Week Six

Injection #4 was 10 ml, for a grand total of 31.5 ml. 

It is a guarantee that every Tuesday morning as I am making the drive to Gillette Children's in St. Paul, I will get anxious. And just as I am certain of this, I can also guarantee that Phillip Phillips will, at some point, grace his voice across the radio waves, telling me...

Settle down, it'll all be clear. Don't pay no mind to the demons, they fill you with fear. The trouble, it might drag you down. If you get lost, you can always be found. Just know you're not alone, 'cause I'm going to make this place your home.

And then I do the Ooooooh, ooohoooh, ooh ooh ooh ooh and Carter asks me to stop singing. 

We visit the 4th floor of Children's every week, the same floor that I carried my baby girl onto when this all began. We see the same doctors and nurses, have mini-therapy sessions with these doctors and nurses, and they're making our girl BETTER. It is not a scary place anymore. It is safe.

It is home, Phillip Phillips. 

Week Five

When we initially began this process, MONTHS ago and weeks up until October 15, everyone and everything said the same thing: 8 weeks. So, I braced myself and prepared mentally, physically, and emotionally for 2 months of tissue expansion--and all that it entails. 5 weeks into this medical marathon and the finish line keeps getting pushed back further...and further. 

And maybe a marathon isn't the best comparison, because I envision smooth pavement, no obstacles or hurdles, and supportive running shoes. Most of the time, I feel like I'm juggling two babies in high heels through the desert. Like when I got the invoice from last week's injection that went something like this-- Blah Blah Blah, 250 ml expander. Earlier I thought Kendall's expander held 70 ml. Nope, 250. There were no running shoes or smooth pavement on that day, I tell ya.

Kendall received her 3rd injection this morning, a total of 7.5 ml and a grand total of 21.5 ml. 

The nurses said they were concerned with her two front corners being so "jagged" (vs. smooth) and that it is possible for the expander to puncture through the skin, which is why they are putting in such small amounts right now. The expander puncturing would mean emergency surgery to remove the expander right away, plus having to repeat the expansion process. This gave me a new perspective on my negative attitude of the timeline, seeing that she is HEALTHY, everything is looking GREAT, no infections, Kendall is handling each injection WONDERFULLY and the hospital staff is FABULOUS--I really have nothing to complain about. I would much rather everything take longer and be done safely and correctly than to try and rush things just to be done. 

Slow and steady wins the race. 

Last week, in a moment of frustration, I told Tony I wish this wasn't happening to her, I wish it was happening to me! He said,it is happening to you.

The timing is fitting as we are entering into a season of FAITH and HOPE and PEACE--the three things that I need the most right now. And perhaps the three things that I am learning the most about. Thanks for reading and thanks for supporting.

Week Four

FOUR weeks in and TWO injections down! They put in another 7 ml for a total of 14 ml.

Kendall did GREAT! I had both kids with me by myself this time and they were both awesome. Carter distracted Kendall by blowing bubbles with one of the nurses and she didn't even notice anything was going on! 

Some of you have asked what this process entails, so let me explain...

First, I numb the port with some heavy-duty prescription numbing cream right as we leave for the hospital. The nurse cleans the port, then sticks a rather large needle into it. The needle is connected to a syringe by a long tube that carries the saline. She holds the syringe up like an IV and dispenses small amounts at a time. While she is doing this, the other head nurse is pushing on Kendall expander to see how much it can hold, how it is shaping, and to make sure she can handle the amount of pressure. They usually stop at 5 ml, then say okay one more. Then one more--okay that's good. The amounts will vary and hopefully increase each week. 

The nurse explained that they are creating a pregnant belly on Kendall's head--modern medicine is amazing, yet very strange :) 

I think when challenges arise, we have two options: be bitter or get better. I know that God is teaching me patience and compassion in ways that are making me a better mom and stronger person. And although young, I know Kendall will be tougher having gone through this experience. 

 

Week Three

One injection down!

They injected 7 ml of saline this round, but fluid amounts will slowly increase each week. Kendall screamed when they inserted the needle into her port (having more to do with us holding her down tightly), but was quickly back to herself once they were finished.

We have injections booked for the next seven Tuesdays--at which point, Dr. Wood, Tony, and myself will assess how progress is going. The biggest concern is expanding enough to cut out and cover the mole in one procedure and not having to do this all over again--which would not be fun for anyone! Tony often reminds me that it has to get bigger for her to get better. And truly, the bigger the better.

When I asked about the time frame, Dr. Wood told me there is none. I envision myself with boxing gloves, listening to Rocky and chanting ENDURANCE over and over :) 

I can't say enough good things about Gillette Children's--they have made this process smoother and easier in every way possible. We feel really good about everything that is happening and knowing that Kendall is receiving the best care. 

The first time we met with Dr. Wood, he told us a two things: 1. tissue expansion is your only option and 2. 9-10 months is the best age to do it. I know many others struggle with medical decisions of what to do? or when to do it? and for us, much of the "burden" of this with Kendall is lifted off-- knowing that two of the hardest decisions have been made for us. There is no "we should have done this..." or "we should have waited..." 

I'm not gonna lie and say this process is easy for any of us--we are taking it week-by-week. It's a marathon, not a sprint, so I'm reminding myself to take deep breaths and stay strong for the long haul.

Week Two

These past two weeks have gone by quickly and we're ready to get this process started!

Kendall has her first post-surgery exam and injection on Tuesday morning and I really have no idea what kind of reaction to expect out of her. 

I have much less anxiety about the expansion process, however, I realize that she has many back-to-back injections coming up and that her head will be changing shape every week.  

Most research on this procedure tells me the same thing--it is much harder on the parents than the child. 

Kendall has no idea what's going on and I wouldn't want it any other way.

Just look at those gorgeous deep-blue eyes...

Week One

Kendall is doing significantly better each day--they told us 7-10 days before she returns to normal.

Just a few more updates from the rest of our week:

The swelling moved into her face this week, causing her right eye to almost completely shut. Thankfully, swelling has gone down and she no longer looks like a boxer!

The expander is very lumpy and jagged--the doctors assured us that it is not painful for her, the only thing she feels is the pressure. The port and tube/cord that connects it to the expander are now very visible-- I will be applying numbing cream to the port before her weekly injection appointments so she will not feel the pain of the needle.

She is off all other medications besides Tylenol.

Each child has a 1/20,000 chance of being born with a large congenital nevus (giant nevus is 1/500,000). It has nothing to do with genetics, so my kids were at no greater/lesser risk than any others. 

We are VERY lucky that hers is contained to one spot, as many children have them scattered--covering their face or entire lower back. Because of the size of her mole and the dark color (which is a major concern), she would have a 1-10% chance of it turning into cancer. 

They told us the best way to describe the expander is like a breast implant. Adding some comic relief, Tony refers to Kendall's procedure as "breast implant gone wrong" :)

The Beginning of the End

On Monday, I talked to two people--my brother and sister-in-law Jana. I told them I wanted to take my family and lock them up in my house for the next 3 months, that I wasn't strong enough to face this, that I couldn't handle seeing Kendall in so much pain, that I wanted to give up.

I was not in a good place.

We arrived at Gillette Children's at 7:30 am Monday morning. We were immediately brought back into a preop room where a constant stream of nurses and hospital staff prepped Kendall for surgery. I had mentally prepared myself for this day since we found out at her 6-week appointment that this procedure would take place--and I was, at the moment, proud of myself for handling it so well. The idea of this procedure was easy--removing the mole. The reality would be much more complicated.

The anesthesiologist team came to take Kendall back and there were no tears--in fact, I was anxious and excited to get this process started for her. After 45 minutes, Dr. Wood came in and told us everything went well, that Kendall was in post op and we could be with her in another 30 minutes.

Best news all day and a huge sigh of relief.

We waited in the pre-op room before being escorted to post-op to be with Kendall. Shortly before, Tony had told me to prepare myself for what she would look like. I've got this, I told myself. She's out of surgery, things went well, I've totally got this handled.

As we walked into post-op, I heard muffled moans and whimpers coming from my baby. Behind the curtain were three nurses, one of whom was holding Kendall-- hooked up to every machine imaginable. The nurse smiled and told me Kendall wanted her mommy.

I sat down and they put her in my arms. Then I lost it.

She was swollen, her eyes were puffy, she was conscious but making strange movements and not herself. Then there was the expander on her head--it looked like they had put a digital camera underneath her skin. It was huge, it was swollen, and I was terrified.

I couldn't let go of her and I cried--and cried--and cried. I'm sure Tony was in somewhat of shock as well, but being the great husband that he is, coached me through this process telling me she wants her mommy, she needs her mommy now, be strong for her.

But I felt so weak. The three nurses standing around us were giving me sweet, empathetic smiles and all I wanted to say to them was what have you done to my baby girl?! I wanted to go back to the preop room where I wasn't scared and had it together, or the night before when I held my sweet girl before bed and she looked like herself. I didn't want to do this anymore.

Soon it was time for her to go to her room, but I was afraid to put her down. I carried her through the halls, up the elevator, and into the post-surgery wing on the 4th floor, the nurse and Tony pushing the bed with her IV and cords.

We got situated in the room and reality set in.

I'm sure all the nurses coming and going must have been telling each other that mom s really losing it. I wish I could say they were wrong, but they weren't. I would have stayed away from me if I could have.

Tony soon took over holding Kendall and I watched as he rocked his girl to sleep, talking and smiling at her, consoling her moans and cries, never once giving attention to the obvious--just being a proud, loving father. And I felt relief and love as I watched him be strong for both of us when I couldn't.

I will spare you the hour-to-hour details of the rest of our day, but let's just say it was an awakening for me.

My baby girl looks different now and I was overwhelmed with the reality of this process. I was angry. I was sad. And I needed to go through my own process of grieving before I could reach acceptance and move on.

When I walked the halls to go outside and make the phone calls to my brother and Jana, I passed by a boy Carter's age pushing himself in a wheelchair. I also passed by little ones recovering from cleft palate surgery, spinal surgery from cerebral palsy, among other things.

And I felt guilty for being upset about our situation, because our situation is so small and temporary compared to what so many other children and parents go through. Realizing that other moms would love to have my problems made my self-pity slowly fade away.

Tony kept reassuring me, this is the beginning of the end.We are doing this for her health and well-being and six months from now, we will be in a difference place. This is not for us, it is for HER.

That first night was the hardest. Nurses came in every hour to take her temp, check vitals, administer medication, check fluid levels, etc. Kendall had to sleep up-right in her crib to reduce head swelling and had wires and cords everywhere that she wanted to pull on. We wedged her in with blankets, then I swaddled her in with their warming blankets to keep her snug.

I'd start to fall asleep, then the worry or self-pity would set in. I prayed for peace, for strength, and that God would take my misery and help me turn it into something positive.

On Tuesday, when Kendall was un-hooked from everything, I walked the halls with her and was overcome with a sense of pride and joy. All the nurses stopped to say hi and told me what a doll she was--we passed other parents and exchanged looks of I know what you're going through, we can do this. The hospital was a safe place--free of worldly stereotypes of what makes your child look "pretty" and where people looked into my girl's eyes and not at her head.

It was empowering. And I needed to shed my fear of judgement from others--along with judgement from myself.

I know the outside world may not be sensitive or understanding of Kendall's situation, but part of the reason we decided to start this process when she was young was so she wouldn't remember any of it. Tony told me weeks ago, you are bearing this burden for her so she doesn't have to. And he was right. I will endure the starring, strange looks, and endless questions so she wont have to.

Kendall's tissue expansion process will be challenging, no doubt. Her expander is going to be large, much larger than I anticipated. I'm trying to find a balance of being mom and nurse, of accepting our situation and not letting reactions or words bother me, and finding endurance through weekly appointments before facing another, more complicated surgery to remove the expander and nevus.

We count our blessings that she is healthy, that she did well during surgery and responded well to all the medications. Gillette Children's Specialty has some of the world's best doctors and surgeons--our nurse told us that people travel there from other countries for their children to be taken care of. We are incredibly thankful that our baby girl is in great medical care close to home. 

I can be honest and share this story with you because I am in a better place today. I still have fears and I still fight off anger and sadness about her situation, but I refuse to let pity take over. We have too much to be thankful for.

Here are are some pictures I took last week--Kendall is a strong-willed lil' firecracker and we are so proud of her for fighting through this!