It’s been almost a week since we posted our last update – and it’s been a fairly quiet week at that. Peanut has all but put her surgeries behind her and the focus has shifted to how her remaining intestines are going to work. Slow and steady on straight breast milk seems to be the path, as an attempt to add a human milk fortifier on Tuesday to help fatten her up was a complete failure. The fortifier caused Peanut to flush everything out of her system in a short time instead of digesting it properly. Tough, that won’t keep the doctors from trying again in a few weeks as her body continues to grow and adjust. Although she lost a few ounces from her body not tolerating the fortifier, she’s come a long way over the last few weeks and a few setbacks here and there are expected.

Peanut has also moved into an “open air” crib, as she is now able to maintain her own body temperature at room air temp. Currently, she has to wear two layers of clothes, a hat, and is swaddled in a blanket to maintain the right temperature, but as she gains more weight, she won’t need as many layers.

We had the chance over the weekend to bring the kiddos to Iowa City to see Peanut again. It was also the first time each of them got to hold her. The kiddos were sitting in the corner of Peanut’s room watching a movie on the laptop and it was feeding time. Peanut was just situated on my lap with the bottle when Lulu looked up from the movie. Not only was it the first time she’d seen Peanut take a bottle, it was the first time she’d seen me hold Peanut. She had to get a better look and make sure no one was cutting in on her territory. In less time than any of us could react, Lulu was off the floor, across the room, up on my lap next to Peanut, and “holding” the bottle. After the bottle was empty, Lulu announced “I’m a good big sister. I want to hold my baby sister now. She’s so little.” How do you say no to that?

Lulu Holding Peanut

Potato Boy With Peanut

Sissy Holding Peanut

How did Peanut respond to all this? She slept a lot the next day.

Peanut has been doing very well the last few days and continues to gain weight – 4lb 5 oz as of yesterday. Little things are signs of big progress – recently, she’s starting to wake up hungry and take at least a portion of her feedings by bottle – earning her the nickname “Rock Star” by her nurses. (Though the one bottle I fed her wore her out so much that she slept right through her next feeding and needed to be feed by tube.) The doctors have been happy with her ability to digest the milk so far, but are still watching how the loss of intestines will affect Peanut nutritionally.

Until Peanut is able to get up to “full feeds”, she is receiving a majority of her nurtition & lipids (good fat) through TPN – Total Parenteral Nutrition or IV Nutrition. The doctors are also keeping an eye on how her short intestine, along with being on TPN effects her other organs, like her liver. Peanut’s labs recently showed that she had high liver enzymes. This means her liver is working too hard to move bile through the ducts to the gallbladder and small intestine. Bile helps the intestines breakdown fats (like the lipids found in TPN). On Monday, she started on a medication called Ursodiol, and in one day it brought her enzymes back to a normal level. As a precaution, she will likely continue on this medication until she’s completely off of TPN.

Peanut also had her eye exam yesterday for Retinopathy of prematurity, also called ROP. ROP is a disease that affects the blood vessels in the retina in a preemie’s eyes and can cause problems ranging from nearsightedness to blindness – just think of all preemies you’ve seen as the young kids with coke-bottle glasses. Luckily for Peanut, her eyes checked out just fine.

Peanut Dressed and Snuggling With “The Zaky”

Now that things have calmed down a little bit, we’d had time to notice some of the more unique things in Peaunt’s room – one of those things would be “the Zaky”. You might have noticed the big blue pillow-like thing in some of the pictures we’ve shared – That’s “the Zaky”. Think of it as a large arm length glove made out of a soft blanket and filled with the same material as a Beanie Baby. During some treatments in the NICU, babies can’t be swaddled (like when Peanut was under the bili lights or when she had her silo), so a Zaky is used to comfort them and give them the sensation of being held. I’m not sure why it has fingers – apparently they used to make them in a tan (flesh) color, too. Creepy. I’m just glad that Peanut seems to be comforted by it.

This is the first official post from me, the DW (Dear Wife), as I am affectionately called by my DH. I will be guest blogging with updates of our little Peanut’s progress. Previously, we were updating our family and close friends via email, but we thought it was time to update our blog and start posting her progress here instead.

Here’s a little recap of the rollercoaster ride that has been the past few weeks: As we mentioned in a previous post, Peanut decided to arrive a little early, at 30 weeks 5 days gestation on July 20th. Surprisingly, the first 10 days were smooth sailing for Peanut, as she was growing stronger each day and gaining weight like a champ. In the early morning of July 31st (11 days old), Peanut started showing potential signs (bloody stool, distended stomach) of an intestinal disease called NEC or Necrotizing Enterocolitis – the death of intestinal tissue. X-rays confirmed that she had a perforated bowel (caused by the tissue death) and within just a few hours of the initial symptoms, she was in surgery. Over the next 8 days, Peanut had three surgeries, and lost about 10 inches of her small intestine (the ileum), her appendix, her large intestine (including the cecum and all of her colon) leaving only a rectal stump for reconnection surgery later on. She currently has an stoma (or jejunostomy to be exact) on her lower right abdomen to get rid of her waste.

Needless to say, it’s been a rough couple weeks, but our peanut is well on the road to recovery. Wednesday she was taken off all respiratory support (you should hear her cry – she has a great set of lungs on her)! She also resumed feedings after 14 days of bowel rest. She is digesting the milk very well, and graduated to an ostomy bag/pouch yesterday. We’re also able to hold Peanut again, so we’ve been enjoying snuggles and kangaroo care with her.

Looking ahead, Peanut will need another surgery later this fall to correct the ostomy and connect the small intestine to the rectum. Until then, the plan is to continue to increase her feeds as she tolerates and for her to grow bigger and stronger. They’re not sure just yet if she will be coming home between now and the next surgery, or if she will remain here throughout the entire Hawkeye football season. In the weeks, months, and years to come we will work closely with a pediatric gastroenterologist and nutritionist to monitor her digestive and nutritional health. Some children who have lost this much bowel can suffer from short bowel syndrome, but it’s too early to tell if that will be the case with Peanut. We remain hopeful that she can lead a fairly normal life in regards to her diet/digestive needs.

Peanut at 24 days old

We’re extremely fortunate to have had tremendous support from our family helping out with Lulu, Potato Boy, and Sissy, throughout these past few weeks/months. The kids have really enjoyed their time with the grandparents, aunts/uncles, and cousins – which made this experience a lot easier on all of us! Now it’s time to settle back into some sort of routine as Peanut’s health is improving, and Potato Boy and Sissy are starting back to school on Monday. Sundays and Wednesday’s are the DH’s days to be at the UIHC with Peanut, while I will be at home with the other three rascals. The rest of the days, I will be bunking with Peanut at the hospital. 🙂

With the events of the last few weeks (more on that tomorrow) I’ve been a little behind on some of the updates I was originally going to post a while back. There’s quite a list at this point – even when things are normal, there’s a ton of things going on this time of year – but I’ll just start with one today.

Around here, the end of July always means it’s county fair time. I mentioned a while back that Sissy was working with a steer as a 4-H project this year. To her credit, she really stuck with it. Like most everywhere else, this summer was hot, and working with Cubbie in the heat wasn’t a treat most days. Let’s just say it turned out to be good conditioning for fair week as it came in as some of the hottest days of the summer.

The schedule for 4-H steers at the fair is rather involved. The fair doesn’t officially start until Tuesday, but 4-Hers are asked to help set up and bring in their tack on Sunday. All of the livestock needs to be in place and checked in on Monday morning. Tuesday is a day of waiting. Wednesday is show day and the steers are sold on Thursday.

All of this was new to Sissy so no one was sure if by the time Wednesday rolled around she’d be ready to go or a nervous mess. I’m guessing it was a bit of each – and since the temp topped out at 101 (actual – who knows what the heat index was) about the time Sissy entered the show ring there was no such thing as a red-faced nervous sweat – that’s just how everyone looked that day.

So, how’d she do? Well, Cubbie stood second in class. Sissy handled herself and the steer quite well for a rookie. More importantly, she made it in and out of the ring with a desire to learn more and do it again. (Selling Cubbie the next day at the auction put a bit of a damper on things, but not to worry – Sissy was picking out names for next years steer before she even made it home that day.)

A Good Perspective Of The Size Difference

Concentrating On The Basics

Standing In Second Place

If Sissy Was Nervous, She’s Not Anymore

There’s been a lot going on this week… so much that it’s been difficult to get any of it listed on here. Peanut – as she’ll be called going forward – is one week old today and still in the Neonatal Intensive Care Unit at the University of Iowa Children’s Hospital, so I spent all week with her. Slowly, but surely, she continues to improve. The DW was released from the local hospital and able to join us earlier this week. The rest of the kiddos have spent the week with family – who were sure to get Sissy and Cubbie to the fair (more on that to come).

But, this has to be one of the highlights of the week…

I don’t have a nick-name for her yet, but after insisting on coming into the world 9 weeks early and throwing us all for a loop (she already had the six of us sleeping under five different roofs last night) I’m sure I’ll come up with something fairly quick. So, without further ado…

Our Newest Addition

Apparently Pip was embarrassed when I told the story about her getting sprayed by that skunk…

A Skunk To Add To Pip’s Collection

No Flash Back Friday this week, but you will still get a little glimpse of the house. LuLu grabbed the camera last weekend and started snapping away. I hadn’t realized how many photos she had taken until later when I had to clean over 200 pictures from the camera. One thing is for sure, she’s not a child prodigy when it comes to photography – I can’t tell you how many photos she took of the floor. But, to give a girl a chance, here’s the world from LuLu’s perspective.

The Kitchen Chair

The Fridge, Complete w/ Animal Magnets

The View Of The Pumpkin Patch and Pasture From A Kitchen Window

Sissy Being Silly

The DW Taking A Photo Of The Photographer

The Floor (One Of Numerous Shoots)

The Dinning Room Chair

Looking From The Living Room Into The Dinning Room

The DW On Bed Rest

A Cow

Not bad for a two year old. For how many shots of the floor she took, I was surprised how few shots included her fingers. Maybe I should make her my full time photographer for this site.

LuLu – Your Host

We have a problem in the garden. Over the coarse of the last week, I started noticing zucchini and summer squash either missing or half eaten. I first noticed it one night while LuLu and I were out burning off a little extra energy. LuLu loves to pick the summer squash, so she made a beeline from the house to the garden. When we got there we noticed three or four half eaten summer squash on the vine and a couple zucchini that were also chewed up – this was way too much damage for the Cucumber Beetles.

A Half Eaten Zucchini

The garden is in the far north east corner of our property and is bordered on both the north and east sides by corn fields, so it wouldn’t take much for a raccoon or skunk to slip into the garden at night undetected. There were two summer squash that were untouched at that point that were just a day or two away from picking, so I told LuLu we’d have to come back and check on the squash the next night – the next night those two squash were gone.

I figured we’d lose a little produce to the wildlife around here. Even if we lost a 1/3 of the squash and zucchini to whatever critter was stealing it wasn’t nearly as bad as fighting the crazy squirrels and bold rabbits we had when living in town. But, I didn’t plan on being double crossed by the one animal I thought was helping us.

I started growing suspicious when I noticed some scratch marks showing up on a couple of the kiddos pumpkins. We all know how closely Pip -the guard dog- watches that patch for any activity.

My suspicions were confirmed this yesterday.

Caught!

No Guilty Conscience Here

So it turns out I was double crossed by my own security system. But don’t worry, apparently karma hold true for dogs, too. I was greeted at the front door this morning by Pip… and her fresh coat of skunk spray.

We could have picked a better year for the kiddos to have started out with a pumpkin patch. With the lack of rain and high temps there’s been a few days when things weren’t looking so good – it’s hard to stay excited about a wilted vine day after day. There’s only so much watering and weeding that’s fun when you’re that age. Even on the days the vines were watered they’re still wilted in the afternoon heat.

Sissy Watering The Pumpkins

But, I think things have turned a corner. Late last week Sissy noticed something while watering. Pumpkins!

One Of The First “Big Max” Pumpkins

The hard work is finally showing some return for the kiddos.

A Second “Big Max”

With the addition of a couple new soaker hoses and tiny pumpkins setting on all over the place, I’m expecting a renewed excitement in the project.

Another Pumpkin

I’m wishing I had kept a little closer tabs on what seeds were planted where this spring. It was a bit of a free-for-all the night the kiddos planted everything. It’s pretty easy to identify the “Big Max” by the leaf on the vines, but there’s a couple other varieties of pumpkins that I’m not sure about. Plus, there were a bunch of gourd seeds from last years gourds that were mixed in. There were also a few muskmelon, watermelon, and butternut squash seeds in there somewhere. I found one watermelon vine, and I think it’s the only one. I guess time will tell with the rest of them.