Even though Peanut is almost 3 months old, we’ve only gotten a true taste of what it means to be a family of 6 during the last couple weeks that we’ve all been home together. Prior to this, it was a “divide and conquer” approach for the DW and me. One of us would be with Peanut at the hospital (normally the DW) while the other was managing the household, work (in my case), and caring for the other 3 kiddos. But now that Peanut is home, I like to think we finally have all of the chaos in one spot.

While this is a huge sigh of relief for us, it is the start of something brand new for Peanut’s older siblings who only had limited contact with her in the hospital. The adjustment for Sissy and Potato Boy has gone rather smoothly. They are both old enough to remember when we brought Lulu home. At that time, they both thought that a new baby was going to be a cross between a Tickle-Me-Elmo and a toddler – something they could carry around, play peek-a-boo with, dress up in doll clothes, and make giggle. After getting over their initial disappointment they realized that Lulu was much more fun when she got a little bit older.

This time around their expectations were a little more in check. Sissy has been a great help in comforting a hungry Peanut, rocking her to sleep after a bottle, and helping out in the kitchen. Potato Boy, on the other hand, has become an excellent assistant. He’s all about pitching in where he can – helping find missing blankets, taking care of little household chores, and distracting Lulu – a true challenge for any one.

Speaking of Lulu, her response has been mixed. She goes from this…

…to this…

…to this…

..all within a matter of minutes. What else would you expect from a two year old?

Lulu and I were out at my parents’ place last weekend. I was trying to get a couple good photos of a calf we’re planning on selling this winter and Lulu wanted to see Grandma eat ice cream. The bull photo didn’t turn out half bad.

Cattle photography is actually an entire industry onto itself. You could write a book (there may be some out there already) on where the feet should be placed, the position of the head, the slope of the ground, the background, and on and on. One of the trickier items is that the ears of the calf should be pointed forward. There are tricks to doing this. Some photographers have someone stand in front to the calf with a mirror or pom-poms. Others have someone bleat like a goat or lamb. Basically, anything to grab the calf’s attention. What did I use to get our calf to point his ears forward?

Lulu, of course. She decided she wanted to take pictures with me, only she didn’t have a coat warm enough. So, we put her in an extra hooded sweatshirt we had and she walked around the pasture with Grandpa while I took the photos. The calf couldn’t take his eyes off of them walking around.

I’m wondering if Grandpa and Lulu shouldn’t tag up for Halloween this year. I think they would make a pretty good Yoda and Obi.

Is That Yoda or Lulu?

It’s hard to believe Peanut has been home for almost two weeks now! The entire time has been a blur. Despite the lack of sleep, we’re falling into a new normal routine here, and Peanut is growing like a weed. As of last Thursday, she weighs 7 lbs 3 oz.

Peanut Sleeping During The Car Ride Home

Peanut holds us to a pretty tight schedule. In order to get her all of the milk she needs, without putting too much in her intestines at one time, we’re still feeding her every three hours around the clock – even if that means waking a sleeping baby. Peanut is still on TPN (IV nutrition) for 14 hours a day as well. This is done overnight so that Peanut is connected to the pump and IV tubing while she sleeps and can still enjoy her day time activities (like tummy time) without having to worry about getting tangled in the IV tubing.

Finally Sleeping In Her Own Bed

Just because we’re home doesn’t mean that Peanut is out of touch with her care team. Peanut is currently on a 2 week rotation for her doctors at the UIHC and her local pediatrician. This means, one week we make the trip to Iowa City to see her GI team and Surgery team, and the next week we visit her local pediatrician. Additionally, there is a visiting nurse that stops by two or three times a week to help us with changing the dressing on Peanut’s central line. We’re also in frequent phone contact with the GI doctor to keep him current on Peanut’s day to day progress.

12 Weeks Old

There was some discussion during our last visit at the UIHC that Peanut may be approaching a point in her progress that we could let her sleep through one of her feedings in the middle of the night. That night is still a week or two off, but definitely a goal worth working towards.

Today is discharge day for Peanut!!! We will be leaving the hospital around noon today. 🙂 The Dear Husband got Sissy & Potato Boy on the bus, just dropped off Lulu at daycare, and is on his way to pick us up as I type.

We had a great last few days here at the hospital. As I mentioned before, the DH & I have had a lot of training over the past week to make sure that we’re comfortable with all the home care medical equipment that Peanut will require. We’re still a little nervous, but we feel like we’re pretty prepared. Now that Peanut has a broviac (instead of a PICC line which she previously had), she is now able to be off of TPN (and free from the pump) for 10 hours a day (9am – 7pm)!!! We celebrated on Sunday by taking Peanut and Lulu for a stroll around the hospital.

On the move with Lulu & Peanut – and free of all tubes, wires, monitors!

Lulu checking on Peanut to make sure she was enjoying the ride!

Peanut will also have a home care nurse helping us out three days a week. Which will be a WONDERFUL resource while we adjust to her new equipment and settle into a routine at home.

As we look back and reflect on the past two months, we have to give so much credit (and thanks) to the University of Iowa Children’s Hospital. I have no doubt that Peanut received THE BEST care possible. Point blank – they saved her life. She has had the most amazing team of neonatologists, surgeons, nurses, and dietitians. We want to give special thanks to some of Peanut’s NICU nurses. Jessica & Amy cared for Peanut during the most critical time in her health, and helped see us through the most difficult two weeks of our lives. Mikael, Tammy, Misty, and Lori all spent a lot of time with Peanut, provided us with a great deal of emotional support, as well as taught us so much about caring for Peanut with her condition. Thank you ladies – we are forever grateful for your care and friendships! We also have a wonderful COC (Continuity of Care) Nurse, Ann, who coordinated ALL of our discharge planning including lining up home care equipment, nurses, scheduling our returning appts, and best of all – handling our insurance company. She is truly amazing! 🙂

Peanut will continue to follow-up with her fantastic gastrointestinal & surgical teams several times over the next few months until her surgery.

So, our next update will be from HOME! I predict that over the next few days we will be extremely sleep deprived 🙂 but man is it worth it!

The last 72 hours have been busy for Peanut. As the DW mentioned in the last update, the NICU is very crowded right now and Peanut was listed as healthy enough to be moved out of the NICU and into a pediatric inpatient floor should the NICU run out of room. That moment came Wednesday afternoon and Peanut was transferred to her new room in 2JCP – for a while.

Surgery had scheduled Peanut’s procedure for the placement of her Broviac line (a central IV line) for Thursday morning. The Broviac will allow us to care for Peanut at home while she is still on TPN (IV nutrition). Not knowing how Peanut would respond to being intubated and sedated during the procedure, the surgeons wanted Peanut to spend her initial recovery time back in the NICU for one on one observation by a nurse. So after the successful placement of the Broviac, Peanut was back in the NICU she left less than 24 hours ago. Peanut bounced back quickly from the sedation, and was happily back on her full feeds just a couple hours later – all her feistiness comes in handy – and the DW and I were told that the NICU team wanted to keep Peanut in the NICU until she was ready to go home – maybe. But, not much later the NICU was running out of room (again) and Peanut was on the list of those healthy enough to move (again). So, late this afternoon Peanut was back on the road to her new room in 2JCP (again) where she will be until discharge.

All settled into her new room in the pediatric inpatient floor! Snug as a bug 🙂

The DW & I have already learned how to flush an IV line, and change her ostomy bag. More learning to come early next week when we will master how to run the IV pump, and how to change a sterile dressing on her broviac. Then (fingers, toes, legs and eyes crossed) discharge on Wednesday!

Peanut is 67 days old today, and weighs 2750 grams! That means she is officially above the 6lb mark – 6lbs 1oz to be exact! The past week has been all about improving Peanut’s nutrition. As I mentioned in the last post, the docs having been trying to find a way to fortify her milk in order to boost her protein and calorie intake. And I’m happy to report that Peanut is doing well on a mix of breast milk and progestimil – with NO dumping!

She is SOOOO snuggly!

Another goal was to get Peanut off TPN (total parenteral nutrition) before she goes home. We were on pace to achieve that, gradually stepping down on her TPN (NVN & Lipid) rates while increasing the amount of her oral feedings, however, she hit a point where she just wasn’t gaining weight anymore. She stayed at 5lbs 15.5oz for 5 days in a row. Yesterday, they decided to go back up on her TPN rates, which means she will come home on TPN after all. So, Peanut is scheduled for a surgical procedure to have a broviac (central venous catheter) placed in her chest first thing on Thursday morning. This next week will be A LOT of learning for the Dear Husband and I, so that we’re prepared to care for her NEXT WEEK when she comes home 🙂 That’s right – although they haven’t given us a specific day – they have confirmed (barring any unforeseen complications) that we will be bring Peanut home next week!

Peanut has also been a little anemic and teetering on the edge of needing a blood transfusion. So last Tuesday they went ahead and gave her some new red blood cells. She responded really well – the color has returned to her cute little cheeks and she seems to have a little more energy.

Sissy and Potato Boy came down to stay with me and Peanut last Friday night and Saturday. They were VERY eager to help care for Peanut, and the nurses in our hallway said that we have some of the best behaved kids that they’ve had there. Anyone who knows those two monkeys, knows that they have a lot of energy – so this was quite an accomplishment for them 🙂 We’re so proud!

Big brother feeding Peanut. He didn’t need to wear the gloves – he just insisted on it because it made him feel more “doctor-ish”.

Sissy is such a mother hen!

Apparently the NICU is very busy right now – with only 1 open room! So Peanut’s nurse practitioner told us this afternoon that she is next on the list to move out of the NICU to a pediatric inpatient floor for the remainder of her stay. She could be moved as early as tomorrow (Wednesday) morning!

Someone is two months old today…

It’s been a while since the last update on the kiddos’ pumpkin patch. Unfortunately, with Pip’s craving for squash, the dry weather, and the lack of attention, there isn’t much to show for all the kiddo’s hard work earlier this year. I had quickly walked through the patch a time or two over the past few weeks and didn’t like what I saw… heat stressed vines and no pumpkins.

But, the kiddos and I had last Saturday to ourselves and decided to go on a little adventure through the mess that was once their pumpkin patch – and that may be an understatement… though the pumpkins didn’t like the dry summer, some of the weeds really took advantage of last few weeks.

It was a good thing we did. First Sissy found these…

Then Potato Boy (he thought the tin snips was needed to cut the stems without breaking them)…

and even Lulu…

Not the “wholesale” amount the kids were hoping for, but still not bad for the lack of water and attention the last 3 months.

As it turns out, Peanut’s strand of Staph infection was MSSA (methicillin-sensitive Staph), and she finished her round of antibiotics yesterday. The infection has cleared up and the incision is healing nicely 🙂 Her weight is up to 5lbs 9oz now, and the doctors have been throwing around the “D” word during their daily rounds this week. That’s right – DISCHARGE! Although we’re still looking at a few weeks until we can take her home, it finally feels like there is a light at the end of the tunnel.

Now that they infection has cleared up, at this point the only thing the doctors can provide Emily between now and her next surgery, is nutritional support – which can be done on an outpatient basis. Our short-term goal is to correct her protein deficiency, and try to get her off of TPN (total parenteral nutrition) in the next few weeks. Right now she is getting the extra protein and calories she needs through the TPN. We’ve already tried getting the extra protein and calories by adding HMF (Human Milk Fortifier) to the breast milk. If you remember, two weeks ago that failed miserably and caused peanut to “dump” her feedings, which means the output of stool in her ostomy bag was greater than what she took in at her feeding. Last night we gave her some straight protein powder in her milk and it caused her to dump again. She spent the better part of the day today in NPO (Nil per os) status, which is a fancy way of saying they didn’t feed her until her dumping stopped. On to plan “B”. At 2pm they resumed her feedings at 20cc (2/3 of an ounce), she was at 40cc before the dumping started. Now they’re mixing her milk with progestimil (which is a formula specially mixed for baby’s who have a hard time digesting). It seems to be a success so far – her output at 5pm was about half her intake. We’ll see what the rest of the evening brings.

If they’re not successful in finding ways to add the extra protein and calories she needs in her oral feedings, then she will have to come home on TPN. Peanut will then need to have a broviac – a central venous catheter – put into her chest to administer her IV nutrition. Although it’s not ideal, it will be manageable. We won’t be able to bring her home until we’ve learned all we need to about caring for her with it, and there would be a nurse that will come by the house daily to check in with us. We would still bring Emily back every two weeks for visits with her gastroenterologist, neonatologist, and her surgeons. Talking with the surgeons this week, they said they are anticipating doing her surgery in two to three months from now.

All in all, the doctors are extremely happy with Peanut’s overall health and progress considering what she’s been through. We’re also seeing gradual changes in her maturity. She is having more consistent awake and sleep periods, sometimes awake for 2 hours stretches! She’s also starting to focus on faces, and turns her head to follow people as they walk across her room. She’s really is just such a little sweetheart – nothing seems to bother her and she is so content!

Peanut – 53 days old! Looks like she’s ready to have a conversation!

According to the Babycenter.com, if Peanut was still in my belly (we’re just over two weeks out from her due date), they would compare her current size/weight to that of a honeydew melon. Throughout my pregnancy I would get weekly emails comparing her size to various fruits or vegtables…the kids, as well as the DH and I, found this very entertaining! Well, our little honeydew sure is growing! She is now 7 weeks old, and is 5lbs 3oz and 17 inches long! Despite last week’s set back with her intolerance to fortifier, she is growing just fine – slow and steady.

Very alert after her feeding! She now up to 1 ounce per feeding.

You can see she’s really filling out!

Wednesday was a challenging day for Peanut, as she was having problems with low body temperature, shallow breathing and was very tired. Earlier in the week, we noticed that her incision was becoming increasingly “angry” looking (as her doctor put it). And on Wednesday, along with her other symptoms, the incision looked much worse. Both the surgeons and her neonatologist agreed they thought there was an infection brewing, so they started a course of antibiotics. Within a few hours her body temp came up (with some help from a warmer bed and snuggling with daddy) and she was breathing easier. Thankfully, the blood cultures all came back negative for infection in the blood stream, however, her incision tested positive for Staph infection. It’ll take another day or so to get the results back on exactly which strand of staph that it is – MRSA (methicillin-resistant Staph) or MSSA (methicillin-sensitive Staph). The antibiotics that she’s currently on, gentamicin and vancomycin, would treat and kill either type of infection.

The surgeons were pretty surprised that Peanut got an infection this far out from her last surgery (1 month), and were not happy with the way the incision was healing. Their theory is that Peanut is not properly absorbing the protein in the milk. Protein and zinc are both vital in helping the body heal, so they increased the amount of protein and zinc in her IV nutrition. The incision looks much better today, it’s obvious the inflammation has gone down considerably, however she still has a lot of drainage.

Peanut also had a fluoroscopy colon series contrast x-ray done yesterday (I had to have our nurse spell out the name for me and repeat it several times). With this test, they were able to look at how much of a rectum she has left so they can determine a time frame on when they will do the next surgery and what type of procedure they will do – whether they have to access through the belly or the anus to connect the small intestine. The results showed that she has all of her sphincter muscles intact (which will help with control) as well as a short stump of rectum above the sphinter. The surgeon said ideally they would have liked to have had more rectum to work with, but the amount she has left is enough that they can reconnect the intestine through the belly, rather than the challenge of accessing it through the anus. Still no word on when they might do the next surgery…we need to get the staff infection cleared up and incision completely healed before they will determine that.

Tomorrow is the first home game for the Iowa Hawkeyes (vs. ISU) – we’re told it gets a little crazy around here on game days!