Friday, January 20, 2012

GI Appointment

Yesterday (01/19) Bryan & I took Eli to Indy.  There was some snow on the ground and it was actively snowing when we left town so I got my snow fix for a little while!  Eli had an appointment with Dr. Maisel, his gastroenterologist.  She's the one who placed his feeding tube.  He weighed 20lbs 13 oz and was measured at 30 inches long.  Each of those are in the 10th percentile for his age.  We really haven't followed the growth chart for Eli the way we did with Zachary; it was too depressing.  For a while, both our boys were off their respective charts, but in different directions.  Now Eli is on it and consistently gaining an appropriate amount of weight!

Dr. Maisel was very pleased with his size and his activity level.  Our next GI goal with him is to get him off his special formula and onto regular milk products. If you don't remember, he was diagnosed with a milk protein intolerance at 3 months old.  We took him off breast milk and started using Alimentum, which has the milk protein already broken down.  He's been on that ever since February 2011.  Most kids with a milk protein intolerance grow out of it by age one, so we're definitely in the "safe zone" to start trying.  He has had no problems with food that has milk cooked in it (scrambled eggs, macaroni, cookies, cake, etc), but other than putting some breast milk in his formula, he hasn't tried milk.  She recommended we start replacing one of his daily bottles with a bottle of PediaSure.  As he tolerates that, we increase the number of PediaSure bottles and decrease the Alimentum bottles.  We can also use a little more of my frozen breast milk.  So far today he's almost finished a PediaSure (vanilla flavor, we have chocolate too!).  We'll keep that up and keep a watchful eye on his stools since his symptom of not tolerating milk is blood in the stool. 

She also indicated that, although now is not the time, he will come off the Prilosec at some point.  That completely surprised me.  I never really considered that he wouldn't need that all his life since he's going to be on other meds long-term.  My surprise seemed to surprise her.  Right now, Prilosec is his only prescription medicine, the other two are over the counter.  We know he will go back on some type of cardiac medicine to help his heart function, but he isn't for now because his junctional rhythm lowers his heart rate and a side effect of those medicines is a lowered heart rate (the combination would be dangerously low).  She, along with Dr. Amy & our speech therapist, recommend a dietary consult.  We had one set up prior to Christmas, but with all the illnesses we had we decided to cancel & reschedule later in Jan.  I need to get that set up so we can have a local resource for helping us adjust from formula to milk products.

She also wanted some blood work done to make sure his body is absorbing all the nutrients he requires.  She asked if he'll be under anesthesia for anything in the next month or so.  Dr. Maisel is very considerate and said that she could wait for labs to be drawn if he's going to be under.  Fortunately he shouldn't have anything like that until his Fontane completion, so unfortunately, he had blood drawn yesterday.  Luckily, the lab tech was good and only had to stick him once.  He screamed at us and tried to get away, but it actually went better than I thought.

Eli & Mommy waiting for the lab tech to draw his blood.  He loved the moveable arms on the chair (until we used one to help hold his legs down).

Before the appointment with Dr. Maisel we took a trip to the PICU and got to see some familiar faces.  Eli was very good and even let a couple of the nurses hold him.  I think it's good for them to see how well he's doing, partly due to their skilled work!  I wish I had gotten one of him with Dr. Maisel.  We met another of Eli's doctors in the hallway, Dr. Heather Bricker.  She was the hospitalist in charge of his care when he was diagnosed with the milk protein intolerance.  She hadn't seen him since last February and was very excited to hear good reports.
Three of our favorites, Brittni, Nicole & Katie.  They were so glad to see him.

Nicole LOVED Eli's cheeks.  He was pretty good about it (I think he's used to people's fascination with those things), but he was getting tired!

Brittni is our all-time favorite nurse at PMCH.  There are several great ones, but she's been with us through a lot of his major events.  She was the nurse who admitted him to PMCH back in January when he got off the helicopter before Mommy & Daddy could get there. She was also his nurse the day of his first surgery and she was still on duty when he was brought back from the OR. We've had her several times, and it seems like whenever something big is happening she's there for us!

After the appointment (and a 3:00 lunch at Fazoli's) we went to a party store so I could buy things for my sister-in-law's baby shower.  I'm only a LITTLE BIT EXCITED about my little niece's upcoming arrival :)  I hope she can keep up with my monsters (I mean boys).

Since Bryan took the day off for the appointment, he was able to take Zachary to school.  Zachary enjoyed that, but still did his "shy" thing right as they were walking in the classroom.  He loves school, his teacher, his friends, but always gets a little shy right as we're entering the classroom.  He'll hang up his coat & start playing just fine (I even have to ask for a bye-bye!), but he doesn't like to walk into a roomful of people.

Speaking of Zachary, he's playing Biddy Ball with the YMCA this year.  They've had two practices so far and have one more before their first game.  I watched the last practice and am eagerly awaiting an actual game!  To say the least, it should be very entertaining.  Adding to the entertainment, Zachary's team coach is Bryan.  I don't know who I'll enjoy watching more...four year olds "playing" basketball or Bryan's frustration!  Team pictures were Wednesday night.  We chose a package with trading cards so we had to include Z's height and weight.  He's 53 lbs and 46 inches tall.  He's two inches from the adult rides at most amusement parks (not that he'll ride them!).  

Time for me to go fix lunch & get ready for therapy.  My wrist is doing very well, just gets stiff if I don't do my exercises.  Thanks for checking in!

Tuesday, January 10, 2012

Emotional Time

What a range of emotions today!  On the non-serious side, I had therapy this morning and then went to Evansville.  My stitches were taken out and I got a good report.  It feels soooo good to have those things out, my wrist had been itching like crazy.  I'm much happier now :)  I even got to have a grown up lunch with a friend I hadn't seen in a long time.  What a treat for me!

Both boys are almost back to normal.  They both still have runny noses and Eli has a cough, but they're both so much better.  Zachary finally got to go to school for the first time since before Christmas.  He took a long nap this afternoon, not used to getting up early anymore I guess! 

Eli is a master at crawling & pulling up to his feet.  He's really quite the character.  He loves making us laugh and is full of surprises.  The other day he climbed the stairs (9 steps!!!) without any problems.  The farthest he'd gone before was two steps, so we didn't expect nine.  His appetite is getting much better too.  Hopefully he'll be over the last of his cold in the next few days. 

The past two nights have been very emotional.  Eli's heart surgery was one year ago today, Jan 10 (although it's almost midnight so it'll probably be the 11th by the time I post this).  Putting him to bed last night was really hard.  I kept thinking back to the night before his surgery.  Bryan & I didn't sleep at all.  We were so scared he wouldn't make it through the operation; the surgeon said there was a 30% chance he would not. 

Normally if you hear there's a 70% chance of something, it's pretty good odds.  A farmer loves a 70% chance of rain in the summer.  Anyone would love a 70% chance of winning the lottery.  Most people can appreciate a 70% chance of snow at Christmas.   A 70% chance your 11 week old son will live is not good enough.  It was the absolute worst night of our lives. 

We were also told to expect that he would be on a heart-lung bypass machine IF he made it through surgery.  Our baby made it out of the operating room and was NOT on the machine.  His chest incision had been left open for several different reasons.  It was covered with a clear dressing.  When we finally got to see him, we just stared at his little chest, rhythmically rising & falling, rising & falling, rising & falling.  Even with the incision, it was the most beautiful sight. 

I couldn't sleep tonight.  I keep reliving all those events and emotions of last January.  Last night, I cried a lot while putting him to bed.  It was hard to let go of him, even for the night.  I lost count of how many times I crept back in to watch him sleep.  The number of tears I shed last night is a small fraction of the tears I shed 365 nights ago.  Tonight, I keep going back to check him, but I'm not as overwhelmed with emotion as I was last night.  Tonight I can remember more of the happier moments, I'm not as focused on the fear.  The future is still scary, but even if I could look into a crystal ball, I wouldn't do it.  We just have to take things as they come and trust in His plan.  I knew that before last January, but I REALLY believe it now. 

Last night, while I rocked Eli & cried, he just stared at me with those big, brown eyes.  His little hand touched the tears on my cheek and he smiled at me.  He & I have had many bonding moments over the past two years (yes, almost two years; he lived in my belly for 9 months!).  Some were the normal mommy & newborn moments.  Too many have been in the hospital setting, but last night was one of the most special so far:  As I was giving thanks for Every Little Beat of his heart, I realized that you just haven't lived until your baby plays with your tears of gratitude. 

Thursday, January 5, 2012

One Year Ago Today

It's hard to believe that at this time one year ago today we were admitting Eli to the local hospital.  He was 10 weeks old and weighed less than he did at birth.  We were thinking he had stomach issues, little did we know what we were in for.  I think you all know the rest of the story.  It's been a crazy year full of stress, tears, prayers, and sleepless nights, but we've learned so much about ourselves & become a stronger family because of it. 

The outpouring of support we received in those first few days was overwhelming.  The support has continued (as has the stress) and we are so grateful to all of you who help us in so many ways.  Thank you for caring about our family and our beautiful little boys.  Thank you for realizing how difficult this has been on Zachary & for anything anyone has done to help him cope and adjust.  Thank you for all the kind words, cards, gifts, dinners, handmade blankets, offers of help, monetary donations, hugs, and, most of all, encouragement.  Most importantly, thank you for all the prayers.  God is good.  He's brought us this far, He won't abandon us.  There's a reason Eli was made this way and a reason why he was given to us.  We are so grateful that he & Zachary are ours.

Each day is hard, but at the same time, we don't focus on Eli being a "heart baby" every day.  He's a normal little boy who loves to ransack the house, torment the dog & imitate his brother.  People who don't know about his issues are surprised to learn of them because he looks so normal & healthy.  We do that too.  Most days are spent doing normal family things.  There's always that fear in the back of our minds or that sinking feeling in the pits of our stomachs as we wait to see what unfolds next.  It's difficult not to focus on the negative, but we have so many positives in our lives that we can't stay negative for long.

Thanks again for all the support over the past year. I wish I could write that "we're almost done with this journey" or that "Eli's heart is fixed" but that will never happen.  We're in this for the long haul and I'm afraid of wearing people out with our story and prayer requests, but I won't stop!  Thanks for caring and remember to treasure Every Little Beat....

Tuesday, January 3, 2012

Here we go again...or still...

Eli had an ear infection/diarrhea/teeth cutting episode in early December.  He recovered from that, we did the Holter monitor (see previous post for all that info), had Christmas and thought all was good.  Since Christmas we've been a very busy group!  The day after Christmas, Eli started with a runny nose.  He progressed to a full fledged cold since then.  His eyes get matted shut, he has a breakdown if he sees a Kleenex in the room because his little nose hurts so badly, and he's coughing so much that he can't sleep. 

We started getting really worried yesterday because he wasn't even playing anymore.  The poor baby just sat on our laps and whined.  He's not normally a whiner, he usually just yells for what he wants then moves on!  We went to see Dr. Amy today and found out he has another ear infection and red, swollen tonsils.  Fortunately she didn't hear anything in his lungs, so we think the cough is from all the congestion.  Good news is that he's gained another ounce this past month despite his decreased appetite lately.  He's now 20 lbs 13 oz!  Eli got a Rocephin (an antibiotic) shot in her office and started an oral antibiotic at home.  As soon as we got home he went to sleep and has been in bed for 3 hours!   

So, what does momma do when her baby is finally getting some sleep?  She sits on the couch eating Oreos and watching mindless television.  It was awesome :)  I needed some downtime to rest my wrist.  I had surgery to remove a cyst on my wrist 12/28.  Things went well and I'm actually doing better than I expected.  I start physical therapy tomorrow.  I'm supposed to have a 5lb weight restriction, but that's difficult with a sick little guy around.  Luckily, Bryan has been willing to take care of a lot of things and my mom & his sister Kendra have been huge helps.

Zachary had his first Snow Day today.  Washington schools were on a two hour delay, which means that morning preschool was canceled.  He needed to sleep in and "we-wax" some too!  Right now, Zachary, Bryan & Kendra are in Indy at the Kids Club event.  They get to play on the field and I think there are bouncy houses for the kids too.  Some players come out later for autograph sessions.  I'm sure they're having a good time!

I hear a baby starting to wake up so I'll end this update for now.  Hopefully the nap did him some good and he's ready to eat a little.  Please pray for a good night for him, he hasn't slept well for two nights because of coughing so much.  We hope all of you had a wonderful Christmas and we wish everyone much happiness & health in the New Year!