Archive for the ‘X-Linked PH’ Category

ImageA picture of G. Just because.

I’m finally to the point where I’m not feeling absolutely miserable from the mastitis, so I went to the hospital today to see G. When I walked in, they were doing an Echo on her. Naturally I was kind of curious, because no one had mentioned anything to me about one being done. Her nurse told me it was just to check to see if the hole in her heart (which was either an ASD or a PFO) had closed. So I just shrugged it off. Literally didn’t think anything about it.

Just did my brief-visit business: 1) Snap a pic of G. 2.) Do a short video. 3.) Give the nurse my milk 4.) Catch up on any changes that might have been made 5.) Give G a kiss and/or a cuddle.

Her CO2 levels have decreased a small bit, by the way.

Anyways, so I trade off kids in the hallway (the grandparents had L – and they were heading in to visit G), and we make a brief detour by the pharmacy to try for the umpteenth time to get L’s diuretic. Still no luck. Grrr. She’s not yet completely out, so I place a call to cardiology requesting the refill even though the pharmacy was supposed to have done it two days ago.

Call placed, we make a stop by dairy queen (side note: My 4 year old is totally feeling my boobs up right now. She’s way too fascinated with this whole pumping thing.) and then go home to hang out. I’m in the middle of a pumping session when the phone rings and its the hospital.

Ah hell. What now?

Its a cardiologist. He says that he reviewed the echo done today, and G does have a moderate-sized ASD, but that’s a good thing at the moment, because its keeping the pressures in her heart down.

If you’ve read the posts about L, you know what this means.

I now officially have two kids with Pulmonary Hypertension.


The PH speciaist who follows L will be checking G out next week.

Oh, and right in the middle of writing this, I got a call from the hospital. They’re placing G back on the ventilator to bring her CO2 levels down some more and hopefully help her heart.

I don’t even know where to begin on how much I’m ready to scream right now.


2 steps back..

Posted: June 6, 2013 in Other Health Stuff, X-Linked PH

George is on Si-pap or Bi-pap..whatever its called.. its the step up from CPAP.

Her CO2 levels were near 90 again.

I’m expecting a call any moment saying she’s going back on life support.

This. Freaking. Sucks.

It was a good day for G. She was quiet and alert for a good bit. So I tried something. When I got a result, I tried it again. And again. And again. And I kept getting the SAME result EVERY time.

So then I called the nurse in. I said “Do you want to see something cool?” She said yes.

So I did it again. And again. And again. And I got the SAME result EVERY time.

Then the physical therapist came in. I said “Do you want to see something cool?” She said yes.

So I did it again. And again. And again. And I got the SAME result EVERY time.

The nurse practically squealed and excitedly stroked G’s hair and cooed over her. The therapists eyes got as big as silver dollars and she just said  “THAT. IS. AWESOME!!”

Wanna know what I did? Bet ya do.

I took this little yellow lion that has chewies for paws (thanks Erica!), and I waved it in front of G’s face. I didn’t touch her with it. I didn’t make any sound as I was doing it. I just waved it slowly in front of her partially open eyes.

And every time I did it, G would open her eyes wide. Every. single. time. I would slowly wave the lion, or bring it in towards her face, and she would open her eyes real wide, like “What IS that?”

I tried it with other toys, and didn’t quite get the same result. One little lady bug toy would get G to open her eyes wider for a second, but that was it. The lion, however, got full on “Oh My God! WTF?!” eyes.

The nurse that saw G’s reaction? She’s the one who has always noted G as ‘unresponsive to environment’. 

The therapist that saw G’s reaction? She’s the one who told my boyfriend she thought that the idea that G could see was probably just wishful thinking.

So, anyways, the therapist starts going through the motions with G… and at one point G arches back, with her head in my direction. I immediately leaned in real close to her…and we stared at each other. For at least 6 seconds. We stared at each other. The therapist just stopped touching her while this was going on. After it was over, she told me “I think she really saw you. At least briefly. She stayed very still in that position longer than she should have if she wasn’t seeing anything.”

And then they continued therapy.

So… there’s that.

We talked about now that G’s doing better, what should we be doing with her? Obviously cuddles are of the utmost importance, but… The way she put it was this “If you’re here for 10 minutes, then spend it all cuddling her. But if you’re here for 15… do 10 minutes of cuddles, 5 minutes of playful interaction.”

By the way, she said G had been pulling one over on her. That when she’d seen her at first it was post G-tube, and then with the Rhinovirus.. G doesn’t flipflop between hypotonic and hypertonic. G is hypotonic. That is her primary muscle problem. Except when she’s angry. Then she’s hypertonic.

G-steps, man!

This was G on 5/31. As you can see, she didn’t really look that great. Swollen and stuff.Image

But, what a difference a day makes. When we visited G this evening, she looked a lot, LOT better, as you can see from the following picture =)Image

Its a G-step. A super-small, barely visible step in the right direction. I’m kinda getting used to G-steps. I won’t call them baby steps, because normal babies make bigger steps than G does.

One of my friends asked if she could sort of officially follow G’s journey and how we deal with it. I said yes, of course, because I want people to know about G. Not for pity or anything like that, but because this situation is very difficult, and I know that I’m not the only one out there going through it. I also know that if there’s a chance I can reach someone who needs to hear that they are not alone, that this can be handled… I need to do it.

I’m the type to educate. Not to sit back and twiddle my thumbs while my world comes crashing down around my ears.

I went to Target today, and got a few weird looks because I was standing in the baby aisle with my eyes closed, feeling up the toys. Because of G’s potential (and likely) deafblindness, I wanted to experience toys the way G would, so I could make sure to get something that would be good for her.

Most baby toys feel very, very boring for the record.

After I got home, I went to some facebook friends. This is what I posted…

Your mission…should you choose to accept it… The next time you go to a store that has baby toys, or even things that are baby safe but not thought of as baby toys… close your ears, your eyes, and feel it up. If it feels interesting, and its not super expensive, take a picture of it with your phone, and message me here on FB with it 

Unfortunately this message will not self-destruct in 10 seconds…

(I decided to suck it up and have some fun with picking out toys for G that are interesting for those who can’t hear or see very well, but I need some help!)

My friends took up the challenge, albeit in an unexpected way. We had one helluva brainstorming session! We ultimately decided that the most important toy component for while G was in the hospital was…

The ziploc baggie.

Not what you were expecting? Well, it definitely wasn’t what I was expecting. But this is how it works…Did you ever do the Halloween thing where you closed your eyes and someone stuck your hand into bowls filled with different stuff? Like ‘eyeballs’ that were peeled grapes? Exactly that! Except we want to keep it not so messy, so we put the stuff in ziploc baggies and put her hands on it. She’s only 7 weeks old, so we can’t expect a lot of interaction, obviously.

I’m planning on baggies filled with ice cubes, warm water, rice, beans, wet spaghetti noodles, beads, and shaving cream, just to name a few things.

A shoutout to The Socially Inappropriate Mom. I googled toys for deafblind children, and her blog was one of the first things that popped up. There is practically no first-hand experience out there, and when you’re going through something like this…firsthand experience is so very, very wanted. I highly recommend taking a look at her blog.

Now, that led me to … Lilliworks. They make toys for deafblind kids and other severely disabled children. Most of that stuff it looks like I can make at home, so I doubt I’ll be ordering much from them, but the ideas were very, very handy. We will be making George a Little Room.

For more information you have to be willing to buy books and dig through medical sites and things like that. Lets face it, who has the time or money for that? So its suck it up, princess, and use what your maker gave ya!


G is in her new digs. She got moved from one unit to another because of hospital renovations. The new isolation unit is much bigger and nicer. Even has a couch for parents to chill on!

She’s still on CPAP. They put her on a nose mask instead of the traditional prongsy-thing because the regular doodad (I wish I knew the name for it) wasn’t staying on her little snub nose and maintaining pressures like it should.

The new nose-mask makes her look like a little piggie.

She’s due to get her 2 month immunizations next week, so they gave me the stuff to look over. I think I’m going to request we space them out. Give her like a week in between each one. G has proven she’s super sensitive to things, so why risk a reaction by giving her a bunch of vaccines at once.

I asked when they last did an x-ray, and the nurse wasn’t sure, so she pulled it up and I read over her shoulder. We both got a shock when we read at the bottom of the report “Persistant Cardiomegaly.”

…Uh, excuse me? They’ve never mentioned that before. So we proceeded to go back through her x-rays. Not one place has cardiomegaly mentioned. We know G has a potential ASD, but that’s it.

So needless to say the nurse will be bringing this up with the doctor. Not that we think G’s heart is enlarged, but that’s not a nice thing to have in the reports if its not true.

Her CO2 level is back up to 74 BUT her PH level is fine, so they’re not too concerned about acidosis.

The x-ray did show minimal improvement on her lungs, by the way. I’ll take that over no improvement, or worsening, any day!

Brief post for now.

G is back on CPAP.

They had to keep going up on her oxygen and she sounded pretty rough, so they ordered an x-ray. X-ray revealed that her lungs were showing further collapse, and it was also obviously that she was very congested up top. So, she’s back on CPAP.

At least its not the vent, right?

At least they still think she should improve after she fights off the Rhinovirus, right?

She was almost completely unresponsive today, until we touched her and got her good and ticked off. Normally she just looks like she was sleeping. I think going back on the CPAP was a good thing – something she needed – because she looked almost lifeless. Her little lips were so pale.

She still has no voice from the ventilator.

Getting hard to maintain any sort of positive outlook.

On a semi-amusing note… My coworker had apparently sworn to herself mentally that she was not going to call G by her middle name. (What G is shortened for.) She was going to call her by her first name. She walks in, over to the crib, and the first thing she says is.. “Hi, G.”  Bwuahahaha! G’s full middle name is basically her official name in the NICU. No one even bothers trying to call her by her first name anymore. I win I win I win I win! Haha!

I knew that name would stick! I knew it!

Last night I was venting my frustrations to K about G’s illness and my general distaste of pumping. I said “I wish I just felt like the breastmilk was actually helping her, you know?”

He had the perfect response. He immediately cracked “It IS helping her. Have you seen her cheeks? She looks like a chipmunk!”

We know she’s retaining water now, but regardless of that she does have some serious chubby cheeks.

Please let one thing go right. Just one thing. Let just one of her problems resolve itself. Just one thing. I just need something to hang on to. Something to work for. Something to hope for.

Because right now hope is circling the drain. Just like I am.

The good news is G is still off the vent.  However, she’s at 4 litres of oxygen, at 60 percent. (Room air is about 21 percent for reference.) The doctor did say this morning that as long as her blood gas (the CO2 level specifically) was good, they would not reintubate her. So, here’s hoping it stays good.

She’s not tolerating weaning down at all. It concerns me. I also noticed on her most recent growth chart that her head circumference had fallen down on the charts. Now that can be explained by different people doing the measuring, but still… If I’m recalling correctly, microcephaly can have an association with PVNH. Microcephaly is generally linked with severe developmental delays and other problems to boot. So, please let the person measuring G’s head simply have been an idiot who can’t do a head circumference correctly.

G is in the 90th percentile for length! A whopping 23.3 inches.  She’s about 40th percentile for weight, coming in at a grand 9 lbs, 12 oz.  She looks chunky!! It kind of doesn’t make sense that she seems to be struggling so hard, but she’s gaining weight like a champ. Then again, they are giving her 80ml (or 2 and 2/3rds of an ounce) every 3 hours. But that does mean a couple things.

1.)    G can’t be too allergic to soy/dairy if she’s gaining weight like this.

2.)    My milk is doing a fantastic job of providing the calories she needs.

3.)    I should have told the doctors who told me I couldn’t breastfeed L to suck it!

She’s still receiving sodium chloride to assist with raising the sodium level in her blood. I don’t know how long that’s going to continue for.

Oh, and she’s taking caffeine. This irritates me. You know why this irritates me? Because I brought up using caffeine on her WEEKS ago, and was told no. That they hardly ever do that. That there’s no way they’d send a baby home on it. Uh… lo and behold, they’ve got her on caffeine, and have already said she’d probably come home on it.

I feel like its another case of “Lets not take the mom seriously. After all, she doesn’t know what she’s talking about. She doesn’t have a medical degree.” As near as I can remember, I have called almost every bloody thing at least a day before they did! The only things I didn’t have a clue about where her co2 and sodium levels, along with the brain malformation.



Anyways, you know what one of the most horrible feelings is? When you’re trying to pump, but you haven’t had time to grab anything to drink, so you know you’re dehydrated.  Then you’re trapped in your daughter’s room, which is in isolation, so its not like you can just jet out to get something to drink. Plus you’re waiting on the doctors to show up for rounds, so it’s a matter of how long you actually have before you have to do a frantic disconnect-and-tuck so you can be at the doorway listening to them. Half the time I get this look like “ didn’t have to be right here. You could have listened from over there..” Yes, I could have, but no, I won’t. My kid. I have a role in her treatment. Flat-out. I wanna know everything, even if its amazingly hard to handle sometimes.

And it is. I wish I could just blindly place faith in the doctors, but I can’t. I won’t. I refuse to be the little sheeple person who sits back and doesn’t even bother to educate herself to prepare for things. When you have an ill child, it is your responsibility to learn everything you can. To participate in any way you can.

You really are your child’s best advocate. You are the only one who really, really knows your child. And maybe its wrong of me, but I’m going to even say that in 95 percent of cases, the mother is the best advocate, because I think we notice more than the fathers do. Now there’s always crappy moms and stuff like that, so it doesn’t always apply, obviously.

Today is not a good day. Today is a ‘I feel like this is hopeless’ day. I honestly wonder if I’m ever going to bring my baby home. And if I do…am I just bringing her home to die? You wouldn’t believe how much that tears me up just to think about it.

Oh… yeah… I’m going to do a separate post about Religion. Its not going to be nice, so if you are a bible-thumper with a righteous indignation fire easily burned under your rear… don’t read it.