Thursday, October 31, 2013

Yes Please. And Thank You

 I have learned a lot about accepting help from other people since Johnny has been born.  First there was the adjustment of having a baby.  Then having a baby with major medical issues. So many people reached out to us during those first weeks offering support in the form of prayers, food, company, and help around our house.  I didn't cook one meal until Johnny was two months old.   Little by little I have adjusted to having a little one around, but I'm not nearly the multi-tasker I used to be. The first meal I made after Johnny was born (a salad)  felt like a major accomplishment. And our bathroom only gets cleaned about once a month now. (And now you're not going to want to come over any more.)

Then there's being a home-owner and all the work that goes along with that.  Let's just say that with a little one who wakes up (almost) every time I put him down and a husband who works full time while going back to school there are a lot of things around here that get left un-done. Our neighbor mowed our lawn all summer, and is currently cleaning out our garden for the winter and making compost for us.  Taking care of our house is something I love to do and pride myself in. Not being able to keep up with all the things I'd like to do was very humbling.  I told Alex that we could have a beautiful yard, or a baby, but not both.....we've got a baby!

Then I broke my foot last month.   I am so grateful, because that could have been way worse than it was. I was only on crutches for five days before being able to put weight on my foot again. But for those five days life came to a stand still.  Having a baby and a broken foot meant sitting on the floor all day with diapers, water and the laptop within reach while my friends and family did my grocery shopping, cooking and cleaning for me.

Round two in the hospital brought on another wave of offers for meals and help with errands and other things. You'd think that by now I would have no problem saying "yes please!" But my initial reaction is still one of independence. I'll be fine. I don't need help. I'll figure something out.  Accepting help from other people is humbling, it's admitting deficiencies and lack of control.  And who wants to seem like they don't have things under control?  But if I am honest with myself I quickly come to the conclusion that I do need help. I am human. I can't do life by myself and I'm not supposed to.  I'm glad I don't need people to cook and clean for me all the time. But for the times that life has overwhelmed us, I'm glad we have great friends who have offered themselves up.  And  I am blessed with a marriage and friendships that fulfill the needs of everyday life; love, rest, intimacy, community, support.

So, if you are one of the many people who have brought us meals, visited us in the hospital, washed my dishes, cleaned my toilets, done my laundry, made trips to the grocery store, left treats on our porch, brought me a latte, and kept me company, THANK YOU!!! You have made life sweet when it otherwise would have been very bitter, and Alex and I have mentioned you in our prayers many times over.

*********

We are home from the hospital! Johnny's catheter came out this morning and as soon as he was producing wet diapers we were free to go! The game plan from here on out is thus: for the next three weeks we will leave Johnny's bottom alone to heal.  Then we will have an appointment with his surgeon to learn how to dilate his rectum with special rods.  We will be dilating it for 3-4 weeks, gradually increasing the size of the rods, and when our surgeon deems the dilation to be going well we can schedule the third and final surgery. Two down, one to go.

Here are some pics from our last two days in the hospital.


Johnny was reunited with his dear Mr. Ducky who usually hangs from his car seat.


Tuesday evening Johnny was super grumpy but wouldn't go to sleep.  When Alex got to the hospital after work he sat with Johnny on his lap and he fell asleep within 5 minutes.  Sometimes I think Johnny needs both of us around before he will go to bed.

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A visit from Grandma and Grandpa Shepperd

Johnny got a new toy from the ostomy nurse

He's a stoma buddy and we call him Stoma Stan

Johnny likes Stoma Stan.

Hopefully now that Johnny can pull Stoma Stan's bag he will stop pulling his own


We were able to use a stroller to go cruising around the hospital floor.

Tuesday, October 29, 2013

Yoga Pants and Food Network

We are halfway through our first full day in the hospital, Alex is at work, Johnny is much more alert and happy, and I am completely bored.  Johnny's surgeon was just in and said the best kind of hospital stay is a boring one, so I guess that's good.

Johnny has resumed all his normal eating and pooping activity. In fact, at 5:30 this morning we had the most epic ostomy bag leak to date.  Poop all over Johnny and poop soaked through every layer of bedding on his crib. That was the second time I had been up for over an hour with Johnny that night. Needless to say we didn't get a lot of sleep.

I am realizing that attachment parenting, which I am all for, does not work very well in a hospital setting.  We are a co-sleeping family. It took about two nights after bringing Johnny home from the NICU to realize that we would all be happier and get more sleep if Johnny was in bed with us.  I am aware of his sleeping patterns better than he is and often have him nursed and settled back into a deep sleep before he ever cries or opens his eyes.  Alex is also able to sleep through  it all.  It does have it's down sides; our queen size bed is a little cramped with three, somehow Johnny manages to take up a lot of space. I usually have a stiff neck or shoulders from sleeping in only one position, on my side, facing Johnny. But I love having him in bed with us, hearing him breathe and getting to snuggle him. I never realized how much I love co-sleeping until just a few nights ago when Johnny was doing some major teething and wouldn't stay asleep in our bed.  The only way we could get him down for the night was in a little cradle that we use for naps, so we let him sleep in there.  I thought it would be a relief  having a little more space in the bed but ended up just crying myself to sleep. *Hormones*

Anyway, co-sleeping is not something they let you do in hospitals, especially when your baby has IV's and a catheter running from him. So needless to say Johnny did not sleep well last night.  I think part of it was that he was uncomfortable, but also that he's not used to sleeping by himself. So I spent half the night leaning over his crib trying to fool him into thinking that I was sleeping with him.

Johnny is doing well! He is no longer receiving IV fluids or antibiotics, and if he continues to eat well they will take the line out all together. Then he will just have the catheter, which, as I mentioned before, has to stay in for three days so his urethra can recover from being operated on.  It's kind of annoying that there is only one little thing keeping us here, but I'm thankful that there were no complications with surgery and that Johnny is back to his squirmy, hungry, happy self.

On the up side, we have cable here in the hospital.  And there's no pressure to get ready in the mornings, so I am enjoying me some Food Network whilst lounging in my yoga pants.  Now, if only someone would bring me a latte....


someone's having fun playing with toys!

Reading stories with Auntie Amy

Monday, October 28, 2013

Welcome to the Other Side of the River

"Welcome to the other side of the river!" That's what Johnny's nurse told us when we got to his room here at Children's in Minneapolis.  That statement was preceded by us telling her that we had only been at Children's in St. Paul before.

Johnny's surgery went well and he is currently sleeping off his anesthetic. And we are making ourselves at home in his room, where we will be for the rest of this week. But I should back up to this morning.

Our morning began when my alarm went off at 6:30.  We didn't need to leave for the hospital until 10:30, but 6:30 was the last time I would be able to nurse Johnny before his surgery.  I woke him up and he did a good long nursing and even though I was tired I was contently enjoying and savoring this time to nurse him, knowing that it would be many hours before I would get to do it again. The prospect of not being able to feed Johnny was not a pleasant one. We've had to do that before and it's easiest if Johnny can just sleep through it. Thankfully he went back to sleep after nursing and slept until 8:30.

We spent the morning getting ready and packing up. For not being able to eat Johnny was a very good little boy. He sat serenely with Alex while we had breakfast, like he knew something was going on. I was doing fine until I sat down to pump.  It's not what I'm used to doing and it's not what I wanted to be doing. Around this time Johnny started to get fussy and it broke my heart not being able to give what he wanted and needed. 

We arrived at the hospital at 11:00 and got checked in in the surgery center, then were shown to a pre-op room. Johnny had a little mini check-up, during which he was very chatty and smiley with his nurse, and then got put into his little baby scrubs. And then we just waited until his OR was ready.  We spoke with his surgeon and the anesthesiologist and then it was time to go. I imagined that they would put him on the hospital bed and wheel him off, but the nurse just held out her arms to carry him. It was hard to hand Johnny over, we kissed him, then kissed him again.  Then they walked off down the hall and the last thing I saw was Johnny smiling at the nurse. That little baby is just so full of joy. I love him. 

There were many things that felt like the first time Johnny went into surgery, but while being familiar, everything was also different.  We were sad to see him go, and shed a few tears, but it wasn't the heart wrenching agony of seeing him go the first time.  I was pumping throughout the day, but it wasn't like pumping in the NICU when I had never nursed Johnny.  I knew this was just temporary, and that later that day I would get to nurse him again. When surgery was done Johnny was sleepy, but stirring and opening his eyes, not like last time when it took him almost 20 hours to come out of the anesthesia.  We got up to our room and it looked a lot like our NICU room, only way bigger.  Same fold out couch, but a TV and a private bathroom!

When we were in the St. Paul, NICU we were just down the hill from the Cathedral.  We could look out our window and see the dome and steeple and it was such a comfort to know that Christ was there watching over us.  When we got to our 6th floor room here in Minneapolis I looked our window, it faces east and off in the distance we can see the St. Paul skyline, and there's the Cathedral, much father away, but we can still see it. 

Johnny has been awake on and off.  He seems to be in a little bit of pain, but they haven't needed to give him anything stronger than Advil so far. He's nursing again with no problem, and it is so great to be nursing him. In this procedure they created a rectal opening, closed off the fistula between in colon and urethra and connected his colon to the rectal opening. His recovery should be quick, but we will be in the hospital until at least Thursday because he needs a catheter until the urethra has healed from surgery. So call me if you want to come visit!!








Post-op and sleeping soundly.  Thanks for praying everyone!


Friday, October 18, 2013

Four Years

Four years ago was the day my life began.
And since then we have filled all our days with love and grace and friendship.
We have laughed and we have had silence.
We've dreamed together and grieved together.
We have been stretched and have grown because of trials.
And we know our marriage is worth any sacrifice.
The boundaries of my heart expand with each day.

















































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