Wednesday, July 27, 2011
For a while now, I've felt lost in the sea of medical professionals in charge of my care and my baby's care. Thankful to each of them to be sure, but lost all the same. With the way things were left at my last appointment, I had a vague idea that the delivery day might be Aug 22nd. But that was contingent on many factors, none of those factors being what worked out for me! lol But today when I went in for my OB apt, I met a wonderful doctor who was positive about my baby and just talked about her like a baby and not some sort of additional liability or problem. I asked him if, given the new circumstances, there would be any chance of me getting to pick my delivering OB or if I would just draw from the hat whoever was on call when I finally got the last minute details sorted. Well, this doc took what the MFM doc had to say about delivering week 37 into account and went ahead and scheduled an O.R. room for me on Thursday August 25th at noon! He said he would schedule any of the OB's I'd met to be my delivering OB; I could take my pick!! Amazing! I asked him if he would be available, not sure how he'd feel about it, but he smiled and said it would be his honor! His honor!!
God willing, we will see the MFM that morning, get the amnio results back and be cleared for delivery as scheduled at noon. I am still not sure what is going on with Evangeline's surgeons that day and I suppose that could cause things to be rescheduled, BUT STILL, somebody took what I wanted into account! I wanted to know who would deliver my baby, and this wonderful doctor accepted the job! He also said he will be the one I see on all future visits! No more doctor shuffle. I told him on the way out that I wanted to hug him but knew it would be inappropriate. He just laughed and threw out his arms for the hug. I felt like crying I was so happy.
This was such an unexpected answer to prayer for me. Sometimes its the "little" prayers getting answered that can lift your spirits like none other. I have been making an extra effort to be verbally thankful to the Lord for the things I am believing Him for. Just this morning I thanked him for more answers in regards to delivery and knowing what was going on. I thought I was thanking him for what I'd find out on the 18th of August when I go back to the MFM. I never dreamed I could find such help and reassurance today, much less actually get my OWN doctor! I feel so much better about going into surgery knowing who will be behind the curtain with the scalpel and the sutures! Thank God for all he has done to help me as I travel down this road!
I know the details can still change. There are a lot of things to get sorted out, but I cannot explain what a shot in the arm it is to be able to feel like I have some say, some choice, in all these important things happening all around me.
I have also had some other blessings this last week. A great big one involves a more relaxed schedule. I am now set up to work mostly remotely, only going into the office when I absolutely need to. I am too tired to walk much and the baby dislikes all the sitting I was doing. She prefers the reclined position where she has more room to roam. The new schedule lets met get through the day without feeling so drained. I am no longer having to drag my body through the daily routine; instead I can adapt my routine to what my body can do. This is truly a gift from God (and some VERY understanding bosses!) And I cannot say what a difference this past week has made for me physically and mentally. I feel so much more like myself!
So all in all, as I continue with my new commitment to thanking God as if I have already received my blessings, I find it much easier than I imagined. I truly am a blessed woman.
"But I trust in your unfailing love; my heart rejoices in your salvation." Psalm 13:5
Thursday, July 21, 2011
Also, we could see the location more clearly and it is apparent that the defect is lumbar-sacral not just sacral. So we're back to the possibilities of greater difficulties in walking. The final "change" this week is a change in delivery date. We were looking at 39 weeks. Now they want to do an amnio at 37 weeks to see if her lungs are functioning. If they are they will deliver as soon as the week of August 22nd.
I put all this info together on my drive home and reminded myself of some important facts that haven't changed. 1) God is still in charge and it doesn't matter to Him where her lesion is, he will still be her God and take care of her. 2) She is still my pretty baby whom I love. 3) We still have fantastic support all around us. 4) I can be thankful that at least I know ahead of time that my baby will need surgery etc. and so I'm not totally blindsided.
Wednesday, July 13, 2011
"I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay.The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland"
Now for myself, this Holland analogy hasn't taken hold in any real way. Mostly because if parenthood were a journey, I haven't even gotten off the airplane yet. The landing gear have not deployed. Sure, they told me Mid-flight that I'd be landing in Holland instead of my originally intended destination. But the reality of what it will be like living my parenting years in the land of the Dutch hasn't really "hit" me yet.
Maybe today I got my first taste of it. Just a sample. A tiny forkfull of those famous dutch pancakes if you will. I don't want to be difficult or belligerent. I don't want to wind up one of those grumpy people wandering around Holland International Airport grousing at everybody because of the flight change. You know the people I mean, the ones you can NEVER say anything right to. The ones its best to just avoid.
But today I had an issue. Today, I wanted to grouse. Basically I had an encounter with somebody who felt compelled to tell me that my baby will have "lots of difficulties" but she went on to express pleasure at the fact that my family seemed so willing to chip in and help. I wanted to say things. But I didn't. I realize that she was just trying to say what she "knew" and I was being hormonal and taking it personally.
As the mom of a little girl with SB, I represent the entire spina bifida community. I cannot afford to grouse at people just because I'm pregnant, hormonal and/or impatient with what they do not know. When people stop me one day to ask me weird questions about my child or when people make assumptions about her, I will have to try doubly hard not to call them to the carpet. I want to change the perceptions about Spina Bifida, and I certainly cannot if I become grumpy about the subject and give snarky answers instead of real ones. So, for me, the real challenge is not that I've gone to Holland. Its the way I have to represent...be an ambassador for my native country and show people that spina bifida isn't what they think. That kids who have spina bifida are not damaged goods in any way. For even though I never signed up for the job, I'm not just a mom, I'm an ambassador!
Do not repay evil with evil or insult with insult, but with blessing, because to this you were called so that you may inherit a blessing. 1 Peter 3:9
Sunday, July 10, 2011
I was blessed with so many beautiful things including: a glider, a crib, hand made ruffle socks, a complete travel system, a baby tub, an electric breast pump, a bassinet, tons of outfits and too many other precious little things to name! I think that my baby is spoiled and she isn't even born yet. She may have spent the first nine months naked, but she certainly has a wardrobe worthy of a tiny fashionista now. I can only hope all this glamour doesn't go to her head.
There were shower games, of course, planned and executed by another friend who kept everybody laughing and entertained. Plus it was just nice sitting and talking in between to people I care about and don't see nearly often enough since work and pregnancy related sleepiness keep me fairly occupied.
I suppose I wanted to post about something as "ordinary" as a baby shower because I know that for a lot of women who get the news I got all those weeks ago, its a struggle to get back to anything closely resembling ordinary. You feel out of control, like you are in a dream. Your emotions get jerked around from excited to frightened to angry to numb to deep sadness and back again in no particular order. Its easy to understand why, when you add in typical pregnancy hormones, some women have a hard time pulling themselves out of the roller coaster ride that is a spina bifida diagnosis to find themselves back to that place where they started- excited and eager to meet their baby. That place where no other emotion exists than the one of bliss when you think of that little person bumping around your belly- that combining of you and your partner's DNA. I get it. I really do. Bliss free from worry is a rare commodity to come by for any parent- especially for one who has to face the idea that all their ideas about being a parent have suddenly and irrevocably changed.
I want to post this to encourage any other women who walk this road behind me. Your family and friends can be your biggest asset. You can draw encouragement from them just as you draw strength from your faith. It may take a while....but you CAN find that excited feeling again. It might be work to get there. A daily exercise in laying down your fear and picking up your smile...but really...has worry ever helped change anything? I am learning each day that worry has been an over-rated part of my life. Like an emotional appendix, serving no real purpose. Our babies are stronger than we know. Our Creator is bigger than we guess. And every fear will eventually be conquered by reality...that basher and smasher of all things rooted in the future. What we fear will likely never be an issue. What we don't know will eventually become clear. I just want to encourage every lady out there that with support, patience and determination you WILL find that excitement again. You will do ordinary pregnant woman things. All things are possible...even this "small" thing.
As one final illustration of what I mean, I will tell you about the ninja show my husband was watching for a while. It was a televised competition where men tried to complete this course in the fastest time to win a title. All the competitors were athletes. Not a one was unfit in any way. The course was brutal. But the hardest part was saved for last when the competitors were already tired. They had to use their finger tips to move along this ledge barely wide enough to grip, then they had to fling their bodies from this tiny ledge to another ledge further up in the air. From that ledge, they had to jump yet again and land between these two walls, throw their bodies straight out and wedge themselves between the walls....since the walls had neither hand nor foot holds. They then had to spider crawl along between the walls to the finish line. Many couldn't get to the final challenge. Some that did, fell off the skinny ledge, some couldn't make the jump...but at the halfway mark of the show NONE had successfully made the body fling to stick between those walls. Finally, this one competitor was interviewed (just as all the others had been) and he was a wiry, but cocky little guy. "I will finish this course" he said with Japanese subtitles, "I have seen myself do it." and sure enough, this guy climbed like a rehus monkey, jumped like a spider, and stuck the landing perfectly. He made it to the finish. Seeing him do what before was presumed impossible, gave energy to the other contestants. After him, many more made the landing. They all knew it could be done!
For my situation, that wiry little competitor who helped pave the way for me has been my mom. From the moment we found out, even while my brain was mush and reeling, my mom's excitement to be a grandmother was never diminished. She wasn't worried about the challenges the baby would have. She knew we would meet them. She visualized it in her mind. She showed me it was possible. Even my husband who was just as close to the situation as I and who was just as knocked backwards jumped up before me, ready to put fear aside and take the challenge. I followed after. But I COULD follow, because I had seen it done.
So, I guess what I'm saying with that is even if nobody else is excited about your situation...if you become excited, you will show everybody else its possible. Somebody has to be the first one to put down worry and pick up a victorious mental picture of your baby thriving and your family rallying arround to support. Once somebody does. Everybody else then knows how to follow.
He also said, “This is what the kingdom of God is like. A man scatters seed on the ground. Night and day, whether he sleeps or gets up, the seed sprouts and grows, though he does not know how. Mark 4:26-27
Wednesday, July 6, 2011
For starters, there is a LOT more security in place on the maternity floors than I would have thought. There are cameras and you have to be buzzed in almost anywhere you go. Only certain hospital employees have access to these areas and there is a procedure for almost everything. So, even though it didn't occur to me before, I am very glad to know my baby will be on lock-down 007 level security! lol
Bj, of course, is flying high right now. Turns out that when I'm admitted to the hospital, I will get a bracelet. When Evangeline comes, she will get a bracelet, and yes, HE gets a bracelet. This "bracelet of power" will allow him access to all things Evangeline. He will be the only other human authorized to pick her up etc. Other visitors can see her, but he has privs. available only to bracelet wearers!
We got to see the NICU before the group tour of delivery rooms, nursery and recovery rooms. The charge nurse was very gracious and answered all our questions. We got to see the area where you must scrub up for three minutes before entering the NICU and touching the baby. This is to prevent MRSA infection from finding its way to the babies. Then we saw section A, which is where babies start out. Since Evangeline won't be premature, she will get a little warmer vs the big huge plexiglass tank thingie that the teeny tiny babies get. She will stay there till after she is recovered from surgery and doing well. Then she will move to section B, which is the next step before coming home. It's less critical care. Finally, before we take her home, we come to the NICU to spend the night in one of their parenting rooms, just us and her to make sure we know what the H*** we are doing before we bring her home. If all systems are go, then we bring in her car seat, they put her in and place her in a little red wagon and we pull her to the car and strap the seat in place...AND BRING OUR BABY HOME!!! Woooo!!! Not sure how long the process will be from start to finish, but 14 days is a reasonable guess. Much will depend on if she needs a shunt after her closure surgery and how she is at feeding etc.
Meanwhile, after I get discharged, I still won't be able to drive so Mom will be supervising me at her house and driving me to make milk deliveries for the baby. They are very receptive to having human milk for the baby vs. formula and have a system all in place for that too...so cool!
So, after the NICU tour, we went back down stairs and had some dinner in the cafe, then joined the big tour group for the next phase of our tour. For this part of the experience, I was chauffeured. I was waddling along sooooo slowly, and my tummy was hurting so bad (The round ligament pains have been getting worse) that Bj got me a wheel chair to make the travel easier. I was embarrassed by this, but he used his grumpy voice so I went along. And would you know it....it seemed like he was sprinting along the halls! It had taken us so long to walk to the cafe and we got back to the check-in desk so quickly. "Why are you rushing?" I asked him. "I'm not." he said. "Um... yes you are!" I accused. "No. I'm not." he said again. I was about to say something else when he told me, "Just look around you. See all these other people? Am I passing them? No. I'm just walking!" Then it hit me like a ton of bricks. OMG! A three toed sloth could pass me at my new "normal" walking speed! How did this happen??? It was a very sad moment, and one I shall not dwell on. At least I'm still locomoting, regardless of how slow. So....lets get back to the tour highlights!!
The first place we went was to the second floor. We saw the room where I will come (and the ladies doing a regular delivery will stay in this room until the baby comes) until they are ready to bring me to the c-section O.R. The maternity/c-section O.R. is right up next to the NICU so it's the perfect set up for me and Evangeline. After the c-section, I will go to a recovery room across the hall for a few hours then I'll be moved up to the third floor post-partum suite. And let me just say, those suites are SWEET!!! They used to be semi-private rooms that have been renovated into one HUGE room. They have wi-fi, DVD player and TV. Add the morphine drip that I'll have for the first two days and I guess it's party in my room. ;)
All in all, I would say the experience was very positive for me. It was great getting first hand knowledge of the processes we will be going through and learning hospital policy on this and that. The staff seemed friendly and overall, I would say we made an excellent choice for our baby on where she will be going. Baptist NICU is a level 3 NICU, which is the neonatal equivalent to a five star hotel. She will get the best care possible. And it isn't long now! On our way out the maternity nurse on the postpartum floor waved and said, "See you again soon!" I just rubbed my belly and smiled cause next time I see her, I will have already seen my treasure! How exciting a thought!!!!