Dear Family and Friends,
Today, August 31st, marks Everett’s 158th day at home. You may recall that Everett was hospitalized for 157 days, so today he has officially been home longer than he has been in the hospital. YEAH!!! It is an especially important day for Zac and I who are finally able to feel as if Everett is completely ours and the times of “sharing” him with doctors and nurses are far behind us. Many of you might not understand why this time frame is so significant to our family, but when we spent the first five months of our son’s life taking direction from medical staff, having to ask for permission to hold our child, and struggling to bond with a person who at many times we thought we would lose, it made it hard to define ourselves as parents. We were not allowed to do much of the typical parent stuff like holding, feeding, diapering, soothing, bathing, etc. for so long, that when it came time to step up, we felt incompetent. And while it was wonderful to have all the training from professionals, it seemed to smother my “mother’s intuition,” because there was always someone with more knowledge just a phone call away. It has taken a long time to heal from all these emotions, and in reality I still have my days of feeling as if Everett was birthed from a hospital instead of from me, but it is getting better with everyday that he is home. And today is a really, really great day for our family!!!
Last Saturday we attended the SV NICU reunion. It took place at a local park and hundreds of families were there. The “NICU Grads” ranged in ages from teens to babies barely three months old. We spent a long time talking with several of the staff who cared for Everett in his early days. Many of them were astonished to see how much he has grown and how well he is doing. They kept repeating, “And that’s all he’s got going on. Gosh, he’s doing fantastic!” Zac and I couldn’t agree more! It was an emotional day, full of healing and the sensation of coming full circle. The last time we left SV, we thought we were going to lose Everett. And this time, we were able to show him off, healthy, robust, alert, interactive, and of course, flashing that Everett smile that we’ve come to love so much.
In addition to my personal emotions about Everett and his journey, I was also taken aback by the emotions I felt for the function as a whole. I found myself looking out at the huge lawn, which was covered with active children and their parents, and I was caught up in the emotion that each one of those children was a miracle. And in addition to that, here were hundreds of people whose lives were being enriched by children who would not walk this Earth if not for the loving and caring hands of the NICU staff (and the upholding prayers of many and the healing hands of God). I welled up with tears :-) I was so overcome that I found the head of the NICU Department and specifically said to her, “I hope you and all your staff know that each one of these children are here because of your care. Look at what you’ve accomplished and the lives you’ve touched. What a moment in your career to be able to look out and see the beautiful fruits of your labor.” My heart swelled with gratitude, admiration and love. And I was also a little jealous, for here are people who can look back at their career and say (without a doubt), I made a difference, I saved a life, I helped create a family. WOW!
Meeting other parents who have traveled a similar road was also a healing blessing. We encountered one couple who was very open and honest about their struggles after having a NICU baby. For the first time, in talking with them, I felt like I wasn’t a crazy mommy. They were saying SO MANY of the things that I’ve felt and have been too scared or ashamed to vocalize. I felt relief in finding these parents who were willing to “Tell It like It Is.” I walked away feeling as if God placed them there so that I could heal and maybe they could heal too. And the really funny part was that our due dates for our boys were almost identical :-)
But enough about Zac and me…back to the real reason for this email. ‘Lil E is doing fantastic! I feel as if he’s grown up so much in the last ten days that at times I hardly recognize him. He’s weighing in at 14 lbs 13 oz. He can now roll consistently anywhere in the house. He’s pushing up to extended arms and is starting to get his knees under him. We express-ordered a baby gate because I think crawling is in our very near future. He’s eating two solid meals per day with bottles in between. He isn’t a picky eater at all, which is wonderful because I don’t like to cook. We’ve made it all the way through the Stage 1 and 2 foods and are now working into more “exotic” cuisine. We tried some Gerber Puffs yesterday (kinda like Cheerios), but he couldn’t tolerate the texture so we are sticking to baby food for now. His formula is no longer thickened…YEAH! And he’s tolerating it well. He’s sitting up with minimal support and LOVES to be standing. His mind just wants to Go-Go-Go but his body is still catching up. And times he is easily frustrated. We hope that crawling will help alleviate some of that anxiety for him. We are still doing physical therapy and education therapy each week. The tasks change as Everett changes. So now we are working on sitting up, positioning for crawling, bearing weight on his legs, and object permanence. It is all going well.
We return to CHLA on Friday for his (hopefully final) eye exam. We pray that there will be no changes to his retina and that the doctor will release him from needing follow up visits. We have an appointment with his Pediatric Surgeon in October. We’ve decided to pursue the hernia repair as soon as she is willing to offer it. We’ve decided that the less chance of Everett remembering his hospitalization and pain, the better his outcome will be. We’ve also decided to have his abdominal scar revised at the same time. This was something the surgeon offered on our first follow up visit. Everett’s scar, which stretches horizontally from one side to the other just above his belly button, is very jagged and puckers in several places. There are also about 20 very visible suture lines. When the surgeon first did his surgery, she apologized for the look of the incision, saying that it had to be that way because of how sick he was and the likelihood of him getting an incisional infection. At the time, we didn’t really care. But now, we worry that the scar’s appearance may bother him someday. While it is not a surgery we would electively put him through, the scar revision can be done while she repairs his hernias, so we’ve opted to do it. I’ve just ordered him this adorable onesie that say “Chicks Dig Scars.” Look forward to those pictures in my next email. Our little man continues to amaze us everyday, and everyday we are thankful that God blessed us with this precious miracle. We are so much enjoying watching him become the person God wants him to be and we continue to bask in the love that all of you hold for our family :-)
On a side note, Zac and I have been invited to speak at a convention held in late September by the March of Dimes. You may know that the March of Dimes is responsible for much of the new research in preserving and improving the life of babies born prematurely. We will be part of a parent panel that is focused on ways to improve the family experience in the NICU setting. We will be speaking before hundreds of doctors, nurses and therapists. I look at this as an amazing opportunity to make a difference for other families who will have to endure the same struggles that we did. I am excited at the possibility of paying the kindness that we received forward to someone else. I know that it will help heal more of the wounds that Zac and I carry and I am SO excited to tell people about Everett’s amazing story. Of course, all of you, Everett’s prayer warriors, will be mentioned more than once too, as we wouldn’t be here without your prayers and support and the strength of God :-) I can’t help but think again, how all of this was part of His perfect plan and that this experience will continue to enrich and improve our lives in ways we can’t even begin to understand for years to come. We are so blessed!!!
I can hardly believe that in two short months, our little man will be a year old. YIKES! Until the next update, we thank you for continuing to love our family…and we love you back with all our hearts!
With Love,
The Bollinger Family
P.S. I almost forgot, Everett said his first word! “Dad.” Best moment ever!!! And pictures are attached.
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