Friday, March 26, 2010

Happy Weekend!

It's been a great couple of days! Sofia did a complete 180 with her feedings. She is consistently finishing her bottle and doesn't fall asleep or refuse anymore! I'm not sure if she had a little virus or if the thyroid med is making a difference, but we are so happy with how she's feeding! She's a little feistier, which has kept us up at night a little more, but we would take that over how she was before. I really have to thank my mother/father-in-law for their help this past week. When Sofia was hospitalized, it really caught us off-guard when our lives were busy enough. I can't be in two places at once, so it was really helpful to have them taking care of the two at home while we were at the hospital. Thanks again!

We had a home care nurse come by today for their last RSV shots of the season. They obviously hated the shots, but I was glad to see their weights. Sofia was a meaty 6 lbs 7 oz (she was 5 lbs 11 when she was admitted to the hospital on Monday and discharged at 6 lbs 2 oz on Wednesday), Madeline weighed in at 6 lbs 10 1/2 oz, and Josephine was the big girl at 7 lbs.

This past week, ECFE (Early Childhood Family Education) came by and met the girls to get their initial evaluation. This is a free program to us to give them a head start in different areas of development (they'll work on PT stuff, oral stimulation for Josie, etc) so that they stay as close to on track as they can (important for preemies!) They were very impressed with the girls' strength and alertness. They are lifting their heads like 3 mo old even though they're only 2 weeks adjusted. They did not see any red flags, so that was a nice relief. I think they loved to meet our girls (they didn't get to meet Sofia yet, but they will soon).

We stole a couple of pics of Josephine while we were switching out her oxygen canulas. Don't worry NICU nurses, it wasn't for long ;) . Doesn't she looks so healthy and cute?!

Big yawn!
We took them on another walk that ended up being pretty short because it was colder than we thought. They are so cute in their little fleece suits. The hats they are wearing were made on a loom by Dan's grandparent's friend, Lee. Aren't those hats adorable?
Sofia had to wait in the bouncer while we got the others ready.
Josephine looking like an angel. She seems to be the most calm and I even see her being the wisest- don't ask me why, but maybe it's because she's gone through the most.
Madeline giving me her typical look in the pic below. I have to say, she is still the funniest one. She cracked me up so much a couple days ago... she would be sucking her pacifier, falling asleep, then would startle awake and start crying (and repeat) Also, when she sucks the pacifier and it would fall out partially, she would suck whatever part was in reach, usually just the tip. She was frantic not to lose it! I wonder if she'll always be the one to make me laugh the most...Add ImageAdd ImageMy parents are on their way to the cities as I type to help us out this coming week. This Tuesday is our first outing with all three for their eye exams, so help is crucial! Oh, if any neighbors are reading this, thanks so much for the meals this past month. It's amazing how people really reach out to help out neighbors. I will pass on the good karma when it's my turn. Well, thanks for reading and have a great weekend!

Wednesday, March 24, 2010

Sofia's Scare

I haven't had any time to sit down and update the blog... but on Monday we brought Sofia to the doctor again for another follow-up and weight check. She lost a whole two ounces, which really worried the doctor. She officially got the "failure to thrive" label. The labs that he got back also showed that her sodium was low (the doctor said he doesn't always trust their machine but he still had to listen to the results). He told us that we needed to admit her to the hospital to the general Peds floor. I felt like my heart sank into my stomach- I pretty much lost it right away.
We brought Sofia to the hospital that afternoon and right away they spent a lot of time trying to get blood from her and she was not giving any away. They also started an IV right away, but that was difficult too. It was heart-wrenching watching them try to find veins to poke and her bawling. All I wanted was to bring her back to the NICU, where we felt comfortable. The docs and nurses didn't know her! There are germs on the peds floor! I felt so helpless to my own daughter- what an awful feeling.

After some tests, we did realize her sodium was on the low end, but not as critically low as the clinic showed. We also found out that her thyroid gland was working too hard to make the hormone, so she has started some meds for that. She had a swallow study yesterday morning, which showed nothing abnormal with her anatomy or any aspiration. She did have reflux, so we put her on Prevacid. Happily, she showed weight gain on Tue and Wed morning. Earlier today, I was talking to the doctor about when we could discharge. We really wanted to get her home since no other tests were ordered. She really wanted the sodium to go up another couple points before she would feel comfortable to let us go- but she wasn't planning on running another blood test until the morning. I brought up re-testing tonight and she agreed.

We finally got discharged tonight at about 9:00 pm after the blood test showed her sodium level was adequate. I was so glad I pushed the doc because we really didn't want another night! I know that we are going to be keeping close tabs on her nutrition and weight gain from here on out. Hopefully the thyroid meds and the Prevacid make a difference. She also just could have had a little virus that will just run its short course. Nevertheless, she is HOME with her loving family. Hopefully for good!

Being on the regular peds floor made us really appreciate the NICU. Understandably, the ratio of nurses/docs to patients is not at as good on the peds floor and I just felt uneasy about all the sick kids that were around. Also, it was just so nice having our primary nurses at the NICU who knew our kids like the back of their hands. Three of our wonderful primaries came and visited us while Sofia was on the peds floor which was so nice. Thank you!

I really hope we are done with the hospital FOR REAL now. I know we have a ton of follow-ups and clinic appointments, but please, no more hospitalizations!

Sunday, March 21, 2010

Josephine is HOME!

We had our final discharge on Saturday and we finally brought our little (big) Josephine home! It was weird saying goodbye to all of the nurses and other workers at the NICU. We couldn't be happier, though, to have all three together again! Since the last posts had no pics, here are a bunch of recent ones....

Dan and I right before marching out of the NICU (and no one stopped us from taking her home!)

Josephine gives a sly smile in her car seat...
My uncle came all the way from Connecticut to meet his grand-nieces!

We had to put them all together pretty much right away. Order L to R Sofia, Josephine, Madeline. Josie looks so big!

Another group shot: L to R Josie, Madeline, Sofia (2 out of 3 being awake is not bad!)

Madeline enjoying their new bouncer from our friend Cristina!
A cute profile picture of Sofia
This afternoon I was taking a little rest break with Sofia and Madeline and they looked so cute with their hands together! (Sofia on left)
I had to include this picture of Josephine getting a nebulizer treatment because she loves to "help".

Our first complete family walk- Madeline in the Bjorn, the other two in the stroller.
The first night home with Josephine wasn't as hard as I thought it would be. During the night feedings we got them all fed and bottles washed in only one hour each feeding (not all that much longer than before)- and I'm sure we will get more efficient with practice. Luckily, we are still getting much needed help from both of our families. Have a great week!

Friday, March 19, 2010

Not Quite Yet...

Sadly, Josephine did not pass her scan last night. Apparently she had a lot of de-sats and apnea... Looks like she will stay on a low flow canula and she will be re-tested tonight on it. If she does well tonight we could take her home tomorrow. It's really disappointing that she has to be on low flow. All of the nurses and docs were surprised that she did poorly on the scan, but they do think it will probably be a month or less that she will need oxygen at home. This vocal cord problem keeps haunting us!

Today, I had an education class for home oxygen, G tube pump, and administering the nebulizer. Uftda! Too much! I wasn't that impressed with the educator but I think we will get the hang of it. One of our primary nurses taught me more today about the G tube which was helpful. I wish we could bring our primaries home with us!! We got to know them so well that it'll be weird not seeing them. Anyways, I thought I'd update this blah news- tomorrow hopefully!

Thursday, March 18, 2010

Josephine Home Tomorrow??

I thought I'd update on what's happening this week. The doctor told me today that they are going to do the scan on Josephine tonight. If she does well then we can take her home! Is it finally the day all three get to be together? We are so excited to have her home! We are crossing our fingers that she'll pass the scan! I'm sure she'll pass the car seat test because she is the biggest of the three right now. Dan and I will go to the NICU tomorrow no matter what to learn how to use the G-tube. Other updates on Josie are that she's about 6 lbs 9 oz and she is in ROOM AIR- no canula at all! While she was bottling, she was probably getting so much food in her lungs and that was why she was needing oxygen. I'm glad we figured that out even if it means G-tube. Sorry I have no new pics of Josephine- there will be PLENTY soon! :)

We are just a little worried about Sofia right now. We brought her and Madeline to the pediatrician to get a weight check and we found out that Sofia only gained ONE ounce since her last weight check 2 weeks ago (she weighs 5 lbs 14 oz)! We were already noticing that she doesn't seem to be as interested in the last couple of days to feed as she was before. She'll do fine for the first couple of minutes, then she will give us a grossed-out expression and refuse to eat anymore. The good thing is she does not seem to be ill in the slightest, but it is worrisome as to why she's ho-hum about food! The pediatrician (a different one than before) told us to offer every three hours, even during the night (what? no 4-5 hour stretches now!?) Of course, we aren't supposed to push her either or it could turn her off even more. We go back today for another weight check and to see our regular ped.

Madeline showed us she can really gain weight! She weighs 6 lbs 1 oz as of Tuesday (a gain of 10 oz in two weeks). She is still a voracious eater and it seems like she would eat all day long if she could. I recall being like that in high school and college (especially during track and cross country!) She is eating twice as much as Sofia during some of the feedings. We are happy about how Madeline is doing.

Look at us with our Baby Bjorns! We think they absolutely love being in them on walks. We had to take advantage of the gorgeous weather since it's not here for good yet. All of the snow is melted here in the Twin Cities!
I'm really looking forward to this weekend- Josephine will probably/hopefully be home, and my uncle from Connecticut is coming to visit! He is the one who married Dan and I and even talked about our quads during some of his sermons. It's fun having family and friends meet the girls for the first time. Have a great weekend, everyone! I promise I'll add new pictures soon- I would take some now but they are sleeping, so I will wait until they wake up!

Sunday, March 14, 2010

Update on Josie

She is off the vent and on high flow! She is acting like her old self, plus she is getting small amounts of milk through her new G tube. Josephine couldn't wait to get off that vent! Yesterday she received some caffeine-like drug to jump start her breathing and it worked wonders. Plus, they switched the type of pain medication because the morphine might have suppressed her breathing. They will continue to wean her breathing support (we'll see if she will end up on oxygen at home, but at least we're not talking trach again). The doctors really do believe there was no infection which is a big relief.

What a gorgeous day in Minnesota! We had to get out for a walk with Sofia and Madeline. I think they enjoyed their Vitamin D! Take care, everyone!

Saturday, March 13, 2010


Josephine started having a lot more spells last night and early morning so they first switched her to CPAP from low-flow. She had another big spell so they had to reintubate her this morning. They are giving her antibiotics to be on the safe side, but they think she is just too sleepy from anesthesia or the pain meds to breathe. This was not fun news to hear this morning. The plan is to keep her on the vent all day, and if she is doing well, extubate tomorrow. They will wean her more gradually compared to yesterday (CPAP, high flow, low flow). She could even start getting small volumes of milk in her new G tube tomorrow if she is stable. This isn't the route we thought we were in for, but we are staying positive that this is very temporary. Thanks for rooting for our little Josephine.

Friday, March 12, 2010

Josie's Surgery

Josephine made it out just fine! She was intubated temporarily, but it was only for a couple hours. She then pulled the tube out by herself! She told them who's boss!
It was sad to see the tube in her stomach, but it really was the only way to go so she could eat safely. Thanks for your thoughts and prayers, everyone. Goodnight!

Send Your Thoughts to Josephine...

She is having surgery this afternoon to place the G tube. It's comforting to know that she's had surgery before and she handled the anesthesia, but surgery is surgery. Please send good vibes to Josie so she can have a speedy recovery and join her sisters at home!!

Tuesday, March 9, 2010

Happy "Would-Be" Birthday, My Dear Babies!

March 9, my official due date! I'm glad it's finally today, so I can read all those baby books (not that I have much extra time) to see what I can expect the first month! We've been told it will take a couple of years for them "catch up" from being preemies. So when their real age is a year, really they will only act like 9 month old babies. I do think they are ahead of what a newborn would be, though. They are pretty strong (with good head control) and already have their own routine. We are lucky so far with Sofia and Madeline on how easy going they seem to be. Sure, they don't love having their diaper changed, but we can feed them at night and put them back without having to lull them to sleep. They are usually content to just be in their cribs. (They get plenty of cuddle time during the day.)

We got some sad news about Josephine today. She had another swallow study because at the start of every bottle feeding, she spells (the rest of the feeding she usually gets a rhythm and does well). They were worried she is aspirating even though her last swallow study showed she didn't. I was there to watch the study and saw for myself that with the first swallow, she got the thickened liquid down the wrong pipe. I'm not sure if it goes in her lungs or where it sits, but she doesn't cough it up. This means we could be doing more harm than good when we bottle her. Looks like we're in for a G tube: surgery to put a tube directly in her stomach in order to avoid oral feedings. Luckily, the docs really do think that this would be temporary. We know she can swallow, but getting formula with rice cereal in her lungs is slowing up her chronic lung recovery and could even give her pneumonia. If we go ahead with the G tube, at least she would go back to getting breast milk. She would get another swallow study in a couple months to see if she gets better.

At the hospital on Sunday, Josephine's clothes got messy and the only outfit she had available was this preemie one! I had to cut the feet off because it was so small on her!
Look how cute Josephine is!

We have no idea what Sofia and Madeline weigh now. I miss not having those daily weight updates to reassure me. They both eat a lot so I shouldn't be worried. Sofia is probably over 6 lbs by now and Madeline probably just under. Josephine was 6lbs 4 oz the last we heard.

A lot of people ask if we see any personality differences yet. We think that Madeline is the funniest and the little spit-fire. She seems to be very aware of her surroundings and listens to everything. Sofia is easy going but once in awhile is stubborn while feeding. We usually have to wake up Sofia to eat while Madeline is crying for food. Josephine is the biggest sweetheart ever. She smiles a lot when we hold her and she loves to cuddle (they all love to cuddle though). She's pretty happy when she's awake. Who knows how their personalities will evolve through the years, but this is what I see right now!

Sofia above and Madeline below having some playtime on the floor.

Madeline in her fun swing! She doesn't seem to know what to think!

The girls having some tummy time. Look at Sofia with Dan and how strong she looks! It looks like she's doing back extensions.

Cute Sofia.

Another pic of Sofia: "Who's hungry?!"

One last little tidbit.... Dan and I took Sofia and Madeline on their first walk outside in the stroller! It was an ordeal getting them bundled up (probably overkill because it wasn't even that cold) and into their car seats and figuring out how to put the seats in the stroller. Somehow we managed, and had a nice walk around the lake by our house. There were so many puddles- it's definitely spring out there!

Alrighty, that was a long update! Have a great rest of the week, everyone!

Wednesday, March 3, 2010

We Survived the First Week!

I can't believe it's already been a whole week since Sofia and Madeline have been home. I have to say, it is harder than I imagined, but we love the experience nonetheless.

It's really sad not having Josephine home- we aren't able to spend all that much time at the hospital with her, but we manage to get there once a day. She has been taking more and more bottles per day of the formula with rice cereal. Currently, she is without the cannula. She's so cute when we go visit her- she smiles when she hears our voices. The doctor thinks she will be another week or more before she is ready to go home. She still spells sometimes while bottling. I want her to be all done with those before she comes home! I was hoping to put up an updated picture of Josephine but I forgot my camera! I will put one up when I can so you can see how cute she is!

We had two appointments for Sofia and Madeline on Monday (pediatrician) and Tuesday (eye). My parents were there to help get them there without incident. On Monday, we were doing so well without a hitch, but when we checked in, the receptionist told us our appointment was in Woodbury! That was a big miscommunication there (long story- apparently we picked out our doctor from an out-dated brochure from the NICU)! Luckily, another doctor had some cancellations and was able to see us. The pediatrician said the girls looked good- very strong! The second appointment was to see if there were any changes with their ROP. Sofia stayed the same (Stage 1 both eyes) with the exception of a small portion of her left eye had progressed to Stage 2. Madeline's eyes were the same (Stage 1 both eyes). The doctor wasn't worried, but wants to see them in two weeks (if she was concerned, she would see them sooner). It's such a bummer we have to go back because the girls absolutely hate the eye exam- they scream and cry bloody murder for the whole exam. It makes me so sad!

Sofia and Madeline have been taking turns on who wakes up to eat during the night. I haven't quite learned to distinguish their cries yet, but when I go in their room, one of them is wide eyed and the other is sleeping! We always wake up the sleeping one to eat and so far that has worked out just fine (YES!) We are lucky in that they don't need to be rocked to sleep after the feedings, we just put them in their cribs (a plus learned from the NICU). Thanks, mom and dad, for helping out with those midnight feedings!

Here are a couple cute pics of the two...

Sofia right after her first bath at home. She seems to be saying "What are you doing!? I'm cold!"
Madeline with her typical wide-eyes.
Sofia on the left and Madeline on the right, bundled in their Halo sacks but wide awake.

Madeline on the left, Sofia on the right.Hope everyone's having a good week and sleeping more than we are! :) We'll make up that sleep in, oh, 15 years...