Mira FAQs - two weeks in
So, I typed up a huge blog post a while back and accidentally deleted it from my phone, but I really feel like it's important to answer the big questions friends and family have been asking us about our sweet girl, so I am re-doing it all for you guys. We're so grateful for all the love and concern for our sweet Mira.
1. What's wrong with Mira’s heart?
She was born with a condition known as HLHS or hypoplastic left heart syndrome, meaning because her mitral valve did not form in the womb, her left ventricle did not form either, and therefore she has a tiny aorta that is not capable of supplying her body with blood. This means she only has a right ventricle, which is meant solely to pump blood to the lungs. So the doctors performed a surgery that basically took her pulmonary artery and used it to build her a new aorta, then gave her a shunt to replace the pulmonary artery. This first surgery is called the Norwood procedure. She still only has half a heart, and her oxygenated red blood and unoxygenated blue blood are mixing in that one side of her heart. But now, blood can reach her body. The next two surgeries will change the route of her unoxygenated blood so that it will bypass her heart and go directly to her lungs. This will improve the quality of oxygenation to her entire body.
2. Did you know about this condition before you adopted her?
This tends to be the *really* big question everyone really has. And the answer is yes. We found out about her in March, and decided we would say yes to having our profile shown to her family. We had no idea they would select us, but we found out they did in May. We felt like it was important to be willing and obedient to God; that we needed to be waiting with open arms if He were to lead her to us. The crazy thing is that Jake got a promotion on the same day we discovered we were chosen by her birth family. Things happened fast! Within a few weeks, we met the birth family and started making hospital plans.
While we had some prior knowledge about HLHS, no amount of research can prep you for this rollercoaster. Throughout the entire process though, we felt sure that God would provide all we would need to handle her unique situation.
3. How long will she be in the hospital?
Well, that is an excellent question... one I wish I had the answer to. Babies with this condition tend to respond very differently. It is a very tricky procedure with lots of possible complications, and so each baby has to progress at his or her own speed. For the Norwood procedure, the average hospital stay is around 32 days so that is our goal. However some babies come home in as little time as three weeks and others stay as long as three months.
4. What's going on with the birth parents and have the contacted you? Can they change their minds?
The birth parents are very young and know that their circumstances would not be the best for Mira. And they love her very much and made the choice of adoption with her best interest in mind. We have an open adoption which means we have a relationship with them and share information. There is no legal requirement to this, we just have a covenant or promise to maintain contact. They have asked for a yearly visit or two at a neutral location. Depending on how our relationship evolves over time we may be open to more contact than that, but it will just take time to naturally build that. So far they have texted us a few times to see how she's doing. At this point they cannot change their minds, so it is a done deal. In the state of North Carolina, there is a seven day revocation period during which a parent can change their mind. After this time is over the decision is final. We are past that window! We will have a birth certificate with our names on it, just like her big sister Makinzy.
5. How are you guys? Do you need anything?
Well, we are doing okay. We are exhausted, scared, and hopeful too. We have been overwhelmed by the kindness of so many people who have reached out to love on us during this time. We are trying to take it day by day and just enjoy every new milestone.
Not really. So many people have offered to pitch in and give big sister a break from the hospital, cut our grass, and take care of any need we have. Visits from friends who just want to pray with us in the waiting room, grab coffee at Panera or go out for a bite of dinner off-campus, have been uplifting and helpful. Gift cards, notes and cards mean the world too. Truthfully, what we really need more than anything it's just prayer. We really appreciate people sharing her story and lifting her up in corporate worship and private prayer time.
6. Where did her name come from?
Her birth mom and I came up with it as a blending of our wants. While we had final say on her name, we wanted their input and wanted them to love her name. They had their heart set on the name Ira, but it felt a bit like an old man name to me, and I wanted a two syllable M name, so Mira was the compromise that we both loved. Not to mention predictive text suggests the word miracle when you type it! It also means peace in Hebrew, and made for a pretty darn perfect hashtag, #mightymissmira. It fit perfectly.
7. What does the future look like for her?
The next surgery will take place relatively soon and will require significantly less recovery time, at least that's typically the case. The second surgery is called the Glenn and third surgery is called the Fontan. The Glenn will be done around 3 to 6 months old and Fontan will be done around the age of 3. At some point in her life, she will likely need a heart transplant, but who knows what advancements in the field will be by that point! She may never be a marathon runner, but she can live a fulfilling and relatively normal life. Despite how normal she may appear on the outside, we will always have to advocate for her because she will be operating on half of the heart doing twice the work.
8. Will you go back to work?
Yes, eventually. My hope is that I can stay out six weeks, then go back and come out another six weeks when they do her Glenn, but we really won't know until we get there. She will also have in-home nursing care for several months.
9. How is she doing?
Well, it seems like she is progressing slowly but surly. She definitely does things a little slower due to her tiny size. She did so well after her surgery we kind of jumped the gun and she failed her extubation and had to have her breathing tube put back in. She wasn't strong enough and her lungs seemed to have too much fluid around them. So the goal lately has been to grow and get stronger. Once she has drier lungs and can take a full feed through her ng tube, they begin her on pressure support trials to practice breathing on her own. If she can do this well consistently, she'll have her tube removed and then we can move up to the 8th floor and begin learning to take a bottle. Mommy and Daddy will also learn all about caring for Mira there in preparation for going home.
10. Was she a premie? When was she born?
Nope! Mira was born on June 20 at 2:37 am and weighed 5 lbs and 2 oz. at around 38 weeks, meaning she was considered full term. She just was in the NICU for a brief time before going to the CVICU (cardiovascular intensive care unit). They induced her early due to the heart condition so it could be planned at a hospital equipped to handle her situation.
Our one goal has been to be obedient to God by being willing. We have been blessed by so many hugs, messages, texts, cards, donations, visits and more. The way our friends have surrounded us in prayer has been huge. We really want to thank everyone for the love and support we've received on this journey! One look into Mira's bright eyes and you'll agree she is worth it all!