Friday, October 19, 2012

Cardiology Visit

Today has been very busy!!! I had the privledge to hang out with my little buddy on his 1st field trip to Noll's Farm outside of Somerset. It was a beautiful day for it, but it was very windy up on that hill, thankfully the rain held out while we were there! They had a corn maze, tractor hay ride, play area, he learned about pumpkins and gourds, and picked his own little pumpkin from the pumpkin patch. It was a lot of fun and I'm so thankful everything worked out so I could tag along!

Preschool class



We saw Dr. Weller at Childrens today also. He was pleased with how well Ethan has been doing. Everything with his breathing, decreased appetite, and sleepiness is all related to the heart issue. He is keeping lasix as ordered and adding digoxin- a medication used to increase the strength and decrease the workload of the heart. I was very pleased with this visit, no admission!!! They are just trying to buy some more time to get his weight up and stronger for surgery. If at any point he gets worse they will just have to do it. He is up to 9lbs. His vitals and lung sounds checked out well. His echocardiogram of his heart is unchanged from delivery. He had to get bloodwork, but that was nothing compared to all the shots he got on Wednesday for his 2 mos checkup!!!! We have a follow up checkup on October 29th and we will see how things are going!!

Wednesday, October 17, 2012

Quick Update

Happy 2 months to our baby boy!

We saw our pediatrician today and she felt Ethan is starting to go into heart failure. They have moved up his cardiology visit to this Friday. His lasix was increased to twice a day. He is gaining weight but not a lot. He is up to 8lbs 15oz and 22 in. He is starting to worked harder to breath while he is eating or other small activities. His liver is enlarged which is a sign his heart not pumping efficiently. This is a change from his visit 3 wks ago. He is not 'acutely' sick but she wants his cardiologist to see him. She anticipates we will be referred to the cardio thoracic surgeon for evaluation for surgery soon.

I just feel so numb... My heart is so heavy... My mind and body feel listless... This is completely out of my hands and it is in Gods hands. Speaking from someone who likes to maintain a sense of control!!! I knew this was going to happen but it's just crazy how 'Normal' for him I've gotten used to. I have noticed changes in his breathing with activity. He is very peaceful when he is just resting, but that is not ideal.

He got all of his immunization a except projectile vomited the Rotateq. He screamed bloody murder for 15 minutes after the 3 shots. For those that have seen or heard us talk about Ethan.. He does not cry. I still have tears hearing that little cry come out of my baby boy!!!

So please, say a prayer for us on Friday. I know you already have us in your blessing. We love you all!

Friday, October 12, 2012

OMG, It's Been Awhile!

Oh, how I have neglected my blog! I had no idea the amount of people that actually read this. My blog has had over 500 page views in the last 3 weeks!! I had to take a break from everything!

So, it's been about 3 weeks since I last posted about my little man! He had lost some weight (down to 7lbs 14.5oz). About 3 weeks ago we added 1 tsp of formula per bottle to increase calories and weekly weight checks with our pediatrician. Well, he did not tolerate formula!! Within an hour he starting 'spitting up' which was a little unusual because he had not been doing this. By the next feed he was projectile vomiting and got a nasty diaper rash... Allergy vs intolerance?- did not care was not giving him anymore, the oncall peds dr agreed. Within 24 hours he was back to his happy self and eating so much better than ever before.

We also changed bottles. Our friend Jessica brought us these tiny bottles when Ethan was in the NICU. They have smaller nipples for his smaller mouth struture. They are made from Gerber, First Essentials with latex nipples. We had been using Playtex dropins- that's all I ever used with Eli. He could not get latched with these bottles, made a huge mess, and sucked tons of air!!! The Gerber bottles are no longer sold on the stores (Walmart has the silicone nipples or the fast flow latex nipples). I ordered the Gerber bottles shown below from amazon, 6 bottles for $10.00- this INCLUDED SHIPPING!?!?! These bottles have made a HUGE difference. Our last weigh in 3 weeks ago....... he was up to 8lbs 5oz!!!!

      The Gerber 1st essentials on the LEFT                                                         Playtex Nurser on the RIGHT

We go back to our peds dr next Wednesday for his 2 month follow up. Our next cardio appt is October 26th. He has been doing SO WELL!!! He eats 3-4oz usually over 30 min, sometimes a little longer. He is awake for longer periods but still sleeps quite a bit, but that's all related to the heart issue. Once his little heart is repaired, he will be a whole new little baby boy!

It's been so nice to have a break in between appointments. This is awful, but this is the 1st time I have gotten to enjoy my family and my newborn son since he has been born. Right now THIS is normal. I love waking up every morning to my 2 beautiful baby boys. They shine so much light. Everything I have been through and continue to adventure only makes me a stronger person. We don't chose the cards we are dealt. Ethan was born with Down syndrome, but that's not who he is going to be. He will learn to smile, sit, crawl, and walk just like everyone else.. It will just be on his time. I know he certainly has a fan club that will cheer him through on! So enjoy some picture below :) I also threw in some of Eli's 1st dentist appointment, LOVE the fact he likes going to the dentist... for now!!!