So Sweet to Bee One!
This time last year I was in the hospital just waiting to meet her. Thinking about what life would be like when she got here, well it's definitely been a wild ride!
We never thought she would be in the hospital for 78 days. We never thought we would be going home with a medically complex baby and we never thought we would have to wait two times before having her heart surgery.
All of these moments surpassed how we imagined life would be like with Evey. We have met the most wonderful people, including her therapists that love Evey and work with her to get her to where she needs to be! Yes it was hard and still is hard to have a baby with so many needs, but it has also taught us to take one day at a time-be in the moment, celebrate each little new thing she does.
We had so many prayers coming our way on surgery day that we were totally at peace when we left the house to when we saw her. The days leading up to the surgery, I had mini pep talks with Evey and told her that she only gets ONE week in the hospital and she said, NOPE, I'll just stay in for 6 days!
She did great through the surgery and was recovering well until the 3rd day. She got super mad and would not calm down. The nurse was very rough with her and I ended up reporting her because Evey would cry in pain every time this nurse would touch her and the nurse was not listening to me when I was trying to tell her how Evey is with her pain. Evey is very opinionated when it comes to her comfort level. She likes to be cool, not hot and she likes to feel secure not loose. Evey had to wear the high flow nasal cannula when she first came off of being intubated and she tolerated it until she knew she was ready to take it off. I could tell she didn't need it anymore when she started grabbing at it over and over. I would watch her numbers and if they dipped I would slide it back on her. It got to the point where she snatched it off every time I tried to put it on her, so I just let it stay off. She did great with it off so of course I asked the nurse if we could reassess the high flow cannula and put on a regular cannula. Well she didn't like that because it was an hour before shift change. She was very rude to me so I wrote a complaint and the patient advocate got back with me the next day. I was able to talk to the nurse manager as well and she assured me that she would use this case as a learning opportunity. I told her I understood because as a teacher myself, there is always something we need to work on each year and if I was in her shoes I would want to be retrained on how to handle different cases. I think any job that deals with people, you have to look at it as having good customer service. Yes, you have to follow policies and procedures but 80-90% of the time it's also how you treat the person you are working with-being a good human.
When we went for her follow-up visit with her cardiologist, she said that the team thought she would still be in the hospital and that she rocked it. I told her that she is really tolerant of a lot of things! The cardiologist joked that she gets it from her mama because anyone who can stay in the hospital for a whole month on bedrest is pretty tolerant themselves.
She's right! Evey has been pushing her sternum precautions ever since she has been home. She goes about each day like she never had heart surgery. She started rolling over 2 days post op in the hospital and then when she got home she rolled everywhere and then has been trying to sit up or crawl each moment that she gets. She is tolerant and wants to move like her sister and brothers. She has more energy and wants to go go go.
She has been cleared to not go back to the cardiologist for six more months. She will need to have a valve replaced between 10-13 years of age and then later in adulthood. Their hope is that she can go as long as possible for the next valve replacement! Hopefully in 10-13 years they can do it through the cath lab and not have another open heart surgery.
Today is her first birthday and we have a lot to celebrate and be astonished by. A lot of moms celebrate their baby's 1st birthday by listing their milestones: They are walking, they have 9 teeth, they are eating solid foods on their own etc. While Evey has not hit those milestones yet, she has done more in her first year of life than most one year olds or adults! She has had four surgeries-stents placed, stents ballooned, gtube placement and malformation correction and open heart surgery. She has been on multiple medications and has been weaned to only needing aspirin until November. She's had more surgeries than I have and I am 39! Her strength is what gets us through knowing she will soon meet her typical peer milestones. Our pastor, who also has a daughter with tri21, mentioned in his last sermon that they have learned to go at their daughter's pace and that's exactly what we will do. Slow and steady and enjoy every new skill she learns. I get to have her stay in the baby stage longer and I am totally fine with it!
She is working on sitting unassisted. She will sit for a good 3-4 minutes and play with a toy but once she loses her balance, she topples over. She still loves being on her belly and rolling from one side of the living room to the next. She is tolerating her helmet and she will need 7-8 more weeks in it to get her ears symmetrical and her head more rounded. She has beautiful strawberry blonde hair and it is straight as a board! I am pretty certain that Laney will have a blast braiding it when it gets long enough!
All the kids have enjoyed having her home and watching her grow in the ways she was unable to grow before heart surgery. They get excited when they see her pick up a toy and bang it on the tray, when she sits up and "talks" to them, when they hear her say "mmmmammmma" instead of "dadadada," and when she tries their food and she actually gnaws at it. She still has no teeth, but this girl LOVES to eat!
We will be going to the Ronald McDonald House of the Triangle tonight to serve dinner to the families for her birthday. We can't wait to show Evey her ceiling tile that we made for her last July. The kids had fun selling lemonade each day to get to our goal of feeding 50 people pizza! Thank you to everyone who donated money or golfed at Forest Oaks and stopped by their table!
We are looking forward to a fun summer where we get to breathe more and enjoy watching her grow and begin to love the things we do like swimming, travelling and finding new food joints and critiquing them -- just being a family of 6 with no future hospital stays for a LONG time! We will continue updating her journey as she grows and learns new things!
Be on the lookout for a summary of all of our summer adventures! You might catch us on Youtube giving critiques of the food joints we try during our NC travels!
Be like a Bee- hardworking, wise and delicate!
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