Holding steady

Not a lot going on right now. Everything seems to be holding steady at the moment. Our next appointment is not until Thursday when we have an entire morning of appointments. We meet with neonatology, have yet another ultrasound and then have our MFM appointment. I think the meeting with neonatology is going to be the most helpful for me. I honestly just need reassurance from them that Owen will not be going anywhere, we will get him immediately and we will be able to spend as much time as possible with him. I would never forgive myself if I didn’t get the opportunity to hold him, tell him I love him and at least have one opportunity to cuddle with him.

Our MFM team feels it necessary to meet with peds neurosurgery prior to delivery, however they apparently don’t feel it is very important as they haven’t called to schedule an appointment yet. I’m not sure that they will provide much useful information. Being a neurologist I work very closely with the neurosurgeons and I know they are aggressive (much more so than neurologists). With everything I have read and how Owen’s scans look I don’t feel that this is the best time to be aggressive. That may sound odd to some people but I don’t want him to undergo several operations, shunt placement etc. just to live a life that no one would want (if he were to live through the procedures). There is no way with how destructive this tumor has been to date that he would lead a meaningful life.  I just cannot fathom putting my child through that. Others may not agree with this statement but I have seen these kids in all stages of their lives and it is not the life I can imagine for my child. My thought is that the palliative team might be an appropriate meeting. My main goal for Owen is that no matter how long he lives that he is comfortable and in no pain. I know hydrocephalus can be painful and at this time he has significant hydrocephalus.

On a brighter note, one of my friends who used to work on my floor in the hospital and now does a lot of photography offered to take some family and maternity photos this past Saturday. Nicole Bouch-Wheaton photography if you are interested. You can visit her website at www.nicolebouchwheaton.com or her page on facebook. She works in the OH and PA areas and is amazingly talented. The girls acted ridiculous like always, but Nikki managed to get some amazing pictures that I will always have to remember these babies and this pregnancy by. This was definitely the highlight of my week. I had such a good time and got to meet her beautiful family who I hadn’t had the opportunity to meet previously. It was a good day and I am forever grateful to her.

 

I continue to contract when I am up, and if it starts it is really difficult to stop them. I get so tired of laying around, feel so useless and get uncomfortable always being in the same position that it becomes difficult for me to just stay on the couch. My goal is really not to be admitted to the antepartum unit until absolutely necessarily so I do my best to stay put. I do not want to have 27,29 or even 30 weekers. If I can make it to 31-32 weeks I feel more comfortable about the NICU stay for Olivia. I want her to do as well as possible, just like her big sister Emma did.

I will continue to update as things happen. Right now we are waiting for the appointments on Thursday and to see if there are any concerning changes. I want to thank everyone for their thoughts and prayers, we greatly appreciate it.