Thursday, April 14, 2016

How Lincoln Saved My Life

Last year at this time I was in a bad place.  I was finally about to find a medication that made me feel a little better, but not myself.  And things were going to get harder.

Dave and I had gone on a 10-year anniversary cruise, the first time I'd left my girls overnight.  I was excited.  But then we arrived at the ship and had to say goodbye.  I had a panic attack.  I know now that I've had panic attacks in the past, but not like this one.  Thank goodness I had a Valium or two in my bag because my mother-in-law knew I might need one.  Once I came out of the panic attack I really did have a wonderful time with my husband.  But my breathing was weird.

Anytime something physical happens, I tell myself it's because I'm overweight or out of shape or some other reason I come up with to blame myself.  So certainly I can't breathe because of those reasons.  I tried to make like it was no big deal.  Dave started noticing.  I couldn't seem to get a deep enough breath to tell my brain that I wasn't suffocating.  Still, I let it go and headed back to work in September.  Dave had been pushing for me to see a doctor.  After the first day of school when I could barely sing with my students or even complete a full sentence without gasping for air, I finally went to the clinic.

The doctor at the clinic was very kind.  He ran so many tests and asked questions I would never have even thought of.  They did a chest X-Ray, an EEG, and sent me for blood work.  It turns out this physical issue I was having was a direct result of my mental health (or lack thereof).  He recommended I see a psychologist and go on anxiety medication.  I did not want to go on anxiety medication, because I don't want to spend my life being medicated and not feeling my full range of emotion.

I found a behavioral therapist for the meds and an LCSW for talk therapy.  The talk therapy was amazing, the meds were frustrating.  It took over four months to find a medication that helped me feel a little tiny bit better.  But in January, the meds started to work a little, so I was trying to have a better outlook.  The talk therapist, Jo, told me in my first session that I was depressed.  I thought she was out of her mind.  I am an outgoing, happy-go-lucky kind of girl a lot of the time.  My students think I'm funny, my kids think I'm silly, (my husband thinks I'm crazy).  How could I be depressed?  The depression was causing or playing into my anxiety.  Eventually, Jo even told me I have OCD, which is how we finally found a medication that started to work.

In February my uncle was killed in a car crash.  We weren't really close or anything, but I am a family girl and I was so sad.  Then at the beginning of April my grandmother died.  We WERE close.  In fact, we were on our way to Ohio to see her (figuring it would be our last time), when she passed away.  I was devastated.  And Dave comforted me.

And I got pregnant.  When I realized I was pregnant, I was absolutely panicked.  How could I have another baby when I couldn't even take care of myself anymore?  I was scared, angry, and anxious.  It took us two years to get pregnant with the twins while trying trying trying.  One time and I'm pregnant again?!  I didn't want to tell anyone, because I wasn't even sure I wanted to tell myself.

But we did.  And I tried to get excited.  And I started to feel better.  I immediately went off the meds the day I realized I was pregnant.  And somehow I started to feel better.  And as the pregnancy went on, I felt more and more like me.  I think the hormones in my body reset or rebooted my brain.

I haven't gone back on meds or felt depressed since.  Even through Lincoln's terrifying birth, no depression.  I do live in fear that it will come back.  It was awful.  Worse than I realized when I was in it.

Lincoln saved my life.  Being pregnant somehow made me feel like me again.  So for everyone who says to me, "There must be a reason he's here since he's made it this far!"  You're right.  And he's already fulfilled that, so no need to put pressure on him to do more.

Friday, January 1, 2016

DAY 120!!! NEW YEAR'S EVE!

Lincoln's home!  We didn't tell anyone but our parents (and our loyal blog readers! (Vikki and Ronnie!)) that he was coming, because it would just have been so disappointing to report back if he wasn't.  We got to the hospital around 8:45, we had an appointment to meet with the home care folks who were delivering the oxygen.  A very nice lady named Heidi taught us how the oxygen works (Dave broke the key to turn it on and off on his FIRST try! LOL) and how to use and read the pulse/ox machine.  It was a lot of information, but we did well.  (Side note: the same company that is delivering Lincoln's oxygen is the company bringing me my CPAP machine in a few days.)

JoAnne worked overtime simply to be sure she was with us on our discharge day.  Loads of nurses stopped by to say goodbye.  JoAnne kept us busy with information on medications, home care, etc.  We packed up his room - a few trips to the car for Dave - four months in the hospital really adds up!  We were given samples of lots of things to get us started.  When I asked Piedad for a few blue nipples for his bottles, she gave me her entire bag!  I think I really forged some great relationships with the nurses, staff, and doctors, which meant a little extra mile for my Linky-boy.

It's important to note that the night before I said goodbye to a bunch of the folks on nights.  I brought a HUGE box of Lindor chocolates for everyone to share.  Even the girls at the front desk (secretary-ish?) gave me big huge hugs of congratulations.

Dr. Pynn came by on rounds around 10:30.  She told us she want to run new labs on Lincoln - blood work, results shouldn't take too long.  Also, they would like to do a head sono, just to follow up (and so that we won't have to do it outpatient in a week or two).  I told her she could do whatever she liked as long as she would still release him that day.  Dave and I offered to sign AMA forms (against medical advice) to take him home.

Luckily all went smoothly.  We set up his appointment with his pediatrician, we made necessary phone calls and received a list of numbers to call for more follow-ups.  EI (Early Intervention) called to say that they'd be calling in one week to set up our initial appointment.  Catholic Home Care called to say that they'll be sending a nurse to our home twice a week for two weeks, I believe, just to check on us and make sure we know what we're doing and see if we have any questions.  Pulmonology is to be called, opthamologist, renal ultrasound followed by a GI appointment.  The doctor appointments will go on and on.

But he's home.  His sisters were THRILLED to finally meet him.  We took 49277392357694 pictures and got 2 decent ones.  Grammy and Grandpa, who had been babysitting all day, took off.  We realized it was 6PM and no dinner.  We ordered from Applebees and Dave went to pick it up.  In the meantime, I tried to make sense of his oxygen, medications, breastmilk fortifier.  I started to get worried.  I got things set up for his next couple of feeds.  (JoAnne had set us up really well with fortified milk for 24 hours, thank goodness!)

Daddy came home and we ate and had fake New Year's with the twins.  We watched every Netflix New Year countdown (about 20 minutes of videos) and sent the twins to bed.  We played a board game from Christmas (Pic...something.  A Disney game.) with Elliot and got her off to bed.  Dave and I played a video game, Yoshi's Yarn World or something..., and when the ball dropped we had our ceremonious kiss and champagne.  (Lincoln got kisses but no champagne.)

I headed off to bed, Dave stayed up to feed Lincoln.  Dave is a NIGHT OWL.  I AM NOT.  Dave also got up at 4AM for his feed.  Then I got up at 7:15, pumped, and then fed Lincoln.  I had to wake Dave up because I could not for the life of me get that boy to take his bottle!  Dave and Lincoln went back to bed after that.  At noon I still could not get Lincoln to take his whole bottle, so Dave had to finish it all up again.  My confidence was sinking fast.  At four I didn't even try.  But at 8:00, little man and I rocked the bottle out together.  He must have known I needed it.  He loves his Mama.

Same plan for tonight - Dave for the midnight and 4 AM, I'll take the 8 and let him sleep.  Dave worked more on the craft desk we built in the toy room.  Bill and Betsy came over today (to a chorus of "I don't want Mommy and Daddy to go to the hospital!!!" which we happily let them know that we don't have to do that anymore!), and Bill helped David measure and cut the chair rail for Lincoln's room while Betsy got roped into (happily, I think) mending some toys and a dress that have seen better days.

Dave goes back to work in a few days and I'm really nervous.  He'll be taking a leave but hasn't set it up yet.  Lincoln has a visiting nurse on Monday and my CPAP is coming Tuesday.  I'm expecting weight checks at the pediatrician next week as well.  It's taken a lot of strength to get this far.  I'm trying to keep up now that the chaos has moved to the house.

It's good chaos, though.  I wouldn't trade it!

Wednesday, December 30, 2015

Day 119

Today Lincoln was circumcised.  According to his nurse Jenn (one of the many Jenn's), it was a "perfect" job and looks like "one of the best circs she's ever seen."

Two days ago Link had a rectal biopsy (we're really running this kid's privacy parts through the wringer!).  We were happy to find out today that he does not have Hirschprung's Disease, which would have meant his body is incapable of pooping on it's own.  Lincoln has a lot of trouble pooping, but his body is immature and his tone is low.  Because the results were negative...

If all goes well tonight, Lincoln comes home tomorrow!  There is a lot riding on tonight.  But tomorrow morning we meet the company in Link's room that will be providing the oxygen for home, and we get a lesson on it.  We will be schooled in his medication.  And we will move out of room A5 for the first time in 120 days!

Saturday, December 26, 2015

Christmas Day 2015

We had a lovely Christmas Day.  Elliot, Adeline & Charlotte woke us around 7:15, which was far better than what I had expected.  We opened presents, too many as always, and had a nice big breakfast of eggs, sausage, and toast.  We went outside to play in the incredible 60-65 degree weather.  The twins had gotten "motorcycles" and Elliot got a hockey set.  We enjoyed a good 30 minutes or more outside in the surprisingly warm sunshine, atypical of Christmas weather around here!  We headed inside, and Daddy made popovers (a Jak family tradition) which we ate for lunch.  Addie & Charlie headed off for naptime, Elliot exploring her new toys (I believe the Legos won out this time), and Mom and Dad tried to make sense of all the new stuff in the house.

We woke the twins from their nap a little before 4 and Dave and I drove them to his Uncle Tom's house.  We dropped the kids there with Grammy and Grandpa, and then David and I headed off to the hospital.  We handed off a box of chocolates to our nurse JoAnne who always signs up for Lincoln.  We cuddled, fed, and snuggled our baby.  Just before his feed, JoAnne agreed to remove his NG tube as Link has now gone over 48 hours of nippling all feeds.  That was a nice Christmas gift - one less thing for Lincoln to be hooked up to!  We can see still a bit more of his sweet face!  After his feed, Dave and I went up to the Ronald McDonald room for dinner.  There was (cold) garlic pasta with broccoli, linguine and mussels (we don't eat seafood, so we avoided this one!), baked ziti, and sausage and peppers.  All cold.  And the microwave there is broken.  The kind volunteers offered to take our plates to another unit in the hospital and heat up our meals, but it just wasn't that big a deal, so we ate the cold food.  We had dessert as well, then headed back down for more cuddling (and pumping).

I am a huge breastfeeding advocate and I really nursed my three girls for a long time.  Lincoln's situation is of course totally different from the girls and I'm just so desperate to have him home at this point, I haven't even tried breastfeeding in at least a week!  My plan is to start up at home with one or two feeds a day.  I will continue pumping, I truly believe that my breastmilk is keeping this boy healthy and growing.  He has to go 48 hours of fully nippled feeds to come home (he's hit that mark now!), and I didn't want to mess with his stats by trying breastfeeding as well.  Looking forward to having him home so we can back on the wagon.

Speaking of coming home, we're definitely in the single digits.  I'm actually guessing five days.  His carseat is in his room, JoAnne is going to do the carseat test today!  (An hour and a half of sitting in the carseat to be sure his sats don't tank.)  We're waiting on clearance from cardio, his surgeon (for pooping issues), and his oxygen delivery.  The end is SO near!!!

Thursday, December 24, 2015

40 weeks old

Tomorrow is Lincoln's due date.  He's ready to come home. He needs an oxygen tank set up at home as well asnanoortable tank and he will come home with a pulse-ox monitor. He needs to be signed off on by cardio. He needs his circumcision. He needs his ... I can't remember it all. But the wheels are in motion. 

Tomorrow is Christmas Day. Lincoln's due date. We'll open our presents, go to Grammy and Grandpa's to open more (missing my family and feeling so homesick), send the girls with their grandparents to David's uncle's house while David and I head up to get some quiet snuggles with our little man. 

I'm so grateful for the health of our son. One of his docs this week said that he has had the best possible outcome for a 23-weeker. Everyone today was shocked that a wimpy white boy was rocking out his due date. Now to get him home.

Friday, December 18, 2015

Oh Poop

Lincoln likes to keep us on our toes. Just when we get lulled into a false sense of security (I was back to secretly wishing for a Christmas Eve release...), something new comes our way!  Today was poop. Lincoln doesn't really poop on his own. He has be 'stimmed' (Lubricated rectal thermometer) or given a suppository, or most often, both. And still we wait. And after a couple of days, the flood gates open and poops rivers. 
Today when it was mentioned at rounds, folks got more serious. A surgical consult was called in. A barium enema was ordered. Potential surgery for Hirschprungs Disease - and a biopsy of his colon to diagnose. Surgeon said no more stimming or suppositories. Barium enema done - injecting contrast liquid so colon can be x-rayed to determine where the problems are.  X-rays looked good, so he'll simply be watched for few days by NICU docs and surgeon. 

We're still waiting on him,to improve with feeds. He's doing well when nippling every other feed, but he does not have the stamina to nipple every feed - he simply gets too tired. Feeds are what are really holding him back from coming home. He'll come home on oxygen - a big tank for the house and a small tank for traveling to doc appointments, etc. His tone sucks as well, he was a 23-weeker and this is to be expected. It's why bottling and pooping is so hard. He already sees a speech therapist and a physical therapist. Both of those will continue when we leave the hospital as part of early intervention.

Tuesday, December 15, 2015

"The Big D..."

Today for the first time, both our nurse (Kelly A) and our doctor (Dr. D) mentioned "The Big D..."  It's been our goal since day one, but one day one and week one and month one I wasn't sure we'd even get to have The Big D...  No one will say the word, but they all say The Big D...

Discharge.  It's so close I can almost imagine it.  It will come with lists and lists of to-dos.  It will come with multiple prescriptions and instructions.  But it will come.  Sooner than later, in fact.  Today, Lincoln was moved off his 1L cannula and onto a cc flow.  The cc flow delivers pure oxygen (not mixed with room air) but in a much smaller amount (125mL instead of 1000mL).  His daily caffeine (to keep A's and B's at bay - which haven't been a problem AT ALL) was DC'ed today.  His daily potassium and sodium are being halved.

Dr. D sat in the rocking chair in our room (there because Kelly likes it for bottlefeeding) and chatted with me for 10 minutes or so today.  He said feeds are going better, but expects the once the reflux medication really kicks in they'll improve even more.  A few days ago someone finally listened when the nurses said reflux.  (JoAnne has been telling me for about 5 weeks that he has reflux!)  GI came down and put a tube down Lincoln's throat for 24 hours that read the acidity and reflux levels.  Dr. D told me that any episode of acid lasting longer than 5 minutes is a concern and considered reflux.  Lincoln had one episode that last 13 minutes!  Imagine that pain?  Poor baby!  The medication should be very effective in treating the reflux.

Dr. D explained the other stuff above, too.  He talked about what an old man Lincoln is; he asked how many days old he is - 104 - and how many weeks he is gestationally - 38.  Thirty-eight weeks is not actually that old, Dr. D said, we'll cut him a little slack.  When Lincoln comes home, he'll come home on his CC flow and will follow Pulmonology for his crappy lungs.  Eventually pulmonology will wean his oxygen at home, starting with days.

The end is near.  I'm ready.  But Link can take the time he needs, because we want him to come home as healthy as possible.  And because he's coming home, and I could not be more grateful.