One Week Later

Delaney's been home for one week now, and we're still getting used to each others' schedules.
Eat, sleep, eat, sleep, but we're also finding time to get some chores done or just do some general relaxing.

1 Month Old (and one day)

Delaney is now one month old, even though we just brought her home. Weird.
She had her first regular doctor's appointment yesterday, which went really well. She's growing and gaining weight just like she should be.
We're starting to get into the rhythm of taking care of her through the course of the day; that'll change a little next week when I go back to work, and it'll change a little more when Jess eventually goes back to work, but we ought to be able to handle it.

Merry Christmas!

Home is where the baby is

We're home! Delaney took her first ride in her car seat today, slept in her incredibly huge (for her) crib, and is currently thinking about waking up to grab another bottle. We're really happy that she's home, and somewhat nervous that we don't have the nurses around anymore.

Not today

Just spoke with St. Elizabeth (the hospital, not the actual saint), and Delaney will be coming home with the monitor and a spare bit of oxygen, but she won't be doing it today. They want to give her another pneumogram tonight, so it'll be tomorrow before she can check out.
In the mean time, we'll be taking a monitor class so we know what the heck we're doing. I'm sure it's just like a video game.

A pneumogram, by the way, is an overnight recording of breathing effort, heart rate, oxygen level, and air flow to the lungs during sleep.

1 week later

1 week after the surgery, and Delaney's doing really well. She's feeding fairly consistently and breathing pretty well too. Her oxygen saturation level is dipping a little bit (after which she rebounds really quickly) so they're doing some close observation on her tonight. It's possible that we'll have to take a monitor (and maybe some oxygen) home with us. Other than that, Dr. Hawk says she's running out of excuses to keep Delaney at the hospital.

Almost there...

Another good day for Delaney. She started by pulling out another feeding tube (second day in a row) and did so well at bottle feeding that she still doesn't have a tube in. I think she's ready to be done with the hospital. She also doesn't have an oxygen supply any more, and she's doing just fine without it. All she has left are the monitor wires.
The docs are optimistic about her progress and are thinking that Saturday sounds like a good day to fly free. Once Delaney arrives home, she's basically quarantined; no supermarkets, malls, etc until about April.

Happy day

Delaney transferred back to St. Elizabeth this morning. The NICU staff was happy to see her again and put up a little welcome back sign for her (they also gave her the best room in the house).
Right away she did a whole bottle by her self, which is great progress. The next two feeds weren't quite as good, but we're definitely moving in the right direction.
Dr. Hawk was really happy with the latest X-Ray, and said Delaney's left lung looks normal-sized, so that means the sequestration didn't cause it to be undersized. She also said that she doesn't like to give concrete estimates as far as length of stay, but she did say we shouldn't bring any Christmas decorations. She may have been hinting at something...

The word is given...

Delaney's chest tube came out this morning, and the surgeon was all in favor of letting her go back to Lincoln tomorrow. We were sort of shocked, as we had predicted Wednesday at the very earliest. So this is good news, as we'll be able to concentrate on feeding from good ol' St. E's.

A great boon

I wanted to pause for a moment and talk about something that's been a great help to me, a great source of strength, support, and comfort in these somewhat trying times. When my mood was flagging, it was right there, ready to bring a ray of sunshine, a surge of hope.
I'm speaking, of course, of pie.
Tart yellow sweetness blanketed in white fluffy goodness,
encased safely in a petroleum byproduct clamshell.

O, Lemon Meringue Pie, what would I do without you?

Great News!

The Methodist NICU called a little while ago to let us know they had taken Delaney's ventilator tube out. That's great news, and a major step towards recovery and returning to St. E's, or, dare I say it, coming home. That's sort of jumping the gun a bit, because she still has to have her chest tube removed and she has to get back to eating and breathing and all that stuff, but a guy can hope, right?

Today was about recuperating.

Joe and I went to Omaha this morning (through the falling snow - very Christmas-y) and saw that Delaney is doing well. She is still on the vent, but the docs and nurses have been able to lower the stats on the vent steadily. She is still sedated and on pain meds, but isn't requiring very much and they started very small feeds via a feeding tube.

I have hopes that they will be able to take her off the vent tomorrow, but we have to see what Miss Delaney thinks about that. After the vent is removed, we can slowly start back in on the feeding and see how she takes to it the second time around sans sequestration. She was sucking on the ventilator tube in her mouth today which we are taking as a good sign. It means that the muscles were getting a work out and that she wanted to be sucking.

We're headed back up to Omaha tomorrow morning and hope to see those bright blue eyes open up.

-Jessica

The days are just packed

This morning the doctor called and said Delaney's chest fluid had returned, and wondered if maybe we wouldn't mind terribly much going to Omaha again to maybe undergo some surgery? So we went to St. E's, talked to the doctor, held Delaney, packed up the car and went to Omaha. By the time we got to Methodist the surgeon had booked his OR time so that he could get rid of that pulmonary sequestration. Surgery started around 2:40 and it was over by 4; Delaney came through with flying colors.

The surgery was done via scope, so we were very happy about that. The surgeon said that the sequestration was somewhat more substantial than he had expected, but it was external of the lung so it was easily removed. He believes the sequestration was generating the fluid buildups, so those should be taken care of, and there will now be less pressure on Delaney's left lung, esophagus, and diaphragm; all of that should make it easier for her to eat and breathe.

Right now she's resting up in Omaha and we've returned to Lincoln for the evening. Over night and into tomorrow they'll try and wean her off of the ventilator so she can get back to breathing on her own. The only time estimate they've given us is a week to two weeks, so we're not really sure when she'll be able to return to St. E's (hopefully sooner rather than later).

We're feeling fairly relaxed/relieved at this point. Delaney still has a fair amount of recovering to do, and there's plenty that could yet go wrong, but it feels like one big obstacle has been surpassed. Go Go Delaney!

Another good day

So despite yesterday's fluid removal and spitup explosion, Delaney still managed to gain almost 3 ounces. Not bad, and and she had some consistent feedings today as well. Not great, but improving. She also had some good burps, which I'm pretty sure is a prerequisite for joining the McMullen family.

As for the fluid, one of the docs says it's a result of pressure, which may point right back at the sequestration. If she gains that fluid again over the next week, then it's time to talk to the surgeons once more. I'm sure we'll get this figured out in no time at all. Really.

Jolly Old St. NICU

Busy busy day for Miss Delaney. She had an echocardiogram, an xray, an ultrasound, several good feedings, 20ccs of fluid drawn from her left side, a visit from Santa, and a very noisily-filled diaper.

The xray and the ultrasound had revealed that there was some more fluid built up on her left side, so they did a quick little draining (no chest tube this time). Dr. Hawk says this should make it a little easier for Delaney to breathe, and that in turn should make it a little easier for her to feed.

I got to spend a good chunk of time holding her, which is pretty dang cool; it'll just be cooler when I can hold her at home.

At the end of the day Santa was coming to visit, so we got Delaney all gussied up in her best Christmas outfit, which she quickly attempted to befoul. Fortunately, Santa's an understanding chap.

Tick Tock

They decided to put Delaney's oxygen tube back in, since she was working a little too hard to get that sweet sweet O2. She's continuing to gain weight steadily (if not as much as she should), but she still hasn't figured out the whole "working for her food" thing. She'll take a few sips, but that wears her out and she has to recuperate for a bit; that generally leads to outright sleeping. Nurse Jeannie showed us a few little tricks to get Delaney started (and to help keep her focused); she's been very helpful, and I hope we can put the information to good use. The clock is ticking...if Delaney doesn't pick up the feeding in the next week it's time to talk to the surgeons in Omaha again and see if it's time to take out the sequestered bit of lung. Nothing like a little pressure when you're only two weeks old.

Tree Day

We visited with Delaney today (and bought a Christmas tree too!) and Jess got to give her a bath. Very cool, but Delaney, once again, was not amused. Oh well, she'll just have to get used to it.
She's still improving with the feeding, and her oxygen supply was removed this afternoon.

I'm going to try and post a video here...hope it works...

Another day

More progress for Delaney. She did a little better at bottle feeding today, and got some play time with a pacifier. It kind of wears her out though, so she needs some more practice.

She got the remainder of her chest tube bandages taken off, which is good, but we also found out it's not a good idea to tick her off when she's already mad. After feeding she spit up some, and managed to get some in her nasal tube, which she did not appreciate at all. After the nurse got her cleaned up, she decided take off Delaney's bandages; of course, that hurt, and that really torqued her off, so she spit up some more. We finally got her all put back together, but I'm pretty sure we're all on her list now.

A calmer day.

Today was a good day. Delaney spent the day sleeping and trying to eat by mouth. Much more 'normal' baby stuff! It's really nice to just be concerned with learning how to eat and not worrying about the diagnosis or what the next step is.

Doctors say that preemies have a hard time learning to eat because they don't have the strength in their cheeks. Also, she's had so many tubes and uncomfortable things in her mouth, it may be hard for her to want something in her mouth. We just need to give Delaney some time to mature and learn. Then we will be able to bring her home!!

Thanks to everyone who's been reading and commenting. It means a lot to both Joe and I to read your words of encouragement.

-Jessica

On the Road Again...

Delaney is back in Lincoln now, at St. E's; we're glad to be back. All the nurses so far have commented on how she's a different baby and that they're happy she's back. She's gone from a bundle of wires and tubes to a bundle of baby. All she has left are a feeding tube, a nasal oxygen supply, and various sensor leads.

Today we tried some bottle feeding, but she's a little rough at that. We took turns holding her and generally just hung out with her.

The big goal now is to teach her to eat; if she can feed and keep her weight up, she'll be able to come home, even if she has to bring an oxygen supply with her. We really hope to have her home by the holidays. Fingers crossed!!

Must go sleep now.

Things change...

...when you go to lunch.

When we got back from lunch a case worker was waiting to let us know that they had arranged for Delaney to be transferred back to St. E's tomorrow. Very cool, especially because I only have enough shirts to last through tomorrow.

Your Google term for the day is...

Pulmonary Sequestration.

That was the diagnosis after the CT scan. Basically, it means a little chunk of Delaney's lung decided to try and set up shop on its own; it's happy to get its own blood supply but it really doesn't feel the need to contribute by oxygenating any blood.

So yesterday afternoon we came to Omaha; Delaney came in her very own ambulance, and was accompanied by one of our favorite nurses. After the surgeons took a look at her (several hours later), they decided it would be best to get her off the ventilator and see how she breathes and feeds over the next three days. If she doesn't do well, they'll operate now-ish. If she does do well, they'll hold off operating for six months. The reasoning is that'll give her time to grow, and it'll give the surgeons more room to work.

So that's fairly good news, in that we know more about what's going on, and we're starting to get a timeline in place. Now for the excellent news...before we left Lincoln, Jess was able to hold Delaney for the very first time. It was a big moment, and probably would have been too much for the Mrs. Flubbles in the audience.
The second bit of excellent news I already touched on...the ventilator came out! Delaney looks different (and happier) without that thing taped to her face. She tried really hard to cry, but she just didn't have her voice yet. She did sort of quack, though. We heard a little bit of her voice this morning, so she's progressing.
The third bit of excellent news is that after the ventilator was removed, I got to hold her. Yay me!! Very cool.

Mom and Dad McMullen arrived late last night and got to visit Delaney this morning. Dad's pretty sure Delaney flipped him off.

Right now we're just in waiting mode...waiting to see how she does without the ventilator (so far she's kicking tail). That little girl's stronger than Chuck Norris and William Adama combined.

Spa Day

It's Sunday, and I stayed home again 'cuz of my gunky cough, but Jessica and Wayne & Janice went to visit Delaney and got some more good news.
She has transitioned to the portable ventilator, which is necessary for her to get her CT scan, scheduled for tomorrow. When they walked in, she was receiving a respiratory treatment, or, as adults would call it, a nice massage. She's not receiving any extra oxygen, and she's peeing & pooping like a champ. Very good news, with tomorrow being the big day.
Wish her luck!

More good news than was expected!

We had an ice storm this morning and I was worried that we wouldn't be able to make it to visit Delaney today. For my first day away from the hospital - not what I wanted to hear.

The ice melted off by mid afternoon and we made our way to St. E's.

Nurse Julie gave us great news as we walked in... ALL 3 CHEST TUBES WERE REMOVED!

On Friday night we were told that IF the night went well two of the tubes would be removed, so to come in this afternoon and hear that all three were gone made me very happy. With the tubes out, Delaney can now be swaddled and I think she looks much more comfortable.

They added a few blue lights under her blanket to fix a bit of jaundice and that's what the blue glow is.

She is still on the ventilator but the settings are steadily getting better. I'm very hopeful we will be able to make it to the CT by Monday and then we can decide what plan of attack to take. You know me --- I'm much more comfortable having a plan for forward motion!

It's amazing how much life can change (and change and change) in such a short time.

-Jessica

Home

Jessica got to come home today = good
Delaney did not come home today = bad
Wayne and Janice arrived = good

We took Wayne and Janice to the hospital so Delaney could meet her maternal grandparents, and we had a really good visit. Delaney was pretty active, kicking off the covers and showing us her eyes again. Nurse Ashley let Jessica take Delaney's armpit temperature and we both got to change her diaper. Ashley was optimistic that the two chest tubes that have been turned off would come out tomorrow.

All in all, a pretty good day.

B Day + 4

We had some more positive movement this morning!

Two of the three chest tubes have been turned off. They are all still in place, but are not actively being pumped. This is the first step to having them removed. This also puts us a step closer to moving to the other ventilator.

Delaney has been very active this morning and kept trying to kick her covers off. =) The nurse said that she must be feeling better to be so active.

I am being discharged today and my parents are coming this afternoon to help out and to meet Delaney. It will be hard to leave her here, but I guess I will have to keep focusing on the fact that more answers will be coming soon.

Thanks to everyone for your good thoughts and help. It is very touching to have so much support.

-Jessica

Oooo!

Addendum to previous post: She opened her eyes!! And man, did she look stoned! Still, it was pretty cool.

Update

We spoke to Delaney's doctor tonight, and she showed us some X-Rays, comparing Monday night with tonight. Pretty encouraging, and really interesting to see the changes with our own eyes.
Her right lung looks like it's pretty much ready to go, but her left lung still has..."something"...in the lower half. It's not fluid, and an ultrasound was unable to determine if the "something" is just collapsed lung tissue or if it's a mass of some kind. They're going to try a CT scan to see what's up;that could possibly take place this weekend. If it's collapsed lung tissue, that can be fixed here. If it's a mass, then Delaney will be headed to Omaha for surgery. Not really the course we want to follow, but if it works, it works.

Overall, I think the doctor is feeling pretty positive about Delaney. Dr. Hawk has gone from worried about her survival (Monday night) to stymied about the cause of the lung issue (tonight). Even with the uncertainty about the lung, we're feeling pretty optimistic.

B-Day +3

I added a little slideshow in the right column. Click on any of the pictures and it'll take you to the Web Album.

Little girl just keeps getting better. They've taken her off the nitric oxide, and one of the chest tubes may come out on Saturday. She's still on the ventilator but she's doing most of the work now. Jess said they gave her a little pacifier this morning and she sucked on it for a bit; she's been showing a little more activity lately, and I'd say that's a good thing.

B-Day +2

We just came back from the NICU and Delaney is still chugging right along (no, that's not a ventilator joke). Her blood gases continue to improve and the staff is continuing to wean her off the oxygen and nitric oxide, in preparation for breathing on her own. I posted a couple more pictures...enjoy!

It's frustrating, because she looks like she's healthy, she looks like she's ready to go, but she's just not quite fully ready yet. She's in good hands though, and we're encouraged by the reports we're getting. We also appreciate the comments and all that positive energy out there, it really means a lot to us both.

She's our little Thanksgiving baby, our little pink turkey.

Here We Go!

Everybody give big Aloha to the newest member of our family, Delaney Jeanette McMullen.
Delaney arrived yesterday at 6:33pm via emergency C-section, weighing in at 6 lbs on the dot; she was somewhat earlier than we expected (6 weeks).
Mother and baby are doing well; Jess is still recovering from the surgery and Delaney is resting comfortably in the St. Elizabeth NICU. She's on a ventilator, 3 chest tubes, and assorted IVs, and seems to progressing steadily (albeit slowly). The general consensus is that she's doing very well, given what she's been through.
So what precipitated all this? Well, Jess had been experiencing some fairly substantial swelling and some strong contraction-like pains, so she moved her regular doc appointment up a couple of days. At the appointment, Nurse Jeri was starting to become concerned about the possibility of preeclampsia, so it became likely that Jess would spend the night in the hospital for observation. After an ultrasound revealed fluid in Delaney's lungs, that changed to "you'll be going to the hospital and you'll be having your daughter tonight." So we went home, packed a bag, went to the hospital, and boom had a baby.
So right now we're just waiting for status updates (which seem to get relatively better each time) and working on recovering.
Pictures are available after the jump, and I'll try to post updates to the album as we get them.

DelaneyJeanette

That's no moon...

...it's a baby girl!

So we had our midpoint ultrasound, and it looks like Future McMullen will be a girl.



That, ladies and gentlemen, is a McMullen-brand big toe.

Decisions, decisions. Suck the thumb, or don't suck the thumb?

Classic profile...what a cutie.

So now we know it's a girl, and that gives us a little better focus as we look for a name and work on decorating the nursery (hint: it will not be pink). I'll have to think of some kind of Hawai'i/Star Wars theme. I'm sure that won't be a problem...

Whoa...that was wierd. It was like a million voices suddenly cried out in unison "Loser!".


We'll keep you all updated as we go along, and I'll try to put this blog to a little more frequent use, so set your bookmarks!