No News

in this case, is good news.   We were discharged on Saturday around noon, and have been getting used to life at home since then.  We have a heart monitor for Mara, and it is pretty easy to deal with, just not moving anywhere fast.  Her medication is on a every six hour schedule, and Mara herself is on a feed me whenever I want it schedule.  Which is her right as a newborn.   When she wakes up she thinks she should have had the boob in her mouth ten minutes ago, and that I am obviously neglecting her because that didn’t happen.  We are working on the whole breast feeding thing, as when you get fed a bottle and the food is right there, and eating is so easy to get to you barely have to suck, the breast seems like so much work.   But I am more than willing to fight this battle, it seems like an easy one.

D went back to his internship today, and luckily my mom is here.  The basic newborn care, with the medication and monitor to keep track of, are sometimes more than overwhelming on their own, then add crazy Ben into the picture…with a cold no less, and sheesh.  I will take all the help I can get.

Speaking of help, in addition to my Mom being here, we have lovely friends who have coordinated dinner for a couple of nights for us.  And it is brilliant.  It isn’t something that it is easy for me to ask for.  But help does really come in all shapes and sizes.  Whether we haven’t chatted in a while, or you know where I keep the iron in my house (believe me, it isn’t easy to find)  I appreciate all the thoughts, prayers, and just plain kindness that has surrounded us during this scary and emotional time.  Thanks to you all.

Tomorrow is a New Day

Well, today was a boring day - and that’s probably the most amazing thing that’s happened to us this far.  Mara’s Dr. (pretty much the only one that I actually like) informed us that a boring day today and an uneventful night would equate to us takin’ Miss Mara home at or around 10 a.m.  Hot Damn!!!!!  So, after I excitedly clicked my heels together, clapped and shouted - why, yes I am an 11 year-old ballerina princess, thank you for asking - I realized that I should contain myself.  Afterall, there are parents here who aren’t getting good news, and here I am all smiles and shitty grin.  I also need to calm down just in case the oncoming Doc changes the other doctors’ collective mind.  But, if everything else holds constant, we’re coming home with our gorgeous 11-day-old baby girl.

On another note, there is something I’d like to pull out the ol’ soapbox for.  We had been staying at a local bed and breakfast that houses parents of babies in the NICU when the Ronald McDonald House is full.  It was not only awesome to stay in a comfy bed in an antique house, the lady that owns and operates the place was very kind and understanding.  People like that compel me to live better in terms of karma.  We just moved into the Ronald McDonald House, and I am equally impressed.  I never really took the time to ask what the purpose of a Ronnie McD Hizzy was, but I think it’s a really worthwhile cause.  It turns out that there aren’t a coalition of Fry Guys and Hamburglers waiting inside to steal my kidneys so they can process them into tasty, all D. patties with lettuce,pickles onions and special sauce.  They house parents of sick children during hospital stays.  Volunteers make up a great majority of the workforce, and local purveyors of good karma donate food items, entertainment for kids and even toiletries.  So the next time you’re in the driveway waiting for your McNuggets, throw a few quarters into that trash-filled box with the sun-faded label for the house.

-D.

Clingy

Do you ever notice that when someone that you love is in the hospital we tend to hang on every single word that the doctor or nurse or specialist spouts off?  Man, I sure have noticed that about me lately.  We are currently waiting for the cardiologist to tell us what he/she knows about Mara’s episodes - which, I’m willing to bet, is going to be “not much.”  We’ve had some great nurses and doctors here at the NICU, so I don’t mean to sound ungrateful.  But for the love of all that is good and holy, when my child is being held over for observation per the cardiologists recommendation or request or whatever, I’d like to be able to talk to that person so that he/she can explain to me why we’re doing it.  Hell, for that matter, I would just like to know if everything is ok with my daughter’s heart.  So if you are a health professional of any kind, please please please don’t keep parents waiting all freaking day just to hear any news at all.  Not only is it cruel to let them worry for 12 hours, it’s really just not neccessary.  Send a telegram, a carrier pigeon, a morse-code-by-flashlight or even a potential time that you may eventually meet us at for all I care, just give me some news.

Alright, my rant is over with.  Here is the latest.  Mara’s bili level went down one full point to 11.1, so all of the photo-therapy lights have been removed.  The coolest thing ever is now possible: we can hold our daughter for as long as we want!  I can’t explain how awesome that really is.  I was able to dance with her to some music (cause you know that daddy gets the very first dance) and feed her a bottle without worrying about any time limits.

Sadly, we won’t be going home today.  Since the doctors put her on this Inderol to calm her heart rate in anticipation of SVT episodes, Mara’s blood pressure was getting a wee bit low.  Now, they’ve decreased her dosage and want to monitor her heart for 48 hours.  (let’s see, carry the 1 and … yup)  We should be home on Saturday, and I swear if one more medical practitioner requests more tests and a longer stay, I’m going to spiral into a fit of wind-pipe-crushing rage.  Ok, maybe not really, but I will have some very tough questions for these professionals.

- D.

Another Day, Another Test

Well hell.  Mara’s bili went up just a hair to 12.1, so the Dr. is going to keep her on the one last light.  It breaks my morale to know that we can’t hold our daughter, when we had been so looking forward to it.  The cardiologist is doing another echo cardiogram to check for structural deficiencies in Mara’s heart, but I’m betting he or she won’t find any.  So now we just have to wait once again, which blows huge goats.

- D.

11.4 on the Happy Scale

Miss Mara’s bilirubin level was down to 11.4 this morning, so the doctors took away one more of her photo-therapy bili-lights.  So she’s now down to just one light.  She’s eating well (actually gaining weight) and is alert when she’s awake.  Tomorrow, provided that we hit no more snags, the doctors will take away her last light and see if she can maintain an acceptable bili level without the aid of those bright lights.

We did have another episode - this time her heart rate was just over 300 BPM - but the doctor said that we will just have to give her a beta blocker to reduce the chances of it going that high again.  Hopefully, it becomes more of an annoyance than a worry, as the doctor said it would be.

Big brother Ben is missing both of his parents, which comes as somewhat of a surprise to me - usually he just wants his mommy.  But, I think it speaks volumes about our boy: the fact that in nearly 26 months he hasn’t ever just cried because he was sad.  Pissed off, grumpy, tired, hungry and extremely two?  Sure.  But he hasn’t ever cried for mommy and daddy before the other night.  Don’t worry, he has an extremely great grandma who is taking him fishing and taking really great care of him.  He may miss us, but he is in good hands.

We linked on the previous post to my family’s blood disease, spherocytosis.  Actually, mine is hereditary, which is why Mara has it.  No, don’t be mistaken.  Ben is not, in fact, the FedEx man’s estranged love child.  He just got lucky on the autosomal dominant disease wheel of fortune, which basically has a 50/50 chance of affecting the next generation of a person who currently has it.  In a nutshell, spherocytes are red blood cells with an odd shape that make up a small percentage of my regular red blood cells.  The blood filters through the spleen, where regular, doughnut shaped red blood cells conform to the spleen so they can pass through it.  Spherocytes, on the other hand, do not conform (damned independent radicals!) and therefore do not pass through the spleen (think Monty Python and the Holy Grail’s Black Knight: “None Shall Pass.”).  Since they don’t pass through, some are destroyed in the process and some die due to lack of oxygen.  The body then breaks these dead red blood cells down for processing, which creates a chemical called bilirubin that the liver then has to process out of the body through the stool.

Still with me?  Wow, that’s commendable.  In short, that’s spherocytosis as I understand it.  There isn’t a cure, but once the affected person’s immune system is deemed mature enough, the spleen is removed, which pretty much solves that particular problem.  If the hemotologist determines that Mara does have it, then we will need to take special care for her somewhat compromised immune system.  It should be awhile though; I didn’t have my spleen removed until I was 5, but each child is different.  We’ll also have to be watchful for signs of anemia (afterall, the spherocytes that die were red blood cells).

At this point, I think that we are just ready to be home with out whole family again.  Come what may, we can handle it.  I really want to thank each and every one of you for your support and prayers.  I think that someone, somewhere was listening to them.

- D.

Hazy Days

I thought that I knew what “tired” was when I was pulling 24 hour shifts of duty in Iraq. Then we had Ben. Wow, was I mistaken. Now, we have Miss Mara, and each day seems to melt into the next. I honestly haven’t known what day of the week it’s been since Tuesday. I recently found out that today is Sunday, and I still find myself in disbelief. - D.

Bad: Only getting to hold my baby once a day. Not being able to breast feed, and being attached to the pump every three hours. Thinking of my little girl being without her mommy or daddy when we aren’t there. Missing both of my kids all night long (Ben is still with my parents). Being more scared than I have ever been when Mara decides to have an episode. Not knowing when we will get to take our little girl home. Worrying what this all means in the long run.

Good: Her levels keep going down. She is eating well and is back up to her birth weight. I get to hold her. I spent the day with my son. Watching my pretty girl when she is awake. Knowing how strong she is. Feeling so lucky that we are in the NICU for the reasons we are, and not the worse ones of the shell shocked parents around us. Knowing there is a long run. - J.

Update

Mara is doing extremely well - afterall, she is a fighter just like her mommy. Her billirubin is on a downward trend, which is a good sign of progress (provided that it stays on that trend).  The doctors still can’t give us any idea of when we may be able to take her home, rather, they just tell us that “all we can do is wait and see.”  As many of you who are parents already know, that really sucks.  We really want her to get better, regardless of how long it takes.  But feeling helpless when it comes to your child and then not being able to hold your newborn child on top of that is pretty much the definition of suck.

Ben is still with grandma and grandpa, and is apparently having a great time about it.  This is the longest that he’s been away from either of us, and he’s taking it better than we are.  We miss him, but get to see him tomorrow.  So there is a silver lining in the clouds, afterall.

It Ain’t Easy

Being a parent, that is. We’re now in Topeka, waiting for Mara to come home with us. She had a high billirubin level, and was transferred to a Neonatal ICU for a procedure called an exchange transfusion. She made it through the procedure just fine and is doing well, but we are now on our way to feed her for the first time since yesterday morning. We don’t know all of the details as of yet, and will post more once we do. Hopefully, we’ll have wee Mara home before one week has passed, but that’s not up to us to determine.

Sincerely,
D.

Please Welcome Mara Cecilia!

Born on May 20th at 3:54 p.m., she weighs 6lbs 13 ozs and is 20 inches long. She came into this world with a beautiful full head of black hair and a powerful set of lungs. The name Mara is Gaelic for thoughtful believer, which is derived from Mare (pronounced mar-A) which is what the craters on the moon were once called - since they were then thought to be seas. Cecilia comes from D’s maternal grandmother’s name.

It's been a rough day!

Our growing family

Ben Before Baby