Sweet Successes and Thankfulness

Ruby celebrated Christmas by sitting...unsupported...for the longest she ever has. Typically when you prop her up in sitting she immediately crashes to the side without any protective arm splaying to catch herself. Think - TIMBER! Children with Down Syndrome typically meet all of their milestones, but take a little longer to get there. It's refreshing to not have a set timeline for her and makes it all the more exciting when she does reach those milestones. I can't explain the amount of pride I have in this little girl. The amount she has been through in her short life...yet she keeps fighting, and loving, and laughing and succeeding in so many ways. This Christmas I am especially thankful for this little one. Her spirit shines bright and warms my heart daily. I hope this next year brings her less fights to face.




My dear Luna...It's been a tough year for her. She's at that age where you're in awe of her cuteness, yet you want to kill her at the same time. I know I will value her traits of fiestiness and independence someday as they will see her through hard times as a woman in this world. But at the age of 2, I could do without them! But I also know she gets them from me. Ah, Gig has his hands full with this crew of women! Lately I've been sad about her growing older. I want her to stay this dear age, yet grow out of the behavior. Can she be 8 in a 2 year old body? It's amazing how you can love someone so fiercly yet need a break from them so often. Maybe that's just it, I love her so dearly that it hurts when she acts her age. Kicking, screaming, and biting...when we were kissing, hugging and laughing two seconds ago? It's gotta be tough being 2. More mood swings than a teenager on her period! This girl is full of energy and wonder though, she continually keeps us laughing (when we're not wanting to kill her). I hope this new year brings calmness to her soul.

Gig...my partner on this rollercoaster ride. We've had so many challenges and stresses this year and I admit we haven't always sailed through them smoothly. Whether this ship is sailing or sinking though, there is no one else I would rather be on it with. What doesn't break us can only make us stronger (as well as crazier, occasionally depressed and drunker...but strong!). Thank you for raising my beautiful babies, for being my rock, for sharing another year of life with me. May you realize your worth in this world, in our lives, and in our hearts this year. You're wise and talented...know this and believe it!

Our friends and family...it's been a year of so many new adventures for us. Thank you for supporting us through it all. Gig and I have never surrounded ourselves with many friends. We prefer to keep a handful of quality ones over masses of mediocre. If you're reading this blog, consider yourself someone we are blessed to have in our lives. I wish you peace and health.

We look forward to many more years with all of you. Thank you for being in our lives.

Happy new year!

Autumn

HARVEST
We harvested kale, carrots, garlic, chard, cucumbers, zucchini, leeks, potatoes, lettuce, cabbage, beans, peas, tomatillos, tomotoes, winter squash, basil, cilantro and 5 blueberries this year. Kind people let us harvest their raspberries and cherries, and we made jam. Future years will bring us our own fruit as we planted apple, plum and peach trees, grapes and raspberries. The gardens are put to bed for the year with garlic and asparagus nestled in the cold earth. More garden space awaits us next year. The joy of permaculture!

HALLOWEEN

We picked pumpkins with my sister and niece and trick-or-treated at my work. I made Luna a Tinkerbell costume and Ruby got Luna's old chicken costume. Luna is really starting to get into the holidays which has been fun.

HEALTH

Ruby is eating again! She is taking a bottle and has started spoon foods also. She has a good appetite and is gaining weight well. We are glad for the tube to be gone and hope it's smooth sailing from here on out. I am very pro-breastfeeding and admit I've had my judgements for bottle feeders. Ruby reminds me that everyone has their own story that you may just not be privy to knowing. I think Ruby will make me a better person. Ruby just had her 6 month checkup with glowing reports. The doctor typically hands out a list of milestones at each checkup, but has realized we're not interested. We found a book at the library called, "Ruby in her own time". It rings so true. I remember worrying Luna wasn't reaching a milestone by some set time a book said she was supposed to. With Ruby, it's all in her own time. She is the strongest little baby, and is developing in her own way and her own timeline, no expectations.

HAPPINESS
Luna is starting to enjoy her role of big sister. She introduces her "baby" to strangers, holds Ruby's hand while we read stories, and brings smiles to Ruby's face faster than anyone can.

The Miracles of Medicine... and my Kick Ass Kid!

We are home from the hospital! I must admit I do miss it though. It was a vacation of sorts that allowed me to sit and hold my baby for hours on end while reading and not worrying what my dear Luna was getting into. If only I had been on a beach and my child not in the ICU! As most of you know, Ruby did fabulous with heart surgery. It's amazing how resilient kiddos are - if not for the bandage on her chest you wouldn't even know she had open-heart surgery less than a week ago.



Although I am a fan of modern medicine, I believe it is sometimes over-used and can save a body that is void of actual life. Right now, I am thankful for modern medicine. My little girl would not have lived without it, and hers is a life worth living.



Waiting for surgery

As predicted, the hugeness of surgery didn't hit until we had to say goodbye. We sat at the hospital all morning with a parade of nurses and doctors coming in to introduce themselves and explain their role in the procedure. We chatted and joked. When it was time to take her I realized this may be the last time I ever see her, and so the tears flowed. They told us it would be an hour to prep her, and they would call us before starting. They kept us apprised of the procedure with scheduled phone calls throughout. It was over in 3 hours. The surgeon came out to give us the good news of a successful surgery and direct us to our baby girl in the pediatric ICU.

 

Tubes and machines galore

When we first saw her in the ICU, she was hooked up to a million lines and machines, sedated and on a ventilator. The tears flowed again. The nurses in the ICU were wonderful and took loving care of Ruby.

No, that's not a bomb strapped to her chest

By the next day almost all of her lines were removed and the number of machines were dwindling. She was on a morphine high - eyes open but no one home. Within 3 days she was back to being herself, pulling out her feeding tube, wiggling herself down the crib, grabbing any line she could with her hands and toes. By day 4 she was smiling infectiously at you whether you were there to hold her or draw her blood. Ruby made lots of friends.

There's that smile and HUGE belly

 Just a side note to ponder for a moment. People always tell me how children and persons with Down Syndrome are generally such happy people. I know, quite a blanket statement (especially since there is a documentary on Netflix about a guy with Downs that likes to swear and watch porn). I don't know if it's Ruby's overall nature, the Down Syndrome, or a combination of both, but she is the happiest baby I have ever seen. She made everyone at the hospital smile with her bright eyes, loving smile and warm nature. She greets each day with a huge smile. I love it and I love her. Once the fear of death dissipated, it was wonderful holding my baby for hours on end. I haven't been able to hold her this much since she was born. I missed my dear Luna, but I wouldn't have wanted to be anywhere else.


Heart surgery teddy bear with lines and bandages just like Ruby's

We anticipated discharge by Sunday, but Ruby was still on oxygen and her blood oxygen saturations were dipping down while she slept. So we stayed until Monday, when we were given the green light to go home! I finally put her pajamas she wore to the hospital in the wash last night. They smelled like her and I was afraid to wash them in fear of something happening to her and not getting to smell her again. I started to throw them in the wash each night but couldn't bring myself to it until last night.

We have a follow up swallow study in 3 weeks. Fingers crossed for coordinated suck, swallow, breathe (instead of suck, breathe milk into your lungs, swallow) and return to eating by mouth. Although midnight tube feedings are much easier than bottle/breast (as she can sleep through them), we'd much rather do things the old-fashioned way.

We are so very thankful for everyone's kind words/prayers/thoughts, meals, and donations towards our coffee/food fund. We were well taken care of by family, co-workers and friends and are very much appreciative of it.

Thank you for all of the love.

There's a hole in my heart that can only be filled by you

Lady luck is not on our side these days. Ruby is scheduled for open heart surgery September 14th. They anticipate about a 7 day hospitalization, with the first 3 days in ICU. I don't think the hugeness of this has really hit us yet. I'm sure when we kiss her goodbye (I prefer, "see you soon") at the hospital it will really sink in. I get choked up when I think about seeing tubes and wires coming out of her and her perfect skin forever scarred down the middle of her chest. I try not to think about what could go wrong and focus on the thought that this could all be over soon. No more worrying about her heart and hopefully getting back to eating again soon.

Ruby is doing very well for basically being in controlled heart failure. We had to boost up her meals with formula as her little body was burning through her calories and she had stopped gaining weight. She's bulking up quickly now and even showing a bit of chubbiness in her thighs. She's holding her head up better every day and rolling over every chance she gets (non-stop, and then gets upset because she doesn't want to be on her stomach).

We've started explaining to Luna that Ruby's heart is broken and the doctor is going to fix it. She asked if it was because she jumped on Ruby. Then she told me she was a big girl, not a baby, and not a doctor. I said "okay" and moved on.

We fall more in love with both of our girls everyday. For as many challenges parenting presents (we drink a lot), these two little ladies make it worth it.

If you are sitting there wondering what you can do to lend a neighborly, loving hand during our hospital stay, we would love any donations of coffee cards (they've got sandwiches and yummies too) to nourish our bodies while we try to keep our spirits up and take care of our baby girl in the hospital.

https://webstore.technologyservicesmanagementgroup.com/Stores/hammercoffee/Browse_Item_Details.asp?HSD=1&Item_ID=66

Please keep our family in your thoughts and prayers.

Cuteness

Luna Puppy likes to play fetch

Every Dark Cloud...

The Silver Lining...Ruby is growing like a weed. She turned 2 months yesterday and has gained 3 pounds since birth. She weighs the same as Luna did at this age and Luna started a pound ahead of her at birth. Ruby is currently in the 25th percentile for height and weight on the Down Syndrome growth chart (yes, she gets her own growth chart) and 75th percentile for head size! She is definitely a Schlich, as Luna's head size was in the 90th percentile while her weight hardly even made it on the charts.

Ruby has gotten so strong, is smiling, is working hard on lifting her big head, is very alert and is awake much more now. She's a very sweet baby that hardly cries and loves to be held. Luna is talking up a storm and comes up with the funniest things to say. We find ourselves reminiscing each day over the crazy things she says. She is learning to ride a balance bike we rigged up for her and loves to climb large boulders at the park. We are very blessed!

The Dark Cloud...Ruby had her follow up with the cardiologist this week. We were hoping for the good news of the holes in her heart closing, but unfortunately weren't that lucky. Aside from the holes not closing, the pressures in her lungs are elevated which is causing the right side of her heart to work harder and has enlarged her heart. Ruby has had some feeding issues since birth with choking while breastfeeding. We had a swallow study done which showed she was silent aspirating milk into her lungs. A few weeks ago I had to start pumping, thickening her milk, and feeding it to her by bottle. After the cardiologist appointment, he was concerned the pressures in her lungs are due to continued aspiration. So, we spent a night in the hospital and they placed a Nasogastric tube. Ruby now recieves her meals through a tube in her nose that goes to her stomach. She doesn't seem to mind the tube, we just have to keep her grabby little baby hands away from it. The feeding is actually easier than the bottle system we were having to do as well.

We go back to the cardiologist in a few weeks and will hopefully hear that the pressures have decreased. If not, we are looking at open heart surgery in the next few months. If the pressures improve, we can hold off on surgery as long as Ruby continues to grow and stay healthy with the hopes the holes will close or for surgery when she's older. Please keep us in your thoughts and send little Ruby some good pressure dropping/hole closing vibes.

As depressing as all this news may sound, day to day life is pretty normal. We do go to a lot of doctors and therapy appointments, but otherwise Ruby is your typical baby and the biggest threat to her life is her big sister over loving her.

The Road Less Traveled

Sometimes we choose the path we will take in life, sometimes it chooses us. About an hour after Ruby was born, we were given the news that she may have Down Syndrome. The Midwives recognized a few markers characteristic of downs and shared their concerns with us. We spent a few days of asking ourselves, "does she or doesn't she?". At times we could see it in her eyes, other times we saw nothing. We'd talk ourselves into believing it and then convince ourselves otherwise. We took her to the pediatrician and a blood test confirmed the diagnosis 5 days later of the presence of an extra 21st chromosome. And so began our journey...and hence our new motto, "it could be worse".

We were sent for an echocardiogram as kids with Down's have a 40% chance of congenital heart defects. We unfortunately were given the news she was within that percentile. Ruby has 2 holes in her heart, the cardiologist is hopeful the more serious one will close on it's own, but otherwise we will just be on the watch for signs of heart failure which would then lead us to open heart surgery. The other hole isn't something we have to worry about until she's older and it can be taken care of with less invasive surgery. So, it could be worse.

For now, we have a typical newborn who just eats, sleeps and poops. She's very cute and is a dream in comparison to our dear 2 year old Luna (who is dealing with not being the center of attention...and with the terrible 2's). We've been running through a litany of tests to see if she has one common ailment or another that tends to affect those with Down's. They are setting us up with a geneticist as well who will help guide our next steps in this whole process.

We go through waves of grief, but remind ourselves how no future is written for any child. You can have a completely healthy and typical child who is diagnosed with Leukemia or a slew of other afflictions. We question whether we would have wanted to know this before she was born...but aside from the weight of this news brought upon us shortly after finally having our home birth we had dreamed of, we had a few days to fall in love and bond with our new daughter without any confirmed label, grief nor expectations. So although the road we are about to embark on in life with our new daughter isn't what we had expected, this road less traveled may make all the difference.