Ella's Follow-up

Well another day....so last night we saw Dr.Muniz (allergist) he doesnt think its medication.So we think Ella had a grass allergy from Dad mowing Monday night,also she has grass allergens from foods like tomato,watermelon,apples...etc. Everything my little girls loves tomatos from her Papi's garden.So we will stop eating these as of today and see if it goes away.
No hives this morning so that's a good sign.Update later in the week.
Nikki

Update after Dr.Brenner

Well we saw our cardiologist yesterday.All is well with her heart she sounds great,her liver is just a little bit swollen but he didnt seem concerned.Yesterday after lunch at Nani's Ella once again broke out in hives after eating a slice of tomato and a ham sandwich with multi grain bread.Both of these normal things she has always eaten.I mean big hives too!So we decided after he saw her to stop all meds and get her to a pediatric allergist right away.
Well in doctor terms anyway...so we go Monday to see Dr.Muniz.Atleast the lips are better now we will work on the hives and see what the weekend brings.Love to all..
Nikki

Sleepless in Frederick

This morning Ella woke up with swollen eyes, we really did not think much of it at first...As the day moved on Ella was not really acting like herself, she had no desire to swim in the pool with everyone and she had hives all over. She did as for some yogurt so we gave her some, my guess is not that the yogurt cause this reaction but something sure did.

We immediately rushed to the Dr.'s office and spoke to Dr. Brenner many times, needless to say I was in tears....We still do not know what has cause such a reaction I guess it could be alot of different things. I would imagine that I am going to be spending my night making sure my baby is still breathing.... Who needs sleep I gave that up with motherhood right????

Nikki

Weekly Update

Well we are settling in to our somewhat daily routine now.Ella goes tommorow for blood work and Thursday we are off to see Dr.Brenner (Ella's cardiologist).Hopefully we will get goods news on how she is doing on the coumadin and improvement on the size of her liver.The girls got a visit from Auntie Jen last night,and Mama is going out to dinner with no kids tonight...Yipee!
Will keep you posted as to how the appointments turn out.
Nikki

My First Post

This is my first lesson with Lisa this morning.All is well Ella is off with Auntie and Pop-Pop today to do some pottery.Baby Kate is with her Nana. Jason and I are off for some R&R at Castle land to see his cousin Stuart,who is visiting from England.Ella is still whining daily and trying to get her way.Hopefully this will all stop soon..Nikki

Lisa's last Post

Ella just got home from her follow up visit at JHU,stitches are out and her "baby scar"is looking good.Her liver is still a bit in-larged due to post Fontan but is expected to go down.we will remain in a handful of meds. The next 5m Ella well have weekly visits at Hopkins, fun fun huh....Nikki is going ot know Baltimore inside and out by Christmas....

Dr. Brenner has the pleasure of Seeing Both Ella And Tatum next Thursday....Ella is breaking him in early and Tatum is the end to his day Won't he be excited for his two favorite Mom's LOL...

Sadly this is my last post Nik is getting her Blogger Class first thing Sat Morning :) She has tons of pictures to post so Look forward to Sat's post...

there are Hospital pics as well as yesterdays fun finger painting pics with her aunt Ra-Ra....I hope you all have a wonderful weekend

Lots of Love :)

Lisa

Home Sweet Home

Homeward Bound!!!!!!!!!!!!

Just spoke to Nik and they are filling out paper work and packing up the room. She was waiting for Dr. Brenner to come by then they are out of there!!!!!

I think I now have Nichole addicted to blogging so I'll be over her place giving her a crash coarse.....It is pretty easy :) She is planning to keep her blog up just to make it easier for you all to watch the girls grow.

Thanks for all the prayers and support while they were there and always :)

Lisa

Going Home.....MAYBE:)

We have good news all around!!

Ella was unable to go home yesterday - but we are hoping for today. Still quite a feat as her open heart surgery was a week ago today!!!
She was totally excited by a visit from her best friend Alison. They held hands and walked the ward , of course the nurses were just laughing at our little princess. They shared Scooby Doo push ups and had quality "girl talk"!!

They gave Ella some pain meds for the first time since she got to the peds floor. What a difference! The small dose gave her the ability to walk, play and move more comfortably. Ella told Mom and Dad that she is ready to go home!!

Another Day....

Ella is doing better everyday....Yesterday she developed a little fluid on her lungs, this is a side effect of the surgery, so x-rays were taken and they are waiting until after 10am for a full report from the doctor. Nik thinks that they may get to go home by Wed. This would be terrific since no one is sleeping well at the hospital.

Ella is only on a "whiff" of O2....that is nothing but it seems to be the hardest to get kids off of.

Just wanted to remind everyone that the FNP has a article about Ella today "The heartest hurdle" I have been trying to get a copy of the article from 05 for you all but I am still working on it, much easier said then done :)

http//www.fredericknewspost.com/sections/news/display.htm?StoryID=62820

News from Mom and Dad....

Hello to all!
Well the "on-call" cardiologist says if Ella maintains her o2 (oxygen) level in the upper ninetys we will come home Sunday or early Monday.Our only concern is that this is not her regular cardiologist so we will see how much she walks and how clear her lungs are today.She is still dramatic....When they told Ella she could go home possibly tommorow she told Dr.Everett "no,I dont want too".So she is getting better and wow is she gonna have a rude awakening when she comes home and Jason and I have to take care of Baby Kate and Nico also.Ella will have to come out of Ella's world and back to reality!

Update soon..Jason and Nikki

Everyone looks happy

It appears all is well at Hopkins.....

What a difference a day makes!!!!

Ella started the day in the PICU with a chest tube, neck line and oxgen at 40 percent and ended the day in "step down"!!
They removed all of her lines and the chest tube with the exception of one IV line in her hand in case they need it. She sat up, ate and was able to walk (a few steps with MUCH drama). Mom and Gran got her situated, with IV pole and oxygen tank in tow. The nurses encouraging her and bribing her to walk to the waiting room. Ella, being our little PICU Princess, walked 4 steps and sat down in the middle of the floor and told her Mom to "put me back in my bed and let me watch my movie"!!!
Not happening, we made her get up, to try again ,she walked 10 steps before she was carried back to bed to watch her movie!! Daddy's favorite Scooby Doo video.
To quote a PICU nurse " You have a future Oscar winning actress on your hands"!!
Ella was moved tonight to the pediatric floor and has a pink room with a pull out bed. Mom and/or dad can spend the night comfortably rather than Jason trying to stay awake in a straight back chair!!! Her coloring is good, her oxygen levels are good and she is hungry!

Today's funny stories - Ella has been receiving much appreciated mail from her friends and when it was brought to her to open tonight (after she provides a few good strong coughs, on bribery basis) she was asked to open the envelopes. In a small pathetic little voice, she said, "I can't", and looked away. When asked why? and she said " b/c my arms hurt". When asked why her arms hurt she looked down and responded - without skipping a beat - "because I had surgery". It took a lot to keep from laughing!! Her personality is definitely back!!
Her Pop-Pop could not make it down today so when she called him tonight to say goodnight he told her he was coming to see her in the morning.
He asked her if there was anything she wanted him to bring her and again, without skipping a beat and in a dramatic, sad little voice she responded "flowers, Pop-Pop", "pink and blue ones". Again It took everything not laugh.

The doctors are pleased with her progress, as everyone is. Yesterday was filled with love and kisses from Nannie and Poppie and Gran and T-Pop. Auntie, Mom and Dad were also there to hold her hand and watch movies with her.Her progress is getting stronger by the hour!! Thank you to everyone who has kept her in their prayers, It is truly appreciate by everyone! I'll have another update in the morning!

Lisa/Denise :)

TGIF

No more chest tube! There hoping to get out of picu today & get Ella walking.

She had her first soup & crackers!

Ella says thanks for the cards :)

Have a good weekend everyone...I'll keep everyone posted :)

Early Morning Update from Auntie

This is a email that was sent to me at 3:45am....Wow what a late night...I guess that is why the ladies were asleep for my usually morning update :)

Good early morning!
It was a good day. Ella was able to sit up in a chair a few times and got to sit in mommy's lap for awhile. She got her first "fat" and was able to drink some chocolate milk for the first time!!!!
They took out her second jugular line and her "paddle" from her arm. She still has one chest tube and a jug line in her neck and iv line in her hand. Each day they have been able to remove a line, which is promising. She was able to come off of the CPAP for most of the day and was on a nose cannula which she tolerated well. We had a few drops in her oxygen level late tonight and they put a face oxygen mask on to aid her - but only at 35 percent oxygen.
Mom got to paint her toenails in blue, pink and yellow ( she wanted all 3 colors) and she now has a sassy polka dot pedicure!!! Both sets of grandparents came and her T-top finally got to see her awake and got a high five!! Previously every time he went back she was asleep!!
Gran and Nannie got plenty of bedside time, which made our little PICU Princess VERY happy!! She has watched her favorite movie "Annie" several times much to the nurses enjoyment. Our little princess has gotten her love of music from her Gran!!
We are hoping to have her other chest tube removed tomorrow - she had some issues with coughing and loosening up the fluid in her lungs. She still has a partially collapsed lung but the fluid is moving from the right side to the left - she is moving more, which helps!! The doctors seem pleased with her progress and keep reminding us that the recovery is the hardest part of the surgery. We'll give another update in the late morning tomorrow!
Denise

As soon as I get another update I'll pass it along...Happy Friday

Lisa

PICU PRINCESS

I just got a picture from Denise's Cell.....Ella's Coloring is AWESOME

The Follow-up article about Ella is going to be in Sunday's Frederick News Post

and in case anyone is interested the following link is a segment from Today's Good Morning America, It is about Williams Syndrome...That is what Tatum was DX'ed with at 6weeks

http://abcnews.go.com/Video/playerIndex?id=3393673

On the rebound

Both grandmothers visited Ella yesterday, the little princess had no shortness of visitors. She is getting more feisty and moving more; which is good; but she does not like being hooked to the machines. Her new famous words seem to be " Daddy get me out of here"...Jason just keeps telling her that is not happening yet... or "I want Auntie and Papa" . This morning with the help of Mom and Dad she put her Ariel toothbrush to work. She is much better today and seems to be on the right track to recovery.

Last night they were able to get alot of the fluid off of her lungs but she is remaining on the C-Pap. They took her off briefly but her stats plummeted so back on the machine she went. In case anyone is wondering the C-Pap is a machine that holds her lungs open because her diaphragm is not working properly.
Unfortunately she can not step down from the PICU until she is off the C-Pap.
There was nerve damage to the diaphragm cause by the ice that her hart was wrapped in during the surgery...although it is not permit it does heal sporadically in a time frame of 2 days to 6 weeks. This nerve damage is what cause the lung to collapse, which by the way is getting much better. Our little Ella is quite a trooper. The only bad news is the hospital stay is going to be longer then we all expected.

Today the nurses are going to try and get Ella into a chair the more movement for her the better for recovery...They are also planing to have the opposite pacer wires from her heart, remember one side was removed yesterday, and the line in her jugular is coming out. Once the cheast tube is done draining it too can come out, Jason said it drained alot last night so it is still doing its job and most likely not ready to be removed today. Maybe today I can get Mommy or Auntie to send a picture of our PICU Princess for the you all to see...

I'll be sure to let you all know of any changes and remember no news is good news :)

Have a great day... Nik and Jay send there love to all of you

Love, Lisa

Latest Update:

Oxygen saturation levels are still low so they will keep the C-Pap on.
Without the C-Pap her levels are in the low 80's.

There is not a need for surgery at this time. Her diaphragm is not
paralyzed - which is great news. They think it may have been the nerve
that operates the diaphragm which was nicked or stretched during
surgery. This will hopefully heal itself. Her right lung is partially
collapsed. They will keep her on the C-Pap to help her lung get
stronger.

There is good news. They are removing one of her chest tubes and the
pacer wires from her heart. They are also removing the femoral arc
line.

They are keeping her quiet and sedated today, Jason and Nikki have had a pretty rough morning but are doing better now...If it is not bad enough to have to go through this but to do it on zero sleep makes it even worse...

Thanks Denise for the update... I think we can all breath a bit easier now...

A Bump in the Road

Yesterday was a pretty good day for Ella, by evening she was sitting up, drinking water, and eating Popsicle's. The nurses were getting the biggest kick out of her, they would ask her to cough and instead of actually coughing to clear her lungs she would say the words "cough, cough"...so Ella huh...

Anyway sometime after midnight the Dr.'s made the decision to suction our her lungs, she was unable to really cough stuff up. When they did this her saturated O2 level dropped into the low 80's. A person's O2 level should range between 98 and 100 for a healthy person...
Tatum sometimes drops as low as 96 and is OK, but usually they do not like anything under 94 and defiantly not the low 80's. Ella's O2 level since surgery and prior to there suction had been 98-100.

The immediately put a C-Pap on her to raise the saturation levels. They are reviewing the X-rays taken last night along with her echo cardiogram to determine it the sudden drop in O2 levels should be accredited to a collapsed right lung or a paralyzed diaphragm.

In the event that it is the diaphragm she well have to undergo another surgery to correct this. If it is the right lung it can be corrected by a procedure that is not as evasive. In any case this is not the best nor the worst situation for Ella. Please keep El and her family in your prayers...I know you all are, today is going to be a tough one.

I'll post more later this afternoon or early evening when Nik and Jay know exactly what is going on.

If anyone has any other questions please feel free to drop me a email and I can try to answer what I can...Having been through heart surgery with my own baby I may be able to explain something better if need be.

recovery road starts here...

Dr. Brenner is please with Ella so far.... She woke up long enough this morning to ask her Mom to leave and Auntie and Papa to come in that is kids for ya.....

Right now she is not tolerating any liquids or food not even ice chips and water the goal for the day is to have her sit up.

Although she is draining well there is still lots of flem in there, but she is still requiring O2. Once weened from the O2 the draining process should continue quicker and make liquids something she can handle.

Hopefully she'll be out of the PICU by the end of the week.
Jay stayed awake and watched her last night, Nik says he is a little punchy after no sleep for 24 hours... look out hospital tonight is Nik's turn on the night shift....

She is loving everyone's comment as I read them to her and says Hello to all of you.

Good Morning....Nikki and Jason are off to a early start this morning....Ella was taken off the vent and Tube around 3:30am... The BP is still a issue but small....She seem to be tolerating it just fine.

Dr. Cameron is making rounds around 8:30am so She'll update me again later on...

I hope you all have a good morning.

Lisa

So Far So Good...

I spoke to Nikki and the surgery went well ,she saw Ella briefly and said she looked pink, that is a very good thing. Ella was on the heart and Lung Machine mush longer then anticipated but everything was OK. The surgery prep took a bit longer...it always does...they were not able to get a line in her wrist like they had done for the cath so they had to use her groyne.

Ella is going to remain on the breathing tube tonight in the PICU and hopefully they can remove it tomorrow. She did wake up but they gave her meds to go back to sleep and different med to maintain her BP. They do not want her awake because she would try to pull out the breathing tube and also cause her BP to rise. They added another line to her jugular in order to monitor the BP closely she has a total of 4 lines right now, Dr. Brenner said tonight would be the hardest night but was also positive, keep those prayers a coming...The fact that she already has color back so quickly is huge.

I'll Keep everyone updated as I hear more... And leave Ella some comments per Nikki its for her journal...

As soon as her echo is complete they are going to see her...

Sending Pictures or Cards

No New yet most likely after 4 sometime. Nikki and Jason want to share this slide show with everyone ... also this is the address for sending cards and drawings for Ella's Rm...

Ella M ( you all know the last name)
1915 McElderry St
Baltimore MD 21205

This is the Children's House Address and much easier or you can send then to there home :)

Today is the day...

Just wanted to give you all a fast update...Nik called me this morning and said that Ella's surgery was moved to 10am and should take about 4 hours...I'll update the blog as soon as I have any news... Thanks to all for the prayers.

On our Way

Hello everyone well after a great day at the pool we are packing up for JHU!I cant belive its here and my baby girl has to go through this again..Im really struggling this time around.Jason and I appreciate everything you all have done.Lisa will fill you in Monday as soon as we get out.Love to you all.
Nikki@Jason

One More Thing...

To all our playgroups friends and anyone else pictures colored by the kids would be awesome especially with their pictures attached to decorate her room.
xo

Incase you have not heard...

here is a quick synopsis on Ella...

Ella was born with tricuspid atresia. Tricuspid atresia means that she does not have a tricuspid valve inside her heart. Since the valve is not present the right side of the heart has problems developing due to lack of blood. Your heart is made up of 4 sections that comprise of 2 pumps and 2 holding chambers. One of the pumps provides blood to the lungs and the other provides blood to the body. Ella was born without the pump that provides blood to the lungs. She has undergone multiple open heart surgeries to help create a palliative correction so she can live a relatively normal life. On the 16^th of July at John’s Hopkins University she will undergo what is called the Fontan procedure. This will hopefully be the last staged open-heart surgery required for many years to come. Of the many surgeries that Ella has had performed this one will probably be the hardest recovery to date. Please keep Ella in your prayers and thoughts over the next couple weeks while she undergoes the surgery and fights back during the recovery. We well continue to update this blog with Ella's progress...

Kate is doing Great and getting so big, it has been crazy having a regular baby on a normal growth and development schedule and it keeps Nikki very busy :)

We are all just trying to get through this tough time, we are so glad we have our family and friends around to help ...your support and prayers alone do more then you'll ever be able to imagine and for that we say thank you. We are spending the night on Sunday at the Children's house. This its basically free, non-profit, for the family's of children having surgeries.They are asking for phone cards in the smallest donations or small Safeway cards like 10 dollars or so..If you can swing any donation that's great, just let me know and I can get you the info I have not already email it to you.

Ella is in terrific hands and we're confident with all her doctors. We are truly lucky to have such a great hospital so close.