In addition to checking his fluid levels this morning, they also did a standard biophysical profile (BPP). This is basically where they check him to ensure he's practicing his breathing, moving around enough and that his heart rate is okay. Thankfully, everything came back okay. The only new thing they saw today was that he has an enlarged bladder. When the doctor came in to tell me about it, she didn't really go into a lot of detail. I think since we're just a week away from delivery, the doctors kind of feel like there isn't a lot of reason to try to figure stuff out with Will. There have been so many abnormal things this whole pregnancy and we still don't really know why, so I kind of feel like they just add other issues onto the list and move on.
Speaking of the doctors kind of adding stuff on a list and not really going into detail about it, I also learned today that Will has abnormal hands and feet. We got the first suspicion that something may be going on with his hands and feet last Friday night. That's right,. Friday night. I opened a letter from the geneticist we met with a few weeks ago and it was basically her report / follow up from our meeting. She summarized all of Will's issues and included a sentence on his "abnormal hands and feet". I immediately stopped reading and took the letter to Carlton. He agreed that it was the first time we had ever heard anything abnormal mentioned about his hands or feet. Of course, I stewed all weekend over this new bit of info and had planned to call on Monday to ask them about it, but honestly I tried to push it out of my head. At this point, what is another issue? I guess I'm kind of like the doctors. I get annoyed at them for brushing over issues, but I have been doing that in a way, too. I think it's just easier to come to terms with the fact that we're just really not going to know what's going on with Will until he's born.
Everyone has been asking me how I feel since we're a week away from his birthday, and I just don't really have the right words to describe my feelings. In some fleeting moments, the fear of the unknown is literally paralyzing. It takes my breath away. I find myself breathing deeply and trying to calm my nerves. In other moments, I find myself smiling happily at the thought of just holding him in my arms, at seeing those locks of hair we've seen on ultrasound so many times and on finally catching a glimpse of his wiggling toes. I can truly say that I'm excited to meet Will face-to-face. I want to meet my son. I want to hold him and start taking care of him. I guess I want to finally feel like we have some control or means to help him. BUT, I also fear that somehow next Wednesday could be the beginning of the end. The doctors all seem so pessimistic that it is easy to allow myself to let my mind take control over my heart and my faith.
While sitting in the doctor's office this morning, I got a text from a dear friend. It said simply, "Proverbs 3: 5-6". I immediately looked it up and found these words.
Trust in the Lord with all your heart and lean not on your own understanding;
in all your ways submit to Him, and He will make your paths straight.
As I sat on the exam table waiting for the doctor, I found myself reciting those words and praying for Will and for our family. I truly have faith that the Lord's will will be done with our Will (whew, say that 3 times fast!), but that doesn't make it easy. So, back to next Wednesday. I'm scared, but yet I'm hopeful. I am excited to meet our son and I'm praying for peace and strength for whatever that day may hold. I also ask that you remember us in prayer, especially next Wednesday, May 2. The c-section is scheduled for 1:00 PM EST, and I'm hoping to send out a quick Facebook message when we're actually headed back for delivery.
PS - Thanks to everyone for your words of support, comments, emails, cards, etc. The outpouring of love and support for our family and for Will has truly touched my heart. At a time when I could be feeling very alone, I feel completely surrounded by love and support. I don't know that I'll ever be able to pay all of that love and support forward, but I'm certainly going to try!
Mary,
ReplyDeleteProbably you have started thinking about this before, but I would urge you to start thinking about this: What's the plan to get a diagnosis for Will when he is born? You will need to guard and protect him, if your hospital is anything like ours was, they will be wanting to take him for all kinds of tests, many of them unnecessary. Have you thought through the different scenarios, and how you can look out for his best interest. Is there a skeletal dysplasia expert somewhere telling you what x-rays they will need to get started. Having that kind of information, could really help you advocate for him.
Thanks for your comment. There's a HUGE plan in place for when he's born, but the first goal is to evaluate his breathing. If he's breathing ok on his own, then their priority is to evaluate him and try to get a diagnosis using xrays, visual appearance, etc. We also have a plan for sending out his cord blood to several centers for evaluation and hopeful diagnosis. If he's not breathing okay on his own, then the plan is to get him to me ASAP. I want to spend as much time with him as possible and they vow not to let their testing interfere with our time as a family. My husband has also been granted permission to follow Will EVERYWHERE he goes after he's born, so he's going to be watching out for him, particularly since we're worried about him potentially having OI. We have also been working with Cedars Sinai to ensure we look at all the right things on xray. I think we have a pretty good game plan... We've at least exhausted talking to all the docs about it! If you have any other guidance, let me know!
DeleteWell done Mary, it really sounds like you have a good plan!!! We were the same way, plan a) was around breathing, then came plan b). So you do know what x-rays Cedars Sinai will require, do you know how much blood needs to be drawn, so they don't have to repeat it, right? Have it written down and tell you husband that if anyone deviates he is to wrestle them, you would be surprised how many radiographers will argue what x-ray should be done... Also, if they give you the results on a CD, do not leave without the CD, don't believe when they tell you that they will post it to you. Do not allow them to do any other diagnostic tests other than what Cedars Sinai tell you, seriously, doctors love a medical mystery and they go crazy, they will think of so may irrelevant things, he will be a tiny-tiny newborn (sorry I am being an over-protective mammy here, but one has to be). Also, please try and get the good people at Cedars Sinai to look at his x-rays as soon as possible, do not necessarily believe anything anyone tells you in the hospital about the diagnosis. I know you know this by now, especially because you have also read Dr Jeanty's stuff, but as good as the doctors are at your hospital, chances are he has something rare that they are not familiar with at all. Of course be really nice about it all to the local doctors :-))) And Mary, when you first hold him in your arms, do not look out for the signs of the different conditions you have been researching, give yourself a minute to just look in his eyes. Big love. R
ReplyDeletePS. Sorry for all the dos and do nots, maybe your hospital is like a dream and you won't need to worry about any of this.
You will be in thoughts and prayers! I hope that everything will go well.
ReplyDeleteI have to tell you that I know the feelings you and Carlton are experiencing. At 36 weeks was when we found out our Lyla would be born with Achondroplasia. When it was time to deliver her I was both scared and excited just like you. I even told Eddie that if she was "deformed" that I wanted him to tell me and not the doctors because like you I had a c-section and I didn't see her right away (even though I saw so many babies with Achondroplasia online, I still thought she would be deformed- I was so STUPID for thinking that) but anyway I just want you to know that there is nothing to be afraid of because when you look at that beautiful baby.....you are going to look at Carlton and say......I can't believe I was ever afraid!
ReplyDeleteI took one look at Lyla and said just that and I still say to this day.....I can't believe I shed one tear for this beautiful child. I was afraid though and it is something that takes over us sometimes. But once you see Will you will be okay!
I will be thinking of you and praying for you all just like I have been ever since you contacted the yahoo parent group. Continue to believe because miracles do happen!!!! xoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxoxo
Keep Believing God, & Him alone, through all this, Mary! You are a great witness to us all!
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