The New Normal?

 Sweet pea's first hike. Check!

Well, Friday marked one week since Everly's discharge from the hospital and our return home. Monday marked the beginning of our first "real" week at home. Jimmy started back to work, the boys and I did some school and in between we all spent time holding, kissing and loving on sweet pea. Nana & Papa were over each day to help with toting Kendan to the park after school, doing laundry and just the extras we didn't seem to have time for anymore. Thank goodness for the meals that our friends and neighbors are bringing to us! In the midst of all our "new normal," we also threw in a few doctor appointments and some baby bucket list activities.

Speaking of baby bucket list...we've added a couple new items and crossed off a couple as well. To recap, here's what we have so far:

Go to beach check

Go on a hike check and check

Snuggle Kendan in his bed check

Snuggle Garren in his bed check

Watch a balloon check

Go to Nana & Papa's house...this weekend

Go for a bike ride

It looks like Everly has had a good number of items checked off the list in her first week home. Can't wait to see what awaits her next week!

 

Week Three Stats

Monday was our first pediatric appointment at the Complex Care Clinic across from St. Joseph's. For those of you who aren't familiar with it much like we were not, it is a pediatrician's office that specializes in patients with complex health issues. The great thing about it is that many other specialists are literally within the same area. It's one very large series of twists and turns each with another specialist at each corner. The plus is that you don't need to go from place to place for labs, appointments, etc. The take away from our first appointment was that he felt she may benefit from a "swallow study" at the GI doctor. Basically, that will determine if she can safely drink from a bottle and we can remove her og tube. I am thrilled at the mere thought of this! Our appointment is on Monday so I'll let you know if and when she can do the study.

This past Wednesday night will go down in the books as one of the scariest, most frightening nights we've ever had. Starting shortly after dinner around 5:45, Everly's machines began to alarm letting us know that she was de-sat'ing. Now for those of you who like me before three weeks ago knew nothing whatsoever about "de-sats" and such, let me help you. Everly is connected 24 hours a day (except bath time) to a pulse oximeter machine that measures the saturation of oxygen in your blood and her heart rate. Oxygen saturation is represented in percentages which range from 0 to 100% which is room air. The saturation is affected by the amount of inhaled oxygen so for babies with apnea, they sometimes "forget" to breathe and need stimulation and even extra oxygen to bring their numbers back up. When her numbers drop, it indicates that there is less oxygen in the lungs and a drop in the oxygen levels and thus a drop in saturation, hence the term "de-sat."

The scary part for us is that Everly, in addition to the apnea that many young babies have, also has a severe heart defect that will possibly lead to congestive heart failure if left untreated. She is not able to receive surgery for that now for one because of her small size and the risk that involves and for two her neurological development may hinder her ability to "wake back up" after surgery if and when she would be able to withstand it. Less than 10% of babies with Trisomy 18 have her specific defect (Double Outlet Right Ventricle) and is considered very serious and life threatening. How does this relate to what happened: simply this, if she goes into heart failure, no amount of stimulation and oxygen will help her. We were worried she was going into heart failure Wednesday night.

So, getting back to Wednesday nights episodes, there were moments when it was difficult to see if she was breathing at all. No chest rising and falling, eyes rolling back and the worst: the dusky color, the bluish purple coloring that happens when there's a lack of oxygen in the body. Between 5:45 and 8:30, Everly had 6 "de-sat" episodes which was a record number for her. In the hospital, we watched her have episode after episode but almost always separated by hours or days even (with the exception of one awful night in the hospital and she did have many episodes right in a row). But this night at home, her numbers plummeted and we worked for what seemed like forever to get her numbers back up time and time again. Watching your child turn blue and not respond to oxygen which we were giving her at that point...terrifying. Eventually, she did come around and her skin pinkened but the memory of that evening remains.

Through God's divine timing, our wonderful pediatric Hospice nurse Mary literally happened to knock on our door at 8:30 not because we called her but because she was on her way home and was dropping off a piece of equipment to us. Love. God's. Timing. He brought Mary to us at the time we needed her most. Let's just say that the significance of her name alone does not escape me. She not only brought a calming peace into the home but she was able to talk with us about the episodes and eventually put the nasal cannula back on Everly to ease her breathing. While we were giving her "blow by oxygen" which is essentially holding an oxygen mask slightly above the face, we hadn't thought to put the cannula back in with continuous flow yet. What a blessing she was and how grateful we were to Him for her timing! She stayed with us for about an hour and a half until Everly was stable again. She even followed up with us the next day AND contacted our Cardiologist and had them bump up her appointment from next Monday to Friday. We so appreciate her assistance and care.

Speaking of cardiologist...we did go early to see her cardiologist for an EKG on Friday and in a nutshell the report was that Everly is NOT in heart failure nor does she see ANY signs of it at this time. Praise God! I can't even begin to tell you the relief we had when hearing that report. She said everything looked good...her numbers, her breathing, and all the other "things" cardiologists look for in cardiac babies. She even gave us the go ahead to try the "swallow study" at the GI doctor, too.

One concern with a cardiac baby is the expenditure of calories used in just about anything from crying to swallowing which can burn lots of calories. She has a lot of weight to gain and due to her anatomy, it can take a bit to pack on the pounds. So, being able to allow her the chance to take in nutrition through bottle feeding is exciting. Who knew we'd be so excited about such a mundane and ordinary function? Perspective. It's all about perspective. (On a side note, I have tried to let her suckle but again due to the work, difficulty and the caloric burn nursing involves, sessions haven't been able to last but a minute or so each time. It's wonderful for me as a mama and never fails to bring tears when she can latch on if only for a few seconds.)

Snuggle time in biggest brother's bed...check!

Aside from the medical stuff which I shared so that you can understand more about what she is dealing with, we have had a wonderful week trying to find our groove or our "new normal" if there is one. We've enjoyed giving her nightly baths which she loves! Garren has stepped up to try to learn many of her needs and assist with those like her feedings. Kendan still loves to read to her and give her kisses. And, of course, Ala thinks Everly is hers and literally is right next to her at almost all times. I continue to kangaroo her at night for bedtime for the first few hours. Jimmy has piled the pillows in a vertical pile so as to ease the now-permanent crick in my neck. Jimmy continues to be the dedicated breastmilk/formula mixer for each feeding every 3 hours. Papa helps in whatever way he can as each day passes. And Nana mixes "washer woman" duties with those of a doting new grandmother holding Everly whenever she can.

Our daily life is not routine yet and I doubt it ever will be but it is comfortable and we are still so glad to be all home. Every trip out of the home takes a couple hours of planning, every task is coordinated and every duty cherished. We are so thankful to this sweet baby for showing us how valuable the little things are...the comfort of home, a nurse named Mary at our door, an attempt at bottle feeding and most importantly...every breathe we take. I leave you with this quote to kick start your week from our family to yours:

“What day is it?"It's today," squeaked Piglet.My favorite day," said Pooh.” ― A.A. Milne

As always, your prayers for Everly's continued good health are appreciated. We have another friend who is walking a similar walk whose daughter is named Melanie (Mama is Dana) that we would love for you to pray for as well. She came home from the hospital this past Wednesday.

 

Snuggle time with little brother...check!

Your comments here or on FB are always read, loved and printed! Please keep those coming and know that I LOVE to read what you have to share with us. Thank you for taking the time to do that!

Please continue to share Everly's story. Pass along her website and/or her Love For Everly FB page. Thanks!

With love and appreciation,

Crystal & Jimmy