Weekend In Photos & More…

Sorry for my absence on the blog. Things are increasingly busy around here with work and school for Henry and I. But, it sure has been eventful! Last week Jack started crawling. He gets more brave each day and is getting from one end of the house to the other now. He also started pulling himself up!


Even with all of his new tricks, he hasn’t been feeling great. We spent Tuesday night in the peds unit after he spiked a high fever and wasn’t breathing well.


He still has a nasty cough, but hopefully is on the road to recovery. This week we go to Riley to see an ENT to follow up on his hearing and fluid in his ears. We also will have our first appointment with the feeding team. The feeding team consists of a dietician, speech therapist and occupational therapist. We will hopefully come up with a plan for staring more solids for Jack.
We had a pretty laid back weekend. But, we did make some delicious chocolate chip cookies!

We ended the weekend with our traditional grocery shopping. I told
KP he could pick out his dinner.
What did he choose? Hotdog, red pepper, strawberries, blackberries and chocolate milk.

We hope you have a great week!


Weekend In Photos: Pittsburgh

I’m attempting my first weekend in photos post. Before I begin, a few warnings: I’m typing this on my iPhone as we travel and all pics are from my phone. So, this is nothing fancy!
This weekend we packed up and headed to Pittsburgh to visit Maggi and Greg. Saturday, Henry went snowboarding. While he was gone, Maggi, Jack and I did some shopping at Ikea. Jack was definitely a fan!

When we got home from shopping, we decided to make some Pinterest recipes!

The rolo cookies were delicious!
We also made these delicious pretzel bites.

Today, we went up to Mt. Washington to show the boys the view.


Did you know kids are allowed in bars in Pittsburgh?

The boys had fun!

We had a great time and loved seeing Maggi and Greg and their new house.
We are headed home now. One boy is sleeping, the other still awake!

Thanks for a great weekend, Mag and Greg!

Car Seats

Happy Wednesday! This morning while getting the boys ready for daycare, I looked at Jack in his car seat and couldn’t believe how big he looked!

This is what he looked like when he came home from the NICU.

He is getting very heavy to carry around in his infant seat, but it’s so convenient in the winter. I hate getting kids in and out of winter coats in the car. I’m really hoping we can make it through the winter in this seat. But, I know he won’t fit much longer!

If any of you mommy readers have recommendations for a good convertible car seat, please let us know. Kendrick still rides in his, so we will need to purchase a new one.

Have a great rest of the week!

We’re still here!

I hoped to post a weekend in review post like Kendra and Misha, but our weekend was not so fun or exciting. The stomach flu made it’s rounds through the Peña home. I starting getting sick late Thursday night. Jack started on Friday, Kendrick on Sunday and Henry is in bed now not feeling so well. So, if I did post any pictures it might be of puke buckets, loads of laundry and Lysol. Unfortunately, I did not have time to snap any of those pics and you’re probably glad! Luckily, the bug didn’t last too long although it was a little different for each of us. I’ll spare you all the details, but things are looking up. We are just hoping Henry feels better in the morning!

I did want to give an update on Jack. Things were going great before this bug. We were running his feeding pump for around 12 hours each night and he was taking bottles fairly well during the day. He also started back at daycare last week and that was another adjustment. However, with the stomach bug we stopped bottles for a bit and were running Pedialyte through his feeding tube.  It has been a slow process getting him back to tolerating his normal rate on the feeding pump, but we are pretty much there tonight. He also finally took a whole bottle this evening. Hopefully we will continue to progress this week. Once Jack is tolerating bottles well through the day again, we will be able to increase the amount of formula in each  bottle and decrease his time on the pump. I feel very inpatient sometimes and wish we could move more quickly. But, I have to remind myself it’s only been a little over a month since the tube was placed. We have made excellent progress to this point. I stay in close contact with Dr. Engum’s nurse and they also agree things are going very well. Jack will go back to see Dr. Engum in February and at that point we will switch his G-J tube to just a G-tube. Even when he is tolerating bottles and off the pump, the g-tube will stay in a few months just to be safe. Adding to all the fun are some new teeth coming in. Jack has his bottom two teeth, and his top right tooth has popped through and now the top left is also coming in. I know this also leads to some of his feeding issues. Kendrick was such a happy baby, we never knew when he was teething. Jack is a different story for sure! This picture is not the best quality, but it does show off his new teeth!

That’s all for now! I’m still working on Jack’s month by month growth post. The weekend of sickness has set us back. Today also marked the start of a new semester. I am entering my final semester in my master’s program. During this semester I am completing my practicum at Purdue School of Nursing. This means I am teaching at both St E and Purdue which makes for a busy semester. Henry is also taking an online course this semester. So, maybe by May we will be able to accomplish the post!

What Not To Say…

One of the blogs I follow is called “Life With Jack”. Jack is a fellow preemie who was born at 23 weeks gestation weighing 1lb 2oz. While his size at birth was similar to our Jack, the difference between a baby born at 23 weeks gestation versus a baby at 31 weeks gestation is enormous. Jack from Life With Jack, faced many more struggles than our Jack and spent over 100 days in the NICU. He has made amazing progress and is continuing to progress as an adorable 2 year old! He also has some wild hair just like our Jack! You can read more about him here Life With Jack

His mom wrote this post around a year ago and I feel compelled to share it. Because of the difference in gestational age and complications, not all of these things apply to my Jack. However, as Jack is now one I am beginning to get some of these questions. Yes, Jack is one and is not yet crawling or eating much. But, that’s okay. We are working hard. However, some people just don’t understand that! These comments mostly come from strangers. I have NOT had anything hurtful come from friends or family. However, I still feel compelled to share another preemie mom’s perspective and in some way, to vent some of my feelings.

Today at the mall, Kendrick was playing in the play area. There were a few babies younger than Jack crawling and even walking. Some of the parents stared at Jack while I had him on my lap and it was obvious he was not doing these things. I got even more odd looks when I asked one of the older children to please not touch Jack. Seriously? Mind you, I had Jack in his car-seat away from everyone at this point and these kids were crawling over to him. I am a complete germaphobe, but hate to shelter Kendrick so much. So, I do occasionally let him play at the mall or other germy areas! 🙂 But, if I ask your child not to touch mine, don’t give me a dirty look!

Anyhow, take this how you please. As I said, this isn’t in response to anyone in particular, just an interesting post. It also puts things in to perspective for me because although Jack has had complications, he has been VERY lucky. There are so many preemies who are much more sick. There are so many children who are not preemies who are much more sick. We are VERY lucky indeed.

What Not to Say

Note: This post was originally published in January 2011 and I continue to update it as I see areas in which to educate. I have been thinking about this post literally for over a year. I have heard some crazy and downright irritating things come out of people’s mouths regarding Jack and having a son like Jack. I know for the most part, people are clueless and are only trying to make some sort of connection to our situation. But, words have POWER and can literally set the tone for days and weeks. So here is my personal list of what not to say to a mom of a preemie or child with special needs:

-Is Jack doing _______ yet? I literally get this question on a weekly basis. It is such a downer of a question for a mother whose child is definitely on his own timeline when it comes to development. And on top of that, I don’t know why our culture is so VERY obsessed with following this very specific chart or guideline for things like rolling over, crawling, walking, talking, etc. People are so competitive. Even with a healthy, full-term child, people can be absolutely ruthless when it comes to comparing their children and who meets a milestone first. I mean, just look at Facebook or go to a play date. The topic of conversation most certainly revolves around what my amazingly brilliant child is doing. “So my child is crawling! Well isn’t Jack around their age? He’s not crawling yet? Oh… well… um… he will get there eventually”. Trust me, I get these sorts of questions constantly from therapists and follow-up clinics and rightly so. But I don’t need a constant barrage and reminder that my son is developing at his own pace from the common layperson.

-Oh my son (or cousin, sister, whoever) was a preemie. At this point I usually ask at what gestation they were born. You’d be surprised at the answers I often hear. “Oh around a month early” and “It was so scary” and then proceed to tell me how horrific it was to have a baby at 36 weeks and spend a couple days in the NICU. Well I don’t know if I really need to explain why this comment is so irritating. Jack spent 100’s of days in the NICU. And here is the truth, you really can’t compare the situation to Jack’s unless the baby was a micro-preemie. Comparing your personal situation is very tricky, so it’s best to tread lightly.

-I know a preemie who is like a NORMAL child now. What is normal? And because Jack has health problems, it makes him like some sort of unfortunate alien? Humans are so cruel to the weak, constantly putting them in a separate class.

-I had a horrible pregnancy. This comment is one of those annoying ones that begs an “oh really, why?” I then normally hear something about how the person was so uncomfortable, had morning sickness and then wasn’t able to breastfeed. Peppered in the conversation are outrageous statements like “I was basically starving my baby because he/she wouldn’t breastfeed.” In my mind, I want to yell out “why didn’t you give the baby some freakin’ formula!” When your child doesn’t eat or have the ability, the whole breastfeeding v. formula debate is pretty much a non-issue and is rather trivial. And when your pregnancy was ended rather abruptly, after months of illness, it’s very hard to relate to someone who had a full-term pregnancy.

-So now that Jack is almost 2, he’s pretty much ok now, right? Really? REALLY? Can I please chalk this up to someone just being a complete idiot? Too harsh? Maybe. But that’s really how I feel sometimes. I spend a whole lot of exhausting time explaining each and every detail of Jack’s health history to people. It’s like they demand I prove X, Y, and Z to them. I get questions like “well I thought you said Jack was eating now?” Do I really need to explain the intricacies of oral trauma and the psychological effects it has? Do I really need to explain why preemie lungs are susceptible to pneumonia and NO, it is not good for Jack’s immune system to get sick now and again! It doesn’t “build up his immunity!” Many babies that are born extremely early, cannot simply “grow out” of their prematurity. There are often long lasting impacts.

-Does Jack have a short life-expectancy? This has to be one of the most hurtful questions one could ask. Does a mother ever want to be asked about the possible death of their child? It is really a sick, twisted question when you think about it. It totally takes curiosity to an inappropriate place and covers what truly matters – the heart and feelings of the person being asked. Just because we have been so close to death’s door with Jack, does not mean we carelessly talk about life-expectancy or even quality of life for that matter.

-Complaining, of any sort. I have seriously debated shutting down my Facebook page because I just can’t stomach the “wah wah wah” complaining status updates I read through. I am especially sensitive to pregnancy related complaining. I seriously debate whether I should comment or not each and every time I read a complaint ridden status update. But I normally talk myself out of it, thinking it’s not worth my time. And definitely please don’t complain in front of me. Please don’t complain about your healthy children, AT ALL. Just don’t do it, because it shows how out of touch one is with reality. It shows that the person has no perspective on life, the frailty of it, or how good one has it (especially in America). It shows how self-absorbed someone is. It is such, such a turn off to me.

-Comments about Jack’s appearance. Here is another area that can be very touchy. Preemies go through many things, medically speaking, that can alter their appearance. For instance, our son has two shunts to regulate his hydrocephalus which was caused by brain hemorrhages on his second day of life. We have actually had people say to us “wow! those shunts are sure big!” Not, not good. Many preemies also have misshapen heads (from being outside the womb too early and various other reasons) that require helmets to reshape their skull structure. And most micropreemies won’t have those pearly white baby teeth because of the intense amount of antibiotics, intravenous nutrition, and liver medication that is used to save their lives. It’s a small price to pay. The eyes are another area where people often feel the need to comment on. Our son has two separate issues going on with his eyes. He has ROP (Retinopathy of Prematurity) and the brain bleed makes his right eye very weak. He will eventually need glasses. We are just thankful he isn’t blind! A lady once exclaimed to me (very loudly) that “he has a dancing eye!” Not, not good. This list could go on and on. Jack has a feeding tube. Try using a feeding tube in public… not fun. I could talk about the need for adaptive equipment and mobility issues. That Jack will probably walk ”funny”. We are just thankful that he MAY be able to walk! People love to comment about appearance. We certainly don’t need someone pointing out any of these things to us! And just look at the picture as the header of this blog. My boy is beautiful.

-Comments about our so-called lack of a social life. This happens more to my husband than me, but we are constantly getting questions about why we aren’t at certain events, happenings, and get-togethers. Being the parent of a child with health problems is very, very time consuming and exhausting. Jack is tube fed, doesn’t have much mobility, has constant therapy, and sprinkled in there is some play-time. It’s not easy for either of us just to drop everything and grab a coffee with a friend. We have to plan it out with Jack’s schedule and allow each other to have enough down-time to get some rest. I don’t think my husband has rested in 2 months. He doesn’t get a break. When someone says we are “stuck up” because we’re never able to hang out, it is really irritating and mean. When someone gives us a hard time for not being able to go out to something, it is hurtful. When someone asks “where’s Jessi and Jack?” when Jon is out alone, it is extra careless! For some reason, people refuse to comprehend that Jack can’t be out in public during cold and flu season, no matter how much we explain things to them. This gets exhausting. We would just love to get out together as a couple, too. It’s hard to find a babysitter that knows how to care for a feeding tube and g-tube emergencies. It is no fun showing up at family-centered events all by our lonesome. We often skip these to be able to spend time together at home. Our lack of a social life is not a reflection on our thoughts or feelings towards you (although in our limited time, we choose to be around positive people), but purely our reality while being Jack’s parents.

-Placing Blame. There are many medical reasons why premature birth happens. Most, if not all, are out of the mother’s control. The only exception I can think of is illegal or overdose of harmful substances (alcohol and drugs). Beyond that, it’s really not up for judgement. I just read tonight on Facebook (yes again, oh the joys of Facebook) where someone was speculating why so many women are having preterm birth. She wondered “if prego mamas are just doing to(sic) much/doing activities that our mom’s wouldn’t have dreamed of doing while they were pregnant.” Can you imagine how I felt when I read this? I dreamed and discussed with my husband every possible (awesome) comeback I could think of. But you know what? It’s not worth it. I just de-friended. Thank goodness for the de-friend. To insinuate that I caused the premature birth of my son because I was “maybe doing too much” is pretty much akin to saying that all us preemie moms almost murdered our own children just by living. And trust me, my four months of bed rest pretty much flies in the face of this so-called “Facebook Friends” assessment.

To end, here are some things you should say:

-How are you doing?

-How is Jack doing?

-Is there anything I can do to help?

-I am praying for you!

I know I could add more to this list, but I just felt an overwhelming sense this morning that I had to share. Please don’t take your words lightly. If I ever say something that is offensive, let me know! I don’t want to remain ignorant to someone’s pain or ways I am furthering their hardship by the words I speak.

May the words of my mouth and the meditation of my heart be pleasing in your sight, O LORD, my Rock and my Redeemer. Psalm 19:14

All About Kendrick

Over the past year, we have focused a lot of our energy on Jack.  It was hard not to when he was in the hospital for over twelve weeks of his first year. We tried very hard to keep things normal for Kendrick. We had wonderful help from friends and family. We kept him in his routine as much as we could. Through it all, he has been such a strong and amazing four-year-old. A lot of people would ask how Kendrick was dealing with Jack being in the hospital. For Kendrick, I think it was normal for him. Jack spent eight weeks in the hospital right after he was born, it was our normal.  Kendrick loved visiting the NICU and it never seemed to bother him. When Jack was at Riley, Kendrick was never afraid of the hospital room or the wires and IV lines. He did not hesitate to climb up and give Jack a kiss. Just the other day I was dressing Jack after his bath. Kendrick looked at Jack’s big scar on his belly and said “Oh no! What happened?” I explained the scar was from Jack’s surgery. Kendrick then said “Oh Jack, I’m so proud of you. You are so brave!” He then said “Just like me!”  Kendrick has been brave as a big brother. It’s so fun to watch the two of them as Jack is getting older. I know they will be the best of friends! Though I am a bit worried Jack will be beating him up before we know it!

So, this post is all about Kendrick, or KP as we call him. I conducted an informal interview as he was zooming through the living room with his cars yesterday.

So Kendrick, How old are you? 4

What’s your favorite color? Blue

What’s your favorite food? Chicken Nuggets and Fries

What’s your least favorite food? Mashed Potatoes and Macaroni and Cheese

What’s your favorite snack? Fruit

What’s your favorite movie? Cars 2

What’s your favorite toy? Cars 2 Cars

What’s your favorite animal? Ones that don’t stink

What’s your favorite thing to do? Play with you (mom) and Jack

Where do you go to school? High School

Who is your favorite teacher? Miss Deborah

What do you want to be when you grow up? A doctor

What’s your favorite book? Goodnight Moon

Where’s your favorite place to go? Pappy’s House

If you had a lot of money, what would you do with it? Pay for a lot of things at the store

That concludes our interview. I was especially surprised at the animal answer. He keeps us laughing on a daily basis. Thanks for being a great big brother Kendrick!