This is not maternity leave

When I had my son I was lucky enough to have saved up enough leave to take off three months to be with him.  During that maternity leave I learned how to be a mother.  I hardly slept because I was either nursing or changing diapers or watching him sleep to make sure he was breathing.  I took him to his doctor appointments.  We went shopping, to the movies, out for dinner and we hung out at the pool.  It was an enjoyable time bonding with my new baby.  That is maternity leave.

What I am doing now is not maternity leave.  Since my daughter has been home, we have had so many medical appointments I have lost track.  Each week we have had doctor appointments or testing or visits by our home nurse or PT.  This week we had our follow up to her hearing test which she failed in the hospital (she failed again so we have another test scheduled for later this month).  We had an abdominal sonogram to check on her organs which they have been telling us were not in the "normal" placement (turned out all organs are right where they are supposed to be).  We had our visit with the home nurse (one more visit to go).  And we will have our PT appointment later this week.  Also, I had an appointment to get my flu shot and my TDAP to make sure I don't get myself or my baby sick.  I also have follow up blood work this week since my last lab work at Hopkins indicated very low iron levels which are apparently concerning now.  This is a typical week for us.

Regular baby bonding things like feedings are also more complicated this time around. We have to give her two feedings of extra calorie supplements and two feedings of iron supplements.  Since she is a preemie she sleeps all the time so I have to actually wake her to feed her (no, this is not wonderful, she needs to eat and letting her sleep longer is not an option) and due to her GI issues she is very gassy and has a more difficult time feeding than my son did not to mention the special preemie formula she is taking.

Yes, I get cuddle time and we are definitely bonding; however, it is not the same.  I have not been able to enjoy taking her out to show her off like all mothers want to do.  For the most part, we are on lock down at home to keep her from getting sick or sitting in doctor offices surrounded by sick people (go figure).

I am not writing this as a complaint about being home with her.  I am grateful she is such a fighter and that she has such wonderful health care providers and our insurance is awesome. I don't even mind sitting in my living room for hours watching her sleep and catching up on my "stories".  What bothers me is the misconception that this is somehow an enjoyable situation like I am on vacation or something.  Yes, I am glad I am able to be here for her when she needs me.  There is no way I could be at all of these appointments if I was working.  BUT, I would trade this in and return to work in a heart beat if she could have been born a healthy full-term baby who only required the routine doctor visits.  I would trade it all in to not hear comments like "well being stuck at home is better than being stuck in the NICU isn't it?" in response to my saying I would love to be able to get out even if just walking around the mall or having coffee at Starbucks.  YES, it is better to be at home than in the NICU (if you had been in the NICU yourself you would not have said this so I am assuming you know thing about what you are saying) but both options are not optimal.  Please do not make me feel like a POS parent for wanting for normalcy.  On the few occasions we have taken her out to run errands, people have commented about how surprising it was we took her out.  Weren't we afraid she would get sick?  Bad Parents!

My message to the haters who are jealous of my extended leave would be "don't worry, I am not enjoying myself as much as you think I am." And to the people who are concerned I am not making the best parenting decisions, "please stop worrying because she is my child, not yours."  There is not a human being on this planet more concerned with her well-being than I am (except my husband).

This is not maternity leave or a paid vacation.  This is leave to care for my baby who has special medical needs.  I am making the most of the situation; turning lemons into lemonade.

The Longest Week

One week from today we have our anatomy scan for baby #2.  I do not remember the anticipation being this bad with my son. This pregnancy feels very similar to my last one or better. The second trimester is wonderful since, for the most part, the morning sickness has passed and my appetite is back to normal.  I have gained 1 pound so far and I am at 19 weeks.  I have had dreams about having a second boy but they could just be my brain remembering the last pregnancy and since having a boy is all I know.  My son refers to the baby as his little brother.  So the wait continues.  Next week I get to fill this box with pink or blue balloons for my son to open.  Either way, we are excited to see our little one and hope they are growing big and strong.

Sister or Brother? Time will tell...

I realized that since I had to keep this pregnancy a secret for so long I was in some kind of denial or non-acceptance.  Part of that meant not taking any pictures of my bump.  With my first son, I kept a pregnancy journal documenting each week and all the changes.  This time I have done nothing. Is this normal? Is this what its like to be the second child?  From here on out, I promise to embrace this experience as I did before.  To take pictures, eat better (or try), sing and dance and smile!

19 weeks

Bring it on 2014

2013 in review was a great year. Started out a little bumpy but quickly corrected itself.  After saying goodbye to dear friends and starting to rebuild in a new house I can say all is good. This year my husband gave up his dream job to be more available and to spend more time with Jackson and me. My baby turned one !  He is so big and amazing.  We welcomed in a new family member in June. My brother is so happy and for that I am glad.  My baby brother is all grown up. I love seeing them so happy and healthy.  lt means the world to me to be close to my parents. I will be 30 in 2014 but I still need my Mom and Dad. This year Lupus gave me a break about half way through.  And for that I am thankful.  Going into 2014 we still have Some residual issues like the leaky roof / wet chimney and less than optimal A/ C but those things will work themselves out. This year I say goodbye to my 20's and I am ready. I want to give back.I want to spend every spare minute remembering the good times and dreaming of the better ones to come.  This year I am going to focus on the good.

Walk to End Lupus Now April 2013

On 27 April 2013, my team will be walking in the Walk to End Lupus Now in Washington, DC.  This is my first walk to support Lupus Research.  The response has been fabulous and better than I expected.  I have 17 teammates and we are almost at our team goal of $500 total donations.  I am being sponsored by the Green Turtle @ Arundel Mills who donated $100 for team t-shirts.  They are also going to have a donation night at the restaurant for me where I get 10% of profits to donate to a charity of my choice.  It feels good to be involved and to give back in hopes of progress for Lupus patients.

Please visit my page and share with everyone you know!
Steph's Support Squad Homepage

Today's Blessing:  Finally having FIOS at the house!

Back in MD

Boy it has been a bumpy ride but we are finally all here.  Feeling better already.  I cant wait to get into our house and settle down and NEVER move again!  We cleaned and cleaned.  The pack out was easy, very nice people.  Probably robbed me blind but oh well. 

We miss our friends terribly!  Already planning some joint vacations to that helps. 

Jackson was so good when traveling.  He is having a hard time adjusting and isn't sleeping well but it will work itself out.  Now time to plan his baptism/bday party... send all ideas!

Our house got pushed back a week but I know it will work out.  I LOVE the house.  What really sold me was the water access a block away.  It is perfect for us.  Needs some work but that's how it is in MD. 

We are all healthy and together and that's what matters.

Today's Blessing:  Hopkins again on Friday for a brain scan or something to figure out these strokes...3 so far.  God Bless Doctors!

All Parents Have Hard Times

I am sure that even the world's best mother and father have those days when everything bugs them, everything seems hard and things just don't go their way.  I am by no means discounting the difficulty every parent has at some point BUT sometimes I feel like I have it harder.  Trust me, I know that sounds bad.

There are lots of good days.  Jackson wakes up between 530 and 7 (on the weekends) usually.  Sometimes I can get out of bed, pick him up, change him, feed him and then play without too much pain.  It is usually pain I can overcome. 

There are some bad days.  Days when I hear him crying and it takes me a while to get out of bed, then I have to take a hot bath or shower to loosen up my joints.  Then I can shuffle to his room and hoist him out of the crib.  He will cry and fuss the whole time I am changing him.  I struggle down the steps to feed him and play (which is him playing and me laying on the couch).

I know lots of parents have these days too and I pray theirs are spread out farther than mine are.  You probably are thinking...where is your husband?  Have him do some of this.  He does a lot.  He has to work so early sometimes he cannot help.  But his definately pulls his share at night.  Doesn't Lupus go into remission?  Do all Lupies have these problems with infants.  I should mention that even though Jackson is just under 10 months, he is HUGE!  He weighs almost 25 pounds and he is practically walking.  He is so big I have to take 2 trips into daycare, one with just him then one with his stuff.

Today's Blessing:  Spending time with my boys at our community snow day. 

Please Support My Team for the DC Lupus Walk

Steph's Support Squad Website

I have started a team for the DC Walk to End Lupus Now in the end of April.  My goal is to raise $500 for the team and to get 15 people to walk with me.  We are already on a great start!

I would appreciate ANY help possible.  Maybe you would like to walk with us, or maybe you can donate (anything would be great).  The donations are tax deductible.  Or maybe you can just share the link through social networking sites or email.  Even sharing awareness would help a lot.  I know times are tough so please do not put yourself out.  I am very grateful for all that everyone has done for me already.

Today's Blessing:  Getting admin leave from work to stay home for the packing company to come estimate boxes needed for our move.

Dedicated to My Brother

The other night I posted and I completely forgot to mention the awesome time we had last weekend when my younger brother and his girlfriend came to visit us.  It is hard for me to remember what I want to say when I write these but be assured my brother called me out on it the following day.  They were here for a long weekend to help out and visit Jackson. 

We went downtown San Antonio to the Riverwalk and Alamo.  I am so glad I was able to take Jackson before we move and we got a cute picture in front of the Alamo.  Of course, Jackson didn't seem to be interested in anything but watching the ducks and pigeons.  We drove out to the "Cowboy Capital" Bandera and watched horses on main street.  We went shopping and rented movies.  We went to yummy restaurants and watched the Ravens beat New England.  It was wonderful and I miss them being here to help out.

Special Visitors

Jackson's First Alamo Visit

Playing with Uncle Rob

They were also life savers because they flew my cat back to Maryland.  It is heart breaking to have to give up a pet not because you want to but need to for medical reasons.  I am so thankful he is in a place where he is loved and cared for.  Thanks Mom!

Today's Blessing:  I had a strawberry margarita and it was awesome!


Doc's Last Day in Texas



I'm Back, Finally

We just got back from our house hunting trip in Baltimore.  I would have sworn we would have found something during the first week but online house hunting is deceiving.  We looked at over 30 houses and most were crap!  They needed so much work that I just can't afford to do nor do I have to energy to do it.  Don't you know it came down to the wire with two houses we put offers in on and the very last day we finally came to an agreement and accepted one of the counters.  The inspection is on Monday, too bad we couldn't be there for that.  I pray everything goes well and we can settle on Feb 19th.  It was a very hard decision.  My hubby and I didn't agree on which house we wanted.  I knew we needed a rancher but he fell in love with the house with a huge yard and great neighborhood.  In the end, we did what was best and went with the rancher... no more steps for us.

Of course, things can't always go as planned.  When we arrived at the airport and got everything into the car it was acting weird.  Very jittery and then the engine light started flashing at us.  We had to call a friend for a ride and AAA to tow the car.  Thankfully, it was early enough the service center was open.  They are looking into it now.  Hope its not too expensive since we need all of our money for the new house! 

I think the stress and lack of sleep (Baby Jackson could not get into a routine and woke up every day between 1230-330) I was flaring the whole time!  My head was pounding and my joints hurt so bad.  I couldn't get used to sleeping on the hotel bed.  Thank GOD I am back in my bed. 

I had my first appointment with Dr. Petri at the Lupus Center at Johns Hopkins.  That outpatient center is massive.  The people were all so nice and on time!  I didn't learn much new but I did have 20 viles of blood taken, two were for research that I donated.  Apparently, 5 of the top research companies in the US rely solely on Dr. Petri's patients for blood samples to help Lupus so of course I gave some.  What is the difference between 18 and 20 viles anyway.  The results are trickling back in but nothing new or surprising yet.  My next appointment is in early April.  What a relief.

This week is going to be busy, as they all will be until we move to Maryland next month.  I have my pulmonary specialist, follow ups with the liver doctor and a vet appointment.  AND my brother is flying in on Thurs night.  Oh boy I hope Jackson gets back on a routine and that we all get some sleep.

Today's Blessing:  Being home

A Healthy Heart and Liver

Last Friday I went in for my cardiac cath.  I was nervous like I always am when I have to go in for a procedure and it was without reason.   The whole procedure took less than an hour.  It took longer to prep.  I was the first appointment but an ICU case had to kick me back by 20 minutes.  My doctor went in through the artery in my groin (awesome because part of the prep is shaving... yes, its embarrassing but I  was prepared for that).  They gave me some meds to calm me and it must have worked because the whole thing was over before I noticed.  I watched the screens and talked with the techs.  There were about 8 people in the room not including myself and the doctor so needlesstosay I have to add about 11 people to the list of who has seen me naked! 

The worst part of the whole thing is laying flat on your back for so long.  The funniest part was taking my walk around the recovery room with the nurse and seeing about 5 rooms with old men watching me.  I guess I was the only one to keep my curtain pulled... they acted like it was a social gathering.  So, yet again, I am the youngest person at my appointment. 

The doctor also ordered my Echo and it turns out I do have a small whole in my heart.  Apparently a small portion of the population has a whole that doesn't close up after birth.  She also said the pressure between my heart and lungs is 20 (normal is 15-25) so I am good.  Wish the first Echo didn't say it was 50!  So, I should be good to wait for the pulmonary specialist in a few weeks.  Still doesn't explain the pressure in my chest.

My liver doctor called yesterday too.  She says I have a fatty liver and all I can do is loose weight.  I will have to start eating better and working out I guess but maybe my liver hasn't caught up in the fact I just lost a ton of weight!  She said she was concerned about a possible autoimmune hep but that I do not have that.  Still doesn't explain why my stomach always feels full.

Today's Blessing:  My coworker who is watching my pup and our dear friend who is watching my cat while we go find a house!  Very blessed with great friends!

Early Merry Christmas

No more helmet for Jackson!  He had to wear this helmet for 11.5 weeks for 23 hours a day.  It started out hard but we got so used to it after a while.  For the next few days we need to watch him to make sure he doesn't bang his head on things that he normally would with the helmet.  I almost want to put it back on to protect him from his falls!  Great timing since he is crawling and climbing all over now. 

Surprising Best Day in a LONG Time

Yesterday at 0700 I showed up the Methodist Specialty and Transplant Hospital in San Antonio for my liver biopsy.  It was scary to be there for the procedure but the staff was great and it was a really nice hospital.  They took me back for blood work which was nothing, only 3 viles.  Then we were taken to the Cath Lab where I had to put on a gown and get my IV in.  My undies, bra and sweats were allowed to stay on, which was awesome but, don't worry, there were still boob shots by 3 new people.  I think I have forgotten the tally on that.  My blood pressure started out high but lowered substantially throughout the day.

After about an hour of sitting in the room, I was taken into the ultrasound room which turned into my operating room.  This is where the first 2 boob shots occurred.  I was laying on my back in the table completely covered except for a small area below my chest.  The ultrasound said this would be a good place to enter so a little "X" was marked.  When the doctor came in he made a comment about rather going through the side but he would just do it through the chest.  He numbed the skin and a bunch of layers beneath the skin.  Then he tried to jam the 8 inch needle into the liver but was blocked by cartilage.  He tried to push through but couldn't and that was not the most comfortable experience I have had.  SO, we had to ultrasound again on my right side where another "X" was placed on my ribs.  This is where the boob shot comes in because my gown needed to be lifted and my bra needed to come off that side because of where the band sits on my side.  I was pushed around so the machine would get a good view of my liver and then again when the doctor gave me some local anesthetics.  The side biopsy was much better than in the chest even though it stung more with the numbing agent at first.  I never saw the procedure since I closed my eyes but it was over relatively fast, would have been faster had they not try to go through my chest.  I was able to see the liver sample that was taken and it looked like a skinny red worm...skinnier than angel hair pasta... like a single piece of saffron.

After the procedure, I was bandaged up and taken back to recovery where my blood pressure was taken every 15 minutes as was my pulse.  I had to lay on my right side for an hour to start the clot in my liver so I didn't have any internal bleeding.  After the first hour, I was given a box lunch that doesn't really deserve any other mention...hospital food always sucks.  I was also given some meds for the pain that was in my side and shoulder.  The med was a combo of Tylenol and Vicodin.  It was awesome.  The pain left and all I was left with was a nice calm feeling.  A day that started with scared sad feelings turned out better than expected because for a few hours I could rest and not think about Lupus or why I was there in the first place. 

Recovery has been difficult emotionally because I cannot lift anything which means no lifting Jackson.  He is having a rough time because his first tooth is coming in.  Today I felt the sharp edges that have broken through his gums.  Needlesstosay, my husband is my trooper.  He has picked up so much slack and even though it has been rough, he never gives up.  I could not do this without him.  One more day of recovery to go.  It isn't too bad today.  I feel like I was punched in the ribs and my allergies are giving my lungs a rough time. 

Today's Blessings:  Friends who helped us with Jackson by making sure he safely made it to daycare so I could make it to the hospital so early.  Trusting someone else with your child is hard but they made it so easy.  I will always be grateful of them.

So Much to Be Thankful For

Happy Thanksgiving,

This year, more than most, I have so much to be thankful for.  I am glad to be alive!  I know it sounds dramatic but I really am.  For a while there I was pretty sure I might not be here.  I am so grateful to wake up every morning, even if it is to the sounds of Jackson crying for food.  I am so blessed with a wonderful baby boy.  He is perfect and not in the "I am the mom so he is the best" kind of way.  He really is the best.  I couldn't make it without my partner, my best friend, my husband.  He has made all of this worth it.  With my two boys everything is complete.

I am grateful for my loving supportive family.  My parents and siblings are strong for me when I cannot be strong for myself.  They are encouraging and hopeful when I need it most.  I cant wait to move home and be able to hug them and see their beautiful faces.  I am also excited for them to meet Jackson (he has had some visitors but many haven't had the chance to see him yet).  I miss my Pappy and I am said he never got to see Jackson.  I know he is watching over us now and he is so proud.

I am eternally grateful of my coworkers and friends.  Its those people who helped me not feel like a monster when I know I looked like one.  They treated me like normal and that's all I could ask for.  My friends who checked on me and comforted me. 

It hasn't all been bad this year.  As bad as it was, it was mostly great.  Jackson was born.  I got to spend my pregnancy sharing every experience with my great friend, Vanessa, who also was pregnant and due the same week!  I couldn't have asked for a better person to share that experience with.

It sounds kind of corny but I really hope you embrace all that you have to be thankful for and not just today but everyday.  No specific blessing for today since this whole post is about being thankful!