Bee: Carrier of Wisdom, delicate physique

Change is a loaded word.  By definition it has two meanings- to make something or someone different or to replace something with something else.  Since last year, our family has gone through many changes. Changes in our feelings, changes with our dynamics of our family, and changes with our reactions to situations. A mentor shared an article with me that got me thinking about change and how hard it is to change people. One of the quotes from the article was, " Change the situation, or change how one perceives, interprets, or reacts to its details, and it will be easier to change behaviors"  We have had 8 months of Evey being with us and 6 months with her being at home. It got me thinking about how much growth she has made  just by changing her environment. She amazes us each month when she reaches a milestone! We also changed her nursing company and boy has that been a blessing! The nursing company focuses just on pediatrics and they make sure they hire TOP notch nur...

In Genesis Chapter 3, the Serpent questions Eve saying, "Did God actually say, 'You shall not eat of any tree in the garden'?" He goes on to tell her that it is ok and talks Eve into getting the fruit. When God asks her what she has done, she says, " The Serpent deceived me, and I ate."   If Eve wouldn't have listened to the Serpent, we would not know good from evil. In a perfect world this would be nice. We wouldn't be anxious or overwhelmed; we wouldn't have hate, competition, worry. After looking back at 2023 I am glad Eve listened to the Serpent and we know good from evil. Does it suck that we know good from evil?  YES, but we grow closer to God because of evil things and GOOD things.  2023 brought us Evey. It also brought us into a new world of congenital heart disease, trisomy 21, long hospital stays, many appointments, lots of medicine, making sure our children don't become glass children. It has been overwhelming. It has brought more ...

"But those who hope in the Lord will renew their strength. They will soar on wings like Eagles; they will run and not grow weary, they will walk and not be faint." Isaiah 40:31 Hope and Patience is what we have been thriving on since Evey was born. Hope that she will continue to make progress and patience as the Doctors plan her route of care. The above verse is no doubt one of my favorites. I first heard the verse in "Abba" a Rebecca St James' song in 1996. The hope we have renews our strength, it gives us patience as we wait to see what God has planned for Evey.  Evey has had an eventful month. At the beginning of October she received her G-tube. At the same time, they did a LADD procedure to correct her malrotation of her intestines. She did great through the surgery! It usually takes 2-3 days to recover from the surgery, however we spent an extra 2 days due to her desating into the low 50s and high 40s. After all the medications left her body, she was able t...

Real life, realness, reality, realize.  What is the meaning of real? It means truth, genuine.  The genuine, true, reality of having a baby with medical needs is HARD!  So many women comment to new moms who are expecting babies with down syndrome that it is better on the other side. When you give birth to your baby and you see them, your worries go away.   In part this is true, but for the moms who had to have babies in the nicu and go home on medical equipment and medicine, it is hard! I made a video of what all we have to do for Evey, from her oxygen, to her medicine, to her feeding pump, to her bottles and finally to her NG Tube. It's a lot, but she is worth it. It's also overwhelming!  Overwhelming to be by myself when she rips her NG tube out and I have to try to put it back in her while her head is moving. Trying to put it back in her and worrying if she is going to have a tet spell and stop breathing because she is crying so much.   This pas...

I'm bringing home a baby bumblebee, won't my mommy be so proud of me! After 77 days in the hospital, we were able to bring Evey home on August 19th!  God is Good! We were told earlier in the week that we would not be able to pick her up until Monday, August 21st. When we went to visit Evey on Saturday, we got there before rounds. Holly was her nurse that day. We loved Holly because she always took good care of her either during the day or night. When they did rounds, the cardiologist that first saw Evey after she was born was on the team. They went through all of her stats and at the end, we asked if we were still on track to pick her up on Monday. The doctor looked at the team and said, " I don't see why she couldn't get discharged today!" So of course we were like YES! We had the kids with us and they were troopers hanging out at the hospital from 9am until 4pm!  Thankfully, Evey was able to see her BFF before leaving the hospital! It was a great moment and ...

 The busiest time of year The end of July marks the end of the summer for most teachers. AUGUST starts one of the busiest times of year for teachers as we get back to our classrooms and plan for the upcoming year.  It can be exciting, but also stressful at the same time.  We are given one week to go over all the safety procedures, get plans ready, get our rooms ready for open house and first day of school, go over important paperwork for students and ourselves and listen to our administration go and on about rock bands or Shakespeare and how it relates to the important work we do each and every day.  😜 Evey has been busy getting ready to go home as well! It's officially bee season and she has made so much progress she is officially on the step down unit. One could say that she is on her way to her beehive.  S oon Joshua and I will be learning how to take care of her at home.  We will be relearning cpr, learning how to take her pulse, learning how to insert...

The Cross is the symbol of God's love.   As Christians, the Cross is a part of our faith. Some could say it's central to our faith.  It's the thing we (should) cling on to when things get tough. This past week has been nothing but tough. It's been a rollercoaster of ups and downs both physically for Evey and emotionally for me and Joshua.  She was intubated, extubated and intubated again all within a week. The doctors thought she was starting to be in a good position to get a CTA on Thursday 7/13 ( a 3D map of her heart to show the surgeons how to do the stent procedure) then get a stent the next day.  On Wednesday, 7/12, she had a great day, she was alert, her numbers looked good and she even got into the Mamaroo to be rocked some.  She was on 100% oxygen and nitrate through a high flow cannula. She was lifting her head in the bassinet a lot so we were thinking propping her up in the mamaroo would appease her and it did.  She loved it! She was sucking...