Week one report

It's been just over a week since Cameron came home to us! He is very mild tempered and really only cries when he change his diaper or if he's really hungry. Dad suggested we ask the pediatrician about how to change his diaper so he does not cry, I reminded Dad the poor guy just had some work done down there, and that crying is NORMAL.
Cameron sleeps, eats and poops, not much else - which is to be expected since in his book he should still be sleeping comfortably in mom's tummy.
We have made our way to two pediatrican appointments this week - Cameron is now just over 7lbs so we have officially taken him of the breast milk fortifer - which is a relief as it's one less process for mom and dad when making the bottles. His head circumference is at 38cm, upon discharge he was at 37cm. Maybe it's just wishful thinking but the fontanel seems to be consistent from when we discharged.
We have to admit there are times when we are quite overwhelmed, there is so much to stay on top of relative to Cameron's care and noone will care about him as much as we do. We are working on figuring out the Physical and Occupational Therapy system and what our next steps are. It's just very hard at times b/c you have to find a balance between enjoying the little guy and learning about all the various conditions to be sure we provide him with the best care possible. We had two trips to the pediatrician this past week and it's painfully obvious that we, as parents must be Cameron's advocates to ensure he is given the best chance for everything.
Wednesday is the big day for our trip to see the Neurosurgeon to check on the progress.
But it's not been all "business" this past week, Cameron went to his first BBQ on Saturday which he thoroughly enjoyed and a trip to the Lincoln Park Zoo with his friend Charlie.
Happy 4th Everyone !
xoxox Mom and Dad

I'm Free!

Cameron is now happily relaxing at home! We are so happy to have him here and Miller seems to like him just fine.
We got home just after 3pm on Friday and it's been good since his arrival, not much sleep but we'll take it any day to have him here with us.
Before we left the hosptial we met with all the important people and now have our long list of doctor appts over the next 3 months - Cameron will be logging a lot of car time that is for sure. It's hard to believe all the specialists we are going to need to be following up with and then add in PT, OT and various other things I often wondered how moms with healthy babies did all they do now I am really wondering how we'll manage all of this on top of learning how to care for a newborn at home. But we wil figure it out just as we have so far.
We are still crossing our fingers that the neurosurgery worked - right now it's up in the air as his head circumference is still increasing and the fontanel is filling up. We know all the warning signs to look for prior to our appt with Nuero should something happen that would bring us into see them.
We are holding out hope that another surgery is not near in his future, but recognize it could become a reality. For now we are trying to just enjoy having him at home.
oxoxo mom and dad

It's Official Cameron is Coming Home

Today just about every baby left from our room to go home, and after watching this happen repeatedly over the last 4 weeks it's about time Cameron got his walking papers.
Cameron Briggs will finally make his way into his real home Friday June 23rd! We are very excited, nervous, and frantically running around the house to get it all in order for the little guy.
He had a full day at the hospital today - the big Circ was done - aka circumcison and then he had a good 30 minutes with the developmental nurse, which does not sound like a long time but for this little guy it was.
We have a long list of follow up appointments, and I mean long, I think in total we have over 5 different specialists we will be seeing in the coming weeks and months. I hope Cameron likes the car!! But I don't care how many appointments we need to go to it will be great to get Cameron at home with us and away from the insanity of the NICU.
We are still closely monitoring his head, it has increased in circumference a bit and the fontanel seems to be a bit fuller but neurosurgery is not overly concerned at this point. He will meet with them on July 5th for a head ultrasound and check up. He will also get his stitches out then - they took the dressing off today and it's hard to look at the incision, so maybe we'll be wearing a lot of hats until the 5th!
Please keep the prayers going that the surgery is successful!!!
Hard to believe almost exactly a month since he was born he will be at home. It will be weird not spending every day and night at Children's but such a relief to get a way from all the monitors and cords - and to actually just hold Cameron without worrying about his leads coming off and the alarms ringing that his oxygen or heart rate has dropped will be such a sweet moment.
Hopefully we're ready for all of this, I know Mom and Dad are both very scared but we'll do the best we can, just as Cameron has! Thank you again to everyone for all of your support! xoxo Mom and Dad

Homecoming Maybe??

Well rumor has it Cameron might get to come home very soon!!! We are of course so excited with this news. Neurosurgery is calling him their little "Star". We talked at length with one of the nuerosurgeons on Monday and he explained in detail how well he was doing, calling him " a new baby" after surgery. We still need to wait out a full 2 weeks from Surgery to feel more confident that the procedure worked, but right now we can't help but be optimistic. As we all knew the Third Ventriculostomy has a 50/50 chance of working in children Cameron's age, and is not done very often compared to shunts. So this truly would be a miracle if it works.
He looks great and is a little piglet - they have now told us he can eat "ad lib" basically whenever he wants. He seems to like this, gulping it down so fast Mom struggles to get him to burp!
I inquired about all of the other obstacles Cameron is facing and how that impacts his discharge date. Given that they are all longer term issues that will be followed up on a regular basis with various specialists the kidney, heart, diaphragm and Dandy Walker should not prevent him from coming home very soon.
We are thinking by this weekend, which would be so wonderful!! Stay tuned...

Happy Father's Day

It's been a wonderful Father's Day Weekend - Cameron pulled out his feeding tube twice on Saturday in a symbol of "I'm done with this tube feeding" apparently. They have not had to put it back in as he has taken all feedings by mouth. This really is amazing considering he just had brain surgery on Thursday afternoon.
What a good sign this is!
He has not had any major complications thus far since the surgery- a few heart rate increases over 200 and a few drops in Oxygen but nothing that they tell us to be overly concerned with. And with him taking all feedings by mouth we feel very optimistic at this point.
He goes for another scan tomorrow and I'll be anxious to talk in detail with the Dr who performed his surgery to get his thoughts on Cameron's progress.
Today was a the race to support Children's Memorial we all had a great time. Our friends Courtney, Adam and their adorable son Hudson came all the way from Michigan to join in on the fun. Adam and Matt ran the race side by side, we're not sure who crossed the line first :). We really want to thank them so much for making the trip it meant so much for Matt to have a running partner! Courtney, Rory, Hudson, Nana and Granny Randi all made for a great cheering section.
Here are some photos of Cameron before surgery, on his way to surgery and after surgery -- and some race day photos.
Thank you again to everyone who so generously donated to sponsor Matt in the race we will never forget it!
Let's hope this week brings even more good news for our little fighter Cameron Briggs!! How can we not be strong when he sets such a good example. xoxo Mom and Dad

Surgery Report - June 15th

Cameron is such the fighter, he amazes us with his strength. He went down to surgery at noon and into the OR just before 1pm when we said our goodbyes. It was terrifying but he came out just great!
The Neurosurgeon did the Third Ventricularostomy - the preferred option vs the shunt, success rate is 50/50. The Dr would like to give it 2 weeks to determine if the surgery was successful. it's possible prior to that he would show signs that it's not working but we are hoping to get through the next two weeks just as well as he is doing now. His breathing tube was removed right after surgery and he's been doing great with breathing on his own - we really could not ask for more at this point.
Thanks for all the prayers and support - we are exhausted and we'll post more details and some photos tomorrrow. xoxo mom and dad

Bath Time and a new Crib

Cameron is officially at the desired surgery weight - 5lbs 9oz, we can't get over how quickly he gained the weight! But we are very pleased.
His umbilical cord finally gave way yesterday so he got to have a real bath today - they had us put him in a "sling" aka blanket as it is much more calming for them. He looked so happy sitting in the mini tub all wrapped up.
We wanted to take advantage of the bath time now b/c once he has the surgery it will be a while before he can enjoy another real bath.
Cameron was also moved to a open air crib on Monday and he's doing very well keeping his temperature.
We also had a chance to meet with one of the developmental specialists and after Cameron has fully recovered from surgery and is closer to term we will likely start some PT, OT and Speech therapy. But for now he is showing some good signs such as bringing his hands to his face and clasping his hands together.
Tomorrow evening we will meet with the neurosurgeon to review the surgery and answer all the last questions.

Packing on the pounds...

Cameron is growing like a weed - must be the calories they are adding to the breast milk! He is now 2.570 kilos which translates to 5lbs 6oz, so we are getting close to desired surgery weight which is good. He is now up to 50ccs per feeding and doing quite well at taking the bottle pretty often, I'd say half bottle, half in the feeding tube.
The head ultrasound on Thursday did not show any significant changes so that was encouraging, as his head circumference continues to grow and the fontanel is filling up with more fluid - you can easily tell by touching.
He will have another head ultrasound tomorrow - Monday to check the fluid levels.
Right now he is not showing any serious signs of stress (easily agitated, lethargic, throwing up) that would lead them to do the surgery prior to this Thursday.
He had lots of visitors this weekend, which we know he loved and we appreciate very much! When we left him this evening there was talk of moving him out of the isolette and into a crib - we'll see!
This will be a big week - we are very anxious about the surgery to say the least.
xoxo mom and dad

What a day...

So when we spoke to the Nurse late last night to check on Cameron we learned that they were planning to do the brain surgery THIS thursday - as in tomorrow, and they had pulled several rounds of lab work in preparation. I spoke with the Dr on call and he wasn't sure why the sudden change but suggested I come in early today to talk with the neurosurgeons when they round around 6:30am. So I arrived at 6am, but didn't get to speak with anyone until 10:30am! and learned that in fact the surgery is schedule for next Thursday the 15th. Should something drastic change with Cameron they will go in earlier. So apparently there was some miscommunication between last night and today. As we had heard on Monday they would like him to get closer to 2500 kilos which is about 5lbs 9oz - he is at 4lbs 14oz now I believe. The neurosurgeon talked with me in detail about the two surgery options and they will do another head ultrasound on Cameron tomorrow to check the fluid levels. So the 15th is the big day it appears.
His head circumfrence continues to grow and I can tell the soft spot is filling with more fluid, I feel so bad for Cameron and can't imagine doing brain surgery on a 3 week old baby. Cameron will go completely under and be intabated, I signed the consent forms today and the day prior to surgery we'll discuss the risks etc with anethesia.
We are hopeful the US tomorrow does not show even more of a fluid increase.

In other news the kindey ultrasound shows some dialation/swelling still so Cameron will stay on the antibiotics to prevent infection. The good news is there are no signs of serious issues with the kidney and it is functioning as it should. So the kidney will be added to the list of items for continued follow up, but not in need of immediate attention.
Our main concern at this point is the Hydrocephalus and Dandy Walker. It's amazing how things have moved up and down on the "issues" list so many times, this truly is a day by day situation. Every day a new piece of news and a new emotion for all of us to deal with. Thanks again to everyone for all their love and support for Cameron. The nurses all say he's the cutest in the NICU and we agree :) xoxo mom and dad PS - since Cameron can't enjoy his crib at home yet - Miller decided he would test it out! just a little something to make us smile.

June 5th - My First day in clothes...

Cameron came off of the bili (tanning) light, which meant he could actually get dressed in the first little preemie outfit we brought him. He looked very cute, and the nurse was so good to us helping him put it on and still keeping all of his monitors in place. It was a very long day for Mom and Nana who spent all day at the hospital waiting to hear from the neurosurgeon on the MRI - Dad made it over after work just in time to meet with the Dr. and unfortunately the news was not what we had hoped to hear. Cameron will need brain surgery to reduce the fluid levels and prevent them from growing. There are two surgery options the Dr is considering and he will not know until they get into the surgery which version they will go with - Option 1) Third Ventricularostomy Option 2) Shunt. The MRI shows a potential blockage (acquedoctal stenosis) which would lead them to option 1 - but it's hard to tell at this point. They would like to do the surgery this week, but Cameron needs to gain some more weight before he can undergo surgery. We hope to know tomorrow what the timing will be. The surgery will also give us a better idea of the Dandy Walker Variant situation. What the Hydrocephalus and Dandy Walker variant means for Cameron later in life is unknown, we will just have to wait and see. We'll be seeing a lot of the Neurosurgeon for years to come.
There was some good news, the VCUG (Kidney) test was done today and it did not show a reflux problem, so Cameron had a renal ultrasound to check on the swelling - we'll see what that shows tomorrow. Hopefully it's just something that can continue to be treated with antibiotics and watched.
So that's it for today, and that's enough! Please pray that the surgery goes well. xoxo mom and dad

Back to the incubator and tanning

Cameron is now back in the incubator (or isolette as they call it) and is tanning again! His bili levels have gone up and he looked very yellow on Friday. He clearly did not think he was tan enough for summer just yet! He is doing a good job of keeping his tempertaure when we take him out of the isolette so that is good sign. They say it will be a few more days on the lights and in the isolette.
Friday night he had his MRI it took 3 hours but he handled the sedation well. We are hoping to have the results today to determine next steps.
Mom and Dad spent all day Sunday with Cameron, feeding him and napping with him which was very nice. He is doing very well with his feedings up to 40ccs and we were able to get him to take the bottle from mom in the morning and Dad in the afternoon. xoxo Mom and Dad

Father's Day Race to Support CMH

We want to say a huge thank you to everyone who has donated to sponsor Dad in the @Properties Loop the Loop race to raise money for Children's. As you walk around Children's hospital everyday what we see amazes us, it is heartbreaking at times to think that many of these children have spent the bulk of their young lives in the hospital. The care Cameron and the many other children are receiving is top notch.

We are truly amazed at the genorosity and support from everyone, we are so fortunate to have such wonderful family and friends. Dad has been training hard for many months in preparation for half marathons and the Chicago Marathon. Although this 5K will likely mean the most...we hope to see some of you out there on June 18th running or cheering him across the finish line. Below are the details on the race and sponsorship. Thank you to everyone who's donated and comes to support him on June 18th it means so much to us!
xoxo Mom and Dad
Dear friend,

On June 18, 2006 I will participate in the @properties Loop the Loop for Kids Father's Day 5K to raise money for the patients and families at Children's Memorial Hospital. My son Cameron is currently being treated at CMH for various issues. I wanted to participate in this event to give back to the hospital that is working towards the day we could bring Cameron home.

Please join in my efforts and help me support this special cause. You can make a difference in a child's life by helping me reach my fundraising goal of $1,000.00.

Thank you for your consideration and support, Matthew Dominick

To support me with a donation, click on the link below or copy it into your browser.

https://secure.childrensmemorial.org/loop/donations/donate.asp?ID=966

Last night Cameron graduated to a crib out of the heated "bed", Mom and Dad were very excited! Unfortunately when Mom arrived at the hosptial today Cameron was no longer in his bed, some other baby was - after a brief moment of panic it turns out Cameron was moved next door - why I still don't know. But he is now in an incubator, as he could not hold his body temp on his own. So no more long cuddle sessions with Cameron for a while.
I had a chance to speak with the Nuerosurgeon today to discuss the comparison of the head ultrasound from earlier this week with the one from last week - unfortunately the fluid levels have increased, so we need to get the MRI done now. Cameron is scheduled for the MRI tomorrow - they'll need to sedate him to ensure he stays still. The MRI will tell us more about the amount of fluid, location and more. It will also give us a better idea of what the status is regarding his cerebellum and the potential Dandy Walker Syndrome or Variant. While we figured he would need an MRI before discharge, we really were hoping the ultrasound would have remained consistent from last week. We'll have to see what the results show and just take it day by day, and wait to determine when the surgery would be done to control the fluid.

Cameron is gradually increasing his feedings he is now up to 35ccs - but he gets pretty tired so today they decided to put the feeding tube back in to ensure he gets all the food. He took about 15ccs from me in the bottle today, so we're half way there. They tell me this is by no means a set back, it was actually quite impressive that he was taking from the bottle in general.

Given that the MRI is now priority #1, the VCUG for his kidney will likely not be done until Monday - he's on antibiotics to temper the swelling so that is good for now and they tell me it's highly unlikely the findings of the test will require surgery. But I'm not going to talk about the options for treatment until I know the diagnosis as things seem to change by the moment.
So it was a full day with new information, not all good and not all bad. xoxo mom and dad