Thank You For Your Prayers

So, we are home now and getting back into the grove of daily life. Jack is doing well and has shown no signs of a cold or otherwise. We all think it was just the little left over funk hanging out in his lungs. I’m sure the lung lavage really helped out too.

Thank you for all your prayers and well-wishes. As you all know, they will never go unused in a place like Children’s Hospital. Regardless of the circumstance.

Jack has already been rescheduled for his second attempt of hip surgery. November 26 is the big day. If you would like to join Matt and I for a yummy Thanksgiving dinner in the cafeteria, that’s where we’ll be. It’s either then, or February of 2014.

So, now we wait again. We are using this time to further our attempts to make Jack the fattest baby possible. The thicker (healthy) the baby, the better the results (recovery). We are also working on walking and vocabulary comprehension. If he is able to tell me where it hurts after this surgery, even in the most primitive sense, I will feel accomplished.

Jack's ice cream obsession

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The Temporal Thermometer Search

As we all know by now, Jack is scheduled for a hip surgery next week which will result in a bilateral spica cast. For the purpose of being as nice as possible to a presumably frustrated baby, I am going to bypass all the ‘gold standard’ methods of temperature taking and am looking for a temporal artery thermometer. There are two that I would really, REALLY like…

Exergen TAT 5000 – used at Cincinnati Children’s Hospital. Why not mimic the lifesavers?! Retail $450

Scanadu Scout – What an all-purpose tool this could be to a CDHer?!                          Retail $500

But, alas, I am not independently wealthy, or any kind of wealth for that matter.

I am looking to make this investment this week and am looking for some suggestions of temporal artery thermometers that some of you have used and found success.

***UPDATE***

I feel like this post is a little misleading. The two above thermometers are the only temporal artery thermometers that I have any experience with (the Scanadu Scout is only virtual experience). This is not the typical price for in-home temporal thermometers. Those two examples are on my pipe-dream wish list. In-Home use models tend to be priced around $50 or so. I don’t want people to think that I am taking out a small loan to investigate a fever. Sorry.  : )

Some Much Needed Good News

This post will probably go down in history as my most favorite one to share since the start of this blog. Thank you, Matt for taking Jack to his appointment and for relaying the information to me so quickly!

Jack had his cardiology appointment today which consists of an EKG, ECHO and clinic appointment with the always awesome Dr. Hersch and Michelle Cash. Some of you may know that a couple of months ago, Jack was taken off of Sildenafil, his pulmonary hypertension medication, in hopes that when he is rechecked the pressure in his pulmonary vessels will be lower and they will be responding appropriately to stimuli.

So, this appointment starts off like any other at Children’s Hospital. A wait, check in with insurance, wait, and finally meet the nurse and get weighed and measured. This is always an anxious point in the appointment for me since Jack has always been behind on his weight gain and has a surgery coming up. The bigger he is, the better he will do; so Matt and I have been religious with getting in his 1400 calorie a day requirement. We use calorie counters and food journals and have been recording ALL his food EVERYDAY since November of last year. Daunting.

But all this effort has finally paid off yet again in another big jump in weight and height. Jack is now a whopping 84 centimeters tall and 11.08 kilograms. For the non-science folks (sorry, it’s a bad habit to break), this is 33 inches and 24 pounds 6 ounces. This will bring Jack to 25%tile for both weight and height for his age! A wonderful improvement from the 13%tile that we have been idling at for almost a year now. I was so happy for him and of him. I immediately texted my mom with all capital letters.

After the weigh in was a couple of tests to view his heart and how it was functioning. Jack was asleep to ensure that they received ‘non wiggling’ images. Normally, this is a smooth process and he will come out of this ‘twilight’ anesthesia with a little wobbly and goofy demeanor but overall a lovable little boy. Since this was not the case today, I will skip the theatrics and drama and let you assume your own events. That might be better for everyone. But over the cries, Dr. Hersch did tell Matt the most wonderful news since Jack has been home. Jack is no longer hypertensive! Though he would like to continue the clinic appointments every 6 months to be safe and ensure his prognosis, he sees no sign of Jack having pulmonary hypertension. Jack is off Sildenafil for good and his heart is functioning normally. This is an amazing relief since PH is the number one reason why these kiddos would fail.

I am so proud of this little boy! He had all the odds stacked against him and he continues to thrive and succeed. He is a true motivator and my hero.

So, we are going to go into his hip surgery with momentum and he’s going to come out fighting, just like he always does.

For those of you who don’t know, Jack will be going into another surgery on October 1 to rebuild his left hip socket. This will result in a full spica cast for 3 months and 2 subsequent surgeries. He will then move right into a mehta cast for an undetermined amount of time. This will be used to straighten his back from scoliosis. He will enter flu restriction a little early this year and will be out into civilization again in the spring like always. He should be cast free by then. If you want to visit Jack in the hospital before Children’s Hospital flu season visitation restrictions, Matt and I are requiring that  you have your flu shot. Though this is a little earlier than what we asked in previous years, he is going to be a little more compromised and we want to take every precaution possible.

Thank you all for your support!

  
Baseball Jack
bowl hat Jack

Eating Progress

meal timeThis kid has come a long way! I remember being beside myself the first time Jack finished a stage 1 baby food in 2 days. After that, we spent a year combating oral aversions due to textures and undeveloped skill. You can’t get a baby to eat if they don’t know how to swallow. The old adage, “You can lead a horse to water, but you can’t make them drink” was painfully real. Our only option was to continue to offer new foods and beverages, maintain a tube-feeding schedule and display patience so Jack wouldn’t feel our frustrations.

My display of patience was always noticeably manufactured. I’m embarrassed to admit that there were multiple times during this last year that I lost my cool and would yell at Jack for not eating. I would ask him in a panicked shrill, “I live to eat and you won’t even eat to live! What’s wrong with you?!” And I would storm off to cry. I would cry not only that Jack still had a long ways of developing but also that I felt cheated. I wanted so bad to breast feed, but couldn’t; I wanted to start Jack on a healthy and active lifestyle early in life, but couldn’t; and I found myself pumping him with manufactured, powdered formula at an age well passed a year old. And I felt guilty because I was sad more for how that made me feel rather than how Jack felt.

Jack had never had to eat to live. Nutrition was taken care of for him since birth. That was the only thing that had been taken care of for him. He had spent his life since day one learning to survive. And he did quite the stand-up job doing it, so he certainly deserved my patience. Manufactured or organic.

So, I put on my happy, patient parent hat and took suggestions from therapists, family and friends. We tried food chaining as suggested from our wonderful Children’s speech pathologist, Kirsten. (Side note: when we go back to in-home care this fall, I will be fighting tooth and nail to get Jack’s therapists Kirsten and Shannon back!) I also learned to change my behaviors after talking to a friend, Megan, whose daughter also struggled with feeding development. She said, and I paraphrase, “These kiddos don’t value mealtime like we do. They value playing and exploring so much more. You’re not just teaching them to eat, you are teaching them what it means to eat. But they have to enjoy it first”.

So, here we are, just shy of Jack’s two year birthday. He slowly increased his oral calories and variety of textures over the past couple months for High Risk to allow us a trial week of only oral foods…no formula boluses. The first week, he fell short almost every day after falling victim to his first ear infection. We were allowed to try another two-week trial period as long as Jack’s calorie intake raised from 1000 calories per day to 1200 calories per day and eventually to 1400 calories per day. I thought for sure that we would have to supplement with formula….but… as usual, Jack impressed us all by stepping up and rising to the occasion. He has since picked up a love for chocolate whole milk and is meeting a 1300 calorie per day requirement. Next week, we’ll push it to 1400.

Jack’s favorites:

French fries dipped in ranch dressing
Chocolate whole milk
Frozen Gogurt
Ice cream (any flavor)
Strawberries
Cheese
Chicken nuggets
Hot dogs
Berry Juicy Juice

Jack’s Plaque in the NICU

This post came a little sooner than I anticipated.

In September of last year, I received a call that Cincinnati Children’s Hospital would be remodeling the NICU and adding the Maternal Fetal Medicine unit to the NICU. For those of you who know, the MFM Center used to be on the 7th floor Location A at Children’s. The NICU on the 4th floor Location B. This meant a little field trip for Matt and I to visit Jack at his bedside while I was still in recovery. Not ideal, but do-able. So this move will be a great convenience for the families to easily be united with their sick and/or premature babies.

After the explanation of the move and remodeling, the representative from Children’s then explained that they will be installing a wall with MFM and NICU success stories and would like to feature Jack on the wall. Matt and I were honored and gladly accepted.

A freelance writer called about a month later and recorded our story and got consent for the publishing of the story and for a photographer to come to the house.

Christmas card_2012

 

After waiting another month and bringing us to November, the photographer came to the house and took dozens of great pictures of Jack, Matt and I (Amber snuck in to a couple as well). I’m sure some of you may remember our Christmas card last year. That photo came from that Children’s photo shoot.

 

 

Today I received an email from the Children’s Hospital representative informing me that the plaque is up in the lobby of the MFM / NICU and can be viewed and admired by all. Can’t or don’t want to make the trip to the NICU? Don’t worry, I have posted a photo of the plaque below. Enjoy!

Click on the image to enlarge

Click on the image to enlarge

Jack’s First Christmas at Home and Other Stories

Welcome back, Jack Followers. I have to admit, I have been enjoying this mundane life of ours lately. There was a stretch of no doctors appointments, no disasters worth sharing and no plans to change the status quo. Jack is taking tube feeds by gravity now and the pump is only used for overnight feeds. This leaves a lot of time for Matt, Jack and I to work on oral feeding which is going great. He is up to about 400 calories on any given day. Since this is almost half of the calories he requires in a 24 hour period, I am talking with the dietitian in the High Risk Clinic at Children’s about weaning off the overnight feeds (or at least a portion of it). He is LOVING hulless popcorn that his Great Grandma bought him for Christmas. He is going to be just like his cousin Ben with their insatiable love for cheese balls.

So, I will back up a little on the timeline and go back to the first week of December. I couldn’t take it any longer and convinced Matt to give Jack his first haircut. Matt was on board with the haircut but it took some convincing for him to actually sit down and do it. He didn’t need a lot taken off. Just the long sections in the back and his Lovely Lady Curls on the sides. I knew my mom would have a breakdown and I kinda liked a little of the curls myself so he only got a trim.

haircut 3

Pre-Haircut Concerns

haircut 2

Post-Haircut Bath

Babybook Locks

Babybook Locks

 

 

 

 

 

He was left with a clean and handsome little boy look and his first curl is tucked away in the baby book.

Then nothing good happened until Christmas. It was nice to have Jack in the house as we decorated for Christmas this year. Last year, Matt and I managed to put the ornaments on the tree on Christmas Eve after we had plenty to drink at Matt’s Grandpa’s house. And you know I cried the entire time. But this year, Jack watched in awe as we put lights up the stair banister and around the door. And of course he can’t get enough of the Christmas tree.

Christmas festivities were pretty lame for Jack since he is on flu restriction and didn’t go out to see his family, but he did have some good evenings with grandparents and aunts that hung out with him while we visited with family for the holidays.

On Christmas morning, we all woke up together (a little too early for my liking but Jack did sleep in a little. What a great gift). We walked down the living room and Jack took one look at the lights on the tree and all the presents and was beside himself. This kid is so spoiled, he becomes frantic when he sees a gift. Jack opened his presents first, then Matt and I. It was great to see Jack open his own present this year verses Matt and I opening them for him a week after Christmas because he finally woke up after surgery #3. What the difference a year makes.

If you’re looking for Christmas photos, you won’t find them here. Instead, you will have to wait a little to see the video (after Matt edits out all the boring stuff and weird shots of my face too close or those prolonged floor shots you always get).

Now, as we prepare to spend our first New Years celebration together, the house is a mess, Jack and Matt are sleeping peacefully, and I am not far behind.

We hope you all had a  great Christmas and have a safe New Year. And to all the Gorge goers and canoe-ers, Happy Christmas, Merry Manza and a Great New Year to you!

A Great Day for a Walk

It’s been over a week and I have already lost one version of this post due to not saving…so I will try again and make sure this one is posted.

We were given a great day for a walk to benefit the Cincinnati Children’s Hospital Medical Center and all it’s patients and families. Team Jack met by the ‘T’ banner, coffee in hand. The weather was great considering there was rain in the forecast but not in the sky. With the temperature hovering a little over 60ºF, we bundled up, got our race bibs and t-shirts and starting on our walk.

It was very nice to be the normal family amongst a sea of people who were also pulling off the walking trail to administer medications, fill feeding pumps and reorganize piles of equipment under the stroller.

We only encountered one incident where we had to change Jack’s clothes due to a leaking mic-key button but used that chance to change his diaper and then we were on our way. We finished the walk way behind the pack and joined in on the line for pizza….of course until Matt mentioned chicken wings. Then on to Logo’s we went for some chicken wings, beer and commaraderie.

I definitely want to give a special Thank You!! to all who walked and/or made donations. Team Jack and all our donors were able to donate over $1750.00 to CDH research efforts at the Cincinnati Children’s Hospital Medical Center and the donations are still rolling in (the last donations will be accepted until October 31).