Life after the NICU

Let me just start out this post by saying YOU DO NOT KNOW TIRED UNTIL YOU HAVE HAD CHILDREN. You may think you know tired. YOU. DO. NOT. I don’t care what anyone says. WOW. These last few days have been surreal. I think everything feels normal. That I’m a Mom. I have a baby. WE have a baby and she’s sleeping right over there. And that’s where I start freaking out. We have a baby!! Anyway. The last few days have been a bit of an emotional roller coaster for me. I should have been through this all when we had her but now that she’s home, it’s a different story. She is the most adorable little girl! Basically, my days consist of NOT sleeping when I should be sleeping, feeding her (she has kind of made me a little schedule), and sitting around holding her. She loves to be held. She won’t let me put her down, which is strange because she was not held this much AT ALL in the NICU. It’s nice because I love holding her every minute of every day (Clint too..) but we don’t sleep. Simple as that.

Sunday = Rooming In

I posted a little bit on this day but I never got around to posting how I felt after it was all over. I heard every little squeak and squirm and little cry that came from her crib. She’s a grunter and I didn’t realize this until Monday morning. I got an hour and a half of sleep that night. Clint got a little bit more than I but we were both pretty much running on empty come Monday morning. During the day on Sunday, the Praxair man came to the hospital to teach us how to use the home heart monitor and the oxygen tanks. This is where I started freaking out. This machine scared me TO DEATH. I was so afraid I would bump something and every light and buzzer would sound and something bad would happen with Darbi because of my clumsiness. Of course, that’s not the case and I LOVE that we have the monitor and that she’s on a bit of extra oxygen. One nurse explained it to us in that if something bad were to happen; 1) We would know about it already because of the monitor and 2) we don’t have to wait for the paramedics to get here to administer the oxygen because we already have it! If she’s not doing so well and her skin coloring is a little off, we turn up the O2 and she’s better. Very reassuring. AND on those nights where she is sleeping so soundly that I’m wondering whether or not she is really sleeping, I just have to look at the monitor and I know we’re good. I don’t rely solely on the monitor but it is nice to have it around.

Monday morning

We started the day with our nurse and Darbi’s Pediatrician coming in to discuss the plan for the day. We cleaned up our room, took Darbi back to the nursery, and went to lunch with my Grandma. We came back from lunch and I went to get Darbi dressed in her super cute “coming home” outfit and she was too big for it!! I was so sad but ecstatic at the same time!! I had nothing else to put her in so we had to leave in a NICU onesie. :( She did have the socks on that I brought, just no pants. Oh well. After we had packed everything up, we took our final walk through the NICU. Our nurse walked us back through the entire thing to say goodbye to everyone. It was really sad! Plus a lot of our favorite nurses were not there that day..

And the drive home was so scary! I noticed every dumb thing that everyone did on the road. I just wished they all would keep like a 30 foot distance! Anyway, that night went fairly well.. I was an emotional wreck because it all finally hit me that Clint and I are the only ones who are here in case anything happens and I was SCARED TO DEATH! On top of only getting a touch of sleep, it only added to the drama.

Tuesday was pretty much the same. We just layed around the house waiting for her to wake up so we could play with her.. and sleeping as much as we could.

Wednesday = Doctor appointment day

We started out the day heading BACK to the hospital for her Audiology test. She failed her first hearing test (which is common) so we went back for another go. She failed again. But, not to worry.. the nurse checked for fluid in her ears and she said that’s probably all it is. We have another check in a month. It really wasn’t so weird to go back to the hospital. It was weird, however, to push a stroller around the hospital! It took us about 40 minutes just to make the 15 minute drive to the hospital! I kept forgetting things.

After the Audiology appointment, we walked over to where Darbi’s eye doctor’s office is. It’s about a quarter mile away. I stepped out while they were doing the procedure but when I came back in the Doctor was pleasantly surprised! He said…. probably… most likely… NO. SURGERY. It is unbelievable for a 23-weeker to not need eye surgery. We have another appointment in a week but he said the ROP is regressing while the eyes are progressing in a positive way! I know they say this every week that she may not need surgery but he was very very confident that there would be no need!!!

Starting Tuesday night, Darbi has had an upset, gassy tummy and we didn’t think too much about it. Then, she started to have runnier (is that a word?) stool. So we got a little worried and called our Pediatrician. They had us come down Wednesday afternoon to just check her weight to see if she was gaining (5 pounds 11 ounces now!) and we have to take down a stool specimen to the labs for testing. She’s probably alright but Clint and I won’t let anything get passed us.

So, now I’m trying to get back into a routine with her. It’s hard with no sleep of course but it’s easier to stay in my pajamas and not go to the hospital 3 times a day. :)

We are loving EVERY MINUTE of her being home with us!!

Thanks for the happy welcome home Ashley & Adrienne!!

On our way home from the hospital

Hanging out on Mom & Dad's bed

Darbi's first bath at home

After...

Coming 16 1/2 weeks early,
gaining 5+ pounds,
countless IV's,
numerous PICC lines,
2 brain bleeds,
chronic lung disease,
1 esophageal perforation
2 PDA ligations,
10+ eye exams,
4 different breathing machines,
1 trip to Primary,
24/7 pumping sessions,
many, many, AMAZING nurses (and doctors),
bottles, boobs, and stinky diapers
and
124 days in the NICU...

Darbi has come home.

Rooming In

As I type this, I am sitting in bed (at the hospital) and Darbi is laying in her crib next to me sleeping! We got here around 8:30 to start and she was STARVING. As soon as we got settled in here, we fed her and she was so gassy! She would not stop crying. I was thinking.. Great.. this is going to be a l-o-n-g night! But she's asleep now and I've got about an hour before I need to feed her again. I hope this goes well. Before we came I was stressing major! It terrifies me to know that it's all us. Yeah the nurses are down the hall tonight.. but not tomorrow night! Oy. So the home health medical supply man came to see us today with Darbi's heart monitor and oxygen tank. I think it was after talking with him and having him teach us everything when I started to kind of freak out. I don't know how you Mom's out there go home after having a full term baby! You get 3 days.. sometimes less with the nurses! I've had 4 months and I'm TERRIFIED!! The monitor has 1 light that blinks for each time her heart beats and 1 light for each breath she takes. If her heart rate goes above 230 or drops below 70, it beeps LOUD or if she doesn't take a breath for 20 seconds... or if the leads are placed wrong. They are only stuck to her with a little jelly and strapped on with a foam velcro strap. They move so easily. We've already had it beep at us 3 times in 2 hours just because they've moved. UGH. And oh I'm tired.. and I don't think I'm going to be not tired for a very long time.

UVRMC = Still Awesome!!

Another reason why I am sad to leave the NICU:

Her feet are GI-normous in this picture!!

Linda, our favorite dress-up playin'-picture takin'-night nurse had a little fun with Darbi the other night for her 4 month birthday! She said that Darbi was pretty good for the spur-of-the-moment photo shoot until the end when she got a little fussy. The only thing that would calm her was her binky.

SUPERGIRL'S ONE WEAKNESS: her Kryptonite Binky!

So much to do!

I have no time to do anything and it's all happening SO FAST!! This discharge thing just creeps up on you!! Today, no surprise, she ROCKED her feedings again. For her 4:30 feeding (Jen you will appreciate this...) she took 78!! 78?!?!?! My chunky monkey likes to eat!! Tomorrow is the 24 hour on demand and then Sunday will be our Room In day. I still have to:

- clean/vacuum the Honda
- sort junk in hallway
- make/write thank you cards
- move crib into bedroom
- buy more soap/Purell
- sort/do laundry
- rearrange bedroom
- put away Darbi's gifts from the showers
- move milk into freezer
- take pictures with our favorite nurses
- clean out the fridge
- clean my house

ACK. No time no time no time!! I'm really not too worried about it though. Once Darbi comes home, I will have all the time to do it.. (when we're not snuggling!) It kind of hit me hard today that we really are leaving! Darbi's Primary day shift nurse, Shelly, doesn't work until later next week so this really is the last time we will see her for a while!! We love Shelly and it will be so weird not going to the NICU every day. If we were still up at PCMC, I could care less about leaving because it's so dang far away. Down here, it really is a second home to us now and we love the people we get to see everyday! Oh I'm getting kind of sad.. We will for sure come back and visit though!!

So Darbi has an umbilical hernia. It's actually kinda funny. Clint hadn't seen it until a few days ago and when we took her pants off to change her diaper he saw it and freaked out!! It's like the movie Alien! They said it will probably need to be surgically fixed down the road but it's nothing to worry about and it may even fix itself in time. It doesn't hurt her at all but it looks so crazy!!

Round 2 - 12 or 24?

After a very successful day of feeding, we will probably go for Round 2 tomorrow. Either a 24-hour on request feeding or another 12-hour. I've got this thing with Bountiful Baskets on Saturday morning. BTW- If you live in UT or AZ you've got to check this out. For $15 ($18 the first time) you get a basket FULL of produce!! It's always a random mix of produce and you really don't know what you are going to get but it's always top quality produce! PLUS the bread?? So good. I swear by it!

Anyway, when the nurse was bathing her tonight around 11, she was sucking on her knuckles way hard (which was right before her feeding). She's SO ready to come home! ACK. My house feels too dirty to have have a baby like her coming home! I need to clean like crazy I think.. Clint and I went to get our fajitas.. and the Grill was closed. :( We were too late. No fajitas. So we went to see Paul Blart at the Dollar Theater. DUMB but dang funny.. That guy in that movie... I forget his name. FU-NNY!!

Clint's birthday is on May 9th and we usually do a movie thing all day at the theaters but this year.. we will be doing things a bit differently. We're thinking of just staying home and watching movies all day (with Darbi!) but we have recently gotten hooked on Chuck. And by recently, I mean we just finished watching the pilot episode... like 5 minutes ago. I think we will be having a Chuck marathon. :) That show is funny! And catchy!

12 hour update

I wanted to give a quick update on how my day is going so far. I've been here since 8AM, and I've only fed her twice! It's almost 3PM!! She did WONDERFUL with both feedings so far. At 8, she was starving, ate 60ml (all she needed to get was 48ml) and slept right up until noon! Then I fed her at noon, and she took 53ml! Now she's asleep and I'm just waiting for her to wake up. We are going on 3 hours and she's still sleeping. So far so good! We will see what the next hour brings but I'm hopeful! :) And I'm hoping she'll gain mega weight tonight! I know she's burning more calories with all these back to back feedings but I can hope!

AND it's fajita night in the cafeteria and they have amazing fajitas.. Actually.. they have amazing fajitas according to Clint and my Mom because while I was in the hospital, one night my Mom went and brought back her and Clint dinner and that's what it was. I was still on a "soft foods only" diet and I couldn't have any. :( So I'm excited for tonight! AAAND, we will be going to a movie tonight as we may not get the chance here soon.. And maybe tomorrow night. :)

Feels kinda weird.. especially without a baby

Look at what I brought to the hospital today! :) We won't do the car seat test just yet.. maybe in a day or two. BUT STILL.

It all happens so fast!

Oy.. I have so much to report!! It has been a crazy 2 days here at the hospital.. I guess not crazy. oh well.. ANYWAY. Yesterday for her 8AM feeding, she did awesome! She took her entire feeding and we didn't need to give her any extra! I was super excited! I figured she'd be tired for her 2PM feeding but she did alright. She took about half so I was happy. THEN.. for the 8PM feeding.. she took 1 1/2 times her normal feeding amount!!! She was really hungry. Then.. the nurse fed her a bottle for the 2AM feeding and she took the WHOLE THING!!! So when I came today, I had pretty high expectations. 8AM - full feeding. 2PM - full feeding. 8PM - FULL FEEDING! So because she ROCKED it.. the nurse suggested we do breastfeeding back to back. So 8PM AND 11PM. Mostly to see how she does and if she does well, we will do a 12 hour on demand feeding tomorrow. That means, I come in at 8AM and stay until 8PM and feed her when she wakes up and is hungry. It's going to be a long day but I'm excited.

So right now, Clint and I are sitting in the waiting room watching the basketball game while we wait for 11:00 to come. I'm sure she'll do well because she's had 7 successful feedings IN A ROW. Sorry for all the CAPS. I'm feeling very expressive right now.. if I were telling you this story in person, there would be a lot of hand flailing! I'm very excited!!

SO. After this 12 hour on demand feeding tomorrow, assuming she does well, we go to 24 hour on demand feeding (possibly Friday or Saturday) and assuming she does well with that, we ROOM IN with her.. like she is actually in the room with us and we take care of her as if we were at home (possibly Saturday or Sunday) and if she does well with that... WE. GO. HOME. Possibly Sunday or Monday. I. AM. FREAKING. OUT. This is all assuming she does well.

SO, I'm anticipating at least a week from Friday to a week from Sunday. I don't want to get too excited about this. I think we are still waiting for the ok from Ms. OT to clear us on bottle feeding and she doesn't come back from vacation until next Wednesday.

BUT, the eye doctor came today (and all of the above is based on what he says about her eyes today..). HE SAID.. that her eyes look the same. If not the same, BETTER. That's right, BETTER. Word for word, he said to me, "We will probably be seeing you next week in the OFFICE." That means as an OUTPATIENT. I know right??? I will be going from my house, with her, to the eye doctor. CRAZY. I still can't seem to wrap my head around this. Every nurse that comes by (of course knows who we are...) and says "How's Darbi these days??" and with a huge smile on my face, I blabber on about how AMAZING she is. It's too hard not to brag...

So today, after her 2PM feeding, the Nurse Practitioner (Wendy) came in to do her rounds on Darbi and I could hear her outside of the curtain asking the nurse about me and Darbi and saying that she hasn't seen Darbi before. She came in and the picture of Darbi dressed as a princess was hanging on the wall and next to it, it said "Darbi at three months". She was confused because she left on January 19th to take her maternity leave which means that she would have been around when Darbi was born (January 1st) which means she would have seen her. SO, she was asking me about which bed space was Darbi's when she was born. I started to explain a little bit and I could see the light click on in her dead. Wide eyed, she looked at me and slowly asked, "Is this the same baby who had her esophogus punctured?" I proudly responded "YES!!" She said that she was there the day it happened and was actually watching the procedure and saw the minute they had punctured it. She said she remembered it because it was such a horrible day. She remembered thinking that this little baby was going to be sent to Primary and she knew she would not see her again because she would probably not make it. She could not believe that this was the same baby!! It made her day and gave her chills when I told her about how when Darbi got to Primary, the hole had healed itself (after one extremely spiritual blessing given by Clint). Darbi really is our little miracle.

So tomorrow, I will be hanging out with the Darbster all day and watching a lot of King of the Hill on my lappy, and also taking my CPR infant training course from my nurse. SO exciting!!

She has HAIR!!

When she's far away you can't tell still.. BUT in the right lighting.. from the right angle.. SHE HAS HAIR!!!

Shower #3

My Grandma Linda and my Mom got together to throw me one final shower before Darbi comes home. We had it on my due date (in hopes that she would be there... to look at from a distance). We had a really good turnout and it was a lot of fun to get together with all of my Mom's extended family. It's only every few years that I get to see these women and it's fun to hear them talk about the good old days when they grew up with my Mom and all the fun memories they have of my Great Grandma Pearl. We had a fruit tray, a veggie tray, salsa (super yummy.. it had 5 ingredients and salad dressing was one of them!!), chicken salad sandwiches (my most FAVORITE thing!!), and carrot cake! I got so much stuff to help us with Darbi; TONS of clothes, a bathtub (we don't have a tub in our house so this was perfect!), and our stroller!! I think we're almost ready to bring her home! Just a few more small things and we're all set! I'm getting so excited! I haven't gotten the pictures from my grandma's camera yet so here's what I have.

Being 40 Weeks

It's weird to imagine myself pregnant still. With my due date being yesterday, I've imagined time and time again what it would be like to be one of those women who are pregnant and expecting right around finals. Although I'm not in school anymore, Clint is and we were prepared to tell all of his professors that I would possibly be going into labor during finals week. Just so that we were all on the same page. This was all last October when we talked about how we would deal with expecting a baby in April. It seems like so long ago. We've come so far and it seems like we've never not had Darbi to think about and visit at the hospital.

I was holding Darbi tonight after her feeding and looking at how far we've come and how big she is now and I cannot even fathom pushing her out of me!! OUCH. I admire those women who give birth to 10 pound babies. WOW. Clint was almost a 10 pound baby and if Darbi made it full term, she could have easily been huge. I guess it's a blessing... a bittersweet one. The more I think about it though, I am so grateful that Darbi came early with as little complications as we have had. I have had the chance to really get to know her and Clint has also had that chance. It's something we can both share. We get to stare into her beautiful eyes every night and tell her how special she is and how much we love her. I know that there is that bonding experience that happens in the womb in those later weeks that I will never have with her but I wouldn't change it for anything. She is such a special little girl who has taught us so much and I am so thankful for her.

40 weeks TODAY

How do I look?? :) Today was Darbi's original due date! From here on out, she will now have an adjusted age which is in reference to her original due date and we will be measuring her development from that point. Baby shower pictures to come later tonight!

Darbi's first bottle

Today we skipped our 3rd breastfeeding session to try a bottle. Ms. OT wanted Clint to give it to her so my Mom and Grandma met us there to document it all! Get ready to roll your eyes.. because yes. My daughter is amazing. We all know it. It's hard not to get a big head about it! I'm sorry. She ROCKED the bottle. The bottle had 50cc's in it and she ate 40 of them! We considered that her entire feeding and called it a night. We didn't have to give any through her NG tube. We used a nipple that has a lower flow (smaller hole) so that it didn't choke her. The milk comes through easier in a bottle than it does through me when I breastfeed. She doesn't have to work as hard. I think she only choked twice but we handled it nicely and I don't think we will have any major problems with it! Tomorrow we will try again. So it's breastfeeding at 8:00 AM and PM and bottle feeding at 11:00 PM. We are skipping the 2:00 PM feeding because my Grandma and Mom are throwing me a shower! It's still weird to go and not have a baby and not be pregant but I, at least, have real pictures of my baby at my shower's where everyone else doesn't have that. So it's alright.

Sorry the pictures are blurry again. The lighting is really bad when they pull the curtain around us so it's the best I could do.

Times her birthweight by 5

We have finally hit 5 pounds!! And just barely too. She is 5 pounds .5 ounces. I was brave today and asked one of our favorite nurses (who was charging today) when to expect Darbi coming home. I was thinking maybe 2 weeks? She said to plan on 4, at least. :( That way, if she comes home in 3 1/2 weeks we'll be happy. I was kinda bummed. That means we're into Memorial Day almost and I was sure she'd be home long before then. But, good news, we start bottle feeding tomorrow!! That means she's doing well enough with breastfeeding that it shouldn't confuse her to try a bottle. We will do it tomorrow night at 8:00 and Clint's going to give it to her. He will be doing most of the bottle feeding as I've got the breastfeeding thing down. They eye doctor came yesterday and said that he sees a spot on her right eye that has him concerned it may be turning into Plus Disease but not concerned enough to do surgery so the next check will likely be next Wednesday. I had the nurse tonight take a picture of me and Darbi with my camera phone because my camera battery was dead.. Happy 5 pounds Darbi!!

Smiles for everyone

In a crib FINALLY

Day 110 and we're in a crib! She's doing really well in it too. No fussing or anything and they have her laying on a Boppy to help with the acid reflux. Tonight or tomorrow night she is supposed to have a PCG5 test which will test 5 different things to make everything is doing alright. It tests her acid reflux, and also something to do with Central Apnea. Those are the 2 major things.. but I can't remember the rest. This is one of the last things we need to do before we come home.. also on the list is a CPR class, the Car Seat test, another hearing test, and... I can't remember.



BUT we've got a lot done! The feeding thing is posing problems though. Sunday, we went to 3 times a day feeding. Sunday morning, mom and I came at 8 and she slept through the whole feeding. ARGH. Oh well I said.. We'll do better at 5 and 11.. Did we? Well not for the 5:00 feeding. 11:00 went alright. So today I got up and went in at 8:00 am again.. SHE SLEPT. 2:00 - SHE SLEPT. 8:00 - SHE SLEPT!!!!! Really?? What's going on? I asked the nurse and she said that she isn't sick so they are thinking it might possibly be a growth spurt. Most babies eat more through a growth spurt but sometimes special NICU babies tend to sleep more.

Her hemoglobin levels have been a little bit low lately so that can also cause her to be more tired than normal. The nurse said that the doctor will probably increase the amount of iron she gets and that will hopefully help. I'm wondering if she is just backwards on her schedule; asleep during the day, awake at night. I'll just keep at the schedule I've got going and hopefully she will turn herself around.

And.. eye appointment tomorrow (or Wednesday... who knows, maybe Thursday).

OHHH!! Clint surprised me with a fun present today! :) He told me that since we found out we were pregnant, he's been putting a little bit of money away to save up for a "thank you for having my baby" present and when we had Darbi early, that got put on hold. He remembered the other day and knew I'd been eyeing this diaper bag for a little while.. He surprised me with it today!! I LOVE it!! It hooks right on to the stroller and it even matches the stroller! Thanks hun!

It's the green/brown one. Not the polka dotty one.

Daddy's Ring PART 2

We'll take more soon and ignore some of the blurriness but I had to post this.

This picture is when Darbi was about 3 1/2 weeks old and weighed about 1 pound 5 ounces. Clint's ring was able to fit all the way up her thigh even though the picture only shows it up to her knee.


These two pictures were taken on Saturday (3 1/2 months) and she weighed 4 pounds 14 ounces. We've come a long way. Clint's ring won't even fit around her foot!

Best roommates ever!

Baby shower #2! Seriously the cutest thing ever!! Becky, Cheryl, and Linds (3 of the 6 original 104 A. Richards crew) threw me an "Early Bird" shower on Saturday and everything was so cute! They are all so creative and I have to share some of the dang cute ideas they had.. LOVED IT!! Thank you guys!!!

Acckk! I don't know where all my pictures are! I thought I got them all from my mom but oh well.. here's what I do have!

Cheryl had to leave early for a Final.
Audrey, Linds, Becky, & Grace
The babies of the shower!! They were honorary guests since Darbi couldn't come.

Grace - Darbi's BFF


Crew (he's up to 9 pounds!!) - Darbi's future boyfriend. :)


Those sweet eyes are wishin' they coulda been there!

Heavy Drinker

We are 2 ounces away from 5 pounds! Tomorrow is the night.. I feel it. We will pass the 5 pound mark tomorrow. (I hope..) And I'm telling you.. For being as small as she was, I really don't think there is any baby who has caught on to everything as well and as fast as Darbi has! She is an amazing little boob sucker! Ms. OT said that once she starts taking milk into the double digits consistently, we can try bottle feeding. She's going to be taking 2-3 bottles here at home a day because she needs a few to be fortified with the vitamins that she didn't get during the 3rd trimester. One of the requirements to get her home is she needs to take 75% of her feedings from either me breastfeeding or through a bottle. We are getting closer! So the reason for all of this rambling.. She has exponentially increased the amount of milk she is getting from me!

Yesterday morning: 15 grams
Yesterday evening: 25 grams
This morning: 19 grams
This evening: 36 grams

36?!?! YES!! That is 82% of her feeding!! I just pushed the last 8 grams in myself through her NG tube! She didn't even need the pump because there was so little! Ms. OT was super excited! She's the one who makes the call on when we go to a bottle so this is really good!


This is Darbi's new favorite way to sit after I feed her. She just cries and cries when I have her laying more flat. She's getting the milk in faster than she is used to so of course.. she gets gassy. She burps a lot throughout the whole feeding but I like snuggling like this so it's ok.

The eye doctor came yesterday and said that he will come again to check her in a week. She is still the same and now that he wants to come in a week instead of 3-4 days is a good thing. In his report, he wrote that in 2 weeks he wants to -----------------. He wants to what, you ask??? I have no idea!!! NO ONE can read his chicken scratch.. It's just bad doctor scribble.. it's literally gobs of X's and O's.. It's another language I swear! So I'm thinking if she's still the same in 2 weeks, he will either just do the surgery, or call her good and out of the woods and say we're ok to just have weekly checkups in his office after she comes home. We'll find out next Wednesday what the secret message in Darbi's file says...