Belle Update: Mar 16

Baby Belle looked quite well. 

Last night she weighted 880 grams (they weigh her only once each evening around 8pm). Getting closer and closer to 2 pounds.

She looks a bit pale today but only because they needed to take some blood. She's had her heel pricked a bunch of times this week already. She may need another blood transfusion soon.

Yesterday they started to administer a drug called 'aldactazide' for her edema. It looks like it started to work since she was less puffy this morning. 

The more I talk to the doctors and nurses, the more I begin to see the big picture. They want to give her time to grow a little bit more, so that when the time is right they can go ahead with PDA ligation. Surgery is something that the doctors usually want to avoid, especially since she's so small, but in this case it might be our only option. Blood keeps flowing into her lungs, giving her most of her problems. 

Right now the focus is keeping her stable and increasing her feeds very slowly (1ml per 24 hours). So far she's been tolerating her feeds very well. 

Arabella received a lot of attention today. She seems to be growing in popularity among the staff. We even get visits from random nurses now. Everyone absolutely loves her 😍😍😍 and Belle definitely loves the attention.

Do your thing, babygirl. 

Here she is, doing a little 'self-soothing'. She managed to put her thumb into her mouth even through all of those bandages. Good for you, Arabella. 

That's the first time I've seen her suck her thumb, I'm pretty sure 😄

Belle Update: Mar 15

Arabella seems to be doing okay today. 

She's stable, but still very swollen. There's fluid building up in her lungs which may require more and more air pressure as she continues to grow. 

We need to buy more time (somehow) in order for this PDA to close. 

Her PDA is causing her edema. There's fluid build-up in places all over her body. Some of this extra fluid needs to be removed, so doctors are trying to figure out the next steps.

She's already gotten a huge dose of a diuretic called Lasix. That one is quite strong. In addition to Lasix, there are less harmful medications that might be able to help. Unfortunately, the less harmful meds just don't seem to work as well, if at all (according to doctors). There was also talk about possibly giving her inhaled nitric oxide (iNO). We'll have to see. 

We really need this PDA to close.

All of Belle's health details are discussed during the doctors' rounds, as a team of specialists go around the NICU, room by room, one baby at a time. 

Kiera and I are consistently present at the morning rounds. The night rounds happen after midnight usually, so that's too late for us. But it's a perfect chance to ask any questions, get the full update, and discuss the plan going forward. 

I usually write down a few terms I hear them throwing out, and then I research them later if needed. The nurses are also fantastic at explaining anything you might not understand. I'm amazed at how much knowledge they have in all sorts of areas. 

In the last few days Kiera and I have each held Arabella. Sometimes even twice per day. It's been wonderful, and it's probably the best way for us to all relax.

"Everything is going to be alright," we tell her. 

Video: Observing the world around her

In this clip she was being very observant and alert. She had just gotten her diaper changed. Her little eyes (and face) are still so puffy, but it should reduce in time. 

Belle Update: Mar 14

Hands up for Arabella! 

She wanted to show off her eyes today. The mask makes her eyes look very swollen lately. Her stomach is full of air (so that looks swollen too) but it's nothing to worry about. Completely normal and typical. Now we can see the wrinkles on her skin again, which is a good sign that the extra water is finally out of her system.

Belle is weighing in at 800 grams. Her breast milk feeds are increasing to 7ml tonight. That's decent progress.

The staff here have told us that Arabella is somewhat of a mystery. Her PDA is massive and it has remained that way despite all of the drugs and methods that they have tried. They are checking up on her heart (artery) daily using a stethoscope. And everyday it's loud. It's really loud. 

After this round of Tylenol they will leave her alone for a bit (as long as she avoids the ventilator and continues to breathe on her own). We can only hope. 

So many drugs in such a short span of time. It's insane. 

We had a long discussion with the doctor today about the overdosing that occurred this past weekend. The head nurse of 'quality and risk' gave us some knowledge into the situation as well. There will be a full review next week but we definitely have a sense of what happened. It was simple human error. I'll spare everyone the boring details. 

Thank goodness it was only a diuretic drug and not something stronger. What if the nurse had given Belle 10x of something else?

In the end, Kiera and I decided not to restrict that specific nurse from caring for Belle. For this week, however, we asked for space from her so that we can get over everything. 

It's been such a stressful last few days and the worst part is that we won't really know how those drugs affected Arabella's hearing for another few months. 

We can only pray at this point, so we ask God for guidance and assistance. 

Please continue to keep little Arabella in your thoughts and prayers - that she may leap over all of the hurdles that are placed in her path.

Thank you 💗

Video: Arabella settling down

This video was not meant to be dramatic (with the music) but there was talking and chatter in the background and I wanted to mask it 😄😄😄

Belle Update: Mar 13

Kiera and I were finally able to sleep better. The previous few nights were too restless. 

Arabella did very well yesterday evening and has looked very active today. She's weighing in at 760 grams. She went down 80 after she received an overload of diuretics, but we're trying to move past that now. Her puffiness has subsided, and she's back to looking like her normal self again. 

She's as tough as a diamond. 

The doctors are going right back to the drugs however, and this time they plan on giving her tylenol for her PDA. At least it has fewer side effects. 

Everyone better be double-checking their doses now. Oh, we'll be watching!

Sometimes I feel like this poor girl is being treated like a guinea pig, but it's just this lousy PDA issue giving us so much grief. It's her biggest obstacle right now. 

Today we've been trying to calm down.

Kiera held her skin-to-skin twice yesterday, and I held her for over an hour today. 

After a while of holding Belle my back begins to hurt. Sometimes you feel numbness in your arms or legs, and you're generally uncomfortable towards the very end - but we stick it out. No whining! Because we all need one another 😄

Another awful phone call

Last night around 7:30pm we got another dreaded phone call from the hospital. Apparently there was a mix-up with some medication that Arabella received. 

Great. A mix-up.

Are you ready for this?

A nurse gave Belle 10 times the amount she should have given her. 

10 times! 

At first we thought it was just double the amount. Then today we found out the actual numbers. This is why decimal points are so crucial. Instead of giving her 0.8mg they gave her 8mg. 

I wanted to throw something against the wall.

The medication is called Lasix (furosemide). It's a diuretic. It was to treat her fluid retention and swelling. It doesn't sound too bad at first but it does have possible major side effects. Overdosing on lasix can cause kidney damage and irreversible hearing loss, among a long list of others. 

This is the information we were given. These are just possible side effects. No one can say for sure, or how rare, or what our chances are.

How are we supposed to deal with this news?

It was human error. I know it happens. They're going to file a report and somehow deal with this issue - but what good is that for us now?

We were trying to be so strong lately too, but yesterday broke us completely. It's going to take some time to get ourselves back to normal. 

Who can we trust now? Do we need to be there 24/7 to double-check everyone's numbers?

The nurse that administered the dose better stay far away from our little girl 😠. Actually, a second nurse should have double checked the math and it seems that she did not. DOUBLE FAIL.

We're all so done and exhausted. 

So far Arabella seems to be doing okay. She looked like her usual energetic self. She peed like a pony last night and also today - so hopefully she just peed everything out and everything will be fine. 

All we have is hope.

Here's Arabella giving the middle finger to this week, and to all of the drugs she's received lately:

That's my girl! 💗