(Parts 1, 2, 3, 4, 5 and 6)

August 3, 2006

Elora’s surgery went well.

She was supposed to go in between 1 & 3… then at 11:30 we get a call as we were driving down- asking if we were on our way because they’d probably be starting in about an hour.
Then the surgery that was before hers I guess ran into LOTS of complications & she didn’t get to go til 5pm!

She came through just great again, but the big question is will her intestines work this time.

Dr. N went in where her stoma is & pulled out some more intestine he felt wasn’t working properly & he took out her sutures from the original surgery, since that part of her belly is healing up.

One of the nurses told us today that he’s operated on babies while they were still in the womb! That just blows my mind. Chances are if he weren’t at this hospital, she’d have to be sent elsewhere for this stuff. I’m glad she only has to travel down to the OR. Oh & this guy is HUGE too- not fat, just super tall and with GIANT hands.  I don’t know how he performs surgery on such teeny tiny babies.

August 4, 2006

Elora was being bad today.

Her oxygen was all over the place, but I think it was because she wasn’t comfy. First she needed to be suctioned, then was fine for a bit.

Then she needed a new diaper- she’d peed through hers- so she got a new dry one & clean linens and was good for another little bit..

Then she decided she didn’t want to lay facing the one way, and kept trying to turn her head… once the nurse repositioned her she was OK again.

Then I left, so I don’t know how long she stayed that way.

She was 945 grams tonight, but that was with her diaper on (the dry one).  She’s got some infection- a urine culture they took early in the week came back with something (can’t remember the name) so they put her on antibiotics for that. I guess it’s the same thing she was on them for a month ago, but it was in her blood not her urine that time.  Oh, and she’s back on the Dopamine for her BP- but she was at 7 & had started earlier at 10 so she’s already weaning down.

August 6, 2006

Elora is now officially 2 lbs!

I got to hold her for more than a couple seconds!! I held her for TWO HOURS today, it was heaven. The whole time I held her, her stats were great too.  It was the first time I really truly held my baby girl, and she’s almost 6 weeks old.

August 8, 2006

Elora is 6 weeks old today! I’d be 31 weeks pregnant.
I’ve held her now three days in a row, it’s awesome. I think I’ll let Aaron finally have a turn tomorrow.

The last two days she’s had an infection in her gt tube though- and even though she’s on antibiotics we still have her in isolation and have to wear gowns & gloves when we see her now. I wrote down the name- because I’d asked a gazillion times and kept forgetting- Acinetobacter Baumannii. Say that three times fast!

The gowns are plastic and disposable and SO HOT. By the end of kangaroo care, we were both sweaty. She’s been needing to be suctioned ALL the time lately, and they think that’s why.
It’s so cute- they’ve been putting her little shirts & hats on her now that she gets to leave her isolette each day. It’s so cool to see her dressed!

They started giving her pedialite to see how she can handle it, and it’s coming out her stoma instead of sitting in her stomach- Yay! So today, they gave her 2ccs of breastmilk.

(Parts 1, 2, 3, 4 and 5)

July 28, 2006

Elora turned one month old today! I made cupcakes for the NICU staff to celebrate. When we got to the hospital, she was on Cpap… but wasn’t really liking it too much, so even though her blood gasses came back fine, they decided to reintubate her.
She also had some green gunk in her belly left from her feedings over the course of the night- so they decided to stop those for a bit longer.
She weighed 795 grams- about 1 lb, 12 ounces today.

July 29, 2006

My Sweet Pea was sweet as ever today.  Aaron went in to see her first and she was asleep, but when I went in I started talking to her and holding her hand and she woke up for a bit for me.

She had less green gunk today, but they’re testing it to make sure she’s got no infection. The nurse said her lungs seemed a bit wet, but they suctioned her out and then she seemed much better.

Dr. N (who did the surgery on her intestines) checked her over today too. Her stoma was looking weird- not infected or bad weird, but almost like it was trying to go back into her, so they wanted him to make sure it was ok. I guess he threaded something through the intestine to make sure there wasn’t anything blocking it again, causing the green gunk & it was ok.

August 1, 2006

Elora is still doing about the same… last night I went down to see her & she was back to NPO (no breastmilk) because of the green gunk again. Her BP was a bit low, so they gave her a saline bolus a couple times, and it was helping.

Today she was about the same. Dr. N threaded a line through her stoma to make sure there’s no blockages, and it was clear. she was still on 41% oxygen. She was put back on the Dopamine for her BP though- but the nurse thought she wouldn’t be on it long since she was only on it 2 hours when we got there and they were already weaning her down off of it.
She was on her belly today, and loving it.

August 2, 2006

Elora is having surgery again tomorrow on her intestines because she’s still not digesting anything.

(Parts 1, 2, 3 and 4)

July 17, 2006

Last night Elora wasn’t doing that great. They didn’t even want me to touch her because her stats kept dropping whenever they did her touch times.

Today we got a call from the doctor- they want to do surgery on her intestines for the meconium plug tomorrow. They didn’t want to do it with the PDA still open, but now there’s no choice since nothing else worked.  The doctor said it’s ‘exploratory’ since they don’t really know exactly what’s going on in there.

They are going to give her some blood and other stuff today to help her be more stable for surgery tomorrow. We are going to go down there this afternoon to sign the consents and stuff. Surgery always carries a risk, but when the patient is this tiny, it is super scary. Hopefully this will resolve her belly issues and she’ll pull out of it with flying colors.

July 18, 2006

Elora came through surgery nicely today. She was supposed to go in at 9 am, and we got there at 8 like the nurses recommended- but she was already gone! The surgeon showed up at the NICU at 7 and wanted her then- when we got there and learned she already was in the OR, I was so upset because we didn’t get to see her off or say goodbye.

He came up to talk to us when it was over and said he was glad he did the surgery when he did though because her intestine not only had a block, but the block had caused a perforation. He had to take a very small segment of it out. She’s got a temporary ileostomy- she’ll need surgery to put that all back inside her in about six weeks, or when she’s around 4 pounds.

She ended up back on the blood pressure meds because it went low again, but hopefully that’s due to the sedation & pain killers they are giving her and she can wean off them soon. They also put in a central line so they won’t have to poke her so often with the IVs while she was under anesthesia. They are hoping it will last until her next surgery.

3 weeks old, after surgery

July 22, 2006

We found out that Elora’s scheduled for surgery to close her PDA on Monday at 11 am.
She was very sweet today- the nurse had her in a bitty hat & she was sucking feverishly on the teeniest binkie I ever saw.

July 23, 2006

Elora was so sweet tonight- she was wide awake for awhile, just sucking on her pacifier, looking at us. I got to hold her for a minute while the nurse changed her bed linens… but she hated being held. It was nice to get to hold her hand though and look at her with the top of the isolette up for awhile.

July 24, 2006

Elora’s second surgery was a success!
Instead of taking her early, this time it started way late.

She was coming out of all the sedation when we left… her oxygen & blood pressures were already showing improvement!

The doctor said she can start trying some breastmilk in her tube as soon as she comes around from the PDA ligation.
So, now she needs to grow & come home to us.

Oh and she was 1 lb 9.9 ounces today, so basically 1 lb 10 ounces.

Cheryl, the nurse that was with her for her first surgery, had the day off today but came in anyway to be with Elora during this surgery too. The anesthesiologist asked her why she was there and she said ‘Because I LOVE HER!’

The nurses keep going on and on about how cute she is and how much personality she has for being so young. One of the NICU nurses just had a baby and they were talking to her & she was saying how her full term baby only sleeps – that she has to wake her to nurse her and how some of these preemies have way more of a developed personality.

(Part 1, Part 2, and Part 3)

July 9, 2006

Elora got her first ‘taste’ of breastmilk- they gave her 1cc in her tube.
They’re not sure she’s digesting it well… so it might be too early, but I think it was great that they tried.
They were unable to get any fluid during her spinal tap so she has to get re-poked.
She’s still having great blood pressures, so she is still off the Dopamine.

July 11, 2006

Elora didn’t have the best day today. Her poor belly is all swollen and discolored. They aren’t sure why, but they think it was something underlying and nothing to do with giving her the milk yesterday. You could tell it was really hurting her too.
They were giving her an xray when I left, to see what the cause of it was… and to see if that’s why she was having trouble with her oxygen levels- they think because her belly was so swollen she couldn’t expand her lungs all the way.

We had a meeting today with the doctor to talk about what’s going on. They put it all on the table, and I am scared for her.  Her lungs aren’t working well, she’s got a PDA, an infection (citerobactein), and something unknown going on with her abdomen.  The only decent news is that her head ultrasounds look fine- no brain bleeds.

July 13, 2006

Yesterday Elora’s belly was still pretty bad. Her oxygen was turned up higher than normal. She had to have a barium enema & some xrays to see what was going on. We’re still waiting the results of that. Her blood pressure was also running low and there was a good chance she’d end up back on the Dopamine. They decided to give her some fluids to see if it helped bring her BP back up, which thankfully worked.

July 15, 2006

Elora was doing ok again today- her belly is getting better still.
They are going to hold off doing anything and re-evaluate her on Monday.
She weighed 1 lb 6 ounces today, so she’s growing!

She was awake for awhile, looking around, very alert. She kept licking her vent tube.

(Part 1 and Part 2.)

July 4, 2006

Good news & not so good news today.

First, the good news- Elora finished with her phototherapy for jaundice today- so that means I got to see her lil face finally without her eyes covered!  She weighed 1 lb 3 ounces today.
She was peeking open her eyes at us when we were talking to her today too, that was really cool to see her respond to our voices.
The nurses dressed her up & took a picture for me:

The not so good news is that her blood pressures were all over the place for a bit last night again… not a good sign in regards to the PDA closing. They have her scheduled for another EKG tomorrow to see what’s up with that.

Also, she had some green gunk in her belly. Since she’s not eating yet, there shouldn’t be ANYTHING in her belly… and the PDA meds, Indocin- can cause serious tummy issues… so she might have something up with that. It could be NEC
( http://www.hmc.psu.edu/childrens/healthinfo/n/nec.htm )

We’re hoping not, but like everything else, it’s wait and see.

July  7, 2006

Elora had a busy day today! They took the line that went in through her umbilical cord out. But because they did that, they had to put an IV in her foot for her fluids & meds. Also, now she’ll get stuck each time they need to take blood.

They also took her off the vent & put her on CPap. She is doing really well on it, breathing on her own, but they said it might tire her out. Because of the CPap they also started her on caffeine.

She had to go back under the bili lights too today .

Results from the follow up EKG- there is still a PDA but it’s now ‘small to moderate sized’- before it was a large one… so the Indocine seems to have worked somewhat. She hasn’t had any more of the green gunk either… but the nurse said her belly looked a bit discolored.

If she’s still on CPap tomorrow & not having issues with it, we might get to hold her!

July 8, 2006

They had to put Elora back on the vent today because she was getting very tired out breathing all on her own & had a couple of apnea spells. Also her blood gases weren’t as great as they should be.

She was weaned off her blood pressure meds this morning and is doing well without them- so that is one step closer to getting some breastmilk in her. She’s still got a bit of an infection, so I had to sign a consent for a spinal tap so they can rule out meningitis.

Elora with one of the diapers I had bought her- I had planned on using it as one of her first ones.