We made it! They gave us the good news this morning that we were free to go home.
We're home and so happy to be here.
After a rough night last night we are so happy to hear that things are looking good for going home tomorrow.
We might have been able to go home today, but he still has some fluid around his lungs and his potassium was low from the diuretic used to reduce the swelling. The current news is that his potassium levels have stabilized and the fluid has not increased, so as long as things stay the same or better, we'll get to go home tomorrow.
We had a couple of lovely visitors today, Benny's wonderful babysitter Lily and her father.
After five days here in the hospital, we are definitely looking forward to going home.
We are at day four of Benny's recovery from heart surgery. Every day he does better and better.
Yesterday he had the breathing tube taken out around midnight. The nurse had told us that he wouldn't get it out until the next morning, so my mom had stayed and sent me to get some rest at the hotel with my mother-in-law, Nora. I woke up just after a dream that Benny was healthy and smiling at me, and was just telling Nora about it when my mom called and said that the ventilator was out, and Benny was awake. I could hear Benny making noises in the background.
It worked out well that I hadn't been there that night, because it would have been torture not being able to breastfeed him during his discomfort. They finally let me nurse him at 10:30 yesterday morning. It was so wonderful getting to hold him in my arms again!
We had several visitor yesterday, including Benny's girlfriend Everly! She wasn't able to come in and see him in person, but she wore her Team Benny shirt in solidarity.
Last night I stayed so that I could nurse him as needed during the night. It was a little rough, he has some congestion in his chest that made him uncomfortable, and the nurse tried to pull it out by sticking a tube in and suctioning. He really did not like that.
She also terrified me by telling me that if the blood coming out of his chest tube turned cloudy that it would be a sign that he could no longer digest proteins and he would have to go on a low-fat diet. This would mean that I would have to pump and have the fat separated out of the breastmilk before I could give it to him.
After months of having to nurse and pump and supplement I was really looking forward to Benny being strong enough to exclusively breastfeed. I started to freak out.
This morning things started to look up again as soon as Nora and my mom walked in the door. They both have nursing backgrounds, so know how to read all of the machines and translate for all the medical staff. (I really think hospitals should give out Medical to English language dictionaries for families trying to follow what their doctors are saying to them.)
They said that everything looked great, and they were right. Within a few hours the surgeon came and took out the chest tube and pacer wires. (The tube stuck out of his chest to release the blood and fluid coming from the heart, and the pacer wires they leave sticking out of the heart in case the heart doesn't start beating on it's own and needs a pacemaker.)
Benny wasn't thrilled about this process, but we were. All he has to work on now is continuing to eat, poop and go about the business of being a baby. As long as he continues to get better we should be out of the hospital in a few days! We are so happy with his progress, this is truly wonderful.
Eight months ago when we found out prenatally that our baby would need heart surgery I was terrified. And that terror didn't go away, but continued to boil underneath the surface throughout my pregnancy and the first four months of Benny's life.
But as the time of the surgery grew near, an amazing thing happened. People began to rally around me. My sister set up a special Team Benny page on FaceBook. People I had just met asked me how they could help. A neighbor brought over chicken soup in small containers to keep in the freezer. My son's school counselor offered to bring us Thanksgiving dinner. A friend I had just met brought us dinner. Someone I still haven't even met in person set up a meal train for us, and friends signed up.
My brother-in-law printed t-shirts with a special heart he designed to represent the four chambers that Benny's healed heart would have, with characters Caspian and his cousins drew sending love to the heart. When I asked people to let me know if they were interested in wearing a Team Benny t-shirt the response was incredible.
So many people reached out and asked me how they could help that I finally realized that they really meant it. So I sat down with my husband to figure out what help we needed, and wrote a blog post on how people could help.
In the days leading up to the surgery pictures of people wearing their Team Benny shirts started to appear on our FaceBook page, in texts and emails. It felt like everywhere we looked we were reminded that people were praying for and thinking about us.
At home my mother and good friend Hannah had arrived and were helping me keep Benny and the rest of us well fed and the house in order. My stress was slowly decreasing despite my fear of the ever looming surgery date coming nearer and nearer.
Yesterday all day I watched and read as people from all over the world sent us pictures and messages letting us know they were praying for us, thinking about us and visualizing a positive outcome for Benny. Our friend Joel is a professional photographer and had taken amazing pictures of our family a few weeks before the surgery. All day he sent us beautiful pictures of Benny looking healthy and happy, reminding us that our baby would be healthy and happy again.
And the crazy thing is, all that praying and positive visualization worked. Not only was Benny's surgery a complete success, but the terrible day that I had anticipated for months didn't feel so scary at all. Feeling everyone's love and support for us made everything okay.
Sometimes in all of our hustle and bustle it's easy to forget how beautiful life really is, and how wonderful people can be. Today Benny's heart is working beautifully. He is sedated and recovering. Everything is going well, and we are feeling relieved beyond belief.
Thank you to all of our friends and family who have supported us through this surgery and beyond. We love you all so much.
We are sitting in the waiting room getting updates on our son Benny's heart surgery. So far it's already been a long day.
I woke up with the alarm at 4:30 this morning so I could give Benny his last nurse of the day. He was only allowed clear fluids after 5am. At 6:20 I woke back up to my mom knocking on the door for us to get going. Benny woke up and looked around, surprised that the lights were on so early. We sang our morning songs to him and he gave us his usual big smiles.
We packed up quickly and drove towards the hospital. The sunrise was beautiful, and Benny was enjoying sitting with his Grandma in the back seat.
We checked him in and met with the anesthesiologist, surgeon and nurses. Everyone was very friendly and it almost felt like a big party until it was time to give Benny up. This was one of the hardest moments of my life, watching the nurses walk away with my baby.
Every so often we would get news, but the large part of the day was spent waiting. Finally the cardiologist came in and told us that the surgery was a success! They need to stitch him up, so we are still waiting to see him now, but Benny's heart appears to be working exactly as it should now!
Thank you to everyone who has prayed, meditated and sent positive thoughts to us over the past few days. Benny will continue to need support as he heals, but the scariest part is over now. We are so fortunate to have had the very best doctors we could wish for taking care of our little boy. I'm just so happy that after so long spent dreading this moment we are finally almost on the other side. :)
We have had such a huge outpouring of love and support since Benny was born, it's been amazing. People often say "Tell me what I can do to help." It is not easy to accept help and I often draw a blank. But if there is one lesson that I've gotten from the experience of having a baby with special needs, it is this: Take the help.
We are one day away from Operation Day, and I know that once I get into the hospital all of my energy will be focused completely in the present moment of getting through this difficult situation. And I must remind myself that it isn't just a single day of surgery, but long days in the hospital after and weeks and weeks of recovery at home.
We do need your help, and we're going to need it for awhile. So here are the best ways to provide support for us during this time, and thank you in advance for whatever you are able to do.
1. Pray, visualize or think positive thoughts.
It doesn't matter to us how you pray or what you call it, we appreciate your thoughts and prayers for Benny. There is scientific evidence that praying for someone who is in the hospital can help them recover more quickly and with better outcomes. Your prayers for Benny truly matter.
2. Wear a Team Benny or green shirt on Tuesday, December 9th.
We have already been getting pictures of people rocking their Team Benny t-shirts posted on the Team Benny FaceBook page, and it is awesome! It really lifts our spirit to see that people are sending their love and support in this way. Wear your shirt (Team Benny if you have it, any green shirt if you don't) like it's Saint Patrick's Day on Tuesday, and send us your pictures via FaceBook, Email, Text or any way you please.
3. Bring us food and hugs
During the many stays that we've already had at the Rocky Mountain Hospital for Children, we've come to realize an important fact. Hospital cafeteria food sucks. When Benny was first born our good friend Todd set up a little food train for us, and it was *so* nice to get those deliveries. Our out of town friends sent food via restaurants, and while we missed their company, it was still so helpful and appreciated. For this next long haul, the lovely Kim Huss set up a meal train you can sign up for here. If you need to send food from afar, you can order gift cards for us from Morning Glory Cafe, Thai Monkey Club or the Pho Cafe.
4. Give Caspian extra love
This poor kid became a big brother just weeks before starting middle school. It's the worst! He absolutely adores Benny. This surgery (and the possibility that he could lose his brother) terrifies him. He is in great need of emotional support from friends and family. He will be in Santa Barbara with my sister Leise the week of the surgery. If you're in the area, give him love in person. If not, leave messages of support for him in the comments section of his site, babybenjamin.weebly.com.
5. Buy a shirt or just chip in a few bucks
We are already struggling to keep up with the medical bills that have been coming in from the delivery, NICU and two hospital stays we've had so far. We have good insurance, but those co-pays and deductibles add up fast! So many of our loved ones have been asking for shirts but weren't able to buy them from Pork Chop Press in time, or are asking if they can just donate, so we've decided to set up a campaign on booster.com. You can buy a shirt here anytime in the next two weeks, we really appreciate it.
We have already received so much support and we are so grateful. This is an incredibly stressful time and I don't know how we would have made it through without the wonderful people who have stepped in to give us a helping hand.
Thank you all so much!
Since becoming a mom to a little boy with Trisomy 21 I have written a lot about Down syndrome and disabilities. I am a storyteller, wife and mom to a teen and a toddler. Life is busy!