Ch-Ch-Changes

This week we have had a little bit of a break. Aly has not had any Doctor or therapy appointments for the entire week. Of course she will make up for it next week by having three. Seems to be the way things work. All or nothing.

Since Aly was 3 months old and I went back to work, she has been going to daycare. Our daycare provider is amazing and we love her. I believe her quick action the day Aly had the first seizure is the reason she is still with us. She visited Aly in the hospital and made sure we had everything we needed. We also love how close she lives to us.

After Aly got out of the hospital we decided to have her stay with her Grandma for a few weeks so she would get some one on one attention while she was still getting re-acclimated to being out of the hospital. The plan was to send her back to daycare the last week of August when her Grandma goes back to school (she's a teacher).

Unfortunately for all involved, we're not going to be able to take her back to daycare. We agonized over the decision, whether to find another daycare or to figure out a way for her to stay home with us. We had some extra stuff to consider, if she would do well in a regular daycare, would one take her, how much more would it cost...etc. Well, we added it all up and something had to give. So Daddy decided his job was the easiest to sacrifice and he will be quitting his full time job to stay home during the day with Aly. He will still work part time on nights and weekends. We did not make this decision lightly. We felt it was in Aly's best interest and that's kind of what it all comes down to. We live in a world where certain college degrees are better to have and while Ben already has a Bachelor's, he is not able to do much with it. He was planning on going back to school next year anyway. So this just all kind of happened in a matter of weeks. It will be an adjustment on all ends.

We are lucky that I have such a good job with good benefits and that we don't have a huge mortgage or loans to pay off. Yes, money is going to be extra super tight. Even though we are saving on daycare, we are still losing an income and we are going to be facing some large medical bills. We also have very supportive family and friends that have been able to step in and help in the mean time. Each Grandma has been on Aly babysitting duty this month and they have been so much help.

We have a busy week coming up. Aly has her much anticipated Neurology follow-up with Dr. Betsy. I have a ton of questions that I need to gather up. She will start having her normal Early Intervention visits a couple times a month but she will be able to space out her physical and occupational therapy visits. She has made a lot of progress since she has been home. I would say she is almost back to where she started. Now she has to work on doing the age-appropriate things a normal 10 month old would do. I have to believe having Daddy home to work with her and take her to her rehab will help her even more.

GO ALY!

10 Months and Other Stuff

The Happy 10 Month-er

Aly turned 10 months on Wednesday. I write her a letter for every month about what is going on. Our lives have changed so much in the last month, I can't believe where we started, where we were then, and where we are now. Next month things will have changed even more. Some days I just hold Aly and laugh and kiss her and marvel that I have a ten month old baby. Some days (like today) I just hold her and cry a little. Then she laughs at me and I forget what I was crying about. Today she has decided measuring cups and spoons are her new favorite toys. She will play with the everyday things like cups and spoons much longer than any fancy baby toy.

Here is the ten month letter:

Dear Aly,

You are ten months old today! I can't believe how fast the time is passing. On your last month birthday you were still in the hospital. Now you are home and doing so well. You are doing PT or OT at least once a week and you have Early Intervention planned for at least once a month as well. You are making progress. You can scoot again like crazy and you can sit up by yourself for longer. They are making sure you don't neglect your left hand. You have some great doctors and therapists working to get you all better. You are finally starting to wear 9 month clothes. You are in size 3 diapers for the most part. You weighed about 15 lbs, 12 oz at your last dr. appointment, so you are gaining some weight back. You are eating lots of solids now, you still like everything. You have been baby sat by Grandma Roxann for a few weeks, and now Grandma Robyn is taking a turn. You are always in a good mood in the mornings. You wake up once a night to eat. Sometimes you won't take your two naps and then we have to deal with a grumpy gina before bed. You had your eyes and ears tested today and both were fine. You had a follow-up MRI a week ago and that went well. People are still sending you presents, thinking about you and cheering for you. You have brought nothing but joy and love to everyone. Mama and Dada love you so much little boosh. We are so happy to be your parents.

Love always,
Mama

it's just hard

 It is very hard for me to accept the fact that Aly has had this happen to her and that we won't know what the long term effects will be until she grows up. It is very hard having people tell you what is wrong, but not why. It is hard knowing that your child may never have a normal life. I have friends who have children with special needs and I always felt sorry for them. Now, I don't feel sorry for you, I am in awe of you, that you keep on keeping on and hold your heads high and fight like hell for your kids and don't throw in the towel.

I want Aly to have as normal of a life as possible. When you have a kid, you make plans for them and dreams for them and right now I don't know how high and how far I should be setting the bar for her. I don't know what normal is going to be for Aly, and that is really hard. The last few weeks since we've been out of the hospital have been very good, but going back to the hospital snapped me back to reality. It was naive to think that she'd be able to survive this much damage to her brain without some kind of problem to show for it. It's hard to reconcile how much she has already been through, with how much she has overcome and finally how much she has left to work against.

Yes, Aly is a fighter and she's already fought some extremely tough battles. But there comes a time when you just want to stop fighting. You can only fight so much before you have to tap out. Hopefully Aly will be stronger than I and keep going even when I just want to lay down and stop trying. Aly is a tough little cookie, but its sad that she has to go through this now. Most people don't have these kind of obstacles and they never have their strength tested this much. She's only 9 months old and she's been through more than I have in my whole 28 years. Hopefully we can all get through this, we have to. I know we will, but today I'm just not feeling too optimistic. I wanted to make a more positive entry tomorrow about how it's been a month since this all started, but I'm not feeling that at the moment either.

It's hard lying to people and telling them your baby's fine, because she looks fine, but you've just heard about how her brain is still a mess and still having to field people's questions about what happened and not having an answer. It's hard both worrying about her progress and at the same time getting excited about how much she has regained. It's hard comparing your child to other children. That's something that is hard no matter what your child is going through. That is something I keep telling myself to stop doing, because it only leads to madness.

Hopefully once I see the doctor and maybe get some answers (if any) I will feel better. But right now I am away from Aly and I can let myself ride the "feeling sorry for yourself" bus. I can be strong for her later when she needs me. Sometimes it's just hard to be strong.

GO ALY!

Ask, and you shall receive

So I debated posting the last entry. I was in bad mood when I wrote it. I was feeling kind of sorry for myself. I figure this is my blog and its for me more than anyone else, so I can't censor myself. I have to be real. I was amazed at the response it got, but then again attention seeking posts always do that. :)

When Aly and I got home from Occupational Therapy with Danni yesterday (love her, gotta do a post about OT and PT and Aly's great therapists) there was a package waiting for us. I thought it was something I ordered from Amazon. But it was addressed to "The Ackerman Family" so we opened it up, and there was a bounty of riches. A book, a snuggle bug, and a gift card to Beans and Brews. It was like the universe arriving to give me a kick in the pants. Yes, people still care, and stop your whining! I didn't find a name or return address anywhere on it. I still can't get over the kindness of strangers. If you are reading this post, anonymous gift giver, thank you from the bottom of my heart. (and Aly and Ben's) You obviously know us pretty well, since B&B is our favorite coffee place, and we love anything bug-related.

Once again, people continue to surprise and awe me. Aly's experience in the hospital continues to teach me things and will continue to humble me and really make me think twice about life. I have tried to be less judgmental, more giving, more loving, less negative, more forgiving and less angry. But sometimes, I find myself slipping into old habits. Thanks to everyone who reached out to me and reminded me that everyone is still rooting for us. It means so much just knowing you're there. Thank you for sending the love, as you can see, we still feel it, and sometimes we just need a little extra shot of it to get through the day.

GO ALY!

We're Still Fighting

Thing are starting to get better. Aly is, anyway. She had PT Tuesday and her therapist was impressed. She's scooting again, she can hold herself up on hands and knees and she doesn't wobble her head so much. She has physical and/or occupational therapy at least once a week this entire month. Busy busy.

I already feel like people have stopped caring about Aly and stopped reading the blog. Because Aly's not in the hospital, everything's fine right? She's not fine. I'm not fine. I don't think people can really understand how traumatic what we went through was. I almost lost my child. I could still lose my child. I don't even want to type that, but it's true. What if her brain swells again? We might not be so lucky...

If I knew what was wrong with her things might be different. I asked the doctor for warning signs and he didn't really have any. I guess if she starts seizing again. I don't like the uncertainty, the fear that something is still wrong and we won't know it. Even though we have a follow up in a month and another MRI next week, I also feel a little abandoned by her doctors. I have no one to call with questions, I don't think her Primary care doctor knows half of what went on. I haven't received any information about the tests that we were waiting on when we went home. They are so focused on getting her enrolled in rehab and this program called Early Intervention that I feel like the rest doesn't matter.

Even though I feel like people don't care, I know it's not true. One of our friends from the radio station started a facebook page for Aly and a donor account to pay for the massive bills we are receiving. People are asking about Aly every day. People are still rooting for her. It's less drama for people when she's not covered in tubes and hooked up to machines, so I should have known the massive outpouring of support was going to slow down. I always knew that it was going to be hard to transition back to real life. I don't even know what real life is for us.

Right now, I am working about 32-36 hours a week and Ben is working 40. We work opposite schedules, he closes and I open. This means he does not see Aly after he gets home. Her bedtime is right when he gets off work. Aly is used to getting up for the day around 6 am so it doesn't make sense to try and push her bedtime later, when I have to get up that early for work anyway. It sucks being a grown up and having to make sacrifices. Part of being a parent is putting your child first. Yeah, it would be nice to have Ben home to take care of her full time, or even me. But we can't afford it. Sometimes being a grown up means gritting your teeth and just powering through.

I love my daughter. I will do whatever it takes to make her happy and healthy. If that means we are in debt up to our eyeballs, I will do it. If that means her daddy only gets to see her on weekends, he will do it for her. Someday she will understand. Maybe not until she has a child of her own. Hopefully, she will thank us. We will cheer Aly on no matter what she is doing no matter how big or little the fight. I know sometimes the crowd will just be the two of us, and other times it will be the whole crowd.

GO ALY!

Landslide

One of the things that helped me the most during Aly's hospital stay was music. I could do an entire post (and probably will) on songs that helped me or that held special meaning for me during this time.

One such song, is Landslide by Fleetwood Mac. While I was pregnant with Aly, I listened to the Dixie Chicks version of the song a lot. My Grandpa Elmer died the same day I found out I was having a girl. The song really hit home for so many reasons. I listened to it once a day for several weeks. I would almost always cry. Now, just thinking about the song, I feel tears start.

Aly turned 9 months on July 22. We decided to really celebrate her birthday and we went to Smith's Marketplace to buy her a present. I wanted to get her some nice blankets instead of the generic hospital blankets. So when they kicked us out of the PICU for shift change we went to the store. On the drive there, the radio played Landslide by the Smashing Pumpkins. This is a song they never play anymore. The Smashing Pumpkins are one of my favorite bands. We took it as a good sign. That was the day she really started turning around, and started opening her eyes again. The next day she left the PICU.

I've heard Landslide a couple more times since then, which is pretty rare, since before then we almost never heard it on the radio. It's like the Universe telling me things are going to be okay. It's funny how the same song can mean so many different things at different times of your life.

Landslide
written by Stevie Nicks

I took my love, I took it down
Climbed a mountain and I turned around
And I saw my reflection in the snow covered hills
Till the landslide brought me down

Oh, mirror in the sky, what is love?
Can the child within my heart rise above?
Can I sail through the changing ocean tides?
Can I handle the seasons of my life?

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Even children get older and I'm getting older too

Well, I've been afraid of changing
'Cause I've built my life around you
But time makes you bolder
Even children get older and I'm getting older too
Oh, I'm getting older too

Awh, take my love, take it down
Awh, climb a mountain and turn around
And if you see my reflection in the snow covered hills
Well, the landslide bring it down

And if you see my reflection in the snow covered hills
Well, the landslide bring it down
Oh, the landslide bring it down

GO ALY!

Hospital Survival Guide

The parent resource center at Primary's is amazing and definitely a survival tool for an extended hospital stay

Up until about a year ago, the longest I had ever spent in a hospital was about 8 hours when I was 12 to have an outpatient surgery done to remove a pre-cancerous growth on my head. (it sounds worse than it was, basically I had a bald spot on my scalp that they removed in case it would turn into cancer at some point. I still have a small scar where hair won't grow.)
Now, I have spent much more time in the hospital between giving birth and Aly's time at PCMC. I wouldn't call myself an expert by any means, but I do feel like I have some good advice on what one should bring if they ever have to spend time in the ER, maternity ward, picu, infant unit etc.

The number one most important thing...

1. SOCKS!! Hospitals are cold. I don't know about you, by my feet are always colder than the rest of my body. Trying to sleep with cold feet is always impossible. Plus if you have to get out of bed to pee walking across the cold hospital floor is a rude awakening. Even if you are just there for monitoring, those hospital blankets can never seem to warm up the feet. Buy those slipper socks that have the traction on the soles and your feet will be toasty warm, and you won't slip on the floor.

2. Lip Balm- I got the worst chapped lips in the PICU. They recirculate the air so it is really really dry. Even on the general floor, you are not getting fresh air so you will dry out faster. I liked Soft Lips this visit. But there are a ton of different lip products out there, pick your favorite. Make sure it's within arms reach for when you wake up in the middle of the night.

3. Your Own Pillow or at least a pillow from home- Hospital pillows are as bad as airplane pillows. Flat as a board, no support whatsoever. You can try mashing 3 of them together to almost get the softness of one regular pillow, or you can just bring one from home. I would also bring a pretty pillow case to differentiate form the hospital ones so it doesn't get thrown in with the laundry.

4. A iPad/tablet device- Unless you have a super light ultra book, a regular sized laptop and accessories can be a lot to lug around plus there is usually limited counter top space in a hospital room. The iPad is great because it charges fast (and you can use the same cord to charge your iPod, which is another important thing for the hospital) and its self contained. No mouse, no extras. You can use it to read, play games, check e-mail, take notes, do research. I suppose you could also use a smartphone, but sometimes the larger screen and apps lend themselves more easily to certain functions. Like LiveJournal.

5. A sleeping bag- If you are going to break the rules and have a second person spend the night, it will be nice to have at least some cushion between you and the hospital floor. Plus the floor is about 20 degrees colder than the already frigid air. This is something I would only pull out for an extended stay, and if you are going to be sleeping on the floor or waiting room couch.

6. A notebook- After so many days with no sleep and crazy amounts of stress, days and nights start to run together in one muddled heap. I found it helpful to make a calendar with what happened each day, which doctors we saw, what tests were run, who visited, etc. I also used it to track things like meds, feedings, songs I heard that meant something to me, and I also used it to just journal until I could get to a computer.

7. Food for the nurses- We gave our nurses Mickey Mouse shaped Rice Krispy treats from the radio station. Our friends also brought treats for the staff to the PICU one night. One morning I dropped donuts off at the nurses station. It's just a en extra way to show your appreciation. After spending 12 hours with a nurse, it can feel nice to do something nice for her after she took such good care of your child.

8. A change of clothes- Even if you are not going to stay the night, there are many reasons why a person in the hospital could need an extra pair of pants or a shirt. For me, the most common was baby vomit. Aly puked on me in the ER and I had nothing to change into. Luckily the hospital gave me a pair of scrub pants, but there were other times when I was not so lucky.

9. A toothbrush- If you are unable to shower, sometimes brushing your teeth is the best way to feel like you have cleaned yourself up. Bad breath can abound from lack of sleep, eating at odd hours and drinking coffee round the clock. When I had Aly, I forgot my toothbrush and went three days without brushing my teeth. Yuck. A clean mouth just makes you feel better.

10. A friend- Sometimes in the hospital, you get stuck in a altered state of reality. You forget that there is a world outside of what you are going through. The best thing is to occasionally leave the hospital, and talk about anything but what is going on in there. If you can just talk to someone about their life, or TV, or movies etc., you will remember that the world is still turning and you will be able to rejoin it eventually. So find a friend who is slightly removed from the situation, who will do that for you. :)


GO ALY!

The Worst Night

Two weeks ago July 18th, was probably the worst night of my life. Strangely it was probably not Aly's as she was so sedated and out of it she will probably never remember. Unfortunately she had worse days later in the week.

Aly was transferred out of the PICU after one night. She was grumpy and irritable, but she was not opening her eyes. They thought she might still be recovering from the seizures. She went upstairs to the Infant Unit where we saw the doctors there. One, Dr. Brittany listened to her head with a stethoscope and thought she could hear fluid in Aly's fontanel (soft spot). A couple different doctors listened to Aly's head. We were transferred to another room in the infant unit, this time a private room. But we hadn't even put down our bags when Aly's neurologist, Dr. Betsy came to the room and said I want her back in the PICU and I want an MRI asap. Originally they were going to wait to do the MRI, but Aly's condition had not improved, and the sound they heard in her fontanel had everyone on alert. Dr. Betsy had to pull some strings to get Aly in for the MRI. She had to beg people to stay late and round up people to do Aly's sedation and her breathing machine. They sent Aly for the MRI around 6:00 pm.

We got Aly back in the room around 8pm. The doctors had to spend some time with radiology to read the images. Two doctors, Dr. Jessica one of the PICU residents and another that I never got the name of came to see us after 9pm. They told us, "Let's all pull up a chair and discuss the results." Ben and I just knew. Doctors never sit down for anything. Aly's brain was swollen. A lot. All over her brain. They didn't know why. The outcomes could range from a perfect recovery all the way to death. They thought with the amount of swelling and trauma to the brain, brain damage was a very possible reality.

This is where it gets hard. The feelings are still very fresh to me. Plus, I don't know how comfortable I am sharing this because its not only my story, but Ben's as well. I will tell you that at one point I went completely numb and just sat there silently imploding. Ben had to leave the room and pace the parking lot to avoid having a panic attack.  I may have yelled at a doctor at one point.

I didn't allow myself to feel anything while inside the hospital. Once I went outside, and I was away from other people except Ben, I was finally able to let it out. I don't think I will ever cry that hard again. I just remember feeling so angry. Why my baby? Why me? Why did this have to happen? Aly was so healthy just a few days ago. How can this happen? I remember walking around the hospital grounds, just aimlessly wandering, hoping I could find a place I felt safe. I prayed. I bargained with God to spare Aly and take me instead. I begged. I made promises. I wanted to break things. I wanted to break myself. I mostly just wanted to stop feeling the pain. I just wanted to shut my eyes and make it all go away.

I would say I cried myself to sleep, but I don't think I ever slept that night. The next day, we decided to try to be positive and strong for Aly again. But just for one night, I fell apart. I broke down. Luckily Ben was with me, and he was the only person on the planet who knew exactly what I was feeling.

That was the worst night. I'm not going to say the worst night so far, because I don't think many things could make for a more awful night.

I like to end my posts on a positive note, so I will say that obviously, things did get better from then on. Aly did have a few setbacks, there were a couple times when I doubted she'd ever be the same again or leave the hospital. But she showed everyone. One of the PICU docs told us when she left the unit, "That is not the same baby I saw on Wednesday. I am so glad she proved me wrong." Aly will continue to prove everyone wrong who doubts her. She is the strongest little person I know and she's not even a year old yet.

GO ALY!