Happy birthday to our FIESTY 3-year-old Lulu!!! This wonderful little girl never fails to keep us on our toes! 🙂
-photos above courtesy Milestone Portraits by Thea-
As we spent time with family and friends over the holiday season, it became apparent that reading about Peanut’s condition and seeing it first-hand are two very different things. There were several good questions about some of the terms we’ve used in Peanut’s updates. It’s easy for us to explain what a broviac or a stoma is, but if you’ve never seen either, you likely wouldn’t be able to picture it in your mind. The whole month of August was like a refresher course of my high school anatomy class (which I passed with flying colors, but you wouldn’t have guessed it by some of the dumb questions I had for the doctors – I Googled more than I asked). 🙂
So we decided to take some pictures to better explain what’s going on with her. I have to admit, I think the reason we didn’t post any pictures earlier is because we were in a way still trying to get “comfortable” with seeing it all ourselves. Now it’s all second nature to us – it’s just all part of Peanut’s anatomy! We joke that it’s hard to remember what it’s like to have a baby without an ostomy bag. It just seems normal to us.
The thing we want our readers to keep in mind when you see these pictures, is that Peanut is not in any pain, nor does she have any discomfort – aside from being gassy! (no joke – it’s a common short bowel side affect) She is one happy little girl. 🙂
The Broviac:
That’s just a fancy name for the type of catheter that she has (named after the man who designed it). The catheter is placed in a central vein in her chest so that her medications and IV nutrition go directly to her heart and pumped throughout her blood stream quickly. She is also able to get lab draws through her broviac…no ouchy needles!
The stoma & ostomy bag/pouch:
The bright pink bump on her abdomen is her stoma – a surgically created “opening” to her body. Technically her ostomy is called a jejunosotmy. The stoma has no nerve endings – so it doesn’t hurt her to touch it, nor does it hurt when she’s on her belly. The dark red circle on her abdomen above her stoma is one of her hemangiomas that we referred to in an earlier post.
Okay – here’s a quick anatomy lesson. The small intestine is made up of three structural parts: The duodenum (top), jejunum (middle), and the ileum (end). In Peanut’s first surgery (July 31st), they removed her ileum, which was about 10 inches (along with her appendix). It seems like a lot, but an adult female has somewhere around 23 feet of small intestine. Crazy! So Peanut’s jejunum is now the “end” of her small intestine. Her jejunum is surgically connected to the stoma on her abdomen so that her waste empties into the bag/pouch. In Peanut’s second surgery (Aug. 1st) she had most of her large intestine removed – the cecum and entire colon, leaving only a partial rectal stump and anal canal.
The scar:
In the second surgery, the surgeons left her abdomen open and attached a “silo” under her skin exposing her remaining intestines. (If you Google “abdominal silo” you can get a better picture of what this is). With a silo, the doctors could literally peek at her intestines to keep their eye out for any signs of more NEC (Necrotizing Enterocolitis) developing. She remained like this for 7 days (on a paralytic so she didn’t move and pull out the silo). Thankfully, they did not have to remove any more intestine, so during her 3rd surgery (Aug. 8th) they removed the silo and closed her abdomen, leaving behind this lovely battle scar. This same incision site will be used for her next surgery. The surgeon assures us that he will make it look much “prettier” the next time around. I’m sure Peanut will appreciate that when she’s older, but it makes no difference to us since her daddy will never let her wear a 2-piece swimming suit anyway. 🙂
We hope this gives you a better understanding of some of the terms we use relating to Peanut’s condition in our posts. That concludes today’s “anatomy of a Peanut” lesson. Class dismissed!
This past Sunday we had a celebration for two very special little girls as they reached new milestones. Lulu turns 3 years old on Friday, and Peanut was baptized (she will also be 6 months old come this Sunday).
Lulu & Peanut
Due to the nature of the season – flu & cold season that is – we limited the celebration to godparents and grandparents. We were even fortunate enough for our parish priest to make an exception and baptize Peanut at our house. 🙂 We had a great day celebrating our two littlest rascals! We are so blessed!
Peanut & her god-fathers…aka “the enforcers”…the guys who are going to back up daddy when Peanut starts dating.
Lulu (left), Peanut (right) both wearing the same baptismal gown that all of their paternal cousins have worn.
With returning to work, I’ve found it difficult to find time for an update on Peanut! Heck, I’m finding it difficult to find time to shower! But enough of that…Peanut has had some exciting changes over the past two weeks, so here’s your long overdue update!
Aren’t I cute?!?! I’m now 10lbs. 9oz!
Last week she made the jump from TPN (total peritoneal nutrition) to a fluid ringer. This means Peanut is now getting ALL of her nutrition by mouth. Unfortunately, her waste output continues to climb, which is why she needs the fluid ringer (a saline & electrolyte solution) overnight to keep her hydrated. There is always the chance that if we don’t get her output under control, she may have to go back on TPN. Fingers & toes crossed that we won’t have to backtrack!
With weaning off of TPN over the past month, her growth has slowed substantially. So, in order to increase her calories, Peanut is now up to drinking 80ml (up from 75ml) per feeding every three hours, and she can now have 5 bites of rice cereal three times a day. As you can imagine, she is very happy about this change! For the first time in her life, she seems content after a feeding. It may seem like a small change, but it’s made a BIG difference! Before this, the amount we fed her orally never really took the feeling of hunger away, although she was getting extra calories through her TPN. Imagine only being able to have a small snack every three hours – never a meal. It may curb your hunger for a short time, but the hunger quickly comes back. This is how Peanut lives…she is hungry all the time. It may seem cruel, but if we fill her up, she will “dump” – meaning everything will come out the other end too quickly and she won’t get any nutritional value out of the feeding. In a sense, we are “training” her gut to learn how to slowly breakdown the food and absorb the nutrition.
Two more things we’re keeping our eye on (aside from the high output), is her liver function and her central line. As you may recall from her last update, her liver function tests (ALK, AST, ALT) are abnormally high. She has been on a liver medication, ursodiol, since early December, however, her numbers are still climbing. The lipids/fats in TPN over time is very hard on the liver and can cause permanent damage. This is one of the reasons why her doctors have been so aggressive recently in trying to wean her off of TPN. So we’re hoping that next week’s labs show a reduction in her ALK/AST/ALT scores.
The other reason why the doctors are pushing to get off of TPN so quickly, is because her central line (Broviac) is continually developing blockages. Overtime, the sticky solution (dextrose/sugars) in the TPN builds up, or blood around the end of the line clots, or a combination of both and creates a blockage in the line. She has had three blockages in the past month and a half – last night being the third. A nurse is coming today to administer a medication, t-PA, in her line that will help break-up the blockage. Ideally, the doctors would love to be able to remove the central line, due to the high risk of infection associated with it. But because of her high output and need for extra fluids, they won’t be removing the line anytime soon.
Peanut’s next appointment with her doctors (GI, surgery, and neonatology) are next Thursday the 24th. Kind of sounds like a lead into a bad joke…A gastroenterologist, a surgeon, and a neonatologist walk into a bar…I’ll stop there! I’m sleep deprived. We’ll update you after the next appointment!
By the way, in case you’re wondering…Peanut has had no problems adjusting to having mommy back at work. Grandpa S & Nana O are doing a fantastic job with her. As you can imagine, she has no shortage of love and attention from those two!
I stated in a post a few days ago that there wasn’t much incentive for Google to update its maps near our location because not much changes around here. Well, after getting side tracked by Google Maps, I went even further off track and started looking through some old USDA records. These USDA photos prove my point:
2012
2011
1980s
1970s
1930s
This wasn’t much of a surprise to us, as we knew the house and buildings were built pre-1920 and as you walk through the yard old concrete shows were the buildings missing today once stood. But, as I backed the shots out to a 10 mile by 10 mile square and compared the 1930s shot to the 2012 shot I was surprised to see not much had changed. The small towns were about the same size. The tree lines hadn’t shifted much. No new farmsteads had appeared and most of the old ones were still there and hadn’t changed significantly. Makes you wonder if it will still look the same 100 years from now.
Despite the remaining Christmas leftovers, a sure sign spring can’t be too far off is the arrival of the seed catalogs. I was flipping through one that arrived over the Christmas break and it got the kiddos talking about trying to grow pumpkins again this year. After last year’s drought, there’s a little bit of hesitation. If they decide to do it again this year, there’s some debate over what to grow.
The 2012 “Drought” Harvest
Here’s some thoughts on what the kiddo’s 2013 Pumpkin Patch may look like:
Tried and True -The classic pumpkin… not too big, not too small… just right to carve two round eyes, a triangle nose, and a one tooth smile. (You can click the photos to go straight to the Amazon page for each variety.)
Bigger Is Better – Big pumpkins are always exciting. Strains of Big Max are very popular and any pumpkin with “giant” in it’s name has to be good, right?
Fancy-Shmancy – Not sure if you could ever carve one of these, but they would look great as a center piece.
Orange Is So Yesterday – For those who say throw the traditional “orange” pumpkin out the window. Let’s add a little color to things.
Wee Little Ones – When less really is more…
I’m hoping they give it another shot. I think some of these could really turn out neat. At least it’s a safe bet after how last year went that Sissy won’t try pre-selling pumpkins this year.
I downloaded Google’s SketchUp software the other day hoping it would be helpful with drawing up a plan for a cattle shed (that’s still a few years off). As I was messing around with it, I found the “Add Location” tab that allows you to import an image from Google’s Map. I imported our property and was surprised to see it had been recently updated – there’s not much incentive for Google to up update rural Iowa very often, as it doesn’t change very rapidly. (I have proof of this I’ll show you in a later post I’m working on.)
I immediately knew when the photo was taken because there was a wagon sitting in the yard. The wagon was borrowed from my brother for a project I was working on late in May and only sat there for two days. That got me curious (the DW would say it doesn’t take much).
How quickly does Google cover an area when taking photos for their maps? The wagon had sat at my brother’s in-laws for a while before it was dropped off at my parent’s place. It stayed there for a day or two before I picked it up, filled it with compost, and parked it at my place. I unloaded the compost over the next two days and then parked the wagon behind the garden until my brother picked it up a couple weeks later. So what’s the point?
The wagon at our place
The wagon at my parents
The wagon at my brother’s in-laws
Apparently, the wagon covered more ground than Google that week. Ironically, the only place the wagon doesn’t show up is at my brother’s.
It’s a couple days late, but in honor of 2012 here’s a few photos to highlight just a small portion of the year. Just click on the photo to see the story.
Green Peppers For The Picking
The View From The Pasture
A Sprouted Pumpkin Seed
Potato Boy’s Room
The Bacon Italian Cheeseburger
A Skunk To Add To Pip’s Collection
Peanut Post Surgery
Pumpkin Harvest
Lulu checking on Peanut to make sure she was enjoying the ride!
The New Normal
Uncovering Old Floors
Blizzard 2012
A Joyous Christmas
Moments after Peanut was born, the UIHC AirCare helicopter was dispatched to transport her to the the UIHC NICU. (This was because of prematurity – her NEC issue was yet to come.) The transport team brought along a handmade black and gold hat the perfect size for Peanut’s tiny head – Peanut’s first gift. This was the first of many handmade items we would receive from the Preemie Project during her extended stay at the UIHC.
Peanut’s first hat.
The Preemie Project’s mission seeks to provide comfort and support to critically ill infants and their families in Newborn Intensive Care Units in Iowa. One way they achieve this is through a devoted group of local and national volunteers that make hats, booties, blankets and blanket sleepers (Peanut’s favorite). Since 2005, the program supports over 900 infants a year at the UIHC NICU. (They also offer support to six other Iowa hospitals.)
Peanut with a handmade Hawkeye hat.
More Preemie Project items.
All of the materials are purchased with donated funds. You can read in the site’s blog about their recent Black Friday Fabric Fundraiser that ended 4am the day after Thanksgiving with a trip to a fabric store to purchase over 700 yards of fabric – all of which will be used to comfort a sick infant.
Peanut in a blanket sleeper.
The Preemie Project is only one of several great projects we learned about during our stay at the UIHC with Peanut that offered simple services that made our lives a little bit brighter during some very long days. We hope to list more of them here as time permits. Until then, feel free to click the link below to see what great things The Preemie Project is up to.
Click the image above to visit the Preemie Project and find out more about the great things they’re doing!
Even though she didn’t express her excitement in the same way as the rest of the kiddos this Christmas, Peanut’s moments of wide-eyed wonder had me wondering on several occasions what she must be thinking about all the commotion. And commotion there was…
It didn’t take long after it was discovered that there was nothing but crumbs left on Santa’s cookie plate and in exchange some extra gifts under the tree, for all the kiddos to gather with wild excitement. Sissy and Potato Boy were a little more systematic in their approach. Lulu didn’t care, she found the first gift with her name on it and dug in.
And just as quickly as they had appeared, they were all off in different directions.
With the addition of a new family member this year, we also added a few extra special oranments to our tree…
Ornament from Nana & Grandpa O
Ornament from our dear friend, Mary Lou
With 2012 drawing to a close, we can’t help but look back on this past year and think – where the heck did it go??? If the old expression “time flies when you’re having fun” is true…then hold on to your hats, ’cause this next year with Peanut & the gang is going to take off!
What do you mean Christmas is over already?
Happy holidays to our blog readers…we hope you are all as blessed as we’ve been this past year!
After receiving a tip from a family friend, my wife and I ventured down a dusty road for the first time together in search of a house that was for sale by owner. The potential was there: wood floors buried beneath dated carpet, solid wood pocket doors surrounded by 100 year old trim, and a faded screen door leading to a covered porch complete with a white wooden swing. So, in July of 2011 my wife and I became only the third family to own this 100+ year old two-story farm house and surrounding acreage on a quiet dusty road in rural Iowa. What you’ll find on these pages is the story of what comes next.
