Wide Awake

 

 

Please continue to pray for our little boy.  He's doing well, but I do not believe he will really be able to breathe comfortably and slowly and entirely on his own until the PDA in his heart closes.  The doctors still feel confident that it will close on its own, but we do not know how long it will take.

We still pray everyday that he will be able to take a bottle, but more often than not, he is breathing too fast to even try (his breathing rate needs to be slower than 70).  When he does get a bottle, though, he does very well, and seems to enjoy it. 

Thank you for your prayers and have a wonderfully blessed New Year!

Another First

I'm so very proud!

My little man had another big first.

You see, the only thing left now is learning to eat.  On Friday, the doctors had ordered that he be bottle-fed twice a day, but not until his breathing rate slowed down.  He has been breathing very fast, so they wanted it under 70 breaths per minute.  Over the past couple of days, he hadn't seemed to be slowing down at all.  Finally, he slowed down enough that the nurse said we could try, since my husband and I were there to feed him ourselves.

Finally, he took a bottle for the very first time.

I have been very nervous about beginning bottle-feedings, because everyone has been preparing me for the worst.  Learning to suck, swallow and breathe, all at the same time, is a HUGE challenge for preemies.  They often have trouble breathing, drop their oxygen saturation, choke on the milk, etc.  It is also very common for babies to get worn out, because it is a lot of work sucking, swallowing, and breathing, all at the same time.

But I have to say, I am so proud.  My little boy did SO GREAT for his very first time!  He normally gets 50 ml of milk every 3 hours, so we started with the bottle first, and he drank almost half!  Even the nurse was impressed, because his heart did not brady, nor did his oxygen level drop.  It was still a lot for him to do, and he would chug a few times, then stop and breathe, then chug some more, until it was a little much and we had to stop.  But still, that was amazing!  I'm hoping he will continue to eat well, so that they can gradually increase his bottle-feedings until he is eating a complete bottle every 3 hours, and no longer needs a feeding tube.  Slowly but surely, we are getting there!!

 

 

Movin' On Up!

Probably the best Christmas present we received this year was that our little boy was moved from his bed in the acute side of the intensive care unit to the progressive care unit.  He is completely off the CPAP, and is now in progressive care, where the focus is more on preparing the baby to go home.  It is still impossible to know when he will be ready to go home, but we're certainly getting closer!

He used to be here, in bed number 4:

But now he's here, in progressive care:

The atmosphere in progressive is so different.  It is peaceful and quiet, and almost all of the babies are in cribs, rather than isolettes.  There are no ventilators, no transport teams rushing in newborns.  Instead, there are swings and bouncy seats and mobiles.  We were so excited that he made this big step, and glad we were able to spend some time with him on Christmas.  The stocking in the picture was made by hospital volunteers for all of the babies, and was filled with all kinds of goodies!  And I couldn't resist putting a Santa hat on him, since it was his first Christmas and all.

He is doing great, but did have to go back on oxygen again after a few days.  It is simply a nasal cannula now, however, and they have already turned the pressure down some.  I think this is going to be a good week for my sweet baby!

Happy Birthday!!

Happy Birthday Sweet, Beautiful Baby Girl!!

Today, you are one year old.  One year ago, at 8:00 in the morning, your daddy and I received the most precious Christmas gift we could have ever wanted.  You were a petite 6 pounds, 3 ounces, and alert and curious the moment you were born.

Sometimes I can't even believe how much I love you.  And that love only grows with each passing day.

I love your smile.

 

I love the way your face scrunches up when you laugh.

I love the way you cross your feet in your high chair or car seat.

I love the way you can always cheer me up.

I love how ticklish you are.

And I love how you light up a room the moment you enter.

You are such a sweet girl, and will make a fabulous big sister!

It's so hard to believe that exactly one year ago, we thought we would be celebrating our last Christmas without children, only to have my daughter surprise us in time for Christmas.  How strange, looking back now, that we thought three weeks was early.  Who knew that on my daughter's first birthday, she would have a six week old brother who was twelve weeks early.  We sure didn't!!  But how exciting to be blessed with two beautiful children.  I still can't believe my daughter is already a year old.  Feels like just yesterday we were celebrating her first Christmas.

We love you, baby girl.

One thing After Another...

Sooo...

I did not go to see my son at the hospital today.

And...

I will not be going to see him and hold him tomorrow.

Why, you ask?

Well, because I have, somehow, from somewhere, caught a very nasty, "rip roaring" (as my doctor so kindly put it), case of pink eye.  Between me and my daughter, this makes doctor trip number three in the past two weeks.

Yup, pink eye.  That nasty, gunky, insanely contagious infection that makes my eye so red, you would think I haven't slept in 3 days.  But back to the insanely contagious part.  Aside from being incredibly uncomfortable and irritating, I cannot risk infecting my son, and therefore, cannot go to the hospital until I am no longer contagious.  As frustrating as that is, I am thankful that I should be cleared up and infection-free by Christmas Day.  I don't think I could handle not being able to be with my little man on his very first Christmas!

PLUS, tomorrow, my daughter, my first-born, apple of my eye, will be exactly ONE YEAR OLD.  So, although I will be stuck at home, unable to see my baby boy's sweet face, I will be able to spend the ENTIRE, uninterrupted day, with my beautiful daughter.  Not too bad of a trade off, huh? 

...3...4...5!

At birth, he was a teeny tiny 2 pounds, 15 ounces, but soon lost weight and was even smaller.  So we were thrilled when he started gaining and made it back up to 3 pounds.  Then, we were ecstatic when he reached 4 pounds.  And now, at almost six weeks old, my little man is a whopping 5 pounds!

I can't believe how big he is getting!  But I know what you're thinking.  "Oh, five pounds, he must be ready to go home now!"  Well, I wish that was how it worked.  But, alas, he is still pretty far from being ready to leave the hospital. 

 He is definitely making progress, though.  After another looooooooong week of weaning him off of the CPAP, he is completely off it again.  So far, he is doing great.  I'm trying to remember that things can change in a second (and have a hundred times so far), but this time he is off the CPAP for good.  He is big enough and old enough now that if he has any more spells of apnea, and needs oxygen, they will give him a high flow nasal cannula.  This is much smaller (so it won't be as hard on his poor nose), and simply provides oxygen.

 

I'm so proud of how well he's doing, and how strong he is.  Some days are very hard, and I hate to leave him after visiting and cuddling, but I know he will be home before we know it.  If he does well, and no longer needs oxygen, the doctors will try to get him back on a regular feeding schedule, and then I can start teaching him how to eat without the feeding tube.

And then, we'll be closer to bringing him home.

Beggars

My daughter likes food.  I mean, really likes food.  Therefore, whenever anyone else is eating, she wants some too.  Doesn't really matter what it is, so long as you share with her.  And tonight, preparing chicken for enchiladas, was no different.  Except that our cat wanted in on the action as well.

"What? There's food? I want some!"

"Daddy, please share some chicken with me..."

"Chicken!?  I'll have some of that!"

"Thank you!"

Ear Infections, Calculus, and ROP

It has been a busy couple of days.  My daughter had been throwing up, but wasn't acting sick, so we thought it was something she ate or something.  Then yesterday she slept all morning, and when she finally got up, was not acting like her usual, chipper self.  She just stared into space and looked like she was either ready to go back to sleep, or about to throw up again. 

So we went to the doctor.  And found out that the culprit was a nasty ear infection. 

 

It's so sad to see her sick.  She's not herself at all.  But I have to say, although she has been a little more tired and fussy than usual, she has not been nearly as cranky as I would expect from an infant with an ear infection.  And she is still sleeping well, and for that, we are very thankful!  So, she's been chugging antibiotics (and by chugging, I mean taking the appropriate dosage, as prescribed by the doctor), and will hopefully be all better soon!

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When I haven't been visiting one baby at the hospital, or taking care of a sick baby at home, I have been doing Calculus.  Yes, I do enjoy math, and have a math degree, but no, I do not normally work out calculus problems in my spare time.  I have a friend who is having a very tough senior year of high school (due to health issues), and has missed pretty much the entire semester of calculus.  Now, I don't know about you, but as much as I like math, I cannot teach it to myself!  So, in an effort to try and help her learn/understand at least some of it, we worked on some problems together yesterday.  

Well, this was great, but I have not done this stuff since my junior year of high school.  So, needless to say, I needed a little refresher!  I kept her book for the night, and offered to read through the chapter and work out some problems so I would actually know what I was talking about when I explained it to her.  That's just the teacher in me, I guess.  

 

It was a lot of work, but I'm not gonna lie, I really enjoyed it.  I plugged my headphones into the computer, watched episodes of Glee, worked out problems, and drank cherry coke.  It has been a long time since I have worked out math that challenging, and I forgot how much I love figuring it out, and getting problems right!  I have such a sense of accomplishment when my answer matches the back of the book.  Yes, I am a nerd.  But, oh well.  It was a great workout for my brain!  HAHA!

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My little man is doing well.  It has been very slow going this week, but it seems to be working well for him.  We started over, taking his CPAP off for only an hour at a time, three times a day.  Then his doctor increased that to two hours at a time, three times a day.  Then four.  Then, today, he was put on six hour sprints, meaning six hours off, then six hours on, six hours off, etc.  He is doing great with this so far!  Hopefully, when it comes off completely this time, it will be off for good.  

 

We also (finally) got the report from the eye doctor.  As usual, it could be better, but is not the worst.  He has a grade one retinopathy of prematurity (ROP).  This is something that only preemies develop, and grade one is the least severe (four being the most severe).  Basically, he is at an increased risk for needing glasses, so long as his ROP does not get worse.  But my eyes are terrible, I mean, I'm practically legally blind.  So I think it's safe to assume that he was at risk for needing glasses before he was born.  Then, he was born premature.  That increases his risk of needing glasses.  Now, he has a grade one retinopathy, so his risk is increased again.  

 

So he's at risk times three, and it will truly be a miracle if this kid has no eye problems, and does not need glasses.  Right now, I am just praying that glasses are the only consequence of all this, and nothing more serious.  I would hate for him to need eye surgery, or have more severe complications, other than simply needing glasses.  

 

Other than that, he is still growing!!  He is now weighing in at 4 pounds, 13 ounces, and filling out his preemie clothes much better.  Can't wait to see how big he is when he finally comes home!       

Cute

 

 

Eventually

even·tu·al·ly

adverb

: at an unspecified later time : in the end

I hate that word.  I guess because I am so very impatient.  But I want to know what's going to happen now, not eventually.  I'm trying very hard to take things day by day, but not knowing what's going to happen with the holes in his heart, and with his lungs, makes it so difficult.  I really hate that word, eventually.  In fact, I'm so tired of hearing that word, I could scream.

When will his PDA close?  Eventually.

When will he be able to breathe on his own?  Eventually.

When will he be able to breastfeed?  Eventually. 

When will he be off the CPAP for good?  Eventually.

When will he be able to be on a regular feeding schedule?  Eventually.

When will the hemorrhage in his head clear up?  Eventually.

When will we know if his heart will need surgery?  Eventually.

When will he be able to breathe without any alarms going off?  Eventually.

When, oh when, will I be able to bring him HOME?  Eventually.

And just when exactly is eventually?  Eventually. 

Two Steps Forward, One Step Back

That is what it feels like.  I know that every single day my little boy is getting stronger and more mature, so we are never actually moving backward, but today, that is what it feels like. 

Last week was a roller coaster as the doctors tried to take him off the CPAP, but when he struggled, put him back on, then tried to move more slowly, until they were able to take him off again on Friday.  After so much back and forth, I tried to remind myself that it might not be off for good, if it still seemed that he was still not quite ready.  But after being completely off for a couple days, and having the equipment taken away, I felt sure that he was ready and able to breathe without it.  The doctors had then decided that they would try to get him back on a regular feeding schedule today, so I was sure that all would go as planned, and I could start teaching him how to eat later this week.  

But of course, plans change.  Especially for a small, premature baby, who is still learning how to live outside of the womb.  Early this morning, he had a spell of apnea and oxygen desaturation, so his doctor decided he had been taken off too soon, and put the CPAP back on. 

So, we are going to start over, moving very very slowly, only taking it off for an hour at a time.  Which means that no changes will be made to his feeding schedule yet.  Which also means that he is not ready to start learning to eat yet.  Which also means that he will still be here for a while.  Sigh.

Right now, we will just continue to take things one day at a time.  Maybe just a couple more days on the CPAP will be all that he needs.  He is still pretty young to be off and completely breathing on his own, so more time with just a little extra support will probably be better for him in the long run, anyway.  Thanks for your continued prayers!

Great Food, Great Friends, Great Fun!

Last night, some truly wonderful friends, who are such a blessing, threw us and our son the most beautiful baby shower.  The Christmas decorations looked like a picture in a magazine, the food was fantastic, but the company was even better.  It was such a treat to get showered with so many thoughtful and generous gifts for our new, sweet little addition.

It was a great time of fellowship and we were so appreciative of everything that was done for us, and given to us.  

 

We had such a fantastic time, I did not want it to end!

And of course, our daughter had a great time, and got a little spoiled herself with all the attention.

I have to be honest, though.  When we scheduled this shower, quite some time ago, I never imagined my son would already be a month old.  I thought I would be big and pregnant!  There was one definite perk, however, to his having been born in time for the shower.  Everyone now knows his name (which is typically kept a surprise), so we received a lot of very special personalized gifts!  Now I especially can't wait for my strong little man to come home where he belongs!

One Month

 

 

 

 

 

I can't get enough of that face.