22 Chambers

I cannot believe my baby girl is turning one year old.  I honestly cannot believe she fought through all of the crap she had to deal with in just her first year of life.  She is a fighter and a hero and a true testament to our faith. She has taught us so much and brought us to a wonderful place.  Physically, we moved to Arlington Heights because of her to be closer to family and the hospital, but also a place where we have peace.  I have always been so terrified of death.  To think of loosing my husband, my mother, a sister, a friend or God for bid, one of my children, made me sick to my stomach.  I couldn’t comprehend someone that I love so deeply to leave me or to face that I may leave my children behind.  But, after reading and praying and witnessing children leave this world, I have been confronted with death like a boxer meeting his opponent’s glove.  And the reality is that Gabi may not live to her next birthday or may not live to see her parents tear up when she graduates from college, but I think I have come to terms with that.  I truly believe there is a better place and that this life is preparation for our eternal life.  We are all destined to an eternal life with no pain, no war, no anger. Just love. Now that’s comforting and I thank Gabi for teaching me that.

On that note…Gabi is turning one and IT’S  TIME  TO  PARTEE!

You all know the time and location from the evite.

• There are lots of picnic tables, but you may want to bring a lawn chair or 2 and/or a picnic blanket for the kids to sit and eat

• There will be 2 pinatas for the kids, 2 moonwalks, a kickball tournament, water balloons (depending on the weather), lots and lots of food!!, and bags for the adults.

• There is a built in shelter and we will have a canopy tent also up.

• There are bathrooms there.

• The raindate is Sunday, June 6th. Check the blog the night before, Friday to see if we will be using the rain date.

Ronald McDonald info

We will be collecting items for the Ronald McDonald House in Milwaukee. As most of you know, we spent 6 months there and they never expected a penny from us.  Dinners were provided almost every night from the community, volunteers ran the house, and all of the families there were suffering.  This charity helps so many families in most often the toughest times of their lives.

Please consider making a donation.

We will be happy to take cash or checks made out to RMH. Even $5 or $10 makes a difference.

The list below is taken from the RMH website

Thank you for thinking of the children and families who stay at the Ronald McDonald House during this difficult time in their life… you truly make a difference for them. Our families, some 1,200 each year, are facing unimaginable stress… their child is seriously ill, and their lives are turned upside down. We may just be the only bright spot in their entire day and we take that responsibility to heart! We are a home where kids can just be kids, away from hospitals and doctors and treatments… and parents can lean on each other. Note: All Donations MUST be NEW and in the original packaging. Special Wishes Magnetic Free-Standing Dry Erase Board Microsoft Office PC Complete Button Maker System Projecta-Theater-Lite 80″ Portable Projector Screen Powerful, Rechargable Flashlight Casio-Super Slim XGA DLP Projector Canon 8×25 IS COmpact Image Stabalized Binoculars 7562A002 40″ Samsung LCD HDTV (LN40B630) Gift Cards to Brookfield Auto Care and Scrub-A-Dub for van maintenance Special Baby Items Look up our registry at USA Baby. Simply enter “Ronald” for the first name and “McDOnald” for the last name. We have registered for Carter’s crib sheets, Peg Perego High Chairs, and a Britax car seat. Food Items Greatest Need: Individually Wrapped Snacks: Nabisco Snack Packs, Granola Bars, Fruit Snacks, Sandwich Cracker Snack Packs, Cookies and Chips (great Grab N’ Go items for our families going to the hospital) Juice Boxes (100% juice) Frozen Pizzas Household Items Antibacterial/Disinfecting Wipes Ziploc Baggies White Wash Cloths Dish Detergent Kleenex 22 oz. Sugar and Creamer – NJoy Brand Splenda & Sweet N’ Low AA Batteries D Batteries Flashlights Postage Stamps (.44) Black Sharpies (not ultra fine) Dry Erasers Dish Scrubbers (Non-Stick Safe) Tea Bags Lemon Pledge Paper Towels Baking Soda Rubber Door Wedges LED Night Lights (auto on/off) Aluminum Foil Shower Caddies (hang over shower head) Gift Certificates Target Best Buy Pick N’ Save Please Consider Using Our Registries For a complete list of items the House needs on a regular basis, we have registered at Target stores (www.target.com) through their Club Wedd, Baby Registry and Target Lists. In addition, we are registered at Pottery Barn Kids (www.potterybarnkids.com). For registries simply enter “Ronald” for the first name, “McDonald” for the last name and “WI” for the state. For Target lists search by organization and enter “Ronald McDonald House.”

Toy ideas

• I did speak to a volunteer at the house and she said because of limited storage, they are well stocked and DO NOT NEED board games and art supplies.

• They have lots of boy things but are looking for girl things for ages 0-17, except barbie, they have lots of barbies.

Ideas of what are needed:

• Dolls
• Baby toys
• My little pet shop toys
• My little Pony
• itunes gift cards for the forgotten about teenage kids

We can’t wait to see everyone at the party and if you cannot make it, we thank you for all of your support this past year!

Love,

Teri

Gabi is doing great! She is getting stronger everyday.  Tomorrow is the fees scope which will look at her vocal chords.  They put a tiny camera down her throat through her nose.  Poor thing.  I am kind of hoping this is the issue because they can help with this. If there is damage to the vocal chords, all she might need is an injection of cortisone to bulk up that paralyzed or damaged vocal chord to help it to do its job.  This could potentially help the puking, help with her tremendous speech delay and God willing help with the eating thing and the refluxing.

If the problem is not the vocal chords, then they will proceed to do a swallow study to see what is going on down through the esophagus and lower GI trac.

Gabi is doing great!  She is still vomiting and refluxing like crazy, but overall she is doing great.

She is now sitting up on her own, she has 5 teeth and can now actually play on her tummy for a few minutes.  Her face is planted into the floor because she has no strength in her pectoral muscles to push herself up but she’ll get there.  At least she isn’t screaming now anymore with tummy time.  As she gets stronger and reaches these milestones, we are hoping that this will help with her overall feeding and vomitting issues.  The GI doc explained that because her develpmental level is just barely reaching 6 months and 6 months is when the reflux peaks in most babies, we are hoping the worst is behind us (please knock on wood now).

The appt last week was extremely frustrating, but I have calmed down about it now.  I thought they were going to run tests and “fix” her, but we sat down, all 8 of us (a speech team, OT, GI nurses, dietician and the doc) and they watched her eat, or try to, and assessed that they don’t think her problems are just relux.  They think her vocal chords are damaged from all of her heart sugeries.  My face must have turned beat red because they asked me if I was OK and I said no.  I explained to them I had pushed for the speech team to do the scope of her vocal chords months ago but they said they were confident that the vocal chords were fine.

So, they had to wait to do the swallow study until after the scope.  So, this test will be on May 20th.  I pushed for a sonner appt, but alas, they couldn’t get her in. This is both good and bad.  Good because it shows that she is now not critical enough for them to get an immediate appt like we are used to, but bad because we have to wait.

In the meantime, they had me try her on a new formula, pregestimil, which has been horrible.  She got awful diarrhea and was throwing up even more. So, I am supposed to be sticking this new formula out for 2 weeks, but guess what?  Yes, against docs orders, she is back on Enfamil and back to her “normal”.

We are planning her first birthday and as I look back on this year, it seems so surreal.  We are so blessed. So very blessed to be able to still hold Gabi tight and watch her accomplish milestones that I completely had taken for granted in the past.  Every minute with her is a gift. The truth is, we have no idea how long she is going to live. I am just cherishing every moment with her that I can.

Happy Mothers Day to all.  I have friends that have lost their mother this year, lost their child this year, watch their children suffer, and some have been blessed with another child.  Find the blessing in whatever you are given.  There is a blessing somewhere….always.

Love,

Teri

Gabrielle is doing really well.  She is still refluxing and puking, but she has been happy and getting stronger.  She now actually pushes up with her feet just the slightest little bit when you hold her in a standing position.  Normally she tucks her legs up all the time protecting her torso from any pain.  Stretching out the G tube area can be uncomfortable and sometimes painful for them so she protects herself as best she can. She still adamantly dislikes being on her tummy for the same reasons she tucks her knees up.  But the therapists force her to do be on her tummy and she is showing slight signs of improvement.

Her eating is still non existant orally, but we are working on it.  We have the feeding team appt this Wednesday to hopefully get this reflux under control. We asked about the fundiplication procedure, which is a surgical procedure (fairly simple) to fix the reflux, but all the doctors agreed that that would be a last resort and they would want to wait until she was at least a year old. She is happy to have the food in her mouth and actually laughs and enjoys the tastes but when it comes to swallowing, the food just sits in her mouth and drools out. She is just so afraid to swallow anything.  Poor thing.

I am anxious to see what the feeding team has to say about everything.  At least Dr. Rao covered his bases and we know these problems are not due to cardiac failure.

Ethan and I were reflecting on this past year this morning.  Last year this time, we were coping with the fact that we were going to have a sick child and that she may not live.  we were also packing up our house and moving 60 miles to be closer to the hospital, family and Ethan’s new job.  As we are planning Gabi’s upcoming first birthday, I was looking through pictures that I haven’t looked at in a almost a year, when she was on ECMO and had her chest wide open.  Feels like it didn’t even happen. That couldn’t have been my child, that couldn’t have been us.  But it was and it feels so surreal.

So much good has come out of her life so far; I can’t even imagine what else God has planned for her.

Love,

Teri

Quick summary. Gabi is doing MUCH better today.  We canceled the neurosurgery appt because we/they decided she was feeling better and if the shunt was malfunctioning she certainly wouldn’t be getting better.

Dr. Rao was thrilled with how she looked from a cardiovascular standpoint.  Her BNP number (which measures the amount of heart failure) was down to 240!  A normal person would be under 25, but around 200 is great for her. This means her heart is getting smaller and reshaping itself after the Glenn , exactly what it is supposed to do.

Meds were all held steady until we can get a good feed plan going.  He was OK with the changes I made and we will go with the plan I have come up with to see if she still gains weight and stays hydrated.  The dietician wanted us to add a few ounces of pedialyte a day just to make sure she is getting enough fluid.  If we cannot find a good plan in a few weeks, Dr. Rao suggested we admit her so they can watch her round the clock and figure out what to do for her.

In the meantime, we are enjoying her smiles once again and able to relax for the moment as we know her shunt is OK.

Thanks for all the support and hope everyone had a wonderful Easter!

Love,
Teri

I hope everyone is having a blessed Easter today.  Gabi is having a rough few days. I spoke with the neurosurgeon yesterday (sat) after she has been lethergic and throwing up more often than usual.  Wed and Thurs she was throwing up at a rampant rate then on Fri the vomitting slowed, but she has been sleepy. Really sleepy. She is fighting another cold, so we aren’t sure whether or not these are symptoms of the cold, or whether or not her VP shunt is malfunctioning. The neurosurgeon on call told me to sit tight and watch for any redness on the shunt site, fevers, or her head swelling up/fontanell looking full.  Since we have a cardiology appt tomorrow anyway, we are just trying to enjoy our Easter then head up there and probably get a CAT scan of her head while we are there.  We were told to call at 8 am tomorrow so neurosurgery can find a time to see her. I just love CHW!

We are trying not to freak out but it is difficult not too.  I will update tomorrow afternoon.

Thanks and Happy Easter!

Love,

Teri

Wow. thank you guys for your support.  Yesterday Gabi woke up with a slight fever and a cold.  I dont’ know if that is what has been bothering her few the past few nights, but even though her sats are a little lower, in the mid 70′s, I think she is doing OK.  She was still up last night at least 4 times, but I like it when there is at least an explanation…I knew she just didn’t feel good.

I reread my post yesterday and it would seem to a new reader that I am going through this myself.  I selfishly forgot to mention how absolutely wonderful my husband Ethan is!  I would not be able to get through ANY of this without him.  He is struggling too, but we deal with this in different ways (as men and women often do) and we pick each other up every day.  He is there in the middle of the night taking his turn with Gabi walking with her and consoling her.  I tell him that he needs to get up and go to work and look and act presentable and maybe put a thought together…where as I can stay in my pjs all day if I need to.  But he still gets up to relieve me when he knows I just need an hour of sleep. I couldn’t have chosen a better partner!

I am feeling better today and with this weather, who could be down?

Love,

Teri

What to say what to say…

Sorry for the lack of posts.  I have been struggling. I am completely overwhelmed with the therapies, the no sleep, the puking, the gagging, the feeding regimens, the meds, the doc appts…not to mention the other 3 kids.

I didn’t want to be negative on here so I just avoided posting instead.  But the more I think about it, you all carried us through this past year so I shouldn’t shut people out.

Here is a summary:

Ear infections are gone. She is off the antibiotic but boy that messed up her digestion even more.  She was refluxing something fierce.

Therapies are going.  She is progressing very slowly.  Very slowly. And now that everyone is out in this beautiful warm weather, there are babies coming out of the woodwork and she appears to be more behind than the 3 month olds that I have seen.

As we enter into this Holy Week, I am still challenged and settling with all that has happened this past year.  As the Spring air gets warmer each day and the sun shines on a more continued basis here in crazy Chicagoland, I KNOW and believe how grateful we are that Gabi is here with us everyday…she is alive and sleeping beside me each night.  For that, I am so gratfeul.

Gabi is up crying on average 5 times a night.  She is still puking, refluxing and although she is progressing with her therapies, it is extremely slow.

We have a cardiology appt next Monday with Dr. Rao and our feeding clinic appt is on April 28th.

Double ear infection!  Awesome. She is in Amoxicilin and we are hoping she still does not have a high tolerance for antibiotics since she has been on them basically the first  years of her life.  We are thankful she didn’t have to be admitted to the hospital for the cold and infection.  I have been checking her sats and they are holding steady at about 83-84 which is great for her!

Dr. Rao said it would be OK to give her another month on the clonodine patch, so her puking is somewhat under control.  We are down to about 4-5 times a day instead of every hour.  She is still up a lot at night crying but I am sure that is due to the ear infection.  The GI doc was disappointed that I didn’t stick out the 2 weeks on the special formula, but she has done MUCH better back on the Enfamil, so that she will stay on.

Other than that, happy happy baby and the therapies are in full force.  She actually holds a baby cookie and gnaws on it.  And is making good progress with her eating.  She is still not sitting up yet, but she is certainly getting stronger.

We are loving this spring weather and just loving seeing our wonderful neighborhood out and about again.  Still trying to figure out what this “normal” life is, trying not to be afraid, and just trying to enjoy Gabi and the kids because I have to remind myself everyday that we are so very blessed!

2 kiddos to keep in your prayers from the CICU.  Elizabeth and Emma.
elizabethbrianne.com
www.caringbridge.org/visit/wolfekids

Love,

Teri

It has been way too long since I last updated. So sorry.

Gabi had a horrible week last week but so far these past few days she is doing better.  Last Monday, we had an appointment at CHW with our new GI doc.  They couldn’t quite grasp how bad Gabi’s feedings were and treated me like I was wasting their time.  Pretty upsetting, but I didn’t care, I pushed through and insisted they listen to me. He had a number of suggestions as to why she was so miserable. Listed are the possibilities in order from least severe to most severe.

1. An allergy to the Enfamil formula she is on.
2. Her G tube placement could be hitting a nerve in or around her stomach
3. Her stomach is not draining efficiently into her intestines (she already had 2 upper GI tests done and this proved to be normal)
4. There could be a blockage in her intestines (but because she is not throwing up bile, this is highly unlikely)
5. During her heart surgeries, a large nerve might have been damaged that is connected to both the heart and stomach (this would be the worst of all the possibilities)

So- we started with #1 and he switched the formula to nutramigen. It is made by Enfamil and is pre-digested where the proteins are broken down. I had high hopes.  After about 10 hours on the new formula (which by the way is $30 for a small can!!), the diarrhea set in.  She was pooping every hour with a runny snotty poop. And we all know what happens with diarrhea, sore butt and dehydration.  And the gagging and puking had not slowed, if anything it was worse. I called Dr. GI the next day to let him know what was going on.  Gabi had been literally crying for 24 hours straight.  He seemed to be surprised by this reaction. Apparently, he has never heard of diarrhea as an outcome from this kind of formula. He thought maybe she coincidentally had a virus at the same time.  He wanted to stick to this new food for 2 weeks and then make another move.  I gave it till Friday, 5 days.

The diarrhea lasted all week and signs of dehydration and extreme fatigue (both Gabi and me) set in. I called again on Friday and they insisted that this formula cannot cause diarrhea.  Well, motherly instincts told me otherwise and I switched her back to Enfamil. Wouldn’t you know it?  After about 12 hours, the diarrhea stopped and her butt is now finally healing  up.

I don’t know if you remember the trials of trying to wean down the clonodine patch also.  Well, she was down to a half a patch and i wondered if that had anything to do with all these feeding issues.  We had the auction dinner this past Saturday and I was exhausted and so was Gabi. I made the decision ( I’ll admit  it was a lot selfish on my part) to put the full transdermal patch back on.  We both just needed a nights sleep.

Shazam!  (who says that??) she slept that night from 8 pm to 5 am!!  She has NEVER done that.  Never. It has been 3 days now back on the full patch and back to Enfamil and she is the happiest baby!  She hadn’t smiled in over 3 weeks, now she is laughing and talking again.

Unfortuantely, now back to the work week and I am dealing with the docs upset with me for making those decisions.  The nurses both told me that they would get back to me with a new plan.  I did ask a while back if keeping the clonodine patch on would harm her and the cardiologists said no, it is just a dependency thing at this point.  Let me tell you, if that is what she needs right now, then I am going to insist to please let her get what she needs.  It’s a quality of life issue at this point, in my opinion. I don’t think anything is anatomically wrong with her and I don’t think her G tube is misplaced either.  I think she just needs this patch until she can get moving more and eating some food.

Therapies are going really well and really helping to get Gabi moving. She is still not sitting up but she is getting close. She still has torticollis ( tightening in her neck muscles) on her right side.  Our PT is working on tummy time, turning her head to her right, and getting her hip muscles extended in a superman position, all of which she cries and cries and complains complains.  I can see the tip of her nose turn blue when she gets upset and to someone that doesn’t know her, you would think she wasn’t that upset, but she doesn’t have the stamina to cry any harder.  And PT said that on her tummy, it is really hard for her to breathe because she is fighting her weight on top of her lungs, so it is probably really scary for her. Kind of was sad for me to hear. Sometimes, I think she is on her way to being a normal baby, but hearing this was a reminder that she will always be sick.

OT is going well. She is using her hands more for a purpose and finding her feet.  She still will not put any pressure on her feet when you hold her in a standing position. But we’ll get there.

Speech is hilarious. We are working on getting her tastes of rice cereal, applesause and bananas.  I bought her one of those Nuby sippy cups with the soft spout and she loves to chew on that getting literally half a drop of formula in the mouth and then promptly gagging.  She enjoys the tastes of things but just isn’t getting the hang of that swallowing concept.  We’ll get there.

The Wings of Angels dinner auction was a HUGE success. It was an incredible honor for Carsyn and I am so proud of my dear friends Chris and Michelle for organizing the event.  They raised $32,000 for the the hospital!  Unbelievable. Not to mention, it was a blast to see our heart families that have instantly become dear friends. To see the docs and nurses outside of the hospital was something really special.  When I met Dr. Hagen’s wife, I got really emotional.  Because I know to the doctor’s family, they sacrifice a lot of time without their spouse at home, but that time spent away from home saved my daughter’s life. They are amazing people and to see them “as normal people” was an honor.  And to meet their supportive families means so much.

And of course, the nurses and Jenni and Jackie all know how much we love them. Here’s a few pictures.

We are having much better days this week and the sun is actually shining at the moment and spring is almost here!!  To quote Marissa, Wahoo!

Love,

Teri