I wanted to tell you all a little bit about our last month and a half and why you haven’t heard anything from us since then.
Ella was doing extremely well from all aspects except for eating. Babies need to learn to eat (sucking, swallowing and breathing at the same time is hard) and, since she was on a feeding tube and drugged for much of the last few weeks, she never learned to eat. Compound that with the fact that her heart isn’t as capable as ours of pumping the oxygen she needs, and thus she tires easily. Eating was and is the biggest issue for her now. She will still require surgery over the summer at some point, but they can’t do it until she has gained some weight and grown a little. Thus, they kept her on a feeding tube.
After the girls were born, we had to stay close to Ella since she was in the NICU at Primary Children’s Hospital. She had some weird complications come up but in the end it was learning to eat that kept her there. Rather than driving two hours round-trip every day to go see her, we were saved by the Ronald McDonald House. Guys, this is one of the coolest charities around. Their entire existence is to help the families of hospitalized children. Imagine that your tiny little baby is sick and has to be hospitalized at PCH because they are the only hospital with the ability to deal with your child’s ailment. You have to have her life-flighted to PCH from, oh, I dunno, let’s say Texas. You pack a quick bag and fly to Salt Lake to be with your baby. Now, you’re here and you’re with your baby… Where are you going to stay? What are you going to eat? You have a few bucks in your wallet and that’s about it.
Ronald McDonald Charities will take you in and give you a place to sleep and 3 square meals (actually, food whenever you want it) a day. RMC is incredible. This place was clean, homey, comfortable and welcoming. The kitchen is fully stocked and all of the food is donated. The fridges (all 3 industrial-sized ones) are full of food and every night a local group comes in and cooks an entire meal for the residents. We never went hungry and we always felt taken care of.
One of the best parts of the entire experience is the community. Just knowing that every single other person there is a parent or family member of a sick child. That, if anyone in the world knows how you feel, it’s everyone around you. Everyone had a story and everyone cared about you enough to hear yours. Some families were pretty bad off. There were a few families from foreign countries, who had been there for months. A couple of the families there dealt with severe tragedy as they lost their little one while staying there. We felt like we had it pretty great, being that Ella was doing so well and we (technically) lived close enough that we could make a trip home every once in a while to re-supply. Needless to say, the RMC came through for us when we were tired, scared, hungry, helpless and terrified. They made our situation infinitely more bearable and even, dare I say it, enjoyable. We lived there for about a month and never once had to worry about the necessities of life, as we adjusted to having a baby with us with Livi and gave us the chance to really take care of our little Ella.
After all that, when we were told Ella could come home, we practically grabbed her and ran. The doctors felt she was finally doing well enough that they could send her home on a feeding tube. She would get tired after half-75% of her bottle, and we’d put the rest through her tube. After a few days at home, she began bouncing back and was eating her entire bottle, for the most part. A few weeks later on the way to a doctor’s appointment at Primary’s, she pulled her tube out. She seemed so much happier without it and since Cardiology wants her off if it we left it out. She ate her food and was a happy little baby. She will have to go back on her tube as she gets closer to the surgery, since she’ll likely get more and more tired as she progresses. The most important thing right now is that she gains weight.
Ella and Olivia are both home and are doing fantastic. Katie and I have discovered that sleep is a luxury at this point and that, when the opportunity comes, we have three choices: Eat, clean or sleep. Pick one.
Things are insane as I have a new job, Katie is back at work (for a couple more weeks, in order for her insurance to pay for everything) and we’re carting the babies back and forth to various family members and friends for babysitting.
We have felt a great outpouring of love and help and we truly appreciate all of you and your thoughts and prayers. I know we always say that, but we always mean it. 🙂
Because of Ella’s condition, she’s been placed on home lock-down for the most part. Except for a few select babysitters and family members, she is not allowed to have visitors. The smallest sniffle could literally means life or death and it’s still RSV season. This stinks, as Katie rarely gets to leave the house and we don’t get to have friends over, but Ella’s health is the most important thing right now.
Hopefully it warms up soon and we can start bringing the twins out to show off to everyone. 🙂
PART II – Cyber Moving Day
Two years ago, almost to the date, we decided that it was time to step outside of our comfort zone and share our secret with our world. It was time to expose our pain and heartbreak, time to share the knowledge and experience we had gleaned. We were scared to share this part of our lives and to make ourselves so vulnerable. But your reaction? It has blown us away. We have felt buoyed up by your love and support. Your help has turned turned this dark, heart wrenching journey into a ray of light in our lives as we’ve been able to share our story with those around us in similar situations. Truly.
This journey has been long, difficult and emotional. We want to thank you for following us here and reading our story. We really hope we have been of help to someone.
We know that a lot of our friends, and even people we don’t know who follow this blog, struggle with infertility. It is not an easy road, but there is always hope. At the very least, there is always support. We know what is feels like and we’ve been there. We’ve been told we would never conceive and we’ve been through the roller coaster that is fertility treatment.
Please know that we are here for you. We care about you, and we pray for you. Baby or not, it will all work out the way that is intended for your life, and in the way that will benefit you the most. We know that God lives and He will direct your life for your good. Whether you believe this or not, I can promise you that this life is about being happy. If you follow your course and push past the obstacles before you, you will find happiness and strength.
At this time, we will no longer be making regular posts on this site. Now, this is not a goodbye to our blog, but merely a hiatus. Because this blog deals with infertility, we will be moving our family updates and baby posts and photo dumps (We just had a photo shoot, so get ready for a big one) to our old blog (recently remodeled and moved to wordpress) at www.thegrassyknoells.com.
Please note that we will be leaving this blog open and accessible. Please feel free to share it around, especially if you feel that somebody may benefit from our story. First and foremost, be sensitive and don’t push anyone or ask silly questions. In whatever way, we hope that our journey can help others on their own.
When it comes time to add another member to our family, we will come back here and post and you all will be the first to know about it. 🙂 Our journey with infertility is not over by a long shot. It is simply on pause. Subscribe over there >>> to be notified of new posts and by all means, come follow us on our new blog to keep abreast of Ella’s surgery and our family life.
We sincerely love you all. Thank you for helping us to #BeBrave.