TWO!

What a difference 2 years makes! ImageImageImage

I am not sure where to begin! Jack had his 2 year old well visit on Tuesday. At this appointment he weighed in at 19lb 12oz. I am not confident we got a good length, but he was right around 30 inches.

His pediatrician is so laid back and so happy with his progress, but he is still not even on the adjusted preemie growth chart for height or weight. He is gaining slowly and steadily. However, it looks like a visit to an endocrinologist is in our future due to the lack of catch up growth.

Friday, we see the developmental pediatrician at Riley. Jack has made soooo much progress in the eating category. He will try most foods and has some really good days of eating. However, we are still working on the amount of food he is eating. Though his weight gain hasn’t been what we wanted, his chewing abilities and sensory issues have improved so much. I am anxious to see what the team at Riley will say Friday.

Since learning to walk 3 months ago, Jack is running and almost jumping. He loves to kick as throw his football and almost do a cartwheel (don’t ask). Because he is doing so well, he has gone from weekly physical therapy to just once a month! We are working on stairs, which are difficult due to Jack’s size.

Jack is talking more and more each day. He is also putting more and more words together. I was telling him the other day I could not believe he was going to be 2. He looked at me and said “Ellie is 2!” Ellie is is best pal at school. I ask him every day, how was school? What did you do at school? His response “Ellie!” He loves to play with the iPad. He knows how to get from app to app and even how to start up Netflix. He really enjoys the Fresh Beat Band! It amazes me how quickly kids can pick up technology.

The winter storm advisory seems fitting today. The night Jack was born, we had a terrible snow. It took YaYa several hours to get Maggi from the airport to Lafayette. I remember watching the snow from my hospital room. So, today’s stormy weather is not a shock. The kid likes attention!

Happy Birthday Jack. You are one amazing boy!

Danielle1

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21 Months!

Jack turned 21 months on Thursday. It was a BIG day in a number of ways. We started the day extra early with a trip to the Riley Developmental Clinic. We spent over 3 hours with a doctor, speech therapist and dietitian. We had been seeing a feeding team here, but something just told me we could be doing more and he needed more help. So, I called our pediatrician’s office and we talked about Riley’s clinic and also a clinic at St. Mary’s in Evansville. The Riley clinic called back a few days later and the soonest they could see Jack was November 15. I went ahead and scheduled the appointment, but also was placed on a cancellation list. A few days later, last Tuesday to be exact, my phone rang and it was the developmental clinic saying they had an appointment available Thursday. Of course we took the opportunity and plans came right together. A colleague was able to cover my clinical, Henry took the day off and we arranged for Kendrick to be dropped off early at school.

We started off meeting with the developmental pediatrician and a dietitian. We spent over 1 1/2 hours talking about Jack’s current eating and how to start his new plan. His 21 month stats were not too bad. He gained quite a bit of weight in the last month. He weighed 18 lbs 12 oz and was 29.5 inches tall. His weight for length fell in the 10th percentile. The pediatrician wanted this more in the range of the 25th. After we met with the pediatrician and dietitian, we headed across the hospital and down to the basement to see the speech therapist. She actually watched Jack eat and we spent another hour or so with her. We learned so much and have a lot of work to do with Jack. I think our key take away points include the following:

  • Jack has aversions to food due to his history of severe reflux. Feeding has not always been a pleasant experience for him.
  • Jack also has some sensory issues when it comes to food, but he has made great strides in this area.
  • Jack has weak oral motor skills. He cannot chew food effectively. This is why he often spits food out, he can’t chew it well enough to swallow.
  • Jack is at a high risk for aspiration. We may do a swallow study in the near future.

Our new plan is pretty detailed. Jack has 5 meals a day. At each meal he is offered 3 foods and high calorie milk. If Jack doesn’t drink all of his milk, we make up for the amount in a bottle. We also have a lot of new recipes for increasing calories. We have a whole stack of papers with tips and tricks. Consistency is the key and we have to keep Jack on schedule. This means starting our day with breakfast at 6:30. We also know Jack has the tendency to be an attention seeker, so we must ignore his bad behaviors. This includes when Jack put pudding in his hair, like he did during the appointment. At one point, the speech therapist said “he is just too smart, that’s the problem!” They also said that it takes a normal child 10-20 times or more to accept a new food. For Jack, they said this is more like 50-100. WOW! If this doesn’t teach me a lesson in patience, I’m not sure what will!

The developmental pediatrician also looked at Jack’s development as a whole. She was pleased at his social skills and speech. She was concerned about him not walking and said very matter of factually that he was severely delayed gross motor wise. Jack has a sacral dimple which can be a sign of spina bifida. When he was a few months old, we had an ultrasound that appeared to be normal. However, the pediatrician wanted to take a closer look at the ultrasound since he was not walking. We obviously were somewhat concerned with this news, but I knew he was so close to walking, I didn’t panic too much.

After our appointment, we met with my friend, Emily, for a few minutes in the lobby. Emily is the director of the March of Dimes in Lafayette and I have gotten to know her over the last year. Emily and her husband, Jeff, have three children, Lauren, Ella and Anders. Anders is 11 months old and is currently in the PICU at Riley. In my last post, I asked Jack’s Pack to please keep a special baby boy in your prayers. This special little boy is Anders. Since May, he has undergone testing for hypotonia. In the last month he has had several respiratory complications which has landed him in the PICU. With the testing that has been done, they believe Anders is suffering from a muscle and or mitochondrial disease that is effecting his muscles including his ability to breathe. This is not the news his family or anyone wanted to hear. You can learn more about Anders and keep up with updates at http://www.facebook.com/PrayersForAnders Please keep Anders and his family in your prayers. If you are interested in helping in anyway, family is collecting gift cards for gas and food. They are also asking kids to send artwork to decorate Ander’s hospital room. I will happily help get these items to the family if you want to help!

I was feeling pretty emotional after visiting with Emily and our long day of appointments, but we headed home for Jack to have another hour of therapy. Jack usually has PT on Friday afternoons, but this week we switched to Thursday because it was Sarah’s (PT) birthday. I wasn’t sure how things would go, Jack was exhausted and only napped in the car. Sarah walked in the door and Jack was excited to see her. He pointed over to his car in the corner, so Sarah said “Well Jack, get up and walk to your car!” I was barely paying attention, but looked up just in time to see Jack walking to his car. He literally stood up from the middle of the floor and walked. I was speechless! His walking continued down the hall, to the kitchen, all around the house. It was like Jack knew how to do this all along. Whatever it was, we were ecstatic!

There was some other significance to the day. On September 20, 2010 we went to our 19 week ultrasound to find we lost Baby B. We were also told that things did not look good for Baby A and it was likely a chromosomal issue. So, for Jack to decide to walk on this day seemed like more than a coincidence!

This post has ended up much longer than I planned and I have piles of laundry to put away, so I will leave you with some pictures! Have a great week!

Looking at the fish! His favorite part about Riley!

20 Months

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Mr. Jack is 20 months old today. I can’t believe it. I have had blog ideas running through my head for the past month. I have started and stopped several entries. But, since Jack is 20 months today, I thought it was time for a post! Jack finally weighs well over 18lbs. I’m not sure on his length, but he is looking longer to me. He really had stalled out at 16-17 lbs over the last 6 months. So, we were thrilled to see the number 18! Speaking of weights and measures, Kendrick had his 5 year old checkup last week. He weighed 39 pounds and was 42 inches tall. He landed right in the 50th percentile for height and weight as well as height to weight ratio and BMI. He impressed Dr. Emery with his skills and personality of course. Our pediatrician’s office implemented new software in the last year. Now, with each well child visit, we receive an actual copy of the growth chart. When Kendrick was born, he was at or below the 5th percentile. We knew he was going to be small as he was also diagnosed with intrauterine growth restriction. My OB was actually surprised at his size, at 5lb 14oz she said she thought he was going to be much smaller! Anyhow, back to the story. KP remained at or below the 5th percentile through his toddler years. Looking back, we did not stress much. He was a good eater and he gained weight steadily. So, here we are at his 5 year appointment and we are handed his growth chart. At 2 years old, KP was around 30 inches and not even on the growth chart! I don’t even think I realized it at the time. Probably, because our pediatrician was so reassuring and he was healthy and happy. The moral of the story is, Jack is close to 30 inches at 20 months and I’m thrilled! I have short kids and there is hope that one day Jack too will make it on the chart!
Now, back to Jack. He is still not walking, but getting more brave. He will stand unassisted for a few seconds at a time. In PT last week, he took some steps holding on to a makeshift cane. We used a long Swiffer handle as a cane or walking stick. It was quite comical, but it worked! He had taken a few steps and was really working hard when Kendrick turned the corner and screamed in excitement. Then, Jack sat down and refused to try again. I have gotten the Swiffer stick out again to try and he tells me “NO”. So, that is where we are. Jack has the ability to walk, but he is also exerting his independence and toddler attitude and doesn’t want to try sometimes.
He is learning new words every day. He will repeat about anything you ask him to. He is still not putting a lot of words together, but I am starting to notice it more. He sure is polite and loves to say Thank You! He thinks water means yellow and is constantly asking for a drink of yellow. I’m not sure where he got that one…
We are still working with feeding issues as well. We have made great progress with trying new foods. Our issue now is swallowing. Sometimes Jack swallows his food, sometimes he does not. Today, Jack ate very well at school. Apparently he ate a second helping of sausage with his waffles. He loves really healthy foods like chicken nuggets and oatmeal cream pies too! Jack still drinks 3-4 bottles a day of high calorie formula. He will not drink much of anything other than water from a sippy cup or straw, so the bottle is our main means of nutrition still. An almost two year old still taking a bottle? He eats chicken nuggets, sausage and oatmeal cream pies? Hold your gasps… I think because so many people have different parenting beliefs on bottles, diapers, first foods, breastfeeding and the list goes on, I really have to step back and think. How much does it really matter? Please just be thankful that your child is healthy and has the ability to eat and poop. I move on…
A few weeks ago I was thinking about two goals for Jack before he turns two. I would like for him to weigh 20 pounds and be walking. But, if he doesn’t reach those goals it’s okay. This past week has been tough. A former student lost her 14 year old daughter in an ATV accident. Another friend’s infant son has been hospitalized at Riley in the PICU with pneumonia and feeding issues. This special little guy has been through a lot the past few months. He had a new G-Tube placed and is going through a lot of genetic and neurological testing. He has two older sisters who are around Kendrick’s age and I just really feel for this family. We would love for you to keep both of these families in your prayers! We were blessed with so much love and support during Jack’s trying times. So, I’m asking “Jack’s Pack” to please keep these families in your prayers as well. Seeing these struggles made me so thankful for Jack and Kendrick. We are very blessed to have them both. If Jack isn’t walking and still drinks from a bottle at 2, it’s okay. We know he does things at his own pace….

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Growth Charts and G-Tubes

Jack had his 18 month well child visit last week. He weighed 17lbs 1.9oz and was 29 inches long. He is still not on the adjusted preemie curve, but he’s getting closer! I take that back… His head is on the chart! Thank goodness for big brains!

The month before his checkup, the feeding team decided to cut down on Jack’s formula intake in order to make him more hungry for table foods. This did not work well and he actually lost almost a pound. So, it’s back to formula for now. We knew he had his 18 month appointment coming up, so the goal of the feeding team was for him to weigh 17lbs 2oz. He was just made it, thank goodness! We have an infant scale at home. I try not to obsess, but I have been weighing him fairly often. He was back up to 17lbs 6.5 oz as of yesterday. Thursday, Jack has an appointment with his surgeon at Riley. We are hoping to have his G-Tube removed. His surgeon has two criteria for removal:

1. Jack must take everything by mouth for three months. Check. We have not used the tube since March.

2. Jack must be gaining weight well. Hmm…

I’m nervous for #2 and I’m not sure how Thursday will go.  I would love the get the tube out. It has been leaking lately and his poor skin has been irritated. I also would love to have him shirtless in this hot weather! However, what if he needs the tube down the road? Jack has the capability to take everything by mouth. He has made huge progress trying new foods. Some might wonder why not just use the tube to help him gain weight? When we use the tube, Jack is less hungry. He also gets very gaggy and sometimes vomits. Using the tube would also most likely hinder our progress with eating.

So, please keep us in your thoughts and prayers as we see the surgeon Thursday. This is definitely a tough decision for all of us.

In other Jack news, he is climbing and cruising, but still not walking. It’s tough seeing younger babies taking their first steps. I know Jack will walk someday, it’s just frustrating in the mean time. He is terrified to stand by himself and we all know how stubborn he is! He is talking up a storm. He will repeat about anything on a good day and is starting to put words together. Last night,  Leela, our dog, came in his room. He looked at her and pointed and said “Go Leela!” I guess he didn’t want her to play in his room!  Jack will start OT with First steps next week. He had his yearly evaluation a few weeks ago and we requested OT to help him with some sensory issues that are leading to him not wanting to stand and walk. Speaking of the evaluation, Jack did very well. He scored at or above his age in every category except gross motor skills. If it wasn’t for not walking, he would not even qualify for services! The therapist who came to evaluate him had not seen him since he was about 6 months old. They were amazed at how well he was doing. Keep up the good work buddy!

Now to leave you with a picture…. Henry attempted to take some pictures of the boys and their cousins this past weekend. Do you know how hard it is to get a decent picture of these two??

We hope you have a happy and safe 4th!

March of Dimes and Other Updates…

I’m sorry for my absence on the blog.  It has been incredibly busy the past few weeks. I am counting down until the end of April when I will be done with my Master’s Degree! I’m looking forward to enjoying the summer with my boys!

Jack is doing okay, he’s had two overnight hospital stays in the last month, both for different reasons. He continues to plug along and is getting very fast with his crawling. He really likes to make big brother mad by turning off the XBox while he’s playing a game or watching Netflix. He’s so ornery, when I tell him no, he shakes his head. If I move him away to distract him, he crawls right back. I’m thankful he’s healthy enough to be ornery!

Jack will have surgery on Friday, March 7, to have tubes placed in his ears. He has had fluid in his ears since birth that is affecting his hearing. But, up until this point, his ear canals were too small. He has also had 3 ear infections in the last month, so next Friday can’t come soon enough! We saw Dr. Rink, the urologist yesterday. Jack will need a second surgery to complete the repair of his hypospadias. However, Dr. Rink is in no hurry to do this. We will most likely wait until a year from now. He wants to give Jack time to grow and develop before we put him through another surgery. It was such a beautiful day to be out and about. Jack loved being outside in the stroller!

As most of you know, we have started a team for the Lafayette March for Babies Walk on April 28. Our team, “Jack’s Pack”, is the leading  team for the amount of money raised.  Thank you to all who have contributed. If you would like to contribute, or would like to walk with us, you can register here.

The March of Dime’s Mission is to help promote healthy full term pregnancies. They also provide money for research to help treat premature and sick babies. Through their research and education, they help moms and babies worldwide.  Did you know 1 in 8 babies in the United States is born too early?

In addition, we are selling T-Shirts with all profits going to the March of Dimes. Many thanks to my sister, Maggi, who worked with a graphic designer on the design. They turned out amazing! If you are interested in purchasing, please email me at abbipena@yahoo.com. Sizes available are Adult S-XXXL and Youth S-L.  Orders are due by March 27. We will have the shirts by mid April.

That’s all for now, I must  get back to grading! Have a great rest of the week!

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

NICU Gift Bags

Earlier this month I emailed and posted to our CaringBridge site this letter to friends & family:

Dear Family & Friends:

We first want to thank you all so very much for all of your love, support, thoughts and prayers during the last year. When Jack was born and spent eight weeks in the NICU many of you helped with meals and sent cards and gift cards. While I did my best to send out thank you notes, I know not all got sent. We very much appreciated all of your support during this difficult time. It was so very nice to come home from the NICU each evening and not worry about what to cook. Many times you sent nice surprises for KP and he loved those just as much!

When Jack experienced complications after surgery last month you all stepped up again with your support. We were so thankful for all you did. I am not sure who all donated to the PayPal account, but we were so grateful to have that financial support. Traveling to and from the hospital, staying in hotels and eating out each day was quite an expense. Again, thank you all so very much. We also thank you for your continued thoughts and prayers and Jack heals and adjusts to being home.

Before Jack was born, I saw some party supplies at Target with The Very Hungry Caterpillar theme. I envisioned a big first birthday party using this theme. In fact, each month we have taken Jack’s picture with the caterpillar to document his growth. Because Jack is still recovering and because we are in the middle of flu and RSV season we decided not to celebrate his birthday just yet. We also would love to wait when he can try some cake! I would love to have a big party in the spring where we can all celebrate Jack and thank all of you for your support.

So for now, in lieu of birthday gifts we would like to ask you to consider making a donation in Jack’s honor. Because it is the Christmas season, it’s also a good time to think about charitable donations. We have a few ideas that we hope you will consider.

We are in the first stages of starting a team for the Lafayette March of Dimes Walk. If you would like to donate to Jack’s team, you can visit the website listed below and make a donation.

http://www.marchforbabies.org/s_team_page.asp?seid=1762905 (Note this is our new team page) We would love for you to sign up and join our team! The walk is April 28 in Lafayette.

While Jack was in the PICU at Riley, we were fortunate enough to sleep in the Ronald McDonald house for three nights. I can’t explain how nice it was to actually sleep in a real bed and in a quiet room. If you would like to donate to the Ronald McDonald house, visit the website listed below. On the website, there is also a list of items the Ronald McDonald house is in need of for families.

http://www.rmh-indiana.org/How-You-Can-Help/Ways-to-Donate/Online-Giving.asp

Finally, I am working on gift bags for families of the St Elizabeth NICU. I would like to deliver the bags close to Christmas Day. Jack was in the NICU during Christmas last year and I received a gift bag full of nice goodies. I would like to give back by giving the families admitted during Christmas something this year. We plan on using some money donated to us we have left to pay for these bags. But, if you would like to help contribute with this project, please email me at abbipena@yahoo.com

Thank you again for all of your love, support, thoughts and prayers. We are very grateful for all of you and I know Jack is too. We hope you all have a wonderful Christmas and a happy and health new year!

Love, The Peña Family

Henry, Abbi, Kendrick, & Jack

I was overwhelmed with responses and donations! Thank you to all who gave to the RMH, March of Dimes or contributed to the gift bag fund. We made ten bags and delivered them on Friday, December 23. Each gift bag had some personal care items such as tissues, toothbrush and toothpaste, hand lotion and hand sanitizer. The bags also included paper, pens, activity books and lots and lots of good snacks!

We also included a coupon to It’s A Preemie Thing. It’s a Preemie Thing is a site I found while Jack was in the NICU. Julie, the owner, is a preemie mom who started a business selling preemie gear and eventually making her own shirts. She also has a blog and lots of good links on her site. I have bought several onesies for Jack, including his “No Really, I’m One” onesie. You can find more information here http://www.itsapreemiething.com/ Here is a peek in to a bag. This was before I added even more goodies that a friend dropped by!

You may have noticed the book inside the bag. Sticking with Jacks’ theme, each family received a mini The Very Hungry Caterpillar book. The back of the book included a special message.

The bags were definitely a success and I had so much fun putting them together. This is a tradition I would like to carry on each year. With more time to plan I can watch for good deals and buy things throughout the year. Shhhhh!! Don’t tell Henry! Really he wouldn’t care, but we are running out of room in our house and he might not like this idea! I would also like to work on more donations from businesses, etc.

Thank you again to all that helped contribute to the bags! I know we were able to make the holidays a bit brighter for some NICU families.