

They made me sign a bunch of concents I didnt read... I gave Brianna a kiss and her blessings... so did Dad... they took her to the operating room.

They took us to the waiting room... another MOST horrible moment of our lives.

As we waited a priest came to us (St Joe's were they performed the surgery is a catholic hospital) and asked us if we wanted her to baptize Brianna before surgery... my heart was kicked a thousand times "why" "can she die" "will she die" I finally said yes.

Brianna was Baptized in St Josephs Hospital alone in the surgery room sometime around 3 a.m 3/09/2008

I walked the hospital floors crying for hours, my husband on his knees praying... for hours.

Finally Dr Lam came out and said the surgery was done, everything went well. As soon as she is ready we will take her up to a room in PICU at CHOC and someone will come get you to go see her. I hugged him.

More to come in After 1st surgery and ACC Diagnose!

Thanks for reading, LOVE.

Araceli