Thursday, April 12, 2012

Little Victories

Please check out the Medical Jargon and Cast of Characters sections (late afternoon Friday) if there is any confusion about doctors or terminology as we will update each section.

We cannot believe it is only Day 10 because it feels so much longer. I am running around trying to do things totally forgetting that I had surgery 10 days ago. Although, every once in awhile my body will alert me to that fact, ouch – I got my staples out on Monday. However, I am feeling great trying to be the best mom I can for both my boys.

Nate went back to work this week and we have settled into a pretty good routine. Nate, being the amazing dad he is, wakes up extra early in the morning to head to the hospital to spend time with JD before work. After work he runs home to spend time with our big munchkin, Connor. Whereas, I wake up to spend the morning with Connor then zoom over to the hospital around 1ish to spend the afternoon and evening with JD. Then comes bedtime when Nate gives Connor the bath and I read to Connor to put him to bed. Connor was a bit of a rascal last week and gave me a little bit of ‘tude for being gone but this week he is much happier with us. It is not easy as we want to be with both boys all day but it seems to be working so far.

The past 4 days have been filled with good news:

Blood Work
On Monday they needed to do additional labs so they took more blood. He is a tiny little guy so taking more and more blood can hurt his supply/hemoglobin levels. Once again, the doctors mentioned he would need a blood transfusion making Nate and I very unhappy. Yet, after they took his blood and tested his hemoglobin levels it turns out he is regenerating blood cells like a champ. NO TRANSFUSION. That is twice the doctors said the word transfusion and twice JD “no thank you.” Victory!

After losing weight for the few days after birth we finally started gaining weight. James topped the scale at 3lbs 0.5oz, however, after he went to full feeds with no IV fluids (yay) he dropped back down a few ounces. The doctors said that is very normal and they are not concern as he is taking down all his milk with no residual. If they are not concerned we are not concerned because they have no trouble telling us when they are concerned. Plus, in last night’s weigh in he was up 2 oz again.  Victory!

The possible concerns Nate mentioned in the 4/4/12 post are no longer concerns (possible Aorta Coarctation and Pulmonary Stenosis) – this kid is always dominating. Based on a follow-up ECHO, the only concern with the heart at this time is ASD (which we expected) and, while it will continue to be monitored, it is not something to be worried about at this time. An ASD is something that can close on its own later in life or it may require surgery. Once again, we take away the good news, the heart concerns have decreased. Victory!

The Pediatrician
Dr. D came by to see us on Tuesday (brought me a Starbucks – thank you) and met JD for the first time. Turns out the doctors and nurses like Dr. D GREATLY . . .we have always known we were in good hands and now everyone knows we are in good hands. Victory!

Physical Therapy
Over-achieving James Douglas has already started his PT during Week One of life. The PT ladies are so gentle and quiet while whispering the nicest things (sorry JD, mom does not have a soft voice).  They stop by everyday to do about 20 minutes of exercises and they are impressed with his muscle tone and his movement in both legs. I noticed today the kid has huge knees. Pretty sure that means he will be a super fast runner. Special Olympics here we come. Victory!

Abby - if I say something incorrectly when it comes to Speech please feel free to correct me . . . just not in front of everyone
Speech Therapy started today to discuss JD’s feedings. We are still using the OG (Oral Gastric) Tube for feedings (which is going very well) but we are working towards bottle feedings. No need for details but just know Speech (that is what the doctors call the Speech Team) was “impressed” with JD’s eagerness to work on his natural techniques as well as stubbornness when he told us “I am done for today, thank you.” Victory!

We have started a new feature called “Favorite Update of the Post” so we can focus on all the good news JD gives us each day.

JD had his Nasal Cannula (NC tube) removed on Tuesday. After our discussions with the doctors we thought it might come out on Wednesday or Thursday but we were surprised with an early removal. I walked in to JD’s room on Tuesday afternoon to see my boy’s handsome face tube free (with the exception of his tiny OG tube in his mouth). It was a phenomenal surprise and one of the many times tears of joy filled my eyes as I was reassured my little man is a BIG fighter.

Reason: With the NC tube out it means we can start working towards bottle-feeding (see Feedings section above). YAHOO! Plus, we get to see his distinguished nose and charming face. – VICTORY!

It might seem as if each day is full of shiny happy doctors coming into our room to tell us JD is super awesome. While yes, that happens, we do get doctors coming in who are very straight-faced to tell us all the POTENTIAL problems. But we choose to focus on the good news when we can. We know JD’s life will be full of challenges and uphill battles but we choose to focus on the good news that is here in the present. There is no reason to spend our energy worry about possible issues 3, 6 12 months down the road. The bad days will come so just let us enjoy the good days. We are not naive to think we are in the clear forever but we are sure happy to hear everything we have heard thus far. JD is clearly making great progress as the doctors’ rounds are very short with few updates.

Check out his delightful face without the NC tube:

Please take this thing out, my face is way too adorable for this!

Check me out, I am incredibly good-looking

I also have a nice shaped head

I may look tired but I am ready to party


  1. What a handsome little guy! WOW for all the victories, WOW for JD, and big WOW for you!! You have the greatest outlook, JD has the best parents he could ask for. Way to go, mom!

  2. So happy to hear all the great news, he is one awesome little man! I love your attitude towards everything and I know that is going to help JD so much. Can't wait for him to go home!

  3. He is adorable Jen, and your attitude and positive energy is an inspiration for sure.

  4. VICTORY!!!! He is such a trooper! I love seeing his adorable face. xoxo JD

  5. jD, little man you are a rock star! Your Mommy and Daddy already had one terrific little one living at their house. Your big brother Connor is a fairly spectacular guy! So it is no surprise to those of us who know and love the Gawels that you would follow the same path! I cannot wait to meet you and to see you all together. Keep up the good work JD! Love and kisses, Nia/Aunt Katie

  6. This is so, so great! Starting to think JD's nickname should be "Victory!!"

  7. Wow! Wow! Wow! I love all the Victories! Keep up the great work JD. I am so happy for all of you. He is so very handsome! Sending Love!

  8. Glad to hear all the good news, Jenn and Nate! You're doing great... I'm sure it's exhausting! Love ya!