30 July 2011

Summer Goals - Update

So, if you'll recall, back in May, we had quite the list of summer goals to accomplish during our stay in Michigan. Since we're almost done with the summer, I thought I'd post a progress report.

-Matt actually picked up a second clerkship, so he has been alternating between a criminal judge in Detroit and a civil judge right in the town where we live. He has gained a TON of experience! The van line people never called him back after numerous attempts, so Matt commutes everyday. We get gas about every 3 days.

-Matt has also been networking like a mad man. He has given away about 3/4 of his business cards so far! He networks at the court houses, at local Knights of Columbus meetings, in trying to catch up with everyone in Michigan he knows who was ever in law school, and, as we speak, he is currently at a seminar for corporate business law. He once even went door-to-door to all of the law offices in the town where we live. He met lawyers out front of their buildings on their way to court, he meet them for breakfast, lunch, coffee. Mostly on the pretext of wanting to know their opinions on the state of the job market in the area, what they like to see on transcripts and resumes, etc. He's a talker and connected with a lot of people; I am so proud of him!

-He met most, if not all, of his summer goals for that student organization for which he is in charge.

-And lastly, he has been job hunting for a post-graduation job. He has been prepping his resume, transcripts, and writing samples for judicial clerkships all over the country, due in the beginning of August and he has a ton lined up to be sent out.

In terms of our personal life, we have gone on two hikes and taken dozens of walks around town. I also go out at least 5 times a week, just me and Abigail. We have also definitely seen a lot of family and friends.

So anyway, next week is Matt's last week at work. Then the following week is Abigail's surgery (Aug 8, a week from Monday), then he'll go back to Florida that weekend. The next week we should be discharged from the hospital. Then two weeks at home to heal and pack, then once we're approved for travel, we'll leave over labor day weekend. All of this, of course, will not go according to the above time table because it NEVER does, but at least we have a starting point.

26 July 2011

Happy Baby Day

Abigail skipped cooing. She went straight to yelling vowel sounds. Once she perfect the art of attention-getting via excited exclamations, she decided toss us the occasional coo. Her hands have already found each other and she's been grabbing onto clothes, hair, and jewelry for about a week or two now. Her vision has always been really good, focusing early, tracking quickly. She scored a perfect on her newborn hearing test. Her pediatrician says she has really good muscle tone, is holding her head up well for her age, and the nurses attempting to draw her blood declared her to be surprisingly strong. Down's books: 0, Abigail: 125.

Surgery has been officially scheduled. Monday 8 August, two weeks from today. That was supposed to be the day after we left Michigan to return to Florida, but I have a feeling it is actually going to happen this time, something I didn't have with the first two surgery dates. Abigail probably won't be cleared to travel until Labor Day weekend. I have to admit, I did get pretty depressed yesterday when I found out that it would be another month before I could get my life back in order. And two more weeks of sitting around staring at the walls. I am feeling better today, so I decided to make a happy baby post. The law school plan is pretty much that Matt will fly down Aug 14th (for class Aug 15th), stay with a buddy on campus, then fly back up and drive down with us once we are cleared for travel. By the time he flies down, Abigail should be out of ICU and onto the general care floor (known as 5 East). But as we've learned 100 times over, nothing is set in stone, so we haven't bought the plane ticket yet.

In the meantime, my little pink clothed baby with her dramatic personality is hungry.

23 July 2011

Dare I hope?

Yesterday we went to the hematologist to have some more bloodwork done to check out Abigail's white blood cell count and determine if we needed to worry about leukemia or any autoimmune diseases. The good news is that the count was higher and the doctor is not suspicious of any health issues; she was probably just exposed to a virus. The bad news is that although the count is higher, it's not high enough for surgery, so we have to have blood work done again next week. Back to the good news, the hematologist said we could go ahead a schedule surgery for the week of the 1st as she does not expect the count to be anything less than perfect. We'll find out Monday on which day we have been scheduled. I have a gut feeling that it is finally going to happen this time.

Matt and I have formed two plans for travel back to Florida.
Plan A
Matt defers class for two weeks, which should give us enough time til we're cleared for travel. We USPS our stuff down to ourselves and drive down together.
Plan B
If Matt can't defer or we can't get in for surgery until the week of the 8th, Matt would go down as soon as Abigail is out of ICU, stay with a friend on campus, then return once we are cleared to travel, then we USPS our stuff down to ourselves and drive down together.

No timetables yet (we should have a date on Monday). We'll see what happens.

In other news,
-I faxed the application down to our preferred apartment complex in Florida. Once we hear back, we'll have a place to live lined up before we leave.
-Matt was selected for jury duty in Florida, but of course we are not there. We have both always wanted to be on jury duty.
-It has been several days in a row since I last felt depressed. Maybe I am finally doing better?
-Matt and I have decided that once we get a dog, we are going to buy him little doggy saddle bags and take him hiking with us. Thanks to my friend who gave us the idea ; )
-Matt, Abigail, and I all have the same blood type.

19 July 2011

Is there even a point in forming a plan?

So, in the school department, we still don't know what we are going to do. Matt is willing to defer classes for up two weeks. After that, we are thinking that he'll fly down and stay with buddy on campus until Abigail is cleared for travel, at which point, I'll drive down with her, the car, and the kitties, and we'll ship our stuff down via PODs, or some similar competitor. But we all know what happens to the best laid plans...

The days and weeks are stretching out really long. It's only Tuesday and we know we won't be having surgery this week. Next week looks bleak as the surgeon's schedule is pretty full. There is a very real possibility that surgery won't come until late in the first week of August. That is a good 2.5 weeks away. Remember, I designed all my responsibilities to end on July 14th. And we can't go anywhere so that she won't pick up any more viruses. I have nothing to do. I read or I knit and crochet and watch Netflix. While holding Abigail. Because she doesn't like to be put down.

Some days depression and hopelessness sit on my chest and it's hard to breathe. I remember when my confessor told me to stop stressing and I try to decide which is better to be: stressed or depressed. The other day when I was feeding her, I smiled at her and I saw the skin on her forehead and around her eyes visible loosen up. I felt an overwhelming sense of guilt as seeing the toll my emotional state was having on her, tensing her out too. I wonder why God gave her to me when I am clearly so inept at giving her what she needs.

I have only found two things that makes me feel better. Exercising and calorie counting. I am not trying to be braggy; trust me, I am NOT thin, or a health nut, or any of those admirable qualities. Maybe it's a control thing or maybe it's a confidence thing, but days that I exercise and eat right have a solid correlation to days when I feel like I can breathe. Over the weekend, Matt and I hiked a total of 6 miles (with Abigail strapped to my chest the entire time). Today I went for 45 min walk, plus just this week I started bringing in some strength training exercises. I come home from walks tired and covered in sweat, and it feels really good. When I calorie count and I manage to stay under my goal, I feel so much better about myself, like, at least there is one thing in my life I can change for the better. It is really hard to stay under, my Grandmother is so excited to have someone else to cook for her that she has been going to Meijer every other day and bringing home fancy meats and tons of treats. We've been having roast chicken, ribs, ice cream, turnovers, muffins, the list goes on and on. But when I do behave, I feel really proud of myself, and I feel that maybe I can survive this emotional roller coaster.

I exercised today, but I went over my calories by 300. So today is a mixed day : ( I want sooooo badly to get this surgery behind us. I don't feel like I can handle another surgery postponement. I also don't feel like I can handle waiting another 2.5 weeks. What on earth is God's plan? Why on earth is it a hole in my daughter's heart?

18 July 2011

Baby Heart Saga - Postponement Email

Hello all,

Abigail's surgery has been postponed yet again. The first postponement occurred because two other babies needed emergency surgery and we were bumped back one week. We have just found out that it is going to be postponed a second time as Abigail's blood work came back with a low white blood cell count. The doctors believe that she was exposed to a virus, which lowered her blood count as her body fought it off. Her white blood count needs to be high in order to help fend off infection following the surgery. We are going to run some more tests later this week, then her team of doctors will meet to determine a new surgery date. The doctors have recommended that we keep a low profile in order to help her recover and prevent exposure to any more viruses. We have yet to decide when we will move back to Florida or how we will handle school.

In the meantime, Abigail is slowly but surely gaining weight, reaching 7lbs 7oz when she was weighed last week, and today she is officially 2 months old.

We very much appreciate all your prayers thus far and ask you to continue to keep her on your prayer lists. We are praying that she will continue to thrive in these (weeks?) leading up to her surgery and that her lungs and liver are able to handle the effects rendered by the heart defects. As always, keep an eye on www.Twitter.com/AbigailsHealth for news. (You don't have to have an account on Twitter; you can check it and bookmark it just like any other web page).

Thank you for all your support.

God Bless,

Matt, Jacqueline, and Abigail

More Postponement

Bloodwork came back better but not good enough. Surgery postponed again, date to be determined next week once they run more tests on Friday. They are confident that it was exposure to a virus and is not leukemia. The surgeon's nurse promised that the surgeon had plenty of openings in August. I do not know what we are going to do about school. I do not know how we are going to get through this. There is so much white-out in my planner.

16 July 2011

Gonna put the world away for a minute

So, if you'll recall, on Wednesday the 13th, Abigail had a bunch of pre-surgical workup done. Well, her blood test results came back on Friday with her white blood cell count too low. They said that meant we would have had to postpone the surgery anyway. They retested her on Friday and the same-day results affirmed Wednesdays results. We will go back on Monday to retest again. It is possible that she was simply exposed to a virus (possibly even from the rotavirus vaccine she got on Monday the 11th). If the count is back up again this coming Monday, we will probably be cleared for surgery on Friday. If the count is still low, we will have to do additional testing to determine the cause. (The Pediatrician dropped the word "leukemia" then told me not to think too much about it this weekend. Oi). I don't think I can handle anymore bad news.

Anyway, ever since we found out that surgery was postponed I have been extremely depressed, (so please don't take offense if I didn't return a phone call or something), although it has made staying under my calorie limit very easy as of late. I have been avoiding all social situations, which hasn't been too hard because we're trying to avoid exposing Abigail to anymore people in the hopes that whatever is causing the problem now will pass quickly. I am so sick of everyone wanting to talk about her problems; can't anyone realize for one minute that I'm still the proud mother of a baby girl?

My constant prayer goes something like this, "please heal my daughter, let the surgery be successful, and the recovery quick." Over and over again.

Today, in an attempt to take our minds off things, we went for a 2 mile hike at the local state park then went to get ice cream. I wore Abigail in a carrier during the hike (there's no sick germs outside), and at the ice cream parlor, I kept her in her car seat with the canopy down the entire time. No one noticed, touched, oohed or ahhed over her at all. When we were hiking I could pretend life was normal. On the way to the park, we listened to the Zac Brown Band's new song (and their only good one in my opinion), "Knee Deep." The tropical, upbeat song put us in the right mindset. It's Abigail's and my song now.

"Gonna put the the world away for a minute
Pretend I don't live in it
Sunshine gonna wash my blues away"

14 July 2011

The Best Laid Plans...Again

Surgery postponed until 7/22 because two emergencies jumped ahead in line. So I guess we wait. Matt will defer class for 1 week.

12 July 2011

I'm fine. How are you?

Surgery is just two days away, but for me, it really beings tomorrow. Tomorrow is pre-surgical workup day, which means eight hours at the hospital getting xrays, EKGs, echocardiograms, bloodwork, and meeting with cardiologists and surgeons. It's actually not too much more than usually comes with one of her typical cardiology appointments and it's only two hours longer. Since we'll be gone almost all day, I am spending today doing a majority of the packing. In true Jacqueline-fashion, I am living real life ignoring the emotional side of my life and focusing on the to-do list.

People have been asking me how I'm doing lately. On the outside I politely say, "Fine. How are you?" with a smile. On the inside I kind of just stare at them. My infant baby is having open-heart surgery in two days. How do you think I am? Sometimes people ask me how Abigail is doing. I usually respond that she is doing well and tell them how much she weighs, 7lbs 9oz as of yesterday, and how much that pleases the doctors, quite a bit. On the inside I think about how poorly she is doing. She is taking longer and longer to eat. Sometimes it takes me nearly an hour to get through a 2oz bottle. She takes one sip then stops to take 6 or 7 breaths. We can't do very much tummy time or suck on a pacifier because it burns too many calories. She weighs an entire pound less than other children do at her age with her birth weight. Her heart and liver are enlarged. But in a weird, twisted way, she is fine. She is acting exactly like any baby with a heart defect should. She is deteriorating, right on schedule.

Some days I really do feel fine. Some days I feel really depressed. Some days I go from one to the other so fast it gives me a headache. But most of the time, I don't even know how I feel. I guess the best way to describe it is a mixture of despondency and relief.

I do not know how I will feel during or after her surgery, so I am making no promises as to when or how often you'll hear from me over the remainder of July. I am planning to send emails to family and friends and do vow that I'll post versions of those emails on this blog. The best way to find out how things are going is to check out the Twitter page I created for Abigail's surgery. www.Twitter.com/AbigailsHealth. I know that tweeting about such serious news will offend some sector of people in my life, but I am trying not to care. After much thinking, talking, and debating, Matt and I decided that this would be the best way to give real-time updates to everyone who would want a phone call. I like this solution because sending a text the ambiguous and non-responsive 40404 is significantly easier emotionally than having one-on-one conversations with two sets of parents, a grandparent, and five siblings and their families every time there is news.

It is my secret hope that Abigail receives so many flowers at the hospital that there is scarcely any solid surfaces left in her room. I guess it is not so secret now, but I doubt anyone will really send her anything, because who really does that anymore? But in the part of my head that is trying to understand how a long-term hospital stay works, I picture all the movies and tv shows that depict people lying on the sterile sheets with balloons, flowers, and stuffed animals piled up behind them. For some reason I imagine flowers. Lots of them. Pink and white ones.

I am sorry for all the crazy up-and-down, off-topic posts this summer, all the excessive typos that make me feel guilty for not correcting. I am sorry that I am so conflicted and that I ramble, sometimes aimlessly. If nothing else, this blog is a record of how different life can be from how it was originally planned; "Journeys of a depressed, unstable Law School Wife and Special Needs Mother." I hope that you stick with me through this tumultuous time, and I promise that after I feel like I have gotten my life back together, I will resume life as a law school wife back in Florida.

07 July 2011

Baby Post

I have been making a point lately to keep my posts "on topic" (ie, about being a law school wife), so I think now it is time for a baby post. This one is going to be about being the parent of a special needs child. Which, by the way, I never in a million years thought I would be.

If you want to understand what it is like to find out that your child has both mental and physical disabilities, I highly recommend you read this very short essay: Welcome to Holland. It so perfectly describes what my life is like that I still get choked up when I read it.

When I found out that Abigail had Downs, I "owned" it just like I owned her TOF (heart condition): by researching the snot out of it. I spent hours on the Internet; I read every book the local library had on the subject; I compiled a giant reading list on Amazon's wishlists. It got to the point that I couldn't look at Abigail without thinking "Downs baby." As I got sick of reading about all the depressing things our future may possibly hold and I became really depressed over my baby, I finally chilled out. I read a few other books; I watched movies; I went to the store and bought her cute pink outfits. Abigail finally became something other to me than a Downs baby. She became MY baby. A few weeks have gone by since I learned to calm down, and I've finally digested the news. Now I sometimes even completely forget that she has Downs.

So far it's hard to tell just by looking at her that she has any issues, so I have only had to deal with the reactions of family and friends. Some people act like she has a death sentence, others like she'll be an easy, happy child her entire life. Others yet completely ignore the issues, refusing to talk about them or even acknowledge me when I talk about them. A few people straight out ignore her, but it's hard to tell if that's because babies make them uncomfortable or if babies with issues make them uncomfortable. I finally figured out how I want people to react anyway. I want them to acknowledge that our lives will not be easy, but just be happy for me that I had a baby, like they would any other new mother. I have forgiven everyone who had a "less than ideal" reaction, which also helped me digest her disability. Some people have said a few particularly hurtful things (on both ends of the spectrum. An aunt told my dad she was "so sorry" to hear about Abigail. (my child is NOTHING to be sorry about). Another person told me they were glad to hear that Abigail had Downs because they wanted their children to know someone with a disability. I'm going to try not to think about that comment when she's in the hospital on a ventilator next week). I've forgiven them too, but the comments still hurt.

We're taking it one day at a time and I try not to think too much about how long till she'll walk and talk, etc. According to doctors, therapists, and friends with other babies, she is acting exactly like any other 7 week old baby. She's even been smiling at me and "talking" to me when I put her in her swing (mostly I think she is saying, "Make it fast. You have exactly five minutes before I start screaming.") She is definitely her own person with her own ideas about how and when I should hold and feed her. She just comes with a few additional features, such as, for example, the fact that her pinky finger on both her hands only has one crease. She has no problem bending her finger or forming a fist what-so-ever. Ha, I bet your baby can't do that. ; )

05 July 2011

Microupdates

Being a law school wife over the summer is always different than being one over the school year, even if Matt remains busy during the summer as well. I am really enjoying getting to do fun things, at least some of the time, and am not looking forward to losing him to school again.

He has been slowly accomplishing his summer goals. We always set such lofty goals for ourselves then not accomplishing them all. I once met with a business consultant who advised setting realistic goals for oneself. She argued that setting too many goals too high set oneself up for failure, but making meet-able goals allowed you to accomplish them and then feel good about yourself.

We switched cell phone carriers and joined a family share plan with my parents and sister. We now have unlimited call to any mobile number on any network, unlimited texting for the both of us (we used to have 300 texts/person), and Matt has Internet on his phone, all for $5 cheaper than we were paying before. We are pretty excited about the upgrade.

Abigail will not let me put her down and it is really wearing me out. I feel a lot of stress to silence her quickly because I am living with someone else. Someone who isn't thrilled to hear a baby's "warning wail."

Sometimes I seriously contemplate deleting my Facebook account. Some people are so narcissistic. And annoying.

I am experiencing some postpartum depression. And Abigail is going in for her open heart surgery next week. That's pretty much all I can think about right now.