April 2009 Archives

4 pounds!

Juliette hit 4 pounds today!  I can't believe it - I think officially she's 4 lbs, 1 1/2 oz and it's amazing to me how far they've come from the 2 lbs and 2 lbs 11 oz at birth.  Lily has gained more total which is great so hopefully she can catch up pretty quick.  I think she was 3 lbs, 6 oz or so today.

I went in a little bit earlier today so that I could be around for both Juliette's 11:00 feed and 2 pm feed.  She did great nursing at 11!  I'm pretty sure she got a decent amount but not positive so they gave her her normal full feed anyway (through the NG (in the nose) tube).  At 2 however it was a different story - she pretty much slept through the feeding (whereas she was wide awake at the earlier one!) so we didn't nurse, I just held her for awhile.  Having her in the crib is so nice because I can just pick her up whenever I want to now.  It's great.  I can't wait for Lily to be in the crib too!

Lily's big news is that she "graduated" from a high-flow nasal cannula to a regular nasal cannula!  The high-flow pushes humidified air and the air in the regular cannula isn't humidified.  It does have a "bubbler" though to give the air some moisture, but not as much.  I hope she does well - I'm excited to get her on just room air like her sister.

Maia was in a great mood today.  She's so much fun when she's in a good mood!  We had a good time pretending to go "night night", playing "point to that body part" and talking to daddy on the phone.  He comes home on the redeye tonight so we'll see him in the morning.  I can't wait!

Baby steps

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So today the doctor ordered that I can start putting Juliette to breast twice a day!  They say that a baby can't suck, swallow and breathe all at the same time until they reach 34 weeks which was on Monday.  Lily didn't get that order - probably because of her size but that doesn't mean we can't try.

Anyway, right around Juliette's 2:00 feeding time we tried and she latched right on!  It was sporadic and I'm not sure how much she actually got (if any since I had just pumped) but she did it so I'm really happy.  Hopefully we can keep it up.  I'm going to try to be there for her 11:00 and 2:00 feeds tomorrow so hopefully that will work out well.

In other good news, Ben will be home around 6:00 a.m. on Friday!  I'm so happy - I miss him so much and although there is a lot going on in Seattle right now, we need him home too.  I have a surprise for him when he gets here!

Here is a photo of Lily today (she didn't get moved down on her cannula yet - maybe tomorrow).  Sorry it's so grainy!

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And here is a photo of Juliette in her crib!

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A few pieces of good news!

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First, I'm feeling better!  Not 100% and not enough where I was confident enough to go see the girls today but way better than yesterday and Sunday.  Thank goodness because it was really horrible and I don't know what I would have done if it had continued for longer.  Anyway, I think if I'm feeling good tomorrow I'll be going to the hospital tomorrow so I can't wait!

Second, Maia woke up happy this morning and slept until 6:15 which was a great improvement over the 5:00-something it was the last couple of nights.  Keep it up sweetie!  She was also pretty happy to get to daycare this morning and have breakfast so that was a relief for me.  When I picked her up however, she WAS crying and she was kind of crabby again for the rest of the night.  She was hungry so eating helped but there was still a significant amount of whining.

Third, I called and spoke with Lily and Juliette's nurse today (Josie) and she was really excited to tell me that they moved Juliette to a CRIB.  What!??!  She's apparently been maintaining her body temperature quite well and seeming bored in the isolette so they're trying it.  Normally babies are 1800g before they move them to a crib but Juliette is 1705g and just doing so well.  I'm only sad that I wasn't there to see it.  Lily is doing well on her 1 liter of oxygen and if she continues to do well they'll take her off the high flow cannula tomorrow and put her on a regular nasal cannula (no humidity, just air) so that will be exciting!

Still sick

This morning Maia woke up badly and she was really crabby.  I brought her to daycare and she started bawling - she LOVES her daycare normally so it broke my heart to see her cry like that.  I stayed around the corner until she calmed down but it was rough.  When I picked her up from daycare she was happy - until we got home and the whining and tantrums started.  It's been a tough few days with her - I don't know if it's because Ben is gone or if she's just going through a stage but I'm not sure what to do about it.  I'm thankful that she goes down for bed and naps really well but I hope this 5:30 wakeup time will stop soon - I need sleep.  I'm averaging about 4.5-5 hours a night with pumping and early wakeups.

I'm still sick.  I've been taking Immodium and it seems to help some but I can only take it 4 times in a 24 hour period.  I'm praying this leaves me soon because I miss my girls and I hate not being able to go see them.

The girls are doing fine.  They both gained weight yesterday and the doctor brought Lily's oxygen flow down from 1.5 liters to 1 liter so I hope she does well on that!  Last time we did it we had to put her back up to 1.5 because she couldn't handle it.

Grandma's funeral is scheduled for Wednesday afternoon which means that Ben will be extending his stay in Seattle.  I figured that would happen and of course he should be there for it but boy do we miss him here!  It will be nice to have him home again, I've been pretty emotional lately.

Bad timing all around

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Ben's grandma died early this morning.  I'm very sad - she is such a sweet person with a wonderful sense of humor and we're going to miss her very much.  His grandpa is not taking it well - I pray that he can find peace and understanding and I very much hope that he doesn't lose the will to live.  What a crappy weekend for everyone...losing Lisa and his grandma within 36 hours of each other.  Wow.

On the homefront, I am sick.  Dreadfully sick.  I keep reading about the swine flu going around right now and I sure hope that's not what I have.  Anyway, it hurts to stand up, it hurts to move, it hurts to pump.  The only thing that doesn't hurt is when I'm laying down.  I was hoping that I'd feel better by the end of Maia's nap but no such luck.  I was supposed to go to my baby shower today but had to cancel - I didn't want to get everyone sick and I am not sure I could have left the bathroom for very long anyway.  This is also not a good recipe for me being home alone with a toddler.  I am SO thankful - my mom offered to come over and help watch Maia so that I could rest.  She is a lifesaver!  She played with her, gave her a snack, made dinner and cleaned up.  The hospital also called saying that they're almost out of frozen milk so since I can't go see the babies being sick, mom offered to bring the milk over to the hospital for me. 

Anyway, it sucks to miss my own shower.  Hopefully we can reschedule but I feel so bad that the cake and the food and games were all ready to go.  It was even ice cream cake - my favorite!

A busy day

I am exhausted - what a day!  This morning we got up around 7 and got ready and took our cat Scooter to the vet for bloodwork.  Maia had her first major meltdown of the day at the vets so that was pretty exciting.  When we got home she proceeded to have tantrum after tantrum - it wears on your nerves after awhile.  It doesn't help that I have to pump every couple of hours either and boy she doesn't like it when I'm doing that!  This afternoon Lorry came over to visit for a bit and it was nice to have the diversion.  Maia and I headed over to Rosedale Mall to get her some new shoes, we got an ice cream treat and then went home and played outside for awhile.  She actually ate her dinner tonight (first time in 3-4 days) and was in a great mood this evening.  Thank goodness!

My mom came over tonight to watch her while I headed to the hospital.  It was great to be able to go today.  I held Juliette for a few minutes but she didn't do so well out of her isolette this time so we had to put her back.  They've been super hungry lately - waking up 45 minutes before it's time to eat screaming for food!  The doctor upped their feedins a little bit today so they're both getting about 1 oz (28 and 31 ccs) of milk every 3 hours.

Some more bad news from Seattle.  Ben went to visit his grandmother today and he thinks that she probably only has a couple of days left.  If that's true then he'll probably end up extending his stay, otherwise he'll have to come home and go right back again - for the 4th time in a month. 

Tomorrow I have a baby shower.  I have to keep reminding mysefl because I've been forgetting things a lot lately.  I'm barely on my computer and that's where my calendar is kept! 

So sad

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Today is a sad day.  Ben is in Seattle right now visiting sick family and she passed away today.  Lisa had been sick for about a year and everything just seemed to happen so quickly since then.  I am thankful that she got to see Maia a couple more times in the last month and that Ben and his mom were there for her at the end.  I have so many good memories and I'm really going to miss her.

I don't have much to report on the girls today.  Lily hit 3 pounds so she's gained a whole pound in the last month.  Juliette is now 3 1/2 lbs.  They're doing well.

I'm hoping that Maia sleeps well tonight and is back to her normal self tomorrow instead of the crankypants she's been the last couple of days.  If she isn't it'll be a tough weekend.

Eye exams

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The girls had their first eye exams this morning which was not very fun.  They're checking for ROP (Retinopathy of Prematurity) which is a potentially blinding disorder that can affect preemies born under 1200g and born earlier than 31 weeks.  If they have a severe case of it they can quickly go blind so they end up having to do a laser surgery before they reach that point.    Anyway, the exam went well for both girls and so far they have no signs of ROP so that is excellent news.  They'll have frequent exams for awhile because it can still develop.

I had lunch with my friend Ali from work today.  It was nice to see her and to introduce her to the girls!  We walked over to the Global Market and had some delicious Mexican sandwiches - it was sure a nice change from the Children's cafeteria or McDonalds!

I picked up Maia from daycare this afternoon and one of her teachers said that she must miss her daddy because she was not herself today.  I think she's not feeling well - she hasn't been eating well or sleeping well so I think she must have some sort of stomach bug.  All she wants is milk.  So far tonight she's woken up about 5 times and she's only been down for bed for 3 hours!  I'm hoping that both of us get some sleep tonight.

Spells and leaving

Apparently Juliette had her first spell yesterday and Lily had one today.  A spell is when they "forget to breathe" and need help coming out of it.  I'm not sure the circumstances surrounding Juliette's since I wasn't there but Lily had just finished eating when she had hers.  The nurse picked her up and Lily came right out of it but it's still a little bit scary and it makes me wonder why now?

Not a lot of changes today.  Both girls got their feedings increased (they'll be happy about that), Lily had gone down to 1 liter on her cannula this morning but got put back up to 1.5 liters this afternoon since she wasn't handling the lower flow that well.  She's also being put on caffeine (a stimulant that helps develop breathing) so I'm interested to see how that goes.  Juliette was on it for awhile and she did great - went right to room air!  Hopefully it works the same for Lily.

I kangarooed with Juliette for over an hour today so again, the highlight of my day.

In other news, Ben left for Seattle tonight.  He just got back yesterday but feels that's where he needs to be right now.  Maia is home with me this time.  I'll miss him - he is gone until Tuesday.

Insurance woes

The girls are doing all right today.  I kangarooed with Lily for about an hour and she was doing really well on her oxygen levels so that is great news.  I love snuggling with my girls!  In other good news Ben and Maia are home.  I miss them so much when they are gone.  Ben is going back to Seattle in the next couple of days so I'll have Maia in the meantime.  Mommy daughter bonding time!

We've started getting insurance bills for my pregnancy/NICU time and it's frustrating because the insurance company keeps rejecting stuff as "duplicate".  Hello, we had twins (which they very well know) so we're going to have two claims for plenty of things!  What a headache - really this is one more stress we don't need right now.

I'm void of energy so maybe I'll have more to say tomorrow.

An unfortunate setback

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I got to the hospital today and scrubbed in, introduced myself to our nurse (Kathy) and went over to say hi to the girls when Kathy got a phone call.  I knew it was about our girls but couldn't get the details over Kathy's side of the conversation.  When she hung up she paused and said, "I have to tell you what's up."  Uh oh.

Kathy started rattling off terms like MDRO and MRSA and isolation.  The NICU/ICC apparently does a culture of all the babies once a week to test for MDRO's (Multi Drug Resistant Organism) and the previous 3 tests for the girls had been negative.  Now it's positive for MRSA (Methicillin Resistant Staphlycoccus Aureus).  What this means is that they have the "very hard to get rid of" staph bacteria - it's colonized in them but they thankfully don't have the actual infection.  It's still dangerous because other babies could get the bacteria and become very sick - it's not necessarily just going to colonize in them like it did in Lily and Juliette.  Now the girls have to stay in isolation (for at least 3 weeks with 3 negative tests), which means that the nurses have to wear gowns and gloves whenever they touch the babies, we're not allowed to go to any other patient's bedsides, and we're not allowed to pick our noses then touch the girls.  Yes, that's specifically what the doctor told me!

The girls will be treated with an antibacterial bath and Bactriban ointment on their noses (this is where staph generally colonizes).  What a pain - I can't help thinking to myself that they didn't have this problem in the NICU but as soon as they move to the ICC they do!  Nobody knows where they got it; it could be from anywhere.  It's spread by touch so washing hands is super important, especially now.

In other news, Ben and Maia come back tomorrow.  I'm hopeful that it will be a good flight for them.

Sunday in the ICC

Not too much to say today.  I went to see the girls and they're doing well - no real changes for either of them today.  The little boy in the bed next to Lily went home today so Juliette moved over there.  I'm very excited that they're now in the same room!  They're sharing the room with a set of identical twin boys so that will be fun I think.

I held both girls together today for a little while.  While they seemed fairly content being held, their oxygen levels kept dropping lower than they like to see so I didn't hold them for long.  The chair I was sitting in was rather uncomfortable and I'm used to leaning back a bit more when I'm holding them so that might have something to do with it as well.

My friend Linda came to visit today and to meet the girls.  It was good to see her - she has fraternal twins that were born at 30 weeks about a year ago so she's "been there done that" and it's nice to talk to her.  After seeing Lily and Juliette we took the tunnel over to Abbott so that we could go to McDonald's for lunch.  I still think it's amusing that a hospital has a McDonalds!

I've been trying to work on finishing my cross stitch project this evening.  I finished the majority of it in the hospital but I hadn't yet added the names/weight/date so that's what I'm doing now.  It will be nice to get that done and hung up in the room!  That is, assuming we actually get a room ready for them!

This afternoon I took Ben and Maia to the airport.  They're not gone quite as long this time but it's still tough to say goodbye.  I'm already looking forward to Tuesday when they come back.

I went right from the airport to the hospital.  It was very weird passing by the NICU to go to the ICC!  I knew Lily had moved last night but I had no idea where she was.  Luckily all the nurses seemed to know though!  She's in a different room than Juliette but hopefully one of the other babies will be leaving for home soon so that Juliette can move in.  The girls are doing okay.  Lily has been needing more oxygen than normal so they turned her high flow cannula back up from 1.5 liters to 2 liters.  Hopefully it's just a temporary setback. 

Juliette had been having some high heart rates recently and we figured it was because she was on caffeine (meant to stimulate breathing).  The doctor took her off caffeine a few days ago and she was doing great but today she was all over the place with her breathing.  The nurse thought it was because she was off the caffeine but I'm not convinced.  We were also warned that when the babies move to ICC sometimes they act different or have new issues because they're in a new environment.

My friends Amanda and Jeremy visited this afternoon and it was nice to see them.  Apparently my friend Linda also visited earlier but I wasn't there because I thought I was supposed to meet her tomorrow, not today.  Boy did I feel awful!  She's coming tomorrow instead so let's hope my crazy brain can remember the right day this time.

Hurry up and wait

So I went to the hospital this morning expecting the girls to be at the ICC and no such luck.  I was there all day (until 4) and still nothing.  I did find out that they'd have to be in separate rooms right away because they didn't have two beds next to each other but I was assured that as soon as they could they'd put them together.

After I left this afternoon I mentioned that Ben and I would be back tonight and they told me to just go right to the ICC because they would be moved for sure by 7 pm.  My mom came over to watch Maia and when we got there we were told that just Juliette had been moved.  They were waiting for another patient to go home.  We were hoping they'd move Lily while we were there but no such luck!

Tomorrow Ben and Maia leave for Seattle to visit family.  It will be weird with them gone. 

Sad goodbyes

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Two beds opened up in the ICC (Infant Care Center - Level II nursery) and the girls will be moving there tomorrow.  It's bittersweet because obviously it's great news that they're well enough to go there but I'll really miss our nurses in the NICU.  Marcy is our primary day nurse and she's awesome.  She does whatever it takes to make me feel like the mom and I so appreciate that.  Our other primary nurse is Patrick (who mostly works nights) and he's been so much fun to talk with.  He was a 28-week preemie twin and even had the same surgery that Juliette had on her heart.  We also had a ton of other nurses that we got to know a little bit and they each brought something different.  While I'm sure the ICC nurses are wonderful as well it's still tough to say goodbye to our NICU "family".

Both girls are doing great.  Lily is still having a tough time with her oxygen (she needs some extra) but is gaining weight like a champ.  When they were born they were 2 lbs and 2 lbs 11 oz and now they're 2 lbs 10 oz and a little over 3 lbs.  I did kangaroo care with both of them together today and that was pretty awesome.  They once again just curled up and fell right asleep - I think I fell asleep as well for a little bit!

So tomorrow is the big day.  I'm not sure when the move will happen yet but I'm excited for the next stage in their journey home.

A bath and clothes and back together!

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I had a lovely surprise when I walked into the NICU this morning.  Both girls were bathed and had clothes on for the first time!  Marcy (our primary day nurse) said that with them being so close to going to the level II nursery she thought it would be nice to clean them up and get them looking a little bit more presentable. 

Here is Juliette!

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And then another surprise, Marcy suggested that I hold both girls together!  They had not been together since before they were born so it was exciting to be able to hold both my babies.  They both fell right asleep all curled up and intertwined in the same blanket.

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It was so incredibly sweet!

Not much else going on today - that was definitely the highlight!  The doctor said that he'd contact the ICC at Children's to let him know when 2 beds open up.  We have a tour at Unity hospital tomorrow night.

Some photos and good news

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The rounding doctor today didn't round on the girls until late afternoon (normally they call me by noon with the update) and when he did finally call he said that the girls are the healthiest out of any other babies in the NICU.  That is reassuring to hear and it brings us one step closer to them coming home!  Of course, we're not nearly ready for that but it's positive progress.

This evening we toured the ICC at Children's hospital and I hate that I like it better.  We really wanted to love North Memorial but I don't think we'll end up going there.  We talked to one of the neonatologists tonight and she recommended possibly transferring over to Unity hospital for level II care.  They only have a handful of beds but they have a nice, renovated facility.  They also allow you to room in with the babies if they have space and if you're breastfeeding.  Now Ben and I have somewhere else to tour!

I kangarooed with Juliette this afternoon and Ben did it with Lily this evening.  Lily always seems to do better when Ben is holding her - for some reason her vitals aren't as good when I've got her.  Maybe it's just position. 

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Here is Lily on the cannula.

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Here is Juliette!  (The tube in her nose is her feeding tube.)

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I'm happy to report that not much is new with the girls.  I kangarooed with Lily today for an hour and then even though we're not supposed to do it twice, Ben kangarooed with her tonight.  I feel like we neglected Juliette today but every time I was there she was sleeping so soundly and Lily is the one that seems to need the contact more.  It helps her blood oxygen levels to stabilize which Juliette has no problems with.  Tomorrow though I plan on kangarooing with Juliette since I'll probably only have time to do it with one baby.  The only thing new with them is that their feedings went up a little bit and the thyroid test came back on Juliette and sure enough, it was a false positive so that is great news.

Ben and I went to North Memorial this evening to tour their Level II/NICU.  It's VERY different than Children's and we'll really have to weigh the pros and cons before making a decision.  I love Children's - I just don't love the drive.  North is very close but has a few downsides.  There isn't a very private place to pump, they don't seem to promote breastfeeding as heavily there (at least I didn't get that impression), the nurses all work in 12 hour shifts so you'll get a big variety day by day, there are no curtains around each bedside, you don't get the $45 cafeteria card that Children's provides weekly, there's no sibling play room and parking will cost $70/2 weeks.  We currently pay $30/2 weeks.  The benefits are that it's closer, there is no 10 minute restrictions on visitors (they play it by ear depending on how the baby is doing), there are a couple of isolation rooms which they said we could probably use for the twins (a small private room) which would be great for breastfeeding.  Anyway, I'm not sure what we'll do yet.  I think we'll have to go see the ICC and Special Care nurseries at Children's/Abbott and make that decision.

Happy Easter

Happy Easter everyone!

Today we spent most of our time at home since the sibling play area at the hospital is not open on Sundays.  We hid easter eggs for Maia for the first time and she had a lot of fun.  We put them out in plain sight and had to direct her to them but she was really digging opening them up and finding out what was inside!  Note to self: next time use cheddar goldfish or something to avoid the "take the candy away" hassle that otherwise ensues!  We gave her a little bit but didn't want her to have everything at once and boy, she was NOT happy!

This afternoon we headed up to Isanti for Easter dinner at my uncle and aunt's house.  Once Maia warmed up she had a blast running around and showing off her cuteness.

When we got home Ben headed to the hospital.  I figured that I am going to be there all day tomorrow so he might as well get to see them tonight!  It's the first day I haven't seen them at all but I did call and they're doing well.  The doctor asked me where we want them transferred for level II care so I guess it's really coming up here quickly!  I'm happy they're doing so well but it's still scary to think that they're well enough to be moved to a less high risk place.  We keep going throught the "what if" scenarios and I have to remember that if they stay at Children's or Abbott and have a problem the NICU is still right there.  If they go to North Memorial, there is a level III NICU there too.  I'm going to call North tomorrow and hopefully schedule a tour so we can decide if we like it or not.

A lower key Saturday

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Today was mostly about Maia.  Weekends are difficult to get to the NICU because even though there is a Sibling Play Area at the hospital, it's only open to kids age 2 and up (unless an parent is supervising).  So today we did a lot of playing, went to the park and slid down the slide 108,342,343 times (yes, I counted!) and walked the trails.  It was a really nice time.  This evening my mom came over to watch Maia and Ben and I headed to the hospital.

We both kangarooed the girls today at the same time and it was pretty great.  Ben held Lily and I held Juliette - it was great to be able to cuddle her without all the breathing apparatuses that I'm used to!  Neither of them had any spells today and both of them are off the bililights (hopefully for good) so that is great news.

One interesting but mildly alarming situation going on right now is with Juliette.  When they were born the hospital sent a blood sample in for screening and both girls came back clean.  Because they are preemies, they do another test and Juliette's came back positive for congenital hypothyroidism (low thyroid levels).  The doctor is convinced that it is a false positive since her first test came back negative but they're checking it again to be sure.  What is also interesting is that it appears that Lily's test is negative and since they're identical twins they should have the same issue if that's really the case.  If she truely does have hypothyroidism it's very managable so it wouldn't be that big of a deal but obviously we'd rather she didn't!

Anyway, happy Easter everyone!  Tomorrow we're hiding some eggs for Maia then heading up to my aunt Nancy's house for dinner.  Should be fun.  Hopefully we'll get to the NICU in the morning!

On her own!

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Juliette continues to amaze us.  Since being off the ventilator (3 days ago) she went to the CPAP, then to the high flow nasal cannula at 2 liters, then she got it moved down to 1 liter and the whole time she was on room air with no extra oxygen.  The doctor looked at her today and decided (with the nurse's opinion) that Juliette was fine and didn't need any sort of breathing help at all.  So today she got the cannula out and she is completely on her own!  She is doing so well and has had no spells (forgetting to breathe) whatsoever.  Great news!  She's still on the bililights for the jaundice and also still has her central line IV in her foot/leg but will hopefully get that removed in the next few days.  Otherwise she has only her feeding tube and the leads to measure her heartrates and blood pressure and stuff.  It sure makes it easier to hold her!  Juliette is also getting her feedings dramatically increased - she is currently getting fed every 3 hours at 15 ml going up by 1 ml every 6 hours up to 26 ml total.

Lily is doing well too.  She's faring pretty good on the cannula - she's still at 2 liters but is needing some extra oxygen.  She had no spells today (yay!) and she got removed from the bililights hopefully for good.  She's still getting fed continously at 6.4 ml/hr.

Ben had the day off today because it's Good Friday (he took it as a floater) so we spent some time at the hospital this afternoon.  He did end up doing kangaroo care with Juliette and thought it was pretty great.  Juliette loved it and aside from the uncomfortable chair he was sitting in the experience got 2 thumbs up.  Thanks Stacy and Jim for the encouragement!  I went back to the hospital this evening and kangarooed with Lily.

Our friend Amanda stopped by the hospital today to meet the girls for the first time.  Ben entertained her kids while she came in and visited and it was really fun to show them off.

The nurses have started asking us if we're planning to stay at Children's when we get transferred to level II care.  With how well they're both doing it sounds like it might be soon. We were not expecting such a quick transition and we figured we'd have at least 5-6 weeks in the NICU before having to move!  We need to make the decision whether to stay there or try to transfer to North Memorial since it's so much closer to us.  We love Children's but it's quite a drive, especially in rush hour.

What a crazy journey this is! 

Another step forward

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So it looks like Lily can't stand to be behind her sister for long so today she too graduated to nasal cannula!  It seems like it is just so much more comfortable for them so I hope both of them can stay stable on it.  Lily had a few "spells" last night on the CPAP (meaning she forgot to breathe) but came out of them pretty easily.  She didn't have any spells today and Juliette didn't either.  They're doing great.

I got to the hospital a little bit earlier today and was able to do kangaroo care with both girls.  It's so amazing to me how they can be so agitated and then the second I start holding them they fall dead asleep and their heartrate drops.  I held each one for an hour.

Ben has the day off tomorrow so we're planning on doing taxes in the morning (yes, I know we're waiting to the last minute) then heading to the hospital to spend most of the day.  It will be nice to have the time together with the girls and not be rushed.  I'm hoping Ben will get to do kangaroo care with Juliette since he hasn't held her yet.  He's apprehensive about it so Jim, if you're reading this let him know how great it is!

Yet another big day!

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Lily is off the ventilator!  The doctor did her rounds this afternoon and thought she looked great so they put her on the CPAP.  Lily got VERY angry during the process of switching (mostly because it hurt to get that tape off) but immediately fell right asleep as soon as the CPAP mask was on her nose.  It had to feel great to get that big old tube out of her throat.  As soon as it was gone though I could hear her cry (it was heartbreaking) for the first time since she's been in the NICU.  With the ventilator tubing she'd cry but no sound would come out but it's different when you actually hear it.

 

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The other big (and surprising) news is that because Juliette did so well on the CPAP overnight and this morning she "graduated" to a high-flow nasal cannula!  This is a much less cumbersome device that is basically clear tubing around her head with some nasal prongs to deliver oxygen  The CPAP is a mask over her whole nose that delivers air without breathing for the baby.  It has a lot of big tubes and a hat that holds everything in place. 

Both girls are still under the bililights for their jaundice.  They've been off and on 4 times already so hopefully they'll get to be off it for good soon.  Lily also got her central line (an IV in her arm that went up to her shoulder that they use to deliver meds) out today so that was exciting.  Now she can freely move her arm around!

Oh, Ben's mom commented wondering what the bandages were for on Juliette's back.  That is the incision where they did the surgery on her heart (PDA ligation) and it's healing really well!

One down, one to go! Bye bye ventilator!

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What an exciting day today.  When I got to the NICU this morning I was told that they were going to extubate Juliette (take her off the ventilator) and put her on the CPAP machine.  I was so excited because it means that she'd no longer have to have a tube down her throat and will no longer have the machine breathing for her - she'd be doing it on her own with a little extra help.  Being on the ventilator for long periods of time can cause lung scarring and oral aversions so I'd been looking forward to this for a long time.  They warned me that it might not go well and that she might have to be put right back on but I was confident that she could do it.

At 1:00 they gave her a dose of caffeine (helps stimulate the lungs to work) and then took the tube out.  Juliette was VERY angry because the tube was taped to her lip and I think it really hurt to take that tape off.  She was red and raw looking - poor baby!  As soon as she was off the ventilator though she was looking around, breathing on her own and posing for photos.  I was so impressed, she did great and that was even before the CPAP was on so she was doing it all by herself.

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The nurses all thought that Lily would also be extubated today so I was anxiously awaiting that but the doctor said that he wanted to see how she did on the new ventilator settings he designated so the goal now is tomorrow.  I can't wait!  I did get to do kangaroo care with Lily again today - I'm hoping to do it with Juliette tomorrow.  We didn't want to bug her after her extubation this afternoon since that was enough excitement for one day.

Kangaroo Care

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Today was exciting because I got to do Kangaroo Care with Lily.  Kangaroo care is skin-to-skin contact with your baby and is proven to help stabilize baby's heartrate, temperature, and breathing.  It is also supposed to help with breastfeeding and improving milk supply.  We did it for an hour and it was so wonderful.  Lily fell right asleep and did so well!  I was supposed to do it with Juliette as well but ran out of time (mother's guilt!) because I had to pump and then I had an appointment with the financial office.  I'm hoping to kangaroo with her tomorrow.  It will be easier to do once they're off the ventilators because there are so many tubes and wires and things to move around and I can't wait for that day!  I did get to hold Juliette for about 15 minutes today though while the nurse changed out her isolette so while it wasn't quite as long it was still wonderful to be able to snuggle with her for a bit.

They did an echo on Lily today and found out that she does not have a PDA (what Juliette had and had surgery for) so that is great news.  She still has a murmur but they're calling it a VSD (Ventricular Septal Defect) which is a small hole between her heart ventricles.  Generally it resolves itself but if not surgery will be required much later.  Hopefully that won't be the case!

Ben and I went to the hospital this evening while my mom watched Maia.  It's always nice to go there with him!  I wish that Maia could go too but I guess she'll see them enough eventually.  A girl and her baby was being discharged while we were there and Ben was nice enough to set up their carseat for them and teach them how to use it.  I think they were very appreciative.

Oh, happy birthday Amanda!

 

Milk overload

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Even though we already have a chest freezer it's full of food and now I have all this milk that I'm pumping that I don't know what to do with.  The NICU doesn't want it yet because they don't have room either!  I'm doing my best to clear out our fridge freezer (I have no idea what is even IN the back of it) but we need a longer term solution.  Ben and Maia went to look at freezers today while I went to the hospital and picked out an upright freezer which will be delivered on Wednesday.  Thank goodness!

The girls are stable today - no real changes.  Lily is off the bililights again but Juliette is still on.  They will be giving the girls a dose of steroids in the next couple of days if their lungs don't improve.  The steroids have some potential side effects but they apparently work immediately on improving lung capability which will get them off the ventilators sooner.  That day can't come soon enough if you ask me.

They tried to get another central line (PIC line) into Juliette today.  This was their 3rd try - it's an IV that goes in their arm and up through their shoulder or in the foot and up to the abdomen.  Poor little girl has all sorts of poke marks from when they were trying to put this thing in.  The good news is that they finally got it in this time so I'm glad that's over.  The PIC line is where they receive their TPN (liquid nutrition), IV meds and blood transfusions.

Lily got her umbilical line out today which isn't necessarily a good thing.  That line is where they had been drawing blood from and now that it's gone (they only last so long) they'll have to do heel pricks to draw blood going forward.  Poor sweetie!

Tomorrow I have an appointment to apply for SSI (social security income) which Lily qualifies for based on her birth weight.  She'll get $30 a month until she comes home and then $600 for the first month.  After that it's based on income but every little bit helps right now.  It's amazing to me that Juliette didn't qualify because she's still so small to me!

We took Maia to the doctor today because she has a cold and a bad cough.  The cough sounds really hacky and painful so we were worried it was RSV or pneumonia again.  The NP said that her lungs sounded clear but they did a chest x-ray just in case since Maia's cough never went away from her last bout of pneumonia.  I'm thankful that it's "just a cold" this time.  We need to start seriously reconsidering the germ factory we know as daycare.

A short visit

Today was a really busy day for us.  This morning we got up, got ready, I pumped and the three of us went out to breakfast for the first time in a couple of months.  It was a really nice sense of normalcy!  We went back home, I pumped again and we headed out to the hospital.  We brought Maia with us because although she is too young to go into the Sibling Play Area unsupervised, we figured that we could just take turns with the babies while the other one watched over her.  What we didn't know is that the play area is closed from noon to one and then it was closed for the rest of the day because the girl running it had the flu.  We ended up having to hang out in the hallways and the Family Lounge.  At least there are toys in there but it's definiately not as child friendly as we would have liked.

Juliette is resting more comfortably today than she has been because they upped the pressure on her ventilator (which means that she's doing less breathing on her own, the machine is doing more of the work) so even though I'm glad she's feeling better, I'm anxious for her to get off the vent.  Lily is doing pretty well.  The nurse said that her lungs sound better today than they have so that is great news.  They also upped her feedings again! 

Anyway, the big news today is that Ben got to hold Lily for the first time and tomorrow he might be able to hold Juliette!   I'm so happy he gets that chance to bond with the girls.

The rest of the day we spent at our friend Amanda and Jeremy's house for Amanda's birthday get-together.  It was good to get out and do a few normal things today.  Maia had a great time playing with their daughter Ivy (as always).

Tomorrow we need to go out and buy a freezer so I have somewhere to store all the milk I'm pumping lately.  Good times.

Just another day in the NICU

Those "episodes" that Juliette has been having are still happening and now they're also happening to Lily.  We are continually reassured that it's normal for preemies to have this problem but it's still scary to see them stop breathing and need manual help!  Their x-rays are looking a little bit better so I'm praying this is only temporary.

Juliette is holding onto a lot of fluid and is on a diuretic to help clear her out.  She's still not getting any of my milk due to her surgery and the meds she was on so hopefully she'll start getting fed soon.  Lily is getting 3.6 ml/hour and is tolerating it well so that amount will keep increasing as we move forward.

Not much else going on today.  Both girls were given some pain medication to help calm them down since they've been agitated.  They're also both back on the bililights which stinks because I much prefer to see them without their goggles on!

Tomorrow I'm headed to a friend's birthday get-together so that will be a nice diversion.  We'll probably bring Maia down to the hospital as well and even though she can't go in and meet the babies yet she can go in the sibling play area as long as she's supervised.  That could be fun for her!

Scary episodes

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Last night my friend Sara came over and watched Maia while Ben and I went to the hospital.  Juliette's nurse had a student with her and they were doing her cares and Juliette had an "episode".  All of a sudden her oxygen levels went really wonky and her breathing got erratic and just like that there were 6-7 people swarming around her isolette.  They ordered an emergency x-ray and immediately things went right back to normal so they cancelled the x-ray saying that Juliette just worked it out herself.  It was really a scary situation watching that happen.  When I went in this morning I found out that she had some more episodes like that over the night.   Apparently some of the sacs in her lungs aren't working properly and are collecting thick mucus so right now their goal is to just clear her out every couple of hours.  They said this is probably from the surgery yesterday and hopefully things will be back to normal in a couple of days.

Lily is doing really well.  They keep going down on her ventilator settings (which is one step closer to getting her OFF the vent) and keep going up on the size of her feedings.  They started adding human milk fortifier to the breastmilk meant to give preemies the extra calories and nutrition they need so hopefully that does the trick.  LIly still looks so little comparied to Juliette!  Also Lily had a follow up brain ultrasound today.  She had one at 1-day old which showed a level 1 hemmorhage (we were told it's normal for premature births) and the one today was completely clear so that is great news!

Anyway, overall they're doing okay but we're worried about Juliette so I pray whatever is going on resolves itself quickly.  Not much else going on today.  Thank you to Rob and to Sara for bringing dinner last night and tonight.  You guys are awesome!

Successful Surgery!

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After a long wait today, Juliette's surgery is over and was successful.  Thank God!  I walked down with her to the OR and the whole surgery itself took about half an hour.  The longest part was getting her down there and pre-op but I'm so thankful it's over.  Thank you everyone for all of the thoughts and prayers you've sent her way - we really appreciate them!  A special thank you also to Stacy for spending an hour with me before surgery.  Her son Finn had the PDA surgery as well so she knew what it was like and having her there was really reassuring.

Lily is doing well today.  They put down the pressure on the ventilator which is great news because it means that she's doing a little bit more breathing herself.  I hope to see it keep going down until we're able to get her off that darn machine altogether.  They've also upped her feedings (breastmilk) to 2.8 ml/hour which is a little bit over 2 oz/day.  As long as she tolerates it well, that amount will keep increasing.

I also want to thank my friend Sarah for organizing help for our family during this stressful time.  She has arranged for some friends to drop off meals and to watch Maia in the evenings so that both Ben and I can visit the girls together.  I'm so grateful to have such wonderful friends and family so thank you! 

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