Saturday, April 9, 2011

Another sonogram, the joys of pregnancy, and life goes on

We had our next MFM specialist appointment yesterday at 8am. We took Jackson with us, and I'm very proud to say he did awesome. He watched the tv screen and played with his Spiderman magnet book we brought for home. 

Addie's vent widths had increased, and there is now fluid backed up into her 3rd ventricle. But after all the blogs and stories I've read, I was mostly prepared for this. Would I have liked for her vents to have stayed the same size? Sure. But from everything I've read more or less fluid doesn't directly impact her prognosis. Her left vents went from 18 mm to 24 mm and her right went from 20 to 34mm.

Dr. DeStefano said she was 'shocked' that Addie didn't have an infection. To which I replied that I was so glad she had been wrong about that. She agreed with me! I got permission to go to Mom's for Easter but just barely. I'll be hitting 33 weeks that weekend and Dr. D wouldn't give the go ahead until she made sure Starflight went that far. Yikes! Not for me, but to get Addie to a hospital with a NICU as soon as possible if for some reason I went into pre-term labor. Thankfully I don't have a history of pre-term or the answer would have been NO! I assured her I would take it easy, be mindful of what's going on with my body and would not leave town again after that weekend.

She's leaning toward letting me go all the way til 38 or 39 weeks as long as Addie doesn't start showing signs of distress. We went ahead and decided to deliver at downtown St. David's so that there's no chance Addie and I will be at separate hospitals, me recovering from my c-section and unable to see her would stink. They have a high enough rated NICU at NAMC but they don't have the ability to do the shunt surgery there. And since we have no way of knowing if/how soon Addie will need to be shunted until she's born, there's no point in starting out at one hospital to just transfer her to another one.

I talked to Dr. D about the cord blood transfusion and she's very intrigued and wants me to keep her updated on the whole process. I'm so glad I like her! And that she's not all DOOM and gloom. I told her as much, that I appreciated that she didn't spend all her time telling me how bad it could be. The type of person I am, I googled it. I wanted to know worse case scenario. I *know* what can happen. Doesn't mean I want to hear it over and over again at every visit with the specialist.

We have our appointment with the head of pediatric neurosurgery at Dell Children's on the 25th. He'll be doing Addie's surgery to place the shunt. Feels good to have a plan in place!

 On a lighter note, Melissa and I took the boys out for a Toys R Us shopping spree (Grayson had a gift card leftover from Christmas) last night, and then out for Mexican food. Then a late trip to Wal-Mart. It was nice to get out of the house and do something a little more normal. I'm still not buying any more things for Addie, but not out of fear but just because I really don't know what to buy her. The clothes we have are 0-3 mths. One hand, she is measuring large and her head will most likely be larger than a normal newborns. So we shouldn't need smaller sizes than we've already bought. If anything because of the increased size of her head, she may need different types of clothes, things that have snaps to get on without having to go over her head. Then again, her head may not be THAT much larger than a normal newborns and onesies are made to stretch at the shoulders anyway. Then there's the possibility that she could come early and need smaller things. Which all equals, not buying ANY more clothes for her at this point. I did tell Melissa we need to start stocking up on hats though! 

After our walking around Toys R U and sitting in stiff upright chairs at the restaurant for 2 hours, walking around Wal-Mart HURT! I think I've come to the point of pregnancy that flip flops just aren't enough support. Stinks! I've never been this far along in the summer months to encounter this problem. But then again it's such a normal pregnancy problem to have, it was kind of nice. We are planning on this being our last pregnancy, so I'm trying to enjoy all of it I can for the next 8 weeks. Even the pains!

 I finally got the pictures uploaded from our trip to Florida. We got home on Saturday the 19th after driving nearly 20 hours, crashed on Sunday and then had the routine sonogram on Monday where they found Addie's hydro. So needless to say, uploading vakay photos fell to the wayside. We had a great time visiting Mimi and now in retrospect, I'm especially glad that we had one last vacation just the four of us before we knew about Addie's condition. While I don't know what the future holds, I know the possibilities of life becoming much more complicated are pretty real. A nice, relaxed paced vacation for the four of us before we began this roller coaster was more needed than we even knew.

Grayson is doing really well in school, though continues to struggle with behavior. Mainly talking too much and wanting to do what he wants to do instead of what the teacher wants him to do. No clue where he gets that from. :/ 
Jackson seems to be enjoying his speech class once a week and is improving dramatically with his talking, putting as many as six words together at a time. 
I spent a bit of time looking online today for swim lessons for the boys this summer. 
Adam and I spent a few hours talking about things that need to be done before Addison gets here, planning our meals for the next two weeks, and setting up a cleaning schedule for each day of the week so we can try to stay on top of things without exhausting all our time and energy on his days off. I feel like this is important more now than ever, to try to get a routine set up before Addie gets here. Really it's something we should have been considering doing anyway with the impending arrival of a third child, but with the wide spectrum of possible issues Addie may be facing, the number of doctor's appointments etc, it's CRUCIAL we get a routine down. And as Adam and I discussed today, I'd rather spend the money it would take to hire a housekeeper on what's going to be a much needed date night once a month!

Funny thing about life changing events such that we are going through and will continue to go through. LIFE goes on. That's both the beauty and the tricky part of all this. Grayson still has to get up and go to school, bills still have to be paid, the house still has to be cleaned, groceries still have to be bought. So all the more reason to have a plan in place! I'm about to write up a poster of our daily cleaning routine including which chores are being delegated to Grayson and Jackson. Should be fun!

Monday, April 4, 2011

A new reason for a new blog....

When I started a blog last year I had hopes of blogging about couponing, and parenting, dieting and Disney-ing. And I didn't do a very good job of it. As evidenced by the fact that I haven't posted since last Fall. 

My how things have changed.

October 6, 2010 I finally talked myself into taking a pregnancy test. Why, you ask? I was about 4 days late and could no longer blow it off as stress induced ... I was fretting over Grayson having a failing grade in science in the second grade, something that was taken care of when his teacher entered the rest of the grades for the six weeks. Seems kinda trivial now.

I honestly didn't think I was pregnant. So sure was I, that I didn't bother to wait for Adam to be home for me to take the test. I drove to Walgreens around noon, took Jack inside with me, bought a pack of EPTs and a soda for Jackson and we drove right back home. 

I took the test immediately and sat in disbelief as the non-control pink line turned bright pink before the control line could even turn pink. There was no reason to wait two minutes for the results. It was a done deal. Big fat positive. And I was in shock. To say this pregnancy was not planned, well that would be an understatement.

I texted Adam at work to call me. The first words out of my mouth when I answered the phone were I'm so soooo sorry. And I began to cry. I would later find out that Adam thought I had bounced a check or something financially related.  Kinda funny in retrospect.

Then I told him.... I took a pregnancy test and it's positive. 

His words.... Congratulations baby.

My words.... What do you mean congratulations to me? You're in this, too!

Shock does not begin to describe those first few days. We (ok *I*) had agonized over having a third child for well over a year. I just couldn't make my mind up. And I had finally come to the conclusion that we would stay a family of four. It just made more sense. I was terribly afraid of the morning sickness, depression and gestational diabetes. I was convinced we would have a third boy. The amount they would eat as teenagers scared me worse than the morning sickness. It was easier to plan a Disney trip for a family of four. We only had a four bedroom house and needed an office space. Etc, etc, etc.

And yet here we were. Pregnant with baby number 3. 

The first trimester was a struggle, as I knew it would be. But somehow the time passed. I had two Disney trips planned which helped my depression issues. One with my sister, mother and the boys at Christmas time and one with just Adam and I in January.

Both trips were a success. I had a 13 wk ultrasound done as part of a first screen test and got the results back days before we left for our Christmas trip that the odds of the baby having a chromosomal issue were 1:4700. Very good news! I had declined tests like this in my previous pregnancies, knowing that I would not do anything with the information had it come back a higher risk for issues. But having found out that this test would give me an ultrasound 7 weeks earlier than normal, I jumped at the chance to see my baby and know that everything was ok. I had been more worried with this pregnancy than either of my previous two.

I came home from our January couple trip to a sonogram scheduled the very next day. The 20 week fetal anatomy scan. I distinctly remember Adam asking the sonogram tech if she saw any abnormalities and she said no, everything looks great! I think he and I both were worried about the diabetic complications. I'm not diabetic but have impaired fasting glucose numbers even when I'm not pregnant. Something we weren't aware of until I was 26 wks along with Jackson. 

We were also told that day that we were having a girl. Addison Lea. I was scared to believe it. After two boys and wanting a girl for as long as I could remember, I just couldn't believe I was finally getting a girl. Don't get me wrong, I LOVE my boys but felt like everything was lining up neatly with the addition of a girl to our family.

We went back at 24 wks for another sonogram, a routine practice with gestational diabetes to measure growth. Everything looked great, though the baby's belly was measuring big. See ya back in 4 wks I was told. I scheduled the follow up sonogram for the day we returned from visiting Adam's mom in Florida. 

I had to go to this u/s by myself. Their office doesn't allow children under 6 back in the exam rooms. Adam was off that day, his last day of vacation, and chose to wait with Jackson in the car instead of the waiting room.

I joked with the tech about watching out for penises to pop out, still disbelieving that it was 100% a girl. As I'm laying there watching the images on the screen, I saw something that I had never noticed before on an ultrasound. I had two u/s with Grayson and probably 10+ with Jackson, and was already on my 5th with baby #3. Not an expert but knew enough that what I was seeing wasn't something that I had ever noticed before. The tech blew it off as 'a ventricle' but the doctor could tell me more. I never noticed her attitude change or shift, so hats off to her.

The doctor walked in, as he always does to look over things on his own, check the images and send me on my way. Or so I thought. I'd been going to this doctor on and off with each of my pregnancies, so for 9 years. He's a very soft spoken man, ordinarily but I've never heard him speak as softly as he did that day. 

As he was checking things, and I'm laying there, belly gooped up, blissfully unaware, he says "Aimee, there's a problem."

Never have four words had such an effect on me. Sorry honey.... not even Will you marry me? had such an effect. It was like being dunked in hot water all at once. I immediately said a silent prayer to the effect of "Ok God, this is in your hands not mine and it always has been." And I asked the doctor "Is it terminal?"

He replies to hang on a minute and give him a second to check some things out. UM HELLO? You don't drop that on someone and then ask for more time to check things out. I asked permission to text Adam and have him come up, even with a 3 yr old. and they said sure.

I was told then that the baby has hydrocephalus. A word I was familiar with but only in passing. Her ventricles are enlarged to 2 cms, with the high normal range being 1 cm. The doctor said he didn't see any other signs of issues, no spina bifida which can cause hydro, no heart issues, there's healthy brain tissue around where the fluid pockets are. 

Adam finally made his way upstairs and the doctor came back in and explained it all to Adam. 70% of all cases require a shunt. There is significant likelihood of developmental delays. Prognosis is unknown. They wanted me to have some blood work done to rule out infections, and see a genetic counselor than see a pediatric neurosurgeon to discuss the possible shunt options for surgery after she's born.

A LOT to take in on one day. We called family, I cried, we prayed, I googled. The next day my cell phone rings and I recognize the number as my ob group. Thinking it's a confirmation call for an appt I answer on speaker phone as I'm talking to my mom. Imagine my surprise when it's my OB. She wanted me to see a maternal fetal medicine specialist to get a second opinion. She talks to me for 30 mins or more and answers all the questions I didn't know I had the day previous.

Fast forward a week and Adam and I had our first appointment with the MFM doctor. Everything looked great on the u/s. Her vents were measuring a bit smaller than the previous sono showed, most likely due to the difference in equipment etc.

Her heart still showed to be normal, everything in her brain that was supposed to be there was, so it showed normal development. There was just enlarged ventricles in the middle of it all. The one thing though that sent me spiraling was the doctor's observation that the ventricles looked inflamed. Something that generally indicates infection. Infection would mean there was a problem above and beyond the hydro. Infection is unpredictable and scary. Because there were a few things we might have been able to do for infection, in utero, I consented to the amnio. 

30 mins and two sticks later they finally got enough amniotic fluid. Addie kept sticking her leg up against the needle, blocking the doc's attempt at pulling any fluid out. I went home and googled again. Then vowed not to google anymore. The infection possibilities were a totally new set of potential issues. And it made sense. I had been sick with a cough since January 4th! Finally started to get better in the first of March to come down with what I thought was a cold that went into bronchitis again. So of course she had an infection. It explained why the vents hadn't been enlarged at her 20 and 24 wk scans. I prayed like I had never prayed before. Part of the time I prayed for no infection, part of the time I prayed for God's will, knowing his knowledge of the situation was infinitely greater than my understanding.

The first nurse call came the very next afternoon. The FISH test ( a quick version of the chromosome test) came back normal. I received this call with joy but deep down that hadn't been what I was worried about. The results for the infectious panel would take 2-3 days. So I was hoping by Friday. Friday came and went, dragging by and finally at 3pm I called the office and was told they had no more results in. Early next week.

The weekend was full of ups and downs. I finally came to peace with it. If infection was the cause, then God was gonna use that as a way to help treat her condition. There was nothing I could do or could have done differently. It had never been in my hands, and still wasn't.

Monday (this) morning I was woken by my cell phone ringing. It was the nurse from the MFM. The infectious panel came back normal. I can not express how relieved I felt. I know that Addie has a long way to go, and that we are far from having the last of bad news handed down. That her prognosis is still going to be unknown for quite a long time, but for whatever reason, hearing that there was no infection, I wasn't afraid to hope again.

I never in a million years though that fetal hydrocephalus would be a term I would type with such frequency, nor did I think it would become the focus of our family blog. But that's what life does. It changes. 

I will do my best to post more frequently, if not for those that are reading but for myself, to chronicle what I know is going to be the amazing journey my family is embarking on. God has a plan for Addie and for all of us. This I do know.