Our sweet Lila Grace earned her angel wings December 20,2012 at 1:08 A.M at Cardinal Glennon Children's Hospital in St. Louis, MO. Lila was 2 1/2 years old. She became septic because of a shunt infection and that is what caused her death. Please keep us in your prayers. We are beyond heartbroken and still in shock. Thank you.
Love,
Alyssa and Daniel

Surgery Surgery Surgery

Hello Friends,
It's been forever since I've updated on Lila. We have had a tough year. It started off pretty good and Lila had made so much progress! She was sitting pretty much on her own and talking a lot more. She was catching up developmentally and hadn't had a uti in months!! We had her 2nd bday party all planned and all our Sesame Street decorations bought. And then a few weeks before her bday Lila got RSV. She was admitted to Cardinal Glennon for some breathing issues thought to be related to the RSV and some possible seizure activity. She bounced back quickly and was still acting  a little sick but still kicking SB butt : ). Then she took a crazy turn for the worse. On Feb. 24th Daniel called me at work and said Lila was having some issues breathing and that he was going to take her to E.R. I got a sub and was able to leave school and go to the E.R. When I go there Lila was smiling and said "mama" when I walked in. Daniel said they thought it might be pneumonia and that they suctioned her out and she was breathing better. The doctor came in and said that they were going to send us by ambulance to Cardinal Glennon just to be safe. So Daniel went and back the bags and took off and I rode with Lila to St. Louis.

Once we got to Cardinal Glennon they got us in a room and settled in. Lila was totally out of it at this point and had been sleeping since we left Mt. Carmel. We chalked it up to the pneumonia and settled in to bed. About 30 min later Lila starts this awful breathing sound. She was struggling to breathe and gasping. I called the nurse in and she called the on call doctor. She came in to check it out and listen to Lila. Lila's breathing is more and more labored and the doctor was baffled because her air way sounded clear. Suddenly Lila stops breathing.....the next 24 hours were the longest in my life. The doctor called a code blue and suddenly 20 people are in the room. The end up bagging her and eventually intubating her. They then rush her to a CT scan and then to the pediatric intensive care unit. When they finally stabilized her they let Daniel and I go back to see her. The PICU doctor comes in and gives us the result of the CT Scan......shunt failure and increased inter-cranial pressure caused Lila to stop breathing. My heart dropped.....how did we miss the signs? She had been vomiting but Daniel and I had had the stomach flu so we thought thats what she had too and our pediatrician agreed. She had been more tired but she had had RSV and the doctors told us that was the cause of the fatigue. No one had thought to check the shunt and I hadn't questioned.

Seeing her in the PICU was the hardest thing I've had to do. We were only back there with her 20 min before Neurosurgery came to do a  External Ventricular Drain. They explained that since Lila had a UTI (i forgot to mention that earlier...she had gotten the uti a few days before this happened.) they could not do surgery to fix the blockage of the shunt and that the external drain was needed. Lila spent her 2 bday in the PICU. So to shorten the story we had to wait a week for the UTI to clear up and then Lila had surgery on Saturday March 3rd. The surgery went great and we were confident that Lila would come off the ventilator with no issues....but that did not happen. When they first tried to take her off she was off it an hour and then they had to reintubate her. Her airway was so swollen from being intubated that long that in the process of getting the vent back in they knocked her two front teeth out :( my poor baby looked rough....she had no hair (we asked them to shave it all during surgery because it was patchy) and no front teeth.....And we had a new issue...Lila wasn't waking up. She was no longer sedated and was not her self. She couldn't track things with her eyes anymore. She wasn't trying to pull the vent out. She actually wouldn't move at all. One doctor told us she was probably had severe brain damage and that  she would never improve. We were heartbroken....they tried again to extubate her and she did better! Her breathing wasn't 100 percent and she had to be positioned carefully but was not needing oxygen or the vent. The neurosurgeon wanted an MRI but she would need to be sedated for it and her breathing was not stable enough to risk it without a venilator. So they reintabated her. At this point the PICU doctors were trying to talk us into getting Lila a trach but I was not having it yet. I knew there was something else going on and our neurosurgeon agreed. Dr. Elbaba (neurosurgeon) suggested decompression surgery to see if that would help her breathing and some of the issues that she was having. So on Monday March 12th Lila had decompression surgery. It went well and it helped some of the issues. 

The MRI showed no stroke or brain damage!! We were blown away!! Lila was showing some signs of a stroke (only using muscles on one side of her face) but she was still not back to baseline. The MRI did show that Lila had a tethered cord and several cysts and two sphincters on her spine. Her spinal cord is not able to grow with her at this point and she will need detethering surgery this summer (boo). After a month in the PICU Lila was moved to a transitional care unit. And after 37 days we finally brought her home : ) We have had a battle with some pneumonia but she is doing great!

Lila on Easter :)

She is still not back to herself. The last time I've heard her talk it when she said "mama" when I walked in the      E.R. in Feb : ( it breaks my heart to see how much she struggles to gain her strength back. She is like an infant again. Everyday gets a little better and she still is having some issues. Our neurosurgeon assures me that she will be better after the tethered cord surgery. On a bright note her kidney's look fantastic!!!! And her hair is growing back darker and thicker!! God has truly blessed our family and answered our prayers. I know that his hand was on my little Lila and that He never left us. I want to thank everyone for their prayers and support. We have been truly blessed by all our friends and family! 


I promise to update more this summer!!
Love,
Alyssa, Daniel, and Lila

Kid Kart Pictures!

                                                                     Happy Girl!!!

Progress!

It has been forever since I have updated the blog so I thought I better let you all know how awesome Lila is doing! Since Lila got her G tube she has been gaining weight and growing like a weed! We recently had a myleo clinic this past Wednesday and received really good reports. Lila had a renal ultrasound and some blood work done when we got there and then we waited and waited to get called back to clinic. The first doctor we saw was our urologist and his amazing nurse. He was so excited about Lila's progress! Her kidneys look "gorgeous" and apparently look nothing like they did this time last year which is amazing! Last year we were headed toward removing one kidney and now they both look gorgeous according to the Dr. Firlit! God is so good!! All the cathing and meds are definitely working!
We also saw our orthopedic and they said everything looks great :) they said that she is functioning at about L3-L4 and that she has good movement. We also picked up the Kid Kart!!!! A couple of months ago the company called to tell me that they changed their colors of the kid kart and asked that we look up the new colors on their website and let us know what color we wanted. After checking the new colors out we decided on purple :) Lila LOVES her kid kart!! I am so in love with it! It is so much easier to get her around and she loves sitting up and banging on her tray :) whenever I put her in it she smiles ear to ear! This week has been a week full of new equipment! We also got a new pump! It fits in a little backpack that we can take anywhere it is super awesome. Our old pump was attached to a IV pole and was impossible to travel with.So this new pump is a HUGE improvement!
Lila is getting so big! She is babbling and talking a lot more and lately has been trying to push up on her hands and knees when on her belly. She can only hold her self up for a small amounts of time but she's making big progress. When we first found out that Lila had spina bifida I worried that she would never walk. Now I've come to realize that it doesn't matter if she does or not. She's my baby and I love her no matter what. I realized this week that it no longer hurts to think that my baby is in a wheelchair. I was afraid that when we finally got our kid kart that it would feel bittersweet. But when we put her in her kid kart for the first time and I saw her smile and look so excited I knew that whatever happened I just wanted to see her have that look of excitement and happiness. There wasn't any bitter at all...only sweet. I am so excited about this new opportunity for Lila and can't wait to see how this kid kart will help her!God has blessed me with a truly amazing gift!

So Big!

Our little Lila is getting SO BIG! She is doing great! Lately she has been really enjoying playing at Nana's house with her Aunt Brenna, Aunt Beth, and Uncle Jack. She is also getting herself into some tight spots (literally). Last Sunday (our 1 year anniversary!!) my sister and I took a trip to Wal-Mart and left Lila at home with Daniel. As I'm walking down the dairy aisle my phone rings and when I answer I hear Lila screaming in the background. I also hear Daniel yelling frantically but I can't make out what he is saying. When I finally get him to stop yelling so I can understand he tells me that Lila's head is stuck in the high chair and he can't get it out. Actually this is what he said "Lila's head is stuck in highchair! YOU NEED TO COME HOME NOW!" So as I'm about to tell him to get some butter and grease her head (the only thing I could think of at the time lol) he exclaims that he got her unstuck. I'm still at a loss of how her head could get stuck. Apparently it was stuck through the side of the chair and her nose was stuck under the button that folds the chair up. Other than that our day was pretty great! Our church had a family fun day and we had chowder, carved a pumpkin, and went on a hay ride! It was a great day. The next night Daniel took me out to dinner and we went to see The Help which I've really been wanting to see. That's all for now!

Love,

Alyssa, Daniel, and Lila

Spina Bifida Awareness Month!

Since October is Spina Bifida Awareness Month I thought I would provide some information about Spina Bifida for those who are not familiar with SB.

Spina bifida is the most frequently occurring permanently disabling birth defect and the most common Neural Tube Defect. It affects approximately one out of every 1,000 newborns in the United States. Spina bifida results from the failure of the spine to close properly during the first month of pregnancy. In severe cases, the spinal cord protrudes through the back and may be covered by skin or a thin membrane. Surgery to close a newborn's back is generally performed within 24 hours after birth to minimize the risk of infection and to preserve existing function in the spinal cord.

Because of the paralysis resulting from the damage to the spinal cord, people born with spina bifida may need surgeries and other extensive medical care. The condition can also cause bowel and bladder complications. A large percentage of children born with spina bifida also have hydrocephalus, the accumulation of fluid in the brain. Hydrocephalus is controlled by a surgical procedure called "shunting" which relieves the fluid build up in the brain by redirecting it into the abdominal area. Most children born with spina bifida live well into adulthood as a result of today's sophisticated medical techniques.

Myelomeningocele

Also known as open spina bifida, myelomeningocele is the most severe form — and the form people usually mean when they use the term "spina bifida."

In myelomeningocele, the baby's spinal canal remains open along several vertebrae in the lower or middle back. Because of this opening, both the membranes and the spinal cord protrude at birth, forming a sac on the baby's back. In some cases, skin covers the sac. Usually, however, tissues and nerves are exposed, making the baby prone to life-threatening infections.

Neurological impairment is common, including:

• Muscle weakness, sometimes involving paralysis
• Bowel and bladder problems
• Seizures, especially if the child requires a shunt
• Orthopedic problems — such as deformed feet, uneven hips and a curved spine (scoliosis)

I am so proud of my little SB miracle! She is such a blessing to me and Daniel!

1992 Childhood Symptoms

While at work today switching books and movies out of our parent library, I came across a book titled Childhood Symptoms Every Parents Guide to Childhood Illnesses revised edition. Curious, I thumbed through the book and found spina bifida as one of the topics. I quickly looked at the date the book was published and saw 1992. 1992 wasn't that long ago....so I opened the book back to spina bifida and began to read. This is what I found.....

"Spina Bifida- a congenital condition in which the bony casting around the spinal cord does not develop properly, permitting the spinal cord and meninges to be exposed. This serious hereditary developmental abnormality occurs during the embryo's first weeks of life in the womb, when the creation of the protective tube around the forming spinal cord does not close completely. After birth, it can be associated with paralysis, deformities, and hydrocephalus (commonly known as water on the brain).

Spina bifida occulta is a milder form of the condition in which the neural tube around the spinal cord is not completely fused, but there are no problems or symptoms, and it may go undetected for years. It requires no treatment.

However, there are two other, graver types of spina bifida- meningocele, in which the membranes that cover the spinal cord protrude through to the surface of the back, and meningomyelocele, in which both those membranes and parts of the spinal cord and nerve roots are visible. Some spina bifida babies with severe meningocele or meningomyelocele have brief lives counted in mere hours, while those who do survive longer commonly have mental retardation and limited motor and muscle-control skills.

Action- Surgery can aid in relieving many of the possible complications. Parents should seek genetic counseling, for the risk of having another child with the same defect is greater than that in the general population. Amniocentesis can pick up signs of spina bifida. Professional help should also be sought to aid the parents and any siblings in coping with the familywide problems associated with this condition."

Holy cow. It really surprises me that this is the information that they had on spina bifida as late as 1992. And then again it doesn't surprise me. When we were given Lila's diagnosis we were told that her lesion was so large that she would probably never walk and would essentially be a vegetable. Terminating would be "understandable" in our case.It breaks my heart to think of all the children that were never given the chance at life because of a diagnosis. Also it infuriates me that "vegetable" would be used at all to describe these children. AAH! I promptly took the book out of the rotation (other info was outdated as well).

I am thankful that medical technology has improved and reading this today made me realize how blessed that Lila was born in 2010 with all this new information. Hopefully one day soon doctors will have even more information on spina bifida and deliver the diagnosis in a better way.