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Wednesday, March 29, 2006

Back home from surgery!

We are back home from the hospital and Kaitlyn is doing great!

Our experience at the hospital still had more problems before we left however. I spent the night with Kaitlyn, we ended up having our own room and the Pediatric Ward nurses and docs were very nice. However, during the night, the nurse changed Kaitlyn’s IV bag incorrectly, and hung a bag that didn’t’ have any dextrose. This means that she didn’t have any food (besides electrolytes) and when the day nurse realized it at 10 am, she immediately took a blood sugar level and Kaitlyn had extremely low blood sugar (think, Diabetic shock!). They quickly remedied the situation, though, and hopefully she won’t have any ill effects from it. But, my goodness, how in the world can this kind of thing happen?

I was able to carry her into the operating room, of course I had tears streaming down my face. The Pulmonologist was there to do a bronch scope on her (and they want her awake for that, as they want to make her cry (how terrible) so they can see what her vocal chords do). I decided I didn’t want to watch, so I left her in the Operating Room’s capable hands, but it was so scary and terrible!

The Pulmonoloigst came and talked to us shortly there after and confirmed that Kaitlyn’s left vocal chord is indeed paralyzed – he said the good thing is that it is paralyzed “open” meaning that she can breathe. But, it seems likely to me that is what is causing her not wanting to eat, as when a person swallows, we close our vocal chords to keep what we are swallowing out of our lungs, If only ½ of her chords can close, that would make milk go into her lungs. She did have a swallow test while she was still in the NICU which showed she didn’t’ aspirate (milk go into her lungs), so I think it’s only intermittent. We usually find she seems to aspirate a bit when she throws up, as it goes down her lungs. If she was really aspirating, should probably would be very sick at this point, as fluid in the lungs causes pneumonia, and she’s still healthy.

What’s the outcome of having a paralyzed vocal chord, will she be able to speak? Only time will tell. It may heal on it’s own, or it may never heal. If it doesn’t heal sometimes the chord that works learns to over-compensate and move all the way over to the chord that is paralyzed. It’s our chords touching that allows us to speak. If this is the case, she will likely have a horse voice permanently, and she will likely have speech delays obviously.

The paralyzed chord seemed to have been caused from the PDA heart surgery she had when she was 4 days old. (if it were caused from the ventilators it would likely be bruised, swollen, etc), and the doc said it looked fine. During the PDA ductus surgery that she had a risk is damage to the chord nerve from either nicking or cutting it. The reason she had to have her PDA closed was that she was born to early and a babies heart in utero has this valve open so that the amniotic fluid can circulate, as that’s what the baby breathes while in utero, once the baby is born, the valve closes which makes sure that fluid doesn’t go into the heart/lungs. Many preemie babies have to have their duct closed either from drugs or if the drugs don’t work from the surgery that Kaitlyn had. Was this another Doctor error? We’ll never know.

After that, she was put under General Anesthesia and put on a ventilator! This is what scared me the most. I was afraid with the condition of her lungs that she may not do well after wards and have to stay on the vent.

Thankfully, she did really well, and they were able to remove her from the vent not long after surgery! This was great news.

The surgeon came out to talk to us and said the insertion of the G-tube went great. He put the scope (so he could see the insertion) through a cut he made in her belly-button, and the g-tube is inserted directly into her stomach a bit higher and to the side of her belly button.

It was bigger and stuck out more than I thought it would, but from my understanding the type they used is actually the lowest profile G-tube “button” that there is. It’s called a Mik-key.

They first started using her feeding tube with Pedialyte and she seemed to handle it well, so throughout the day yesterday, they increased her intake of fluids and then switched to my milk until eventually we gave her the full feed she was taking before we left for the hospital, and she handled it like a champ. We had some small spit-ups but because it went so well, we were released to go home last night at almost 8pm.

The nurses taught us how to feed her with the g-tube. The nurse told us that were as parents were the easiest she’s ever had to show (maybe it’s because we’ve been feeding her with the NG tube for 2 months now). It’s a different system than what we did before, but it does seem to be easier, the milk flows so much faster (too fast, we have to slow it down so she doesn’t get too full too fast), and no more ugly tape and tube on her face! It’s so nice to see her beautiful face with nothing on it. Just think, since she was born, she has ALWAYS had something on her face. Since 10/4/05! Except for the few times that it was pulled out (usually be the little peanut herself). The tube had caused a red indention on her cheek that will hopefully go away. It’s looking better today already.

Now, 5 feeds into being home, I wish I could say that she hasn’t thrown up, but that’s not the case. She has continued to throw up, only time will tell.

With her vocal chord issue, this could be a definite long haul for us.

She really seems to be feeling good and recovering nicely!


Kaitlyn didn't fit her baby "hospital gown" very well. This was in the room where we undressed her and the nurses prepped her for surgery. I was a nervous wreck.

Here I am holding little Miss Kaitlyn.

We were taken into the surgery area (gowns only permitted) and whisked into this Doctor Conference room. Brian and I sat there for about 10 minutes before the anethesiologist and Docs came in to talk to us. You can see how I'm feeling now. Kaitlyn however doesn't seem to be all that concerned, she's sound asleep. I was given a surgery gown, hat and shoe covers and allowed to carry her into the operating room. I didn't watch her be put under, as they had to do the bronch scope first, which I didn't want to stay and watch.

This is yesterday, about 24 hours after surgery. We had just fed Kaitlyn through her new G-tube for the first time. You can see her G-tube on her belly. You may have to click on the picture to view a large copy of it. The skin colored stuff around the "button" will go away, it is there to help protect her skin for a week or so.

The hospital knitters (women who make and donate hats and blankets to sick babies) made this cute hat. We put it on Kaitlyn as we were about to happily walk out the door! Here is Kaitlyn's goofy face again, I think she was happy to go home too!

Dad's got a ghotee growing while he's off on Paternity Leave. While in the fire department he can't grow one as the oxygen mask he has to wear fighting fires wouldn't get a good seal (that's you never see firemen with beards). He goes back to work in 2 more weeks.

10 comments:

JP said...

Welcome home! I'm so glad that things went well in the end. Just like the NG tube, the more you use the button, the easier and more "normal" it becomes. Have the doctors suggested thickening her milk or slowing the rate down to decrease the spitting up?

Amy said...

Goodness, she looks so happy to have just had surgery. Babies just amaze me. I hope you see the improvement in Kaitlyn that you are wishing for.

HHH said...

Is she on a pump? Hallie never was but her 2 friends that have them still are and i would think that would help with the throwing up. We couldnt let the milk go in so fast so we push her milk in with a 1 oz suringe through the medicine port, it has always worked for us! Isnt it great to see her face, tape free!!

Anonymous said...

She looks so cute! I wanted to let you know that my daughter had a pda as well and during transport, the vent fell out. They jammed it back in quickly without really looking (righfully so I guess, to save her life even though they screwed up...). I would have never found out, but the anesthesiologist didn't know I was the mom and I overheard him talking about it.

Anyway, the point is, after I raised all kinds of hell, I found out a lot of info. about paralyzed vocal cords. (She ended up being ok, but at first they thought that happened). The neonatologists said you basically always state the worst in this situation as variability is possible, but most likely these cases (in girls) end up sounding like Demi Moore! (I swear to God this happened, I live in LA...). -E

Twinmum said...

Kaitlyn is a beautiful baby! Keep up the good work!

Julie DeRuvo said...

Liz,
I am so glad that Kaitlyn's surgery went well. We were all sending many prayers your way! I can't get over how well & happy she looks! I hope the transition to the new feeding style is more successful than the last! Hang in there!
xoxo,
Julie

michelle flannagan said...

Liz- I'm glad the surgery went well. She looks beautiful as usual! We used a pump with Anna's Jtube feedings (to regulate how much was being fed), are you going to be using one eventually?
We had a button like that at first, but then it was switched to a lower profile one after 3 months.

Take care! Michelle

Jill & Terry said...

Wow, it is remarkable how much we have in common, you left a comment on my Blog that your baby was born 1/2 month before Zach, you have the same feeding issues, you got married in 2004, and you got married in Nevada. Weird anyway hope all is going well for you. Jill & Terry

Jodi from PROM said...

I'm glad she did so well with the surgery! A suggestion regarding the paralyzed vocal chord...The "in" thing these days is baby sign language. This might be especially good for Kaitlyn since you may anticipate communication problems. My son learned several of them, and it really helped him communicate. I can give you a link to a great website if you're interested. Just let me know.

Best wishes,
:) Jodi from PROM

Simon Langer said...
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