Henry’s Updates

Surgery is done and we are home, praise the Lord. In the midst of all the action, I only had time to update over one medium. So, I was emailing family and throwing the occasional photo on Facebook. For those interested, and for my own records, I am posting all the emails I wrote here now. Some of them I wrote in a rush as we were either talking with doctors or trying to keep Henry comfortable, and the perfectionist in me wants to go back and edit them, but in the interest of being transparent, I am going to leave them as they are. Update 3 is my favorite – the one with the most errors. I wrote it so quickly because Henry was in pain and I just needed prayers. Within 20 mins of me writing that email, Henry had improved significantly and I fully believe that the Lord answered your prayers for my boy. It is something that I will never forget.

Update 1: May 5th – Surgery Day!
They took Henry back about a half an hour ago. He did great this morning…so tired, but still very charming. I’ll update in a few hours when he’s all done. Unless you hear from me in the meantime, assume all is well. Thank you do much for your prayers. God is good.

Update 2: About 3 hours later
He’s done! Dr said everything went perfectly. We’ll see him in a bit.

Update 3: Wednesday early evening
Hi, all. Don’t have a lot of time to write.
We thought we were going to get discharged early today, but when they took out Henry’s catheter,  he started having a lot pain and he hasn’t peed yet. Dr. Says it can happen with a surgery like Henry’s…there’s more details, but I don’t have time now.
Please pray that Henry would get comfortable soon and be able to pee. Please aldo pray we can get som test tonight.
Hopefully tomorrow I’ll ipdate you from home.
Gotta go.
Love, Dana

Update 4: Thursday morning
Good morning, Everyone.
Thanks for your prayers…he finally peed!
He peed last night for the first time…all over his bed. So it wasn’t his best work, but he peeing like a pro now in his diaper, so we’re all good on that front.
He’s still having bladder spasms, which the doctor warned us about. They will hopefully lessen, but until the stent in his bladder/ureter comes out, it’s probably going to be a thing.
So, last night was rough pain wise, so I’m actually glad we didn’t get discharged so they could manage pain here.
He’s doing a bit better this morning. Doctor came in and we are good to go home. Phil is coming after he drops Adam off at school. I think Henry will love being back home with his brother and sister to entertain him!
Thanks for your prayers, l could really feel them last night.
Please continue to pray for Henry’s comfort at home.
Love, D

Update 5: Home!
We are at home now, Praise the Lord!
Henry has meds to help him with the bladder spasms and he’s asleep upstairs right now. Hopefully he gets some good rest tonight.
He pretty much just wanted to cuddle today (adorable). He was so glad to be back with big brother and sister.
Your prayers and God’s sovereign hand were over us yesterday and last night. I’m so glad we stayed in the hospital last night. As uncomfortable as it was for me, it was reassuring to have the doctors nearby to manage Henry’s pain.
His stent will come out in about 10 days. I can’t wait because then his bladder spasms should stop, I can give him a real bath, and diaper changes will be much easier. Then he’ll have an ultrasound in about a month and follow up with Dr. Peters and hopefully get the all clear.
Thanks, everyone for all your prayers and support. We couldn’t do this without you.
Love, Dana

So, there you have it. Just trying to keep him comfortable at home. Today I found out that his stent will come out on May 18th, so we are counting down the days until that happens. I think after that, he will be a much happier camper. We are also praying that when he has his ultrasound in a month that it will show everything as it should be in there and we can close the books on this one.

God continues to show his greatness in so many ways through all of this. I am humbled and in awe.

Henry’s Turn for Surgery

Hello out there!!! Yep, you read that right…that’s Henry’s name in the title of this post. I think he felt left out that Adam and Clara have both had surgery, so he wanted a turn 🙂 Many have been asking me what Henry’s situation is, so I figured I’d put it up here. Here are the two emails that I recently sent out to family:

Email #1:

Hello, Family and Friends.  I want to update you on Henry’s situation. We found out just today that his surgery will be on May 5! We are pleased that it will be soon, but a little surprised at HOW soon.

In case you need the back story…

When Henry was still inside my tummy, an ultrasound revealed that he had a kidney that was really big. We were hoping it would correct itself as he got bigger, but after close monitoring and numerous tests, it has not. His doctors believe that he has a kink at the base of his ureter right near where it enters his bladder, which is backing up all the urine. So, his surgeon (Dr. Peters) will go in, detach his ureter from his bladder, repair the ureter, and then reattach it to his bladder. That’s the short story.

The surgery will be at Children’s and he will be in the hospital for two nights post-op.

I’m not sure what time the surgery will be yet, but I will update you when I find out.

So, here we go again! Please pray for a smooth surgery and recovery, and that Henry would have no problems or reactions to the anesthesia. Also, please pray for all the logistics for the older kids that they wouldn’t feel too disrupted or anxious during the next week.

Thanks, so much, everyone! Your prayers and support are so treasured by our family.

Love to all,
Dana

Email #2:

Hello, again. Thank you all for your encouraging notes and prayers. We are again so thankful for all of you and the way that you care for us.

Henry’s surgery is scheduled for 7:30 AM on Tuesday, May 5. That means that we need to be at Children’s in DC at 5:30 AM! Due to our very early departure on Tuesday and thanks to some amazing friends, Adam and Clara will both be having their first sleepover ever on Monday night 🙂

That’s about it, for now. I will update on the day of surgery. The procedure lasts about 3-4 hours, so if you don’t hear anything for a while, don’t be worried.

Thank you for your prayers for our boy – keep them coming! I am more nervous than I thought I would be, but I know he is in good hands.

Love you all!

The Gifts

Oh, so many gifts! Gifts that were so unexpected and needed that they took my breath away. I have never in my life so fully understood that It.Takes.A.Village. Amen. Our family and friends carried us on the wings of so many sweet words that came pouring into our inboxes, mailboxes, voicemails, and facebooks. I have made a book that I will give to Clara someday with all of the notes in it so she can see how many people – some unknown to her, some unknown to ME – were praying and had so much encouragement to offer. We were overwhelmed, but in a beautiful way. It was amazing to know that I had so many people in my life that loved me and my daughter. Many of the messages came exactly when we needed them, and I hope you all know that God was using you all to care for us. We knew that without a doubt.

The physical help…the hands and feet of God. So many meals. So much childcare. So many caramel Frappuccinos 🙂 So much princess paraphernalia – much to the delight of Clara!

Music has always been a big part of my life, and this time was no different. Several songs were especially powerful and helpful as I was trying to feel my way through Clara’s journey. I’m just going to share a short snippet of the lyrics, but you should listen to the songs:

Lord I Need You
Lord, I need You, oh I need You
Every hour I need You
My one defense, my righteousness
Oh, God, how I need You

Open Up Our Eyes
Our God is fighting for us always
Our God is fighting for us all
Our God is fighting for us always
We are not alone, we are not alone

Rock of Ages
Rock of Ages, cleft for me
Let me hide myself in Thee

Christ Alone
Christ alone; cornerstone
Weak made strong, in the Savior’s love
Through the storm, He is Lord
Lord of all
(The verses are beautiful, you need to listen.)

It was amazing for Phil and me to feel so tangibly the voice, comfort, peace, and provision of God in the midst of such a crazy and scary time. More on gifts in following posts…

The Purpose

I don’t recall at any point dwelling on the question of “Why.” Why Clara? Why us? I feel like the Me of ten years ago would have struggled long and hard over that question. It kind of makes sense since I am a Mama now, my brain was consumed with how I was going to get my kids (both born and unborn!) through this time. The logistics and emotional factors were mind boggling. Phil and I were also very focused on how to help each other survive.

I have learned that when I face trials, it is usually because God is trying to teach me something or accomplish something, and the quicker I figure that out, the quicker the trial comes to an end J I felt that God was challenging me – or at the very least asking me – to use this trial for His glory. I never felt pressured to act a certain way, but I definitely felt empowered. In the midst of extremely difficult circumstances, I felt peace and strength. I was given the opportunity to share my faith and the source of my strength with many people along the way. Surprisingly, despite being exhausted, in physical pain (related to pregnancy) and mentally drained, I was able to respond coherently and in love to the people around us and found great joy in that. It was certainly not my doing, but God empowering me to do His work. Our trial and suffering was not in vain. My physical and emotional weakness served to show His power.

I often revisited Philippians 1:27-29:
“Whatever happens, conduct yourselves in a manner worthy of the gospel of Christ…For it has
been granted to you on behalf of Christ not only to believe on him but also to suffer for him.”

I remember thinking in the midst of everything that if our family was going to have to go through all of that, at least people were going to know who was getting us through it.

The Choice

A few weeks post-op, after the dust had somewhat settled, I began to process all that had happened. There was one big-picture realization that I had that was encouraging to me: I chose God. What? Of course you chose God. Why would you not choose God? There was a time in my life, in college and just after college, when I also faced a trial and I did not choose God. In fact, I intentionally turned away from God. It was encouraging to me to see how I had grown enough in my faith and my walk with the Lord to now turn in to God when it hits the fan rather than turning away in anger or hopelessness.

Focusing on God and what I know is true about God is what saved me. Whenever I would start thinking about things out of my control – or try to control them myself – I would feel anxiety taking over. Keeping my focus upward kept me somewhat sane and reassured. Taking my eyes off of God was no good.

Our friend Lee Ann from Ohio sent me some encouraging words from our Pastor there. These aren’t things he said specifically to us or to our situation, but I found them to be wise and replayed them in my head many times:

“When I base my life on what I know to be true of the unchangeable God, my faith remains steady.”
“Worry erases my ability to remember God’s power and provision.”
~Greg Trout

I chose God and clung to Him and His promises like never before.

This Side of Surgery

Hello, everyone. I wanted to update everyone and share that Clara has been making great progress since her surgery! It has been remarkable to watch her grow both in ability and in confidence as she gets stronger and stronger. Her tremors have completely vanished and she is much steadier on her feet, which has completely changed the way she plays – much more willing to try things, more into physical play and better able to keep up with other kids. She is doing physical therapy once a week to continue to strengthen her muscles and joints and to try to further correct her in toeing. She JUST started jumping with both feet coming off the ground at the same time and she is REALLY excited she can do this now. She is always saying, “Mama, I am getting stronger!” “Mama, I can do (x) just like a big girl!”

She had an MRI and a visit with Dr. Myseros on October 23. Dr. Myseros put up the images of her brain pre-op and post-op side-by-side and it was one of the most beautiful things I have ever seen. Spinal fluid is moving through the hole that was put in her third ventricle and her ventricles have reduced in size. The best part, according to Dr. M, is that we can now see the textured outline of her brain with all the little nooks and crannies that a normal brain has around the edge. Before, there was so much pressure that it all just kind of flattened out at the edges, more like a smooth circle. Amazing. So, all great things! She will have another MRI in a year to continue monitoring the tectal glioma (tumor). There was no change to the tumor and we are not expecting and praying for no change in the future.

I have been meaning to sit down and write out some of my thoughts and more personal experiences that I had during this whole journey with Clara. It has taken me a while, partly because Baby Henry has kept me on my toes, but also because I am really still processing all that has happened and all that God has done for us since May. But, now it is time. I want to share these thoughts with you for several reasons. I know how comforting and assuring it was for me to read some other blogs of families who had gone through what we were facing, and I hope to return that favor. If I can offer encouragement to even one person, then it is definitely worth my time to sit down and write this out. Second, I want Clara to be able to read it someday. I made her a book with all your sweet words of encouragement, love, and prayer that I will show to her later on, but I also want her to know what was in her Mama’s heart and how God provided for me and for her in so many ways. Last, I want to write it for myself. About a month ago I came across this scripture and it grabbed at my heart:

“Only be careful, and watch yourselves closely so that you do not forget the things your eyes have seen or let them fade from your heart as long as you live. Teach them to your children and to their children after them.” Deuteronomy 4:9

I never want to forget the closeness I felt with God during this time in my life and the work that He did for us. I pray that Clara will someday understand how much God loves her and how He cared for her in a very tangible way at such a young age.
So, I hope you will enjoy reading my next few posts and I won’t bore you to death! If I do, just scroll through until you start seeing some pictures again 🙂

Much love to all of you,
Dana

The Princess and the Pea…So What Now?

I’ve been meaning to update for days!  Sorry to have left you all in the dark post-op.  It’s just been a big adjustment, as you can imagine, and I’ve been very tired at night, which is generally when I do my posting.  I know many of you are wondering how it’s been going and how everything went, so I’ll do my best to lay everything out here.

Whew!  Surgery is done!  Hopefully by now you know that Clara’s surgery on the 9th was successful and she has been at home since Tuesday afternoon, the 10th.  Dr. Myseros said that her ventricle was more difficult to poke through than he had anticipated, which made the surgery a little more difficult, but he tried with a few different instruments and was able to do it.  We are so grateful for his wisdom and capable hands…our girl is safe and we were able to avoid a shunt.

She was a trooper through it all.  We spent time before surgery coloring, doing stickers, reading books, and blowing bubbles.  When anesthesia came to bring her back, they played Frozen songs on an ipad and Clara apparently gave everyone a concert.  In recovery afterwards, everyone kept commenting on what a great singer she is and how she knows all the words.  If they knew how much we watch Frozen, they would not be so surprised.

Packed and ready to go. This is what everyone brings for a sleepover at the hospital, right???

This girl is ready! Checking out all the cool stuff in the box she got from the hospital.

Catching bubbles.

Dr. Myseros came in to mark the spot for the incision. “JM” marks the spot!

Reading with Daddy.

Phil and I went back to meet her in recovery.  She woke up pretty easy this time, but that might be because they had given her a little morphine for pain.  We spent time in recovery watching tv and giving her popsicles and ice cream.  I was relieved to see her eyes working normally and to hear her talk, although her voice was raspy from the breathing tube they put in during surgery.  She kept saying, “Oh, it’s so nice that the doctor has ice cream for me!”

Still asleep in recovery.

It’s a rough life watching Little Einsteins while Daddy holds a popsicle in front of your mouth for you to lick.

Then, we moved up to her room in the neurology wing.  With the help of some sweet gifts from friends, we were able to totally princess the place out.  Clara was thrilled!

 She stayed in bed until about 5:00 and then said she wanted to get up.  So we unhooked her from everything and took a short walk down the hallway to see the fish tank and the playroom.  After a bit, though, she came and laid her head down on my lap and it was pretty clear that our little stroll had wiped her out.  We went back to the room and had a bit of a rough time since she was so tired but had to have her vitals taken and get hooked up to everything again before she could go to sleep.  They also put some antibiotic in through her IV, which she hated.  Once that was all over, I laid with her in her bed and she fell asleep and slept all through the night until about 7:30.  Dr. Myseros came in at 5:30 to just check her incision and talk with us.  Everything looked good.  She needed a “fast MRI” (no anesthesia) before we were discharged to make sure everything was looking good in her brain.  Without anesthesia, though, she was totally freaking out and there was no way she would hold still even for 5 mins.  So, Dr. M said that a CT scan would give him the information that he needed.  After the whole MRI ordeal, it took some coaxing to get her to do the CT scan, but she did it and everything looked fine in there.  By this time, we were all pretty exhausted, but we were happy to be going home.

So happy to be reunited!

 She’s been doing well at home…almost TOO well!  Adam and Clara really missed each other, which is cute and all, but it’s been hard to keep their play at a level that is safe for Clara at this point.  She is also sad that she can’t go to the pool, but all the princess gear that she’s received from her friends and family has been a huge hit!  We have to wash her incision every day, and she has become a pro at “washing her owie in the sink.”  Those are probably the biggest challenges: Keeping Adam off of her (and keeping him busy!) and keeping the incision clean.

Watering her special sunflower that she got from her good friends Miss Elisabeth, William, and Sophia.

She missed her friend Jayden while in the hospital, too, so we went for a visit. It was great to get out of the house. She gave Jayden’s dog Roxy a little serenade. Roxy was mildly amused.

So…what now???  She will have a follow up with Dr. Myseros in the middle of July, and she will also have another MRI at that point to see if the ventricles have shrunk at all and to see if fluid is moving through the hole that Dr. M made.  We’ll go from there as far as further follow ups with Dr. M and Dr. Lateef, her neurologist.  We will also be waiting to see if her symptoms (instability, trembling) will subside as the pressure in her brain slowly normalizes.  She will have physical therapy to try to help this process along.  The main objective of the surgery was to relieve the pressure, which would have caused major problems for her as she got older, but we are of course hoping for a reversal of the effects of hydrocephalus.  She will have yearly MRIs for probably the rest of her life to monitor the size and presentation of the tumor.  We pray she will always be the Princess and the Pea, and not the Princess and the “something-bigger.”  So, we’re playing “wait and see” for a few things, but are feeling great that the surgery is over and we will just take the rest step by step.

We can’t thank you all enough for your support.  God has given us a great village!  People continue to ask how they can help…so here are some things:

1. Prayer:  Praise God for his MIGHTY work through all of this – truly amazing!  Although Dr. M does not see this as a cause for concern, we pray that the hole that he made will not seal back up over time.  She is old enough that this shouldn’t happen, but it’s still something that I think about.  Pray that the pressure in her head normalizes and that her symptoms will subside.  Pray that her incision will heal well and that she would not get frustrated by how long it takes and by her limitations during that process.  Pray that future MRIs would not be traumatizing for her, now that she knows all that an MRI entails.  Pray for Adam as he is dealing with all of this, his sister’s limitations as far as outdoor activity, and parents’ low-energy.  Pray for Phil and I to have patience and endurance.  Pray for my physical well being – Baby#3 isn’t getting any smaller, People!  That’s a lot of prayer…maybe if everyone just prays for a couple of those, we’ll be set 🙂

2. Anytime anyone wants to take Adam somewhere…we won’t stop you.  This would be a huge blessing to Phil and me as well as to Adam.

This has been a challenging journey, to say the least, and it’s not over yet, but it has also been a sweet time with the Lord.  We have watched Him work in mighty ways, holding our girl and our family in His hands.  He has often shown His provision through all of you – please know how thankful we are.  I have many thoughts about the emotional/spiritual side of all this, and I may write a separate blog post just to record all of that.  So many gifts in the midst of trial.

 

Pre-Op…Check!

I wanted to thank everyone for their prayers and good feelings sent our way for Clara’s pre-op appointment yesterday.  She did great and is quickly adding to her list of Children’s Hospital nurses she has wrapped around her princess finger.  The day was definitely harder on Phil and me than on her.

We started off meeting with the nurse practitioner going over history stuff and then met with Dr. Myseros.  He went over the whole procedure again and answered our questions.  He continues to encourage us with his confidence and expertise.  He feels extremely optimistic about Clara’s surgery given the anatomy of her brain.  It’s a good brain!  At the end he gave Phil and handshake, me a hug, Clara a high five and told her he’d see her on Monday. 

Then we went for her blood draw, which went way better than I had anticipated.  She didn’t love it, but didn’t totally lose it either.  We were able to distract her somewhat and talk her through it.  She stopped crying as soon as the needle came out and was very excited to pick out her sticker.  We wrapped up the whole ordeal with a trip to the cafeteria for a cookie.

Phil and I were really drained after the visit – I think largely because it was the last step before the surgery itself.  It’s really happening.  We are so looking forward to Monday being in the past and moving on to the recovery part and hopefully seeing Clara’s symptoms fade. 

Keep praying.  Pray that Phil and I could truly trust and accept God’s goodness and sovereignty.  That He would give Clara and us peace that surpasses understanding. 

Much love to all,

Dana

Clara’s Surgery – Update

Hello Family and Friends.  Just a short post with some new information.  We found out a few days ago that Clara’s surgery will be at 10:00 AM on June 9th.  We will arrive at the hospital (Children’s in DC) at 8:00 AM and go from there.  So, you can all set your alarms for 10:00 AM (Eastern Time) on June 9th and start praying!

We also have her pre-op on Thursday, June 5, at 1:45.  Obviously, this is not nearly as big a deal as the surgery, but they will need to draw her blood, which I am a bit nervous for since she won’t like it.  I have some new books and toys to try to distract her, though.

We continue to be overwhelmed by your support, both in word and deed – I feel like a broken record saying “Thank you,” but I just don’t know what else to say.  Grandma Peg was here for a week, and I don’t know how we would have made it without her.  She got us through the initial shock and exhaustion stage and, of course, the kids loved having her.  My mom arrives this Friday and we cannot wait.  You are all amazing.  God is amazing.  We are blessed.

I’ve included just a couple pictures of the kids as we’ve been keeping to “life as usual” as much as possible for them.  The last picture was taken by my dear friend.  She and her husband gave me a sweet day of relief by taking the kids to their house and, as you can see in the photo, totally wearing them out!  God has spent much of my time as a Mama teaching me that it truly takes a village.

Much Love,

Dana

June 9th – It’s a Date…Surgically Speaking

Here’s the email that I sent on May 19th after we had set the date for surgery.  We don’t know the time yet, so I’ll keep you posted on that.

Mark your calendars, folks…June 9th is the day for Clara’s ETV surgery with Dr. Myseros.

Phil’s mom arrives tomorrow – praise the Lord!  We are running ragged over here and it will be so good to have family here in the trenches with us.  My mom will likely come out a few days before surgery.  So very thankful for our Mamas.

So, prayer:  Keep it coming!

Besides the obvious prayer for Clara’s peace, safety, and a successful surgery, please pray for Dr. Myseros and all the other people in the OR and otherwise involved in Clara’s care.  Pray for Phil and me as we navigate through this – we are both emotionally exhausted, but are receiving God’s love every day in many ways. Pray for me that I would remember to take care of myself physically as I am carrying Baby #3.  Pray for Phil…he has so much on his shoulders and is doing an amazing job caring for his family!  Please also pray for Adam – Phil and I don’t have nearly as much to offer him right now and he is struggling with that.  Grandma arriving tomorrow will help with that, though!

Many of you have asked how you can help.  I feel weird laying this out, but hey, you asked for it!

1.  This one is actually very important to me.  Your words of encouragement and love are HUGE to us.  I would love it if you would Cc Phil on your emails.  philip.swenson@gmail.com  I have been forwarding him things, but he needs to feel the love just as much as I…probably more so, since he has to deal with a crazy pregnant lady through all of this as well 🙂

2.  Meals – frozen or freezable meals would be helpful that we could pull out as needed.

3. Some have asked about gift cards…we have a take n’ bake place by our house called Dinner Done.  Clara loves Chick-fil-a!  Papa Murphy’s pizza is a good one, too.

4. Some have asked what kinds of things Clara is into.  One word: PRINCESSES!   Ballerinas and stickers are up there, too.

5.  Once Grandma arrives, childcare for Adam will be less of an issue, but knowing people are available is a big stress relief for us.  Thanks to those who have already offered and helped out in this area.

Again, I hesitate to even write these out, as your support and prayers are the most important to us, but so many have asked, i just figured I’d put it out there.  We are so blessed by all of you.

I’ll be in touch.

So much love,

Dana