Emma's Weight Update..

We are thrilled to announce...
Emma is 14 pounds!!!
Woo Hoo!

A Very Special Visit From A Fellow NICU Grad...

Today we had some very special visitors. We were pleasantly surprised to finally meet the Delgado family face to face. Many of you may remember praying for Baby Alicia, a few months back. She was born at 24 weeks gestation and spent about 4 months in the NICU before going home to live with her Mommy & Daddy. We have been keeping up with them over the interent and we have often felt like we already knew them. Emma and Alicia are living miracle sand amazing testimonies to the power of prayer and God's faithfulness. It was such a blessing to finally meet Alicia and her parents, Hechung and Mike. We were able to share stories and just marvel and our girl's developement and watching them interact with each other. Below are a couple of pictures of the girls together.

Clear To Go Home!!

This morning Emma was cleared to go home tomorrow after her last antibiotic has been given. We are overjoyed that we are going home. Although tomorrow is right around the corner, we still tried keeping busy today. Emma is very into Jojo's Circus these days so we pretended she was Galioth the Lion (Jojo's pet Lion) in a cage, when Emma was in her crib. See Below...

Emma the circus Lion...

Emma's Nurse Dottie helped celebrate our pending discharge and Emma's updoming 2nd birthday with a special card and a darling photo frame. Thank you Dottie for the TLC, Emma's present and munches (loves)...

You are such a sweetie!!

Keeping Busy

Emma is such a blessed little girl and as we continue our hospital stay I see it more and more... She has so many people that love her in and out of the hospital. While we have been in the hospital, our hospital family has lavished her with affection and brought things in to keep Emma entertained. This has and continues to bless me as well, not only do I love that my daughter is loved, but it can take a small break from doing the entertaining. Our parents have been a tremendous help as well, with visits and "in-room Emma sitting" so we can get out and I can continue to work. We are hoping to go home on the 1st of July as long as Emma stays infection free. Please pray that we will be able to go home once her IV antibiotic treatment is complete. Thank you for all of your love and support. Here are a few pictures from the last few days...

G'ma Carol (from CHOC) brought is this GREAT toy for Emma this morning. Lets here it for the exersaucer!!! Mommy's arms have never been so free.

Emma loves the exersaucer!

Auntie Kelly and Uncle Braden came to visit

Emma & Nurse Holli , Emma loves her Holli. Mommy loves her too, she always sleeps well knowing Holli is caring for Emma

Emma and Nurse Rhonda, Emma loves Rhonda and giggles every time she comes to visit

Grandma brought a "croaking" frog for Emma from Grandpa ;)

As you can see Emma loves her frog... Emma also got a frog from Grandma's friend Lisa. Emma is one spoiled lil' one...In a wonderful way!

SIX days to go

Well we have 6 more days of IV antibiotics before we can go home. Emma starting to feel like her little ol' self now but still doesn't have all of her energy back yet. She has bursts of energy and then gets tuckered out shortly there after. We continue to try our best to occupy our girl and ourselves with activities so we all don't get cabin fever from being cooped up. Here are a few pictures of our fun at CHOC at Mission.

Emma in the Big Bed

Emma keeping still for her Echocardiogram

Napping with Daddy


Emma and Nurse Jennie, Emma loves Jennie SO MUCH!


Emma got a visit from RUBY the pet therapy dog



Watching Jo-Jo's Circus DVD


Giggles with Nana

Emma has taken to the liking of Eating Socks, I think this one is Vanilla

CHOCO Bear came to visit but Emma was still not so sure it was a good thing

Friday Emma Update

Emma is starting to feel a little better. She has been in the hospital for 12 days now and we were told this morning by the infectious disease doctor that Emma needs another 8 days of antibiotics before she can go home. She had her MRI on Wednesday and everything looks normal. They also did an echo of her heart to make sure that the blood infection did not cause any problems for her repaired heart. Her heart looks great as well. We are pleased that all the tests are coming back negative, but it is frustrating not knowing why she is not growing faster and continues to vomit. We thank you for all your prayers and well wishes.

Daily Changes are Making Us Weary

Today Emma's Doctor came in and said she thought she had a solution to the metal in the trach/MRI problem. She also placed several calls to the specialists that see Emma regularly to consult with them on this issue. The E.N.T.Doctor came to see Emma and to replace Emma's trach with an all plastic trach and if she did well with it she would get the MRI. Well he replaced her trach and also looked down inside her trachea with a small camera. He was impressed with how her trachea looked but that he did see a small amount of swelling due to any trauma that might have happened over the last few days of removing the trach so often.
Emma now has a new infection in the trach on top of all of this which means we are back in isolation. This is a bummer because it means that anyone entering her room has to put on a mask & gown to prevent spreading the bug.

The good news, Emma is scheduled for an MRI at 9 am as long as the O.R. can spare a pediatric anesthesiologist. Emma is also showing signs that she is starting to feel better. We will keep you posted as we know more.

Monday Update

Emma has a blood infection. She will need to remain in the hospital for at least another week while she gets a heavy dose of antibiotics. The MRI scheduled for today has also been cancelled due to metal in her trach. Until they can find a safe way to keep her airway open during the procedure, they have put it off. Alissa has been in the hospital the whole time with Emma and will remain with her until she comes home. It is hard on all of us not having us all at home. We bare through it because it is typically only 4 or 5 days. This time it has been much harder.

Emma's Sunday Update

For the second straight year we spent Father's Day in the hospital. The day started out with fun pictures taken for Daddy (Sorry we're not able to post them from the hospital computer) and a wagon ride around the units. Emma seemed to be feeling better and even hung out at the nurses station while Mommy and Daddy went out to lunch. She is scheduled for an MRI tomorrow at 11AM to see if there is pressure in her brain causing her vomiting episodes, so we have been preparing for that. There were talks of going home in a few days, but then at 5PM tonight, Emma suddenly spiked a fever of 104. The Doctor and her nurses drew a bunch of blood, took a tracheal aspirate, and cathed her for a urine analysis to find the reason for the fever. Several tests were run but we do not have the results just yet. They started her on a broad spectrum antibiotic and her fever has dropped. Hopefully it is something minor and we will still be able to go home soon.

Quick Update

We just learned that during the first surgery yesterday, they gave Emma 10 times too much heparin which caused the extra bleeding and swelling. The hospital is doing an investigation and will be changing some procedures so that this type of thing never happens again. The good news is that there will be no permanent effect from this and she already has the heparin out of her system. She is still sedated and resting right now.

Surgery

On Monday, we took Emma back into the hospital. She was throwing up all weekend and was becoming dehydrated. Since she was just in the hospital 3 weeks ago with the same problems, we asked that the doctors run as many tests as possible to see what is going on. On Saturday night her body temperature was 95.9 degrees with a heart rate of 165 while she slept. Her normal heart rate while she sleeps is 70. After admitting her into the hospital, Emma needed IV fluid again. Unfortunately her veins are shot from 2 years of IVs. We elected to have a porta-cath put in which will allow permanent IV access. It is under her skin and runs through one of the main arteries in her neck. The surgery was supposed to last an hour, but due to her small size there were complications. The surgeon had to modify the device because it was too big. After the surgery, we noticed swelling and blood pooling around the site so they took her back in for a second surgery. During both surgeries they needed to remove her trach and stitch up her neck so that air would not escape. They intibated her with a breathing tube since she is trach dependent. We were more nervous during this surgery than we were with her heart surgery because we know how dependent she is on the trach. After the second surgery, she looked much better. She is recovering in the Pediatric ICU receiving one on one attention from the nurses. She is on morphine for the pain. We do not have any updates on her labs yet to determine why she is throwing up and having irregular temperatures and heart rates.

Prayers Needed Please...

Please pray for our family. Emma went back in the hospital originally for IV fluids on June, 11th, while she was here, we opted to have a port-a-cath(a port under her skin) placed, which would allow her to not have to endure the traumatic experience of getting an IV with every admission to the hospital. This was supposed to be a relatively easy surgery, however Emma endured some complications that caused her to have to go back into the operating room a 2nd time to stop some unexplained bleeding. Once in recovery, Emma was brought to the Pediatric Intensive Care Unit for closer observation. Emma was sedated to keep her comfortable and hopefully pain free. It was really hard on her little body, not to mention on her mommy and daddy.

As of today, June 13th, Emma has continued to progress slowly and is still on meds to keep her calm. She is still in the PICU and has opened her eyes a few times to watch Jo-Jo's Circus and Elmo. Please keep us all in your prayers while Emma continues to heal. Please pray specifically that the Doctors would find the root of her feeding intolerance and that it is treatable. Thank you in advance.