30 August 2011

The Haunting

Today, for some unknown reason, all my depression came swirling back around me. I had been feeling so much better lately, I really thought I had seen the worst. But tonight I have been dealing with things I even thought I had moved past. I am frustrated that I can't breastfeed Abigail and that we didn't bond right after she was born. There is no reason why I couldn't have held her after the numbness wore off, she certainly was in no danger of dying in the 20 minutes it would have taken for me to cuddle with my first born baby. I feel like a failure as a mother. She's not gaining weight fast enough, there is still her low white blood count issue to figure out. I am also frustrated with body, with my weight, with my stretched-out skin.

Why can't I just chill out? I'm finally going back to Florida, we have an apartment, Abigail's incision is healing wonderfully. My incision is healing wonderfully. Matt sent me roses. I'll see him in two and a half days. We're here, we're okay. Why isn't it enough? Sometimes I feel like I'm never going to feel normal and happy again.

24 August 2011

Slowly but Surely

The Baby
We visited the cardiologist (more accurately, his nurse practitioner) yesterday who assured us that everything is going well with the recovery and removed the steri strips from the incision. It is a bit weird to see a 3.5 inch long incision down the front of her chest, but it actually looks really good. She is hardly on any pain killers anymore and napping much better. We were also taken off house arrest. I was in pure bliss wandering the aisles of Meijer picking out Enfamil and watermelon.

Matt is in Florida, crashing with a friend, so I'm doing the single parenting thing, which is definitely taking its toll. I am so ready to get some relief! But now that she is doing better and sleeping more, it is getting much easier to bear.

Moving
We were approved for travel over Labor Day weekend, so we bought Matt's plane ticket to come back up for Friday the 2nd and we'll start driving down bright and early on Saturday. Meanwhile, I am spending the next week and a half packing, visiting family and friends, and going to doctor's appointments.

Me Personally
: ) So now that we are off house arrest, I am feeling much better. There are only two good things about Matt being gone: I can buy whatever food I want and dieting is much easier. After surgery, I resumed my daily walks and calorie counting, and added some ab strength-training exercises. The weight is very steadily coming off, but since I've never weighed this much in my life, even 1.5 lbs/week is too slow!

Florida
Our apartment will be ready about 2 or 3 days after we arrive, but a friend of my generously lent us the use of her house while she is out of town while we wait. I CAN'T WAIT to get everything unpacked and have control over my own life again!

18 August 2011

Guilty and Irony

Abigail is sleeping, which means I should be sleeping. And it's after midnight which means I definitely should be sleeping. Yet here I am. Exhausted and with insomnia. Ironic, isn't it?

Well, I upped Abigail's pain meds today which made her a millions times less fussy and, therefore, my life a million times easier. When I had an emotional breakdown at 7:00 this morning, I decided that something had to change immediately. When we left the hospital, my biggest concern was pain control, so the nurses consoled me how quickly kids bounce back from surgery, light-years faster than adults do. They said that by the two week follow up, kids are usually even off their pain meds! Well, I was thinking that we needed to wean Abigail off rather quickly then, and since she was really fussy but could be pacified with being held or a bottle, I didn't think she was in pain. Matt reminded me that since she was discharged from the hospital so early, she'll be about 3-5 days ahead of "normal" when she sees the doctor again. So, it would make sense if she was still on pain meds. I decided to up her medication to see if it had any effect. The results were immediate. She's been smiling and cooing again, she's back on her normal nap schedule, she naps next to me instead of while being held by me. I seriously feel like I've had a vacation! I can't leave the house to go to the store, I am taking care of her alone, but I feel like I've had a vacation. Ironic, isn't it?

I think I've said this before, but I always feel guilty over everything, and my complaining was no exception. I feel an incredible amount of gratefulness to everyone for keeping us in their prayers. I can't tell you how many people I hardly even know have come up to me and asked how Abigail is doing and tell me they prayed for her. I have people volunteering to come over and help me pack while in Michigan, I have people in Florida volunteering to let us live in their house until our apartment is ready. Matt is currently living with people in Florida who let him ride with them to class and someone even generously picked him up from the airport when he arrived. Sometimes I think about how blessed we are and I feel like bursting into tears of thankfulness. So when I was complaining about dealing with a post-surgery baby at home, I felt awful. Like my feelings of frustration meant I wasn't truly appreciative of everyone's generosity. We are really, amazingly, unbelievable blessed. Even though the situation isn't perfect, ever since surgery, things keep going right. How could I complain? So now that things are going well again, I feel an incredible amount of guilt that I started whining the second something bad happened. If I was God, I'd drop me like a bad habit.

When my daughter was baptized, the priest told us that Abigail wasn't ours, but on loan to us from God. When we die, we will have to account for all of the things we've done for her, good and bad. It's really humbling to think about it from that perspective and makes me act much more unselfishly. Well, I think you could realize that for just about everything. Matt isn't mine, he's God's. And when I die, I will have to face everything I've ever done to help and hurt him. Every blessing I have, in fact, I didn't earn. God gave them to me. And when I die, I'll have to consider how I used each and every one. I don't think I'd be able to figure it out on my own, so its a good thing I can ask God to help me use His gifts in the best manner possible. Ironic, isn't it?

Something kind of funny: so yesterday my grandmother bagged up some trash in the kitchen and told me she'd take it out to the garage after a bit, then she went and laid down. Well, I didn't want her to have to carry it down the long hallway with all of her ailments, so I did it for her. I then felt guilty because I hadn't seen the trash getting full and taken care of it myself. I also felt guilty for taking it out because it was light and therefore a relatively easy chore and maybe she felt like a burden or that I was taking away her independence by doing everything for her. I simultaneously felt guilty for taking care of it and not taking care of it earlier. Is it possible to have a guilt disorder?

16 August 2011

Law School Widow

Yesterday I hated law school with a seething passion. And all it took was becoming the single parent of a post-surgery baby.

Abigail did not sleep yesterday. Her naps were no longer than 20 minutes at a time the entire day. She fought sleep like nobody's business. She would only sleep if I held her, so I would hold her until she was completely out, then set her very gently down. Just in the time it takes to go to the bathroom, she'd go from fussy to angry cries. By the time I finished washing my hands, she was red-faced with tears in her eyes. I know she's uncomfortable, and I make sure she gets her meds on time, but even when I give them to her (orally with a dropper), she cries like I'm pinching her.

So I had a bit of a breakdown. I hated law school, I hated the hospital for postponing surgery, I hated the hematologist for finding things wrong with her blood count. I was mad at Matt for going down and leaving me, I was mad at my todo list of things I need to get done the very week we get home from the hospital. I had about a two second pity party before Abigail started fussing again. When she finally crashed around 7pm, I was ready to crash too. It was a fitful night of sleep, but thankfully she is out right now.

I am alone for another 16 days, so I've mentally divided up the next three weeks in order to help me get through them. The doctors don't want her near germs, so for the next two weeks, we are supposed to avoid stores, restaurants, and even church. I have a fair number of things to do before we move, so I am trying to spread those out over the next three weeks, plus the weeks will be punctuated with the usual doctor's appointments. We need to get blood drawn twice a week, plus a pediatrician appointment this week, a cardiologist appointment next week, and a hematologist appointment the following week.

I can't wait to get my sweet, snuggly baby back. And my own apartment. By this time next month, the three of us (plus the two kitties) will be happily relaxing on the couch in our unpacked apartment. Eak!

14 August 2011

Travels

On Friday, the day we were originally scheduled to leave the ICU, we were discharged from the hospital. We are home now, and doing quite well. On Saturday morning, Matt left for Florida to start school on Monday. He will most likely return on Thursday 1 September, and we'll drive down to Florida over Labor Day weekend.

Well, I will post a longer post later, but I just wanted to give everyone an update for now.

10 August 2011

Baby Heart Saga - Technicalities

This is a technical post for all of our medically inclined friends. Please feel free to skip : )

So, when Abigail was still just a 29-week-old fetus, she was diagnosed with Tetralogy of Fallot (TOF). When it was discovered that she did not have one of the four key components of TOF, there was some scholarly debate as to whether or not one could say she truly had TOF. Well, after surgery, it turned out she was missing a second component as well. We spoke with the surgeon yesterday and she believes that it is misleading to say that Abigail has TOF, as she doesn't have and won't experience most TOF complications.

So, she officially has/had a misaligned VSD with ASD, right aortic arch, and possible vascular ring. She had a VSD and ASD/POF repair and the surgeon made the necessary repairs if a vascular ring had be present.

She was born with 4 confirmed and 1 possible congenital heart defects. She is currently down to one. They won't repair the right aortic arch, but don't expect it to pose any problems. There is a 5-10% chance that Abigail will need a follow-up surgery, but no one is expecting it anytime in the near future.

And there you have it.

Baby Heart Saga - ICU Updates

"She is beating the curve," to quote the on-staff cardiologist. All of the breathing tubes have been removed; she is 100% on her own right now. The chest tube will be removed later this morning. She has been digesting food via the feeding tube very well and has even had a bowel movement already. We are going to try bottle feeding later today. The catheter was removed yesterday. She will be discharged to the general care floor (known as "5 East," or 5E for the purposes of this blog) later today as well. One person is allowed to sleep at her bedside on 5E, so we will no longer need our room in the hospital's on-site hotel, the Med Inn. I am willing to place my bets on a hospital discharge this Saturday or Sunday, a far cry from the original doctor-based recommendation of next Tuesday to Thursday. She is flying at an amazing pace. I am chalking it up to the prayers ; )

Matt emailed some people yesterday to try to see if he can find a spare room in which to crash in Florida until Abigail is cleared to travel. The apartment won't be ready until Sep 8, which should be after she is cleared, so he will fly back up the Friday before Labor Day weekend and we'll start the trek that Saturday. He will either go down this Sunday (the 14th) or next (the 21st). Classes start the 15th. He is still deciding which day he wants to go down. We'll see. Oi. Lots of planning and lots of time apart, which is never exciting, but at least Abigail is healed.

PS, If you ever want to read the history of Abigail's heart issues, just type "Baby Heart Saga" into the search box on my blog. Every post that is based solely on news about Abigail's heart, even from before she was born, is titled "Baby Heart Saga" - Specific Topic.

08 August 2011

Baby Heart Saga - Recovery

It is about 1:30 in the morning and I am sitting by my baby's bedside. She had open heart surgery today. I never really knew what that meant before Abigail had it. It means they cut open the walls of the heart. Open-the-heart surgery.

She is doing really, really well. Better than anyone expected at this point. We are hoping to leave the ICU tomorrow, 2 days instead of 3-4. It is funny how much that one day feels like a lifetime. Haha, Down Syndrome. You lose again.

Some people don't like hospitals, can't stand them even. I, personally, love them. They are currently monitoring 12 different vitals that I can count off the top of my head. She is the nurse's only patient. The doctors come around three times a day to check on Abigail. If anything goes even slightly askew, someone will immediately notice and fix it. It probably helps that I don't mind blood and needles, but for me, nothing is quite as comforting as walking the halls of this giant hospital. Even the parking garage makes me feel warm and fuzzy inside.

The one thing I don't like about hospitals is that I feel like they act like she is their baby and I am just visiting. I have to call on the oversized phone the color of dirty water to get permission to enter the ICU. I won't be the one to feed her or change her diaper while she is here. There are too many wires and tubes coming from her. I fix her blankets, her stuffed animal, and adjust her hat, but then someone else rearranges it. She is too hot they say. I just touched her. She is not too hot. The monitor said she was.

I watch the other nurses with the other babies and I see how much they really do care about them. I try to remind myself that my nurse feels that way about my baby too. Everyone wants what is best for her and they are better able to tell when her fusses mean that she needs more morphine. It surprised me how quickly the night nurse realized that Abigail likes to be jiggled. I guess this isn't her first baby.

I am completely exhausted, but I tried to sleep, and I had a very hard time fall asleep and could not stay asleep. I kept thinking about Abigail. I think becoming a mom gives you the ability to function long-term on very little sleep. I might crash in waiting room in a few hours if I can't stand it any longer. The nurses are bugging me to sleep. They did that when I gave birth too. Can't they understand I'd rather have no sleep than no baby?

Now that surgery is over, people keep saying, "you must be so relieved!" I'm not really. I see the recovery process as being more arduous than the surgical process. For some reason I worry that there are more things to go wrong now. Surgery almost always goes according to plan. There are more variables in the healing process.

I have an inane fear that she will be a different person after surgery. I know that this is irrational, but for some reason it won't leave my head. Long recovery process. It doesn't end when we leave the hospital.

I don't know when Matt will go back to school. They are thinking she'll be cleared to travel in 2-3 weeks following surgery. I have a feeling it will be 3 weeks, but either way that puts us back before September. I hope our apartment will be ready in time.

I am so thankful that things are finally starting to go right in my life again. I think it is everyone's prayers. She is on 4 different prayer chains about which I know, not to mention that just about everyone we know is praying for her. I am very thankful for all the prayers.

Family photo. Taken last week. 10 weeks old.

Baby Heart Saga - Post Surgery

Abigail's surgery was today, and thankfully, we can report some good news. The surgery was very successful. It only took about 1.5 hours (we were anticipating 3-4 hours), and everything inside was exactly as expected. Right now she is in the ICU and is recovering very well. Initially they thought she would be in ICU for 3-4 days, but she is doing so well following surgery that they are now anticipating 1-2 days until she will be discharged on to the general care floor for about 4-7 days.

We are still uncertain as to when Matt will head down for school (which starts on the 15th), but they expect that Abigail will be cleared to travel in 2-3 weeks. As it turns out, UM is close with the nearest children's hospital in Florida (which will be about 2.5 hours away from our apartment) and we'll have no problem transferring care. Even better, the FL hospital has a clinic in a city very near to where we plan to live.

Thank you so much for all the prayers. I am certain that she would not be doing as well as she is if it were not for your devotions!

Thanks and God Bless,

Jacqueline, Matt, & Abigail

06 August 2011

Sweet Victory

Ya'll will never guess who called me this week. Remember the jerk I used to work for? He called me. He asked for me to come back. Yup, that's right, the ULTIMATE vindication! Oh yeah! You know what I said? Yes. Haha! Allow me to explain.

This time I will work for him strictly as a traditional freelancer. I will work part time from home on my own schedule. I will simply send in the projects. And since I have worked for him before, I know that he always has one of his employees interacting with his freelancers. I will probably see him twice in the entire time that I will be in Florida. He will sign a contract of my creation or I will not work for him. If he insults me once, I will leave. I said yes for two reasons:
1. He is a very steady client. He has been and will be in business for a long time and he will not take his marketing back in-house. Stability in the world of freelance is very hard to come by.
2. As bad of a guy as he is, he never stiffs his contractors money. I know he'll pay me properly and on time.

Our plan was for me to pick up some more freelance work once we got settled back in Florida. The death of our car and Abigail's medical issues drained us of our savings faster than we anticipated, so we've been anxious for me to find some work. This is so exciting, both as vindication that I did the right thing back in January and also that I already have another client lined up for when I return.

Ah, sweet victory.

Surgery

We are to report for surgery at 6:15am on Monday 8 August. Pray for us!

04 August 2011

One Step Ahead

-In just a few days, my daughter will have open heart surgery. -1
-In just over a week, my husband will go back to Florida. -1
-The hotel that is attached to the hospital is all booked up. We will have to stay off-site while she is in the ICU. -1
-My living situation is driving me crazy. I need my own space. -1
-I cannot believe that there are so many medical bills. -1
-I have been calorie counting and exercising like a mad man (+1) but haven't seen any results yet : (  (-1)
-The exact apartment in FL I wanted just opened up - right floorplan, right complex, right floor; it's cheaper than I anticipated. +2
-Tomorrow is Matt's last day of work. Then he will be (mostly) all mine until school starts back up. +1
-If he hasn't found post-graduation work by March, someone may have a legal job with a modest income for him in Michigan. +1
-I think my post-partum depression may finally be showing some signs of easing up. +1

I need one more positive so that I can come out ahead in this thing. Hmm...I have an afghan all picked out that I want to crochet Abigail once we get back to Florida. Does that count? I am going to make it rather sizeable so that it can work as a bedspread for her little crib (aka, pack n play). And I may even start it in Michigan if I finish the blanket I am knitting her now while in the hospital. Ha, take that world.