An OCH Thanksgiving

I have struggled to find the words to write to you all and tell you about where things are in life with Brylee. I can tell you as a mom that the last week has literally been a daily roller coaster of emotions. Things in our life and hers are changing moment by moment, hour by hour and it has been hard to narrow down what is the critical information to pass along and what is not worth mentioning because it will change tomorrow. So here is what I can tell you. As many of you know our sweet Brylee is truly a joy to behold and that has not changed in the least since her arrival at OCH (Our Children's House) 2 weeks ago. Everyone loves her, and I mean EVERYONE, from the staff to the other children. It is not uncommon to see one or two people debating over who gets to hold her when I leave the room and the other children are constantly popping in and out checking on her. While it is torture leaving her there, there is a great deal of comfort that comes for us knowing that no matter the minute or hour of the day she is so beyond being loved on and cared for.

About a week ago they made the decision to go ahead and put her Nasal feeding (NG) tube in. They had started to see what it looks like when she is going down hill and struggling with her feedings and they were not being able to provide her with the nutrients she needed solely through bottle attempts. This might sound a bit narcissistic, but thankfully over the last two weeks everyone has been able to get what we feel like is a firm grasp on how badly she struggles when she hits the point of exhaustion. They are seeing a whole big picture for themselves that is more than just what they read on a piece of paper. Thankfully due to the insertion of her NG tube she is now being able to gain some weight, show successful growth and her body is starting to work again like it should. This is absolutely imperative especially for her, because if she stops growing she stops developing, and due to the fact that her brain has been severely injured if she stops developing the damage could become irreparable.

OCH is absolutely one of the most amazing places i have ever been and an unmitigated blessing for our sweet Brylee. For starters the facility is structure so that the whole family is able to be around visit and participate, to a large extent. Maddox and Adaline get to come up and play with the other children as well as participate in all sorts of special activities and crafts put together by the OCH Child life staff. From the time we got there they have done an amazing job of making us feel at home and our family feel as whole as it can even amidst the separation. Upon arrival Brylee was assigned a feeding team consisting of a speech therapist that specializes in feeding therapy, a dietitian, and a pediatrician. They went ahead and had a physical and occupational therapist both evaluate her as well to determine if there were any other physical or developmental issues that needed to be addressed. This was huge because after one session with her, BOTH therapist came back to me voicing concerns with physical delays and cerebral palsy related issued all of which i had been observing at home. How amazing is it that we are being able to address these issues now with her at such a young moldable age instead of when she is two or three and they are virtually unchangeable. The second thing the therapists addressed is a desire to have Brylee evaluated by their doctor that specializes in pediatric rehab. This is a specialty I did not even know existed but will forever be grateful for.

Dr. Rashajree (raj-jee) was an absolute blessing. The day she came and met with us, I was hitting the end of my rope with frustration at not being able to care for my baby, or fix the struggles she was having. While on the other side fearing that I had "imagined" so many of the struggles I had articulated to the staff at OCH as well as Brylee's other doctors. She immediately came in a started playing with her, watching her, talking to her, and just observing her. When all this was said and done with a smile on her face she told me how great she thought Brylee looked in her cognitive responses and overall awareness of the world around her. Then also with a smile was very candid about the fact that as far as she sees Brylee will have a form of Cerebral Palsy or hemiplegia, but will be able to walk, and function in a normal world. She stated that she will struggle and have a lot to over come, but that that was why we were there so we could start working to minimize what these effects will be. WOW! it may seem strange that this conversation was exciting to us, but I can not begin to put into words how awesome that day was for our family. First off no signs of cognitive issues, amazing, but to here a doctor confirm our concerns and be willing to be that honest with us was just exactly what we had been needing. For us we have felt like having a transparent big picture was going to be key in helping Brylee get what she needs, and that was exactly what we got that day.

While we have spent much of our time the first few weeks with Brylee's team working to see where she is and what she needs, just her energy and the way she is feeling has gone up amazingly since our admittance. It is incredible what just getting enough food can do for a little body. She has gained almost a pound over the last three weeks and is working very hard in therapy. We still have a long way to go but are confident that the doctors and staff at OCH are going to help us get there, both during our stay and once we are allowed to go home. Some of you reading this may not believe the same way that Mark and I do, and whether you do or not, I can say with confidence that I believe every single step in this process has been a divine intervention. I feel like since we have arrived here we have been living out Romans 8:26 where it says, "Likewise the Spirit helps us in our weakness. For we do not know what to pray for as we ought, but the spirit himself intercedes for us with groaning’s too deep for words." There really have been moments we haven’t know what to pray, or we have know what we wanted at the end of the road but had no earthly idea how to get there. Yet I am continuing to realize that we serve an amazing God that does step in when we have no earthly idea what to do.

Even with our sadness and grief at the separation of our family we are thankful beyond words at how blessed we are, and how our sweet Brylee is being taken care of. There are few greater blessings as a parent than the comfort in knowing that your baby is loved and cared for in an even greater way than you can do.