Saturday, January 29, 2011

The strangest things

I've been having an insane flux of emotions lately. Usually it's the strangest little things that set off my reactions. Since we've been getting Eliza's car seat and stroller together, I can't even think about putting her in it without getting choked up. I guess it's the contrast of her being in the hospital, attached to so many lines, not stable enough to be picked up... and now to put our little girl her in a carseat and whisk her home. The thought overwhelms me with happiness. :)

In contrast to that, getting ready to bring home only highlights the fact that we are bringing ONE baby home. We only need to get one carseat installed in the car, we still need to find a home for the triple stroller that is currently residing in our shed, and I'm constantly struggling with whether to get rid of boy stuff that was for Oliver or keep it.

We have to "room in" with Eliza at the hospital to make sure we are comfortable taking care of her. I'm not entirely sure why since I'm always at the hospital doing everything for her during the day. I guess it's to test if you can do the same things without sleep. :) The rooms we have to stay in are the same ones they whisked us into when Oliver and Charlotte were very sick and dying. It's another test in combining the sad and happy I suppose.

One thing I have noticed is just how READY I feel for taking her home. Haven't I always been ready for this? Nope, definitely not. I was well aware that she was exactly where she needed to be. She needed much more than her mom and dad could provide and I was thankful she was getting it. But NOW things are different, I feel like she is ready (trustworthy!) and that we are prepared to look after her. Of course, I am well aware that this could change as soon as we disconnect the monitor and take her away from all of the easily available medical help. But at least now I am OK with the thought of disconnecting the monitor. :)

I actually have hope and expectations that she is actually coming home.  I am letting the joy actually sink in and spread for maybe the first time since we began this journey. There have been some significant happy milestones along the way but in order to protect ourselves from the next disappointment or devastation we haven't been able to really feel them. Everything is always day to day with no promise of what tomorrow will hold. This is true for all of life but with babies in the NICU it has been magnified. For once I see a future and can greet it with a smile. I can acknowledge others' happiness for Eliza's progress and agree! I don't feel the same need to qualify the "Hooray!" with a "But".

So... Hooray!!! Good days. :)

Thursday, January 27, 2011


So much is happening lately with Eliza! A recap of whats happened since the last post:

- Eliza pooped on Monday! Hooray! Poop has never been so exciting. This means everything is moving through her system like it should after the surgery. It also means they've started feeding her again which makes Eliza a happier girl.

- They've started her gradually back on feeds. They are going up by about 5ml every 12 hours to make sure her body can handle everything ok (since most of her guts haven't had anything to do for the last 4 months) and so far she seems to be doing ok! Right now she is at 35ml (a little over an ounce) every 3 hours, and hopefully soon she will be on "full feeds" and her central line can come out. No more IVs or TPN!! From here they will just be experimenting with how much she can take and what additives she will need to grow optimally. At 5.5lbs, 4 weeks adjusted she still has a lot of catching up to do, so they want to get the biggest bang for the buck.

- The Opthamologist came by Tuesday and we were all very happy to hear that her right eye had NOT gotten any worse! This was the concern when deciding whether or not to go ahead with her abdominal surgery so it was a huge relief to hear that the surgery did not cause her eyes to get worse.

- The Retina Specialist did her evaluation of Eliza on Wednesday. She has concerns about the state of both of her eyes but feels that they are not at the point of requiring surgery. She wants to wait and see but feels that right now the ROP is not significantly damaging her vision. She was a very interesting doctor and was happy to talk to us about all the details of her eyes. It always helps to feel like you have most of the info, even if it doesn't all make sense to us mere mortals. She will be rechecking her eyes again monday and probably once a week for the foreseeable future.

This all brings me to the fact that she may be escaping from Duke very soon!!!! We don't say "going home" around these parts because it's asking for trouble and all of us at the NICU are very superstitious. So.. she maybe going to "Camp" next week!!!!! There have been lots of discussions lately amongst her care takers in regards to her plan of escape. Right now we have a very long list of things to accomplish in the next week so we are busy checking things off. Eliza just needs to follow the plan. :)

More later from a very happy momma!

Saturday, January 22, 2011

After surgery

Eliza's surgery on Thursday went as well as we could have possibly hoped. They took her down to the O.R. right on schedule, and called out to the surgical waiting area at 2:15 to let us know that they'd started - right on time. By 3:45 the surgeon was able to come out and tell us (including Eliza's cheering section of Nana, Granny, and Grandma and Grandpa, all of whom were able to be in town for the surgery) the good news. They'd inspected the full length of her intestine and not found any remaining perforations, and had flushed liquid through it easily with no sign of strictures or obstructions. She only lost about 2-3 cm of intestine during the reconnection process, and after stitching her ends back together they were able to confirm that the connection was watertight. All in all a very successful surgery.

When we were able to go back in to the ICN to see our recovering surgical patient, we were struck by how much bigger she looks without a giant ostomy bag stuck to her stomach and stomas protruding into it. It's a more dramatic change in her appearance than we were expecting.

Now, of course, it was time for her to rest and recuperate from her major surgery. That's been difficult so far for her and for us - it's been a real balancing act between giving her enough morphine frequently enough to keep her pain under control, and on the other hand not giving her so much that it depresses her breathing and requires additional respiratory support. (She was put on the ventilator for surgery and stayed on it for about 24 hours afterward, then graduated to the nasal cannula where she remains for now.)

Heather was at the hospital from 8 AM to 11 PM yesterday, watching and caring for Eliza with assistance from her mother and grandmother (during the day) and me (during the evening). Eliza was having a rough time of it all day, causing Heather a lot of stress and exhaustion. She was having bradys and desats every five to ten minutes - she would flinch or wince, causing her pain, and then drop her heart rate or hold her breath. Sometimes she would be OK for a while, letting us think that she was starting to do better, then surprise us with a sudden big brady. She had several events where she would brady continuously or repeatedly for several minutes, and she had at least one desat where her oxygen level dropped to 20% (!) and took a seeming eternity to come back up to healthy levels. It was seriously scary and stressful.

To add to our stress, the nurse practitioner in charge of Eliza during the day was tending to err on the side of not allowing her enough morphine. We had to really fight to stop cutting back further on her dosage and instead give her as much as she needs. Shortly after we left for the night at around 11, they finally managed to give her enough morphine and she was able to sleep well from midnight to 6 AM or so.

We're back at the hospital together today. Eliza has already had a few bradys and desats this morning, but we're hoping for a better day than yesterday. The care team today is okay with keeping her at her current morphine dosage if she needs it (they were even discussing increasing it a bit!), not trying too aggressively to wean her off the nasal cannula, and just in general leaving her alone to rest and heal. Hopefully that's exactly what she needs right now. Heather is holding her for the first time since the surgery as I write this, and they both look less stressed and more content then they ever did over the previous day and a half.

Wednesday, January 19, 2011


Eliza is scheduled for 2pm tomorrow to be reanastomosed. This surgery is to reverse the surgery that she had when she was 7 days old because she had developed either NEC or a spontaneous bowel perforation. To keep her intestines from dumping stool into her abdominal cavity they pulled out a loop of her small intestine as an ileostomy so that her lower bowel could heal. Since she was so small and fragile when she underwent the inital surgery (about 1 pound) they had to be extremely careful. One of the comments that the surgeon said when asked how it went was "well, her insides are like wet tissue paper." I'll never forget that. (Yep, we have the same surgeon tomorrow... hopefully the description of her insides will be a little more positive this time :) ) 

She (and we) have been dealing with this for the last 4 months. And it's finally time to fix her. This surgery is a big deal and quite invasive but it's what she needs and we are glad that its time to finally do it. Fortunately from the study they did on her last week it looks like the downstream part of her bowels look great. They don't see any strictures or other problems, though they will not know for sure until they get inside. Hopefully everything looks great and the surgery goes pretty much as intended. That's what we'll be hoping, praying and crossing our fingers for!

Tuesday, January 18, 2011


Eliza's surgery is tentatively on the schedule for Thursday afternoon, just two days away. Of course that means it's time for something new to come out of left field and throw us for a loop... and as usual, life does not disappoint.

After Eliza's last eye exam a week ago, the ophthalmologist said there was "some tissue" in her right eye that didn't look quite right and would need to be monitored closely. After the followup exam this week, we have been told that Eliza's right retina has hemorrhaged some and looks to be at risk for retinal detachment. This was a real shock, especially since three weeks ago we were told that her eyes were looking great. Her left eye is still looking good, but the right eye... not so much.

The ophthalmologist wants to have a retinal specialist come by to offer an opinion on whether they can keep monitoring Eliza's eye for now, or whether she will soon need a surgical procedure called a vitrectomy... Apparently they've done all they can with lasers at this point, and the next step if her eye needs it is actual (invasive) surgery. Ugh. From what we're hearing, and from what we've seen online, if her retina does detach and/or a vitrectomy is needed, the outlook is not good for the vision in that eye. Unfortunately, said retinal specialist (while highly rated - apparently babies come to Duke from across the state for her to treat) is currently out of town and won't be back and able to take a look until Monday, which means we've got most of a week to worry and wonder before we can get any more definitive answers.

The extra wrench in the works is the concern over Eliza (possibly) having two surgeries so close together. If things go as planned on Thursday and she gets to have her bowel surgery, but then the retinal specialist takes a look on Monday and decides that they should operate on her eyes ASAP, this would be less than a week between surgeries - which they really want to avoid since that would be really hard on her health, and she might not even be stable enough after the first surgery to safely go back for the second one as soon as she might need to do so. Plus there's apparently a small but real risk that the stress to her system from the bowel surgery might cause her retinal condition to deteriorate further... so should we postpone this week's surgery until after we know more?

On the flip side, though, we have no way of knowing if or when the retinal specialist will recommend surgery, and if we postpone her bowel surgery, not only is there the possibility of a lengthy "wait and see" observational period for her eye (during which time of uncertainty, sending her off for bowel surgery would probably not be recommended), but also there's the question of how long it would take to get her back on the surgery schedule once she got the go ahead - given how long it took to track down the surgeon and get her on his schedule this time, who knows how long the next time will take.

So we're really stuck between a rock and a hard place. All of the reasons for going ahead with the bowel surgery as soon as possible are still in place (infection risk from PICC line, digestive difficulties, ostomy swelling and prolapse, liver damage from IV nutrition, etc.), but now we have to counterbalance that against the risks to her eye and vision if we don't delay the surgery. Most of the doctors and nurses seem to feel that it's still in her best interest to go ahead with the bowel surgery now, and we feel the same way, but it's a very tough decision to make - we really hope we're doing the right thing for our baby girl.

Friday, January 14, 2011

This one's for Claire

...and her mom. Thank you for coming into our lives - for being comrades and friends during the most trying times in our lives. Eliza lost her brother and sister so early. We never got the chance to take a picture of them together or even share the same room. While having the triplets together can never come true for us, having you and Claire there with us has brought us some comfort and much happiness. Thank you for giving Eliza a sister in spirit.

Claire made her escape from the hospital yesterday! We are so happy for them and hope that it doesn't take too much longer for us to do the same. :)

Thursday, January 13, 2011


It's about time for more pictures -especially of the new, much chunkier edition of baby.

Taking a nap and sporting one of her cute IV-friendly shirts made by Grandma Jan

Momma loves these eyes!

She's so much more alert and attentive now.

I mean this needs no caption, obviously.

Hanging out in the TCN and checking out the surroundings.
(That's baby Claire's Granny in the distance!)

Getting ready for surgery, hopefully?

As Eliza closes in on the magic number of 2.2 kilos (she's at 2.195 tonight!), that means it's almost time for her surgery to repair her ostomy... or so we hope. We've had a heck of a time trying to pin down the surgeon to actually meet with us and put her on the schedule; it's like he doesn't actually want to operate on her. One of the nurses told us this is pretty common - they try to stall as long as possible so the baby can keep growing, making the surgery easier. Understandable but frustrating - this is the milestone we were given to aim for (after the previous milestone of 2 kilos...), and the surgery is the single biggest thing standing between her and coming home.

Plus, it's more and more clear every day that this should be done SOON. Her PICC line (required since she isn't getting enough nutrition from her digestive system, more on that later) was probably the cause of her recent infection, and is always a risk for introducing another one. The IV nutrition from the PICC is hard on her liver, though she's handling it well so far as we know. Her stomas are continuing to be more prolapsed and more swollen every day, and are starting to get eroded and lacerated from rubbing up against her ostomy bag.

In short, she's reached the point where we (and all of her care team) agree that it's better for her to get the surgery NOW rather than to keep waiting. If only we could get the surgeon to agree! We've tried to meet with him the last two days with no luck (though yesterday he did stop by after we'd already left for the night) - here's hoping tomorrow's the charm!

We did get one step closer today - they did a barium trace to confirm whether the "downstream" parts of her bowels are in good shape to start being used once they reconnect her. The results look good - everything seems to be in good working order - but they also confirmed something we'd been suspecting. Her ostomy is not nearly as far down the line as they'd been telling us; she has a significant amount of small intestine downstream from the ostomy that is therefore not currently available to aid in digestion. This is good news, since it explains why she's been dumping rather than digesting efficiently, and why she hasn't ever been able to gain weight well from purely oral feeding, but it's a bit frustrating too that we've been mistaken for the last four months. Still, it's a good sign that she should be able to do much better once she has the surgery.

Here she is twiddling her thumbs - she can't wait either!

Tuesday, January 11, 2011

4 Months and 2 Kilos

Saturday, the 8th, Eliza turned four months old! It's so incredible to think we've been doing this for 4 months now and how much has happened. She's an amazing little baby now. She makes silly faces and goes from smiling to looking very concerned in a second. It cracks us up! Everyone comments that she looks just like Glenn. :) She's so much more interactive with us and loves to be held. Her face has filled out a lot and she has fat rolls!! One hundred percent different than four months ago or even two.

I brought in her baby book to the hospital the other day to try and fill in some parts while she slept (didn't happen!). A few of us ended up looking at some of the early pictures and just marveled at the changes. It truely is amazing how far she's come. She is such a fighter. I am so thankful for the dedicated staff that have worked so hard to keep a close eye on Eliza and make this miracle possible.

She has made it to two kilograms finally! She weighed in at 2060 last night making her 4 lbs 8 oz! She should make it to 2.2 kilos (the magic number that the surgery team will begin thinking about operating) by the end of this week - so we are hoping that she will be scheduled for surgery the beginning of next week (~ Jan 18). Just one week away! Once she has her bowels reanastomosed (or reconnected) we should be on the fast track to coming home. It just all depends on how she recovers after surgery,  if she can start eating enough, and gaining weight consistently.  I'm hoping somewhere around 3 weeks from now!

In other news, they did a couple of ultrasounds last week on her pelvis and spine to follow up on concerns about her hormone levels. Fortunately her spine looks perfectly normal. On the pelvic ultrasound they found a small cyst around where her left ovary is but they are unsure if it is an ovarian cyst or something that was left over from her previous abdominal surgery. They will be keeping an eye on this and fortunately it is something they can do as an outpatient.

Less positively, there was a mishap that happened recently with her meds. She was given her IV doses of steroid medication (hydrocortisone) by mouth instead. Luckily she did not have any major reactions to this (just some symptoms that we attributed to reflux). As soon as it was discovered the nurse practitioner gave us a call since we had already left for the evening. She told us that this would initiate a series of events to help identify the reason and hopefully make it more difficult for something like this to ever happen again.  We know human error is always going to play a part but it's very scary to think about what could have happened if had been a more serious we just won't think about that. :) This must be one really scary part of the nurses' (and all medical providers) jobs!

One more note, Eliza's BFF Claire went in for surgery today on her liver. Surgeon said that the surgery went well (hooray!!) so now we are all hoping that Claire's recovery is very speedy and easy and the girls will be reunited in the same room again soon before they both start trying to make their escapes home. :)

Wednesday, January 5, 2011

Good Day

Eliza was back to her normal wide awake and curious self when I walked into the TCN this morning. Her speech therapist was holding her after feeding her and was excited to tell me just how well Eliza did at her bottle. We have been having some trouble getting her to eat without bradying and, lately, being interested at all (who can blame her?). She had sucked down 28 mL with no trouble and her therapist didnt have to give her much chin and cheek support either (she normally needs this to have an effective suck). Yay Eliza!

Not only was she wide awake and eating well, her nurse* had her dressed up in one of her cute outfits her auntie bought her and one of her gigantic hair bows I found on Etsy. Eliza and her BFF Claire had to have their pictures taken together again! Claire's mom** is much better at getting pics posted in a reasonable time frame so you can check out the photo on their blog if you want. :)

The attending physician is very impressed with Eliza's immune system. She did a heck of job trying to fight it off even before getting some antibiotic help. He said that a lot of times preemies will get cold when they are infected cause their body doesnt know how to fight it off but hers went into action and did what it should. She's always been the little fighter. We are still waiting on the results from the blood culture to find out exactly what bacteria this is and they are also going to do one more culture. They are pulling this one from her PICC line. If her PICC (central IV line) is infected then they will have to take it out, so we are hoping for this not to be the case!

They also have started to wean her hydrocortisone (steroid) today. This is the first attempt in months. Previously she has been completely intolerant of weans and gets really sick. She is much bigger now and we are all hoping that she can handle the wean. She can't go home on the high does she is on so this is one big step on the road to home.

Eliza may have something kind of fishy going on with her hormones so Endocrinology and Urology are going to be keeping a close eye on her as well. The girl likes lots of attention and to keep everyone on their toes. Maybe that's not such a bad way to be. :)

Until later!

*Her nurse today also took the time to completely scrub down the area and floor in Eliza's section, put up a few decorative accents and changed the linens on her bed. We always appreciate it so much when you can tell the nurses really care for Eliza and make such an effort! Thank you!

**I've really enjoyed having Claire and her mom in our room the last several days. It makes such a difference to have someone to talk to and to share a knowing glance with. We will miss them much when they change rooms!

Tuesday, January 4, 2011

Warranted events

After our last post, Eliza changed from having a high heart rate (200-215) to having an unusually low heart rate for her (140-160), while continuing to have intermittent bradies. It didn't worry the hospital team as much, but it worried us just as much if not more - her heart rate hasn't been consistently that low ever before, so what was going on? Also her blood pressure was reading unusually low (averaging 40 instead of 60)... weird and scary stuff.

However, as the evening went on, Eliza's condition improved markedly. Her temperature came back down to normal, her blood pressure came back up, her color improved and she became less lethargic. Her bradys decreased in frequency and stopped entirely by 1 AM. We were still worried about her condition but at least she wasn't acting as obviously ill, and we were able to get a few hours of sleep while we waited for the results of her blood culture and urine culture.

Today we got confirmation from the cultures that Eliza does in fact have an infection of some sort. All we know at this point though is that it's another gram negative rod bacteria (remember Klebsiella from way back when?). It's a good thing that they went ahead and started with the antibiotics last night! They've adjusted which antibiotics she's getting (now gentamicin and zosyn) to more specifically target this germ, and they've drawn some additional labs (a second blood culture and a spinal fluid culture) to check how the infection is progressing, but besides that, it's a waiting game.

At least today she hasn't been acting very sick - no bradies, eating fairly well, temperature and heart rate OK, blood pressure a bit high though - so maybe that means her little immune system is kicking germy butt. We're hoping so!

Monday, January 3, 2011

The usual cycle

As usual, by bragging about how well Eliza has been doing, we've given her an open invitation to prove us wrong. (One such previous iteration here - also on a Monday; what is it with Mondays?)

Over the last couple of days, we'd been a bit concerned because Eliza's temperature and heart rate had been drifting gradually upward. By Saturday morning, she was getting too warm when wearing clothes and swaddled, so she had to be swaddled in just her diaper. Her heart rate should be going down as she gets bigger, but over a week it went from 160s to 170s to 180s and up. Neither of these are problematic in and of themselves, but something we were keeping an eye on - it might not even be related to her current issue, I don't know.

She has also been sleeping a lot - nothing but eating and sleeping, without really spending any time awake in between. This too may be a non-issue (or even a good thing, since maybe it's been helping her gain weight?) but it too was a change for Eliza.

This afternoon and evening, though, she has definitely been feeling sick. She's been pale and lethargic, her heart rate was up in the 210s (alternating with bradycardic episodes, which is also concerning and NOT typical for her), she was overheating even when simply swaddled, and was just plain looking ill. Worrying!

No one seems to be quite sure yet exactly what's going on with her. They've done a number of labs so far (several blood tests and a chest x-ray), which have showed a few borderline results but nothing that shouts "Eureka!" They're going to do more of them (urinalysis and a blood culture) so we'll see what those results come back as. The attending fellow suspects either a UTI or a virus of some sort, so he'll be starting Eliza on antibiotics tonight just in case.

Further bulletins as events warrant...

Saturday, January 1, 2011

Happy New Year!

Last week we had a family conference since we had a new attending doctor. We request to have a conference every time there is a new attending just to get their perspective and opinions on how things are going with Eliza. The take home from that meeting was just how soon they thought she might be coming home. Previously we had been told that it would be at least 3 weeks post surgery before she would be able to come home. Apparently this was the wrong info. According to the new attending, she could come home in as little as one week after being reanastomosed! (Provided she passes all the tests of course) So she just needs to get big enough to have the procedure.. somewhere between 2.2 and 2.5 kilos.

Other good news from this week is that her eyes are looking a lot better. The eye doctor said that her eyes were near perfect and she wouldn't need to be checked again for two weeks! So thankful that the 2 laser procedures she had have worked and dramatically corrected her retinal veins.

Eliza's BFF, Claire, is back in the same room with us now! About a month after Eliza was born she was moved to a new room and soon after that, Claire moved in. Of course they both have been moved around a lot since then but are once again together again. We are so happy to have their friendly faces around. Eliza and Claire had their picture taken together and its super cute -- you can see it here.

It has been a really good day. We slept late(r) this morning and woke to Eliza's primary nurse calling us. Today was the first day she had Eliza in a week and half of being on vacation. She wanted to tell us how well Eliza did with her first feed. She took 30 mL by bottle and needed no pacing and didn't have any bradys! She was also happy to see how big she looked. She encouraged us to plan to only come in for an hour or two and take the rest of the day off. We ended up doing just that. Knowing she was there looking out for her, and just feeling more confident in how Eliza is doing, makes for a great start to the new year. We spent time working on Eliza's room and putting away Christmas stuff.

Just called the nurse and Eliza has continued to eat like a champ. She's gained 50 grams too - up to 1750 (3lbs 14oz). Hooray!