06.07.13

What a roller coaster the last couple of months have been! 

April was our best month of therapy yet! Hannah is getting stronger and more vocal- she has open happy laughs that just melt my heart:)

May brought a bit of frustration for this mommy. An ER trip at the end of April revealed a wicked case of pneumonia- no fever, no fussing, just a sleepy little girl who didn't want to open her eyes for four days. Unfortunately, when Hannah sleeps like this, it's almost that her body slows down in all ways. She's lethargic to the point of not being able to hold up her head and even her food processing slows down, so much that she ends up not getting enough to eat. After a round of antibiotic for the pneumonia, Hannah's lungs were still a little crackly, so the doctor decided on a second round to clear everything out. Hannah's belly disagreed with that decision and as protest, she shut down again. After a second trip to the ER, we discontinued the antibiotic. Finally, things improved and we could get back on track with therapy and getting stronger!

Until Hannah got another cold. Her lack of ability to swallow secretions caused Hannah to choke and gag and do something that looked a lot like small seizures. Trip three to the ER was quick, but only because they sent us on to Mayo. Three days later, it seemed that what could have been seizures were probably (and hopefully) not neurological. Once Hannah was closer to normal, we got to go home just in time for my last day at school! And, then trip four to the ER. Hannah didn't feel good and as usual, decided to go to sleep. After three days, she was too dehydrated to stay at home and we took her back in for what ended up a four-day hospital stay. We got home yesterday, and Hannah smiled, laughed, and made lots of happy noises all night to let us know she was happy to be back home.

Yes, it's been a bit stressful in our house lately, but we've also got a lot to celebrate:
-Will is officially graduated! He's done, done, done with school! He's VERY happy.
-At the banquet for his graduation, Will was awarded with runner-up apprentice of the year! We are so proud of him!
-Eli is super excited about spending some time with Hannah and I this summer. Story time, walks, a blow-up pool, and loving on Hannah are all on his horizon. His favorite word is 'no'.
-Hannah got the go-ahead to start trying oral feeding. It is slow, but it's a start, and we will get there!
-I've been able to connect with another mom of a CDC daughter. Olivia is a beautiful little girl that inspires me and what we have to look forward to with Hannah. Her mom, Tiffany, is fantastic as well, and has been a great support in honesty and answering questions that I've had. What a blessing to have found her and her family's story!
-We have summer ahead of us, beginning with a trip to Milwaukee for a baseball game, a trip to the zoo, and some much needed relaxation at the hotel pool!
-Best of all: I slept in my own bed last night...Take that hospital window bench! :)

04.13.13

We are so blessed! What an incredible outpouring of love at Hannah's benefit last night!

I find myself beginning to say thank you and realizing over and over again that I have no words to express the thanks that we have. (Will would argue that this is a miracle as he thinks I ALWAYS have words:) We have been humbled. We have been blessed. There truly are no words to explain just how thankful we are. 

In addition to the financial support, we want to say how very much we appreciate the thoughts, prayers, anonymous notes of support, and encouragement that we've been shown in the past few months. Thank you.
 
When we had Hannah, I planned out a life in my head. A life of learning to crawl, walk, talk, school, rainy soccer tournaments, hoping she wouldn't really like soccer... I pictured awkward middle school growth spurts, the first broken heart, graduation, the man that would never break her heart... I hoped for normal, without ever realizing that there would be an alternative.

Now I cannot imagine anything other than what we have. 

Each day I better understand the gift that God has given us. Hannah is exactly who she was meant to be. God does not make mistakes- I believe that Hannah was sent to inspire His love. I saw it last night, I see it in Hannah each day. She brings out the best in people. Every person who was able to attend the benefit can attest to the love and generosity that brought the community together over a little girl most have never met. What greater love is there- than to love your neighbors?

My heart overflows with gratitude for your kindness and love. We love you all. Thank you.
 

03.12.13

Short Update:
Hannah and I made the trek to Mayo early on Sunday due to the storm headed that way. It was a good choice, as Rochester got 10.5-12 inches overnight. Hannah's post-op check went well, I will be able to change the g-tube at home from now on. Her white blood count is still too high, but the surgeon believes it is related to inflammation in her belly rather than an infection. No more meds for the infection, but we need to keep a close eye and watch for fevers and pain, etc. 

Hannah is doing well with her feeds and we are about ready to switch over to just bolus feeds! Soon we will sleep all night long!! YAY!

 

03.05.13

Thanks to a snow day, I now have some time to update our progress since settling back in at home. 

Thanks to the feeding pump, Hannah is getting enough to eat each day, though it does mean having to run a slow flow overnight. I'm looking forward to working up to eating enough during the day in order to cut out those night feedings (and maybe get a little more sleep in this house?). We are still cautiously increasing daytime feeds to meet our goal.

The stomach bug that has hit hard this winter finally made its way to our house. Thankfully, Will and I escaped, but let's just say it was a 'poopy' last week around here:)

We head back to Mayo on the 11th for a post-op check and another blood draw- as of Feb. 28th, Hannah's white count was still high at 16. In the words of the surgical doctor team, 'We sure aren't moving mountains, are we?'. The lead surgery doctor did say that as long as it's slow and steady, we shouldn't have to make alternative antibiotic plans. 

Now that we are home, I find myself thinking often of our friend Riley, who is still in the therapy unit at Mayo. She is an inspiration to me and I pray to keep the courage that she has. The only plus to making a trek back to Rochester this month is the hope of getting to see Riley! Riley brings out the best in Hannah- she's always willing to share a smile with her:)

The biggest news since we've been back is that my wonderful team of co-workers at Mount Vernon are planning a benefit for Hannah. I know I've said it before, but I'm blessed to work in an environment that treasures my children as their own- people with such big hearts and love for our family. The benefit will be held on April 12th, from 5-8pm. There will be dinner, a family dance (I'm so excited to see my students boogie down!), a photo booth, and a silent auction.

02.21.13

YAY! HOME! Hannah is settled in and doing well. Her white count is still too high, but oral antibiotics should take care of the infection that's left. She's on a continuous feed for now and we will slowly ween her into bolus feeds.

We are home just in time to be snowed in:) After being off work for two weeks, I've never wanted a snow day so badly. I'm after cuddle time with both of my babies.

02.19.13

The plan- if weather allows- is still to make it home on Thursday. Hannah is about 8 hours into a slow continuous feed, and so far, so good. We will continue slowly increasing overnight and be at goal for a continuous feed by morning. While this is far from goal for a normal bolus feed, it is a step in the right direction, and it's enough for us to head home. 

Tomorrow will be another blood test for a hopefully lower white count and then a probable switch from IV antibiotics to oral antibiotics. If all falls into place, the residents will prepare the discharge paperwork tomorrow night, have it ready for quick overnight updates from Wednesday into Thursday, and send us packing early Thursday.

Now, everyone just cross your fingers that the storm holds out for this mommy to take her baby home!

02.18.13

Good news! No large abscess was found, and Hannah handled the contrast well. Hopes for starting a very slow flow feed tomorrow afternoon. If she can handle it, we might again escape a PICC line and even transition to oral antibiotics. One step closer to home!

I was very lucky to run into a dad that we met from the Ronald McDonald House on our last visit. It's encouraging to hear of other struggles and now that we aren't alone in what sometimes seems an impossible journey. I am blessed to know Rylee and her dad, Larry, and be inspired by their story and motivated by Rylee's beautiful smiles. They are a true testament to seeing God work through people.