Monday, January 31, 2011

Shes out of surgery!

This is what we all look like when we get news.

The neurosurgeon just paid us a visit. He said that everything went well and Faith is in recovery right now. She will be there for another 30 minutes and then we will meet her in Pediatric Intensive Care Unit. She will spend the next couple of days there and then be transferred to a regular room.

The doctor had all good things to say about the surgery. He said he removed all of the lamina on C1, a portion of C2 and even less of C3. He said that he visibly noticed a relief of pressure on the brain stem by removing these bones. The scull was not causing any issues, so he left all of the scull intact.

We are looking forward to seeing her. Thanks for checking in.
Here is a picture of our visit on Saturday. The kids can't wait to bring sister home.

Faith is off to surgery again. No news yet, but we did get a little bit of clarification on what the surgery entails. The doctor told us that they will not actually be removing the supporting structure of Faith's spine, but taking a portion from it called the lamina. Although the picture below does not depict the exact scenario in Faith, it does give you an idea of what the doctor will be removing.

The x-ray below depicts the portion of the skull and the C1 lamina that will be removed. Most likely faith will have the C2 lamina removed as well.

The doctor expects the surgery to take about two hours, so we don't expect to hear much until around 12:00 AM. I will post again as soon as we know more. Thanks for checking in and for all your prayers..

Friday, January 28, 2011

The Results are in...

The results of the sleep study are in. The results confirm that apnea is the cause of Faith's low oxygen levels.

The study began without any oxygen assistance and during this period Faith had about to 50 apneas an hour. During these apneas Faith would go without taking a breath for about 15 seconds and her OS level at times would dip to 60%. When supplied with a half a liter of oxygen her apneas decreased in number and her OS level averaged about 80%. When supplied with 1 liter of oxygen her OS level averaged above 90%, this is the preferred average, but her apneas still did not cease. While faith experienced all three types of apnea during the study, the most common was the apnea related to brain function. The pulmonologist suggested that all three apneas being present could be an indication that the chiari malformation is the root of the problem.

The neurologist agreed with this diagnosis. His recommendation is to do the decompression surgery. He reminded us that while this operation is not guaranteed to fix the problem it is the only remedy for pressure on the brain stem. We asked him if we could go home on oxygen and wait for a while to see if Faith would grow out of it. He said that it was a viable option to be considered in the interest of avoiding surgery, but to consult pediatrics to see what there recommendation was.

The pediatrician did not think it was a good idea to wait. While Faith's OS levels remain in an acceptable range while oxygen is available, there is concern that her apneas were still severe enough that she is at serious risk if she is not monitored closely.

It appears that surgery will be our course.

The surgery is scheduled for 8:30am, Monday, January 31st.

Prayer Request
While we do have the heebee-geebees that come with any surgery the Neurosurgeon assures us that this is a very simple surgery, with very little risk. So the great unknown is really weather the surgery will actually resolve the issue. Please pray that it is a success, that Faith heals quickly, and that we get to come home soon with no more complications.

We love you all and thank you so much for your prayers and support!! God is with us and he IS listening.

Sunday, January 23, 2011

What we are waiting for

The Neurosurgeon visited with us on Friday to let us know what the plan is over the next few days. While it is his theory that the pressure on the brain stem is what is causing Faith's low oxygen levels. He wants to be absolutely sure that there is nothing else that could be causing this issue before considering surgery. The pediatric team has ruled out that there are any issues with her airway. Today they ruled out that there is anything wrong with her lungs, but  Pulmonologists (lung doctor) would like her to undergo a sleep study for apnea.

There are two kinds of apnea. The"obstructive" sleep apnea common in adults is a result of there airway collapsing while they sleep. The "central" apnea the doctors will be looking for in Faith is different in that it is a result of the brain's control center sending the wrong signals regarding the carbon dioxide levels in her body. If this is the case, the problem could potentially be fixed by medication and no surgery would be required at this time. This study will be done sometime this week.

If the result of the study is that Faith does not have apnea and there are no other potential cause for the low oxygen levels, the neurosurgeon will then have to consider performing the decompression surgery. This surgery is the only way to medically assist in relieving the pressure off of her brain stem. The only other option is to send Faith home on oxygen and wait for her to grow. Her skull getting bigger might provide her brain stem the room it needs on its own. The neurosurgeon would then reassess her at a later time to see if the surgery would still be necessary.

Thanks for checking in.

Oh yeah and Im sure most of you are aching for some more here you go.

Wednesday, January 19, 2011

Test Test Test

Due to our lack of detail in our most recent posts, it might be helpful if I start from Monday to bring everyone up to speed. Bare with me, its been a long three days.


Faith had a scheduled well check at the pediatrician's office on Monday in Topeka. During the appointment the doctor was checking Faith out and she began twitch uncontrollably for about 1 to 2 minutes on the medical table (it looked like she was having a fall dream over and over, tensing her legs and arms repeatedly). After the episode was over Ashley asked "What was the that?" and the doctor replied "I think we just witnessed a mild seizure". He advised that we just keep an eye on Faith and call if it happened again. About two hours later Ashley was home and Faith began to twitch repeatedly again. Ashley called the pediatrician and was told to take Faith to Children's Mercy ER immediately to try to figure out the issue.

At the ER things went pretty smooth. She had several tests, described in the previous post, but no more episodes. We described the events of the day to about 100 different doctors and they eventually decided that Faith should be admitted for more testing to find out the problem. During the tests and the admission process the nurses began to notice that her blood/oxygen saturation (OS level) were dipping unusually low. We informed them that this was the typical even during our stay in the NICU. They thought it was something that should be investigated while we are here.


The days kind of run together so I'm not quite sure the sequence, but by the end of the day on Tuesday she had been through the following tests.

CAT scan - Ensure the ventricles in her brain are not enlarged. Everything looks great.
Blood test - Bacteria in her blood would be a sign that the shunt or one of her incisions were causing an infection. These results have been negative to date, but the testing results will not be final until Friday.

Newborn screen - This test is for a number of things, but they used it specifically to rule out issues with her thyroid.
EKG - Measures her heart rate and rhythm. There were no irregularities.

EEG - This measures her brain waves. There was nothing there to implicate seizures.

All the tests had come back with good results, but left us wondering what the episodes could be. In the afternoon the neurologist who had been reviewing our case visited Faith. After looking her test results over, especially the EEG, he ruled out any potential that the episodes were seizures. Praise the Lord! He ordered more tests for Wednesday and offered a couple of possibilities for the low OS levels. Gastroesophageal Reflux (like acid reflux for infants) could cause breathing issues resulting in low OS. Compression of the brain stem might also be the problem. He advised that we get an MRI (detailed scan of the brain) and have an occupational therapist observe her eat to see if she has any abnormal issues eating.

Tuesday was a long day of tests, but we were so glad to hear that she is not having seizures.


During the MRI today Faith's OS dropped, like it has been, and they had to stop to give her oxygen before the scan was complete. This is a one hour procedure which she has to either be sleeping or sedated for and she woke up during the oxygen supplementation. The neurosurgeon has requested that this test be done again (this is scheduled for tomorrow). However, there was enough information from the MRI that the neurologist has deducted that Faith has what is called a Chiari 2 Malformation. This is a condition commonly associated with Spina Bifida where the brain is pulled down in the scull. The pressure in this area could cause issues with vital functions such as breathing.
If you would like to do a little reading on the condition, I think this looks like a pretty good website.

While it is nice that we finally have a direction on something, the neurologist went on to explain that the only way to really fix this is a decompressioin surgery. This procedure involves removing bone to reduce the pressure on the cerebellum. The neurologist said it would be the neurosurgeons decision on weather or not this surgery should be performed. After speaking with other staff we have come to the understanding that it is highly unlikely that he will perform this surgery. There are no guarantees that the surgery would actually fix the problem and the surgery is considered pretty invasive. The neurosurgeon will have a better idea on weather this procedure will be necessary after the MRI tomorrow.

When we first arrived at the hospital Monday we were under the impression that we would be out of here after a night of observation and a few tests. After the events over last couple of day's I feel like there are no guarantees that we would be leaving tomorrow, but that's what we are hoping for. I guess we will see.

Sorry for the long blog, but a lot has happened over the last few days. If I wasn't clear on anything please comment and I will try to explain it better. It's hard to convey all we've learned over the last few days and not be confusing.

Thanks for your prayers.

Monday, January 17, 2011

ER visit update 1

Quick update.. We have met with several doctors. While they do seem concerned, the initial reaction is not one of urgency. They said that she will need to be readmitted and that they will begin testing for the several potential causes for the seizures. They have already performed a CAT scan, x-ray, and are in the process of doing blood work. Still to come urin test and another IV, most likely in her scalp again :(.

Our most recent visit was from a general surgeon. He reviewed the CAT scan and does not think that it is likely that the shunt is most likely unrelated. This is good because it means less potential for surgery. Now we wait for some of the other tests to come back.

Thanks for your prayers.

Please pray for faith

We are on our way right now to Childrens Mercy ER. Faith is having mild seizures and they want to check her shunt out to make sure its working. We will keep you posted. Thanks

Wednesday, January 12, 2011

The news we have been waiting on

Let's get to the point.....Faith is coming home tomorrow!!!!!

Monday, January 10, 2011

Busy Day

Even though we were snowed in, in Topeka our little Faith had a very busy day today!!  We spoke with the nurse a few times today and she told us that Faith is able to be on her back for one hour out of the 24 in a day.  They will be taking it slow for the pressure on her back.  The nurse says she loves being on her back.  I think Faith will soon "see" what she has been missing out on.  There is one spot on her back incision that they are keeping an eye on.  They will be placing an Ace Wrap on the incision to help it heal.

Faith had her hearing test early this morning and she passed in both ears!  PTL!  We were told sometimes, the side of the head with the shunt doesn't pass the hearing test.  So we were glad to hear she passed.

Faith had her kidney and bladder scan today and she passed that too!  She is on a roll!  I think she wants to come home and be with her real family instead of her family at Children's Mercy!  Her kidneys are on the right track for size and they found no kidney stones or any mass.

Tonight I received a call from Children's Mercy.  When I saw the number on the caller ID I won't lie I was worried.  But they were calling to tell me that Faith had switched rooms!  Since she is doing so well she now has a room with a TV, bathroom, shower, and even a place for one parent to sleep.  I guess you could say it probably looks like a real hospital room instead of being in the INCU pod. 

With all this snow I will have to see what the weather is like tomorrow to see if I am able to go up and see all the changes!  I really wanted to go today but I know it was better for my safety to stay home.  Hoping the weather is better tomorrow so we can go see her!

Sunday, January 9, 2011

Weekend Update

On Friday afternoon, the Physical Therapist came by and gave me lots of advice on how to help Faith build some muscle in her bottom.  She made a blue strap that goes around both of Faith's thighs.  This will help keep her hips mid line and build muscle in her bottom.  With no strap her legs look like a frog.  We are trying to prevent this from happening.  She doesn't mind the strap on.  The nurses have also started to do a few leg exercises with her.  They are also helping with the bottom muscles.

On Friday night, Mason and Elizabeth came up to see Faith one more time before Children Mercy shuts down the NICU to all siblings due to illness and the winter weather.  They both kissed Faith and said she was cute.   Mason asked "Can we take her home today?"  It is really hard for them to understand why she has to stay there when Mic and I talk about "When Faith gets home....".

On Saturday, the only news was they took out her IV out of her scalp!  The nurse said she seems to look like she is more comfortable.

Mic and I went up to see Faith today!  We had a great time seeing her.  One of Faith's doctors came by today while we were there and told us that tomorrow is the day for the kidney test.  This kidney test is to make sure they are functioning correctly, and a test to make sure her bladder is emptying all of the way.  The doctor also said she will be on her back for this!!  This is big news since she has NEVER been on her back.  They were also going to try to do the hearing test tomorrow, since we will be able to be on her back.  They will see how she does for the kidney test to see if she can handle it too.

We really want to go up to see her, and ask how all her tests went.  With the weather we think it will be best if we wait for a later date to go up. We will have to settle for a phone call update with her nurse to see how her testing went.

Thursday, January 6, 2011

Tuesday, January 4, 2011

The Last Couple of Days

On Monday I was at Faith's bedside when one of the plastic surgeons came by to check her back.  The plastic surgeon said it was looking wonderful and almost better then what they were expecting.  PTL!  During rounds several other doctor's came by and said all is looking really well.  Her head circumference is looking good.  We are wanting it to gradually go down, this will show us the shunt is working. Mimi came up to visit around lunch time and got to hold and feed Faith.  After lunch the neurologist came by and checked her shunt and said it is looking so good. It was a very active day.

We were missing our kids and Faith is doing so well, so we decide to take a day off from being at the hospital.  We came home on Monday night and got to play with our kids and put them in their own bed to sleep.  All day today we have been doing lots of catching up with them.  We didn't realize how much we missed them until we were with them.

Mic spoke with Faith's nurse over the phone today. She said Faith is eating more and more everyday.  She is now up to 2 oz every 3 hours.  The nurse said the physical therapist came by and made a "hip row" to put under Faith's tummy. This will help her to keep her knees tucked under her instead of her hips being spread open all the time while always being on her stomach  The other new thing in Faith's life is a new mattress called the Geo Matt, it is kind of like a memory foam mattress.

 Faith was going to have a hearing test today but the doctor decided to wait until later in the week when she can be on her back.  I guess they couldn't get the headphones on her head correctly with her having to stay on her belly.  Sounds like Faith will be having lots of testing toward the end of the week;  A hearing test, a kidney test to make sure they are functioning correctly, a test to make sure her bladder is emptying all of the way, and possibly a scan on her shunt to make sure all is looking well there too.  Sounds like we will be having a busy end of the week.

Sunday, January 2, 2011

Let's Eat

Sorry for the delay on the updates folks. I have been a little under the weather, so the blog got put on hold.

Things at Children's Mercy are going great! Faith decided to skip the tube feeding and went straight to the bottle. It is a little awkward for her to eat while laying on her tummy, but she doesn't seem to mind to much. The nurses said that Faith was so excited to eat the first couple of times that they had to take the bottle away so she would take a breath. She spends most of her time eating and sleeping, but while she is awake (typically right before her next bottle) she does a lot of stretching and grunting and even turning her head from one side to the other.

Today Faith's incubator was switched to a crib. She's well enough now that the heater and all the other monitoring equipment is no longer required. They are bundling her with blankets now which she seems to like quite a bit. Ashley got to hold Faith for the first time today. The nurses lifted her bedding out of the crib and on to Ashley's lap. Ashley fed Faith her bottle while she held her. They both seemed to like this quite a bit.