Feeding Tube Awareness Week 2013

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Last February, we celebrated Feeding Tube Awareness Week with our post here

Here is a partial excerpt from the original post:

After Jack had surgery to repair his hypospadias on November 10, he had trouble breathing and was admitted to the PICU at Riley Children’s Hospital.  There wasn’t much improvement in the days following surgery and he then began showing some other symptoms with his belly. On Monday, November 14, Jack went back to surgery and they found he had a perforation is his duodenum.  The recovery from this surgery was very slow as Jack’s stomach was not working.  After weeks of TPN nutrition (through his veins), Jack had a G-J Tube placed. We were grateful for the tube to provide nutrition for Jack and also allow us to bring him home for his 1st birthday and Christmas.

Jack had his feeding tube for around 7 months. Jack progressed very quickly from continuous jejunal feedings to just needing additional feedings at night. Around March, he was able to take everything orally. After 3 moths of not using the tube and proving he could gain (some) weight, we were able to have the tube removed. You can read about that here and here!

Looking back on the last year, it has definitely been an adventure. While Jack progressed from the feeding tube, we have still had many struggles. When Jack went in for his surgery in November of 2011, he was getting all of his nutrition from a bottle. When we weaned him from the feeding tube, Jack went back to taking his formula from a bottle. We had attempted some solids before surgery and Jack wasn’t interested, so we didn’t push it.

We began seeing a feeding team at St. Elizabeth around March of 2012. They gave us some ideas on introducing solids and helped with his caloric needs. We saw the feeding team monthly through the spring. At one point, we began cutting back on his formula to make him more hungry. This didn’t work and he lost weight. While we did make some progress during this time, it felt like we weren’t heading in the right direction.

In September of 2012, we visited the feeding team at Riley. We came home with TONS of new information, recipes and rules. In September, Jack was getting most of his calories from a bottle and swallowed very little food. We learned he had very weak oral motor skills and couldn’t chew well enough to swallow most foods.

Since September, we have been very faithful to his feeding plan, increased his occupational therapy to once a week to help with feeding and put in a LOT of hard work. When we saw the feeding team at Riley in January, they were VERY pleased with his progress. We had instructions to stick with the plan and we also started a new drug, cyproheptadine, which is an appetite stimulant.

Since Jack’s January 3rd appointment, we are pretty much bottle free! He is drinking all of his high calorie milk from a cup with a straw AND he has gained over 1 whole pound. Jack tells me he is hungry, is willing to try most foods and we couldn’t be more proud! We still have work to do on his amounts of foods and being consistent, but WOW! The appetite stimulant was certainly the push we needed. 

So, while Jack no longer has a feeding tube, we still want to do our part to share awareness for tube feeding. I believe Tube Feeding Awareness Week also brings light to feeding difficulties in general. Eating is something most of us take for granted. Of all of Jack’s complications from prematurity, this has most certainly been the most stressful.

Happy Feeding Tube Awareness Week and Keep up the good work, Jack!

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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

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!

Blog? What Blog?

I apologize for the blogging hiatus! I think I forgot I even had a blog!. Okay, maybe not. I thought when I finished school I would have ample time to update our blog, but apparently that has not been the case.

Here are the Peña Family highlights since April 10.

-April 28 was Lafayette March for Babies. It was a cold, wet and rainy day. But we had a great turnout of family and friends and celebrated with a great party after!

-May 5 I graduated from Ball Sate with my MSN!  It’s been a crazy last two years and I’m ecstatic to have a break from school!

-May 19 I took a trip to Pittsburgh with my good friends Andrea and Tonya to visit Maggi. We had a great time and I enjoyed a relaxing and fun weekend!

-Kendrick has been playing T-Ball in a local league. It has been so fun to watch him and his teammates play. He only has four more games! The season flew by so quickly!

We have also taken a trip to the Indianapolis Zoo, spend many hours playing outside, and purchased new bikes! And… It’s only June! We are looking forward to a fun summer!

We hope you are enjoying summer too!

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!