July 2009 Archives

Well, Lily spent a total of 12 hours in the IMC before they deemed her well enough to come back to 6th floor to join Juliette. I guess that is good news because the doctor told me that once they start getting better they rarely get worse. That being said though she's really not better yet. She is coughing a ton and the nurses are suctioning copious amounts of mucus from her nose. They also are deep suctioning her which involves sticking a tube down her nose into her throat to get more snot out. Needless to say she's not a huge fan!

Things aren't all bad though. Lily was in much better spirits yesterday and was even smiling some! Juliette was discharged on Wednesday afternoon even though she is still with me at the hospital. They let us keep our double room and Juliette can sleep in the same crib she had been sleeping in so that's been really great.

I didn't mention that Ben and Maia got into a car accident on Monday. A driver sideswiped the driver's side of the car. They're both alright but it was just one more thing to have to deal with. The good news is that the driver that hit them accepted responsibility so his insurance is covering everything and we don't even have to pay our deductable. It's too bad it wasn't our van though since we are planning on trading that in within the month.

Anyway we wholeheartedly appreciate everyones prayers and support. I know we've asked a lot of everybody these last several months and it's meant a lot to us to know that people are there to help when needed. Our greatest need right now is to find people willing to watch Maia after she goes to bed so that Ben can come to the hospital. If you're willing to help out in this capacity let Ben or me know. Sounds like Lily is waking up so it's time to call the nurse in to suction her and weigh her so that I can nurse her!

Lily is doing pretty bad right now. She continues to have these coughing spells where she can't breathe. The mucus is just so thick and she just can't catch her breath and it is heartbreaking to watch. She had two additional episodes today. She's been extra fussy too - just a lot of pitiful whimpers and cries and she just sounds so hoarse. I was allowed to nurse her for awhile earlier but now she's not allowed to eat by mouth for awhile so I need to pump as well. Every time I hold her though she roots on me and tries to eat and I just can't help her. I feel like she's starving even though they're giving her IV fluids.

Anyway a doctor from the PICU (pediatric ICU) came to see her and decided she needs more individualized care so he wants to transfer her to the IMC (step up from PICU) so they're currently working on getting her space there. They can't do anything different for her as far as a magic cure but they can give more 1 on 1 attention. It looks like it won't be a restful night. I only just got a very overtired Juliette to sleep so I'm praying she stays asleep but I'll have to run from floor to floor regardless. I'm scared but trying to think positive. I know she can beat this, she's a fighter and has already overcome such odds.

We will take hugs and prayers right now.

Tonight started off great. Juliette hasn't been on oxygen all day and Lily was at 1/8 to 1/4 of a liter which is just a very small amount. They both nursed very very well all day long and both slept well too. Fast forward to 2:00 am. I decided that the nurses should give the girls one bottle of breastmilk so that I could get some sleep so I woke up and pumped and the nurse got Lily ready for her feeding. Lily got suctioned and then started to cough. She couldn't catch her breath and started to turn blue and within a little bit there was a big team of people working on her. They gave her some oxygen and suctioned her and she worked it out but it was pretty scary. Now she's on an apnea monitor (blah), a high flow cannula and got an IV put in her foot. She's also not allowed to nurse for awhile. I'm really bummed - it's a lot for such a small baby to go through. She's just sounding so pitiful and sad and it breaks my heart. So we will see what happens now. The nurse is currently trying to give Juliette a bottle so I should be sleeping but I'm up on adrenaline.

This morning Juliette's nurse offered to listen to Lily's lungs. She thought Lily sounded as congested as Juliette so Becky took her down to the ER for evaluation. The docs at the ER admitted her because she was retracting when breathing and because she tested positive for RSV. Both girls are now in a large double-occupancy room across the hall from Juliette's old room.

Both girls are pretty congested and get suctioned regularly. They're also both on nasal cannulas to provide some additional oxygen. If their RSV runs the "typical" course then we can expect them to start improving early next week.

Becky's folks came back early from road-trip vacation and have been able to spend some time keeping Becky company at the hospital and helping with Maia babysitting. I'm trying very hard to disinfect and wash every surface, blanket, etc so the house is nice and germ-free when the girls come home. It doesn't help, though, that Maia and I are still coughing all over the place. Blah

I'm certain there are many details I'm leaving out but it's late...

Today was Lily's and Juliette's four-month well baby visit to the pediatrician. I have a lot going on at work so Becky took them on her own. Based on yesterday's visit, we knew they wouldn't be getting their shots and instead the focus would be on re-evaluating their flu/cold/whatever.

The girls are sick.  They have a nasty cold (but thankfully no flu) and are pretty miserable.  This week has been pretty awful - they've decided that they need to scream at night from 9:30 to 12:30 and it's starting to really wear me down.  Poor Ben is also sick (and has pink eye) and he's so tired - he went to bed last night early and I spent the next 2.5 hours trying to feed and console inconsolable babies.  I would hold Juliette and walk and bounce with her all the while with Lily screaming and so I'd get Juliette to fall asleep, put her down, pick Lily up and Juliette would scream bloody murder.  Rinse, repeat.  They're so stuffy and have hacking coughs and just seem so uncomfortable - I feel so bad for them but I just don't know what to do.  I only have two arms.  They were also both screaming at 3, 4 and Juliette was screaming at 5 this morning.

I'm very thankful to Lorry, Matt and Stacy for the last couple of days.  Yesterday Lorry came over and vacuumed for us and held babies and Matt went and picked up a prescription for Lily and brought us dinner and today Stacy came over and watched the girls while I took a much-needed shower.

Their 4 month appointment is tomorrow.  I'm glad for it because of the timing with their sickness and because I'm very curious as to what their weights are.  Plus II haven't been out of the house all week!  I think Lily will be around 9 lbs and Juliette around 11 but we'll see!

Another development is that Lily seems to have forgotten how to take a bottle.  She is supposed to get 2 fortified bottles a day but we ever only did one but now she doesn't want that - she wants only mom.  That is great in the sense that we've overcome our nursing struggles but I wish we could overcome those and have her still know how to eat from a bottle when necessary.  Ben and I want to take a break and go see the latest Harry Potter movie at the IMAX next week.

Anyway, today I'm really tired and frustrated and I'm praying that this sickness clears quickly.  I'm so thankful that I'm not sick!  It can always be worse, right?

So on Thursday Ben got a call from daycare saying that Maia had a 102.1 fever and that we had to pick her up.  He brought her to our pediatrician who decided to treat her as having the H1N1 virus.  She is also very congested, has a very bad cough and is in general very miserable.  At the doctor's office her temp was 103.5.  They prescribed Temiflu which is supposed to lessen symptoms when taken within the first 24-48 hours of getting the virus.  We were of course concerned about the twins (and ourselves) and so after a few phone calls to the CDC and the state epidemiologist they prescribed Temiflu for the girls as well just as a preventative measure.  They're still very high risk if they get sick so we'd rather err on the safe side.  Anyway, they don't know for sure that it's swine flu but the test to check takes 6 days and by then the symptoms will be mostly gone.

Maia has been pretty miserable the last couple of days.  She's sleeping badly, is extra attached to her binky and her lovey and is crying a lot.  We're watching a LOT of Elmo since that seems to help her mood.  It's a bummer because it's supposed to be a lovely weekend and we've got some cabin fever.  We were invited to a couple of events today and can't go.

Lily and Juliette have been eating like crazy so maybe they're going through a growth spurt.  Lily has turned into a champion nurser so that's exciting but I'm nursing a baby ALL the time.  Yesterday I didn't even get a chance to shower.

Anyway, both girls woke up and need something so I'm off. 

Our little Lily is officially cord free as of 1:30 today! I an so excited to have her off that monitor - I really think she doesn't need it and her red skin agrees with me. Yay Lily!

Maia has lately been saying "potty" and "poo poo" a lot so we figured maybe she's ready to start potty training.  This weekend we bought her a little potty just to get her used to it and the idea of it; we really aren't that excited about training her right now and don't want to put any pressure on her because it would be difficult right now to have to rush to the toilet whenever she needs to go.  At the same time though, if she's ready she's ready so we want to be prepared!  Maia LOVES her potty and she wants to sit on it all the time.  On the first day we got it, she actually even went - it surprised me because the potty plays music when the kid goes and I heard the music and figured that maybe Maia touched the sensor or something but nope, she actually went!

The girls are doing well.  I've started dressing them for the day instead of keeping them in their sleepers all the time.  I just need to be careful to keep them warm enough!

I'm hoping that the apnea program calls today to tell us that we can take Lily off the monitor permanently. 

Not much else is going on.  We went to the park on Saturday and Lily and Juliette cried most of the time but we still were able to get some ice cream and I was able to take some good photos of Maia for my class project.  Lorry and Emma came over yesterday and I also got some shots of Emma. 

I can't believe how fast time is going.  I feel like I just updated this blog a couple of days ago but apparently it's been over a week!

Things are going all right.  We had our Early Childhood Intervention screening this week and both girls are doing well.  They're going to put together a plan and then we'll have a meeting about it but mostly we're just checking periodically to make sure they're hitting all of their adjusted age milestones.  So far, they are.

One piece of great news is that both Lily and Juliette have started to smile!  I can tell it's not gas because when they have gas they just get a little half smile but when they really smile their whole face just lights up.  It's beautiful to see and when I get the chance I'll post some photos.

They had a follow up eye exam today to check again for ROP (premature retina disease) and neither girl has it and now their retinas are mature so there's no chance that they can get it.  This is great news.  It was a horrible appointment though because they use these retractors to hold their eyes open and they both just screamed bloody murder.  All was calm afterwards though when I held them.  We have another appointment in 6 months but that one will be painless thank goodness.

We went out to dinner as a family for the first time tonight.  My parents joined us but it was a nice change of pace for sure!  The girls were a little bit whiny but that was okay because nobody could hear them over the noise of the crowd (Chinese buffet).  It was helpful to have grandma and grandpa there though for sure!  I also ran into an old friend from high school and it was great to catch up with him.

Juliette has grown out of newborn clothes.  I am bummed about this because we still have so many cute "matching" outfits but we don't have any matching 3 month ones and even if we did they're too big on Lily.  Oh well, no matching for us!  Some of the clothes we didn't even get the chance to wear.

The Apnea program downloaded the info from our monitor yesterday and in 3 or so weeks we only had 4 alarms, all while Lily was eating.  I think that next week they'll call me to tell me we can take her off altogether and I'm so so excited about that!

My friend Stacy came over this week and brought her little boy, Finn.  He was born 3 1/2 months early at Children's just shortly before Lily and Juliette so it was great to catch up with her. I think we'll try to make it a regular thing - next time let's see if I can go over to her place with the girls!  Whew.

I'm taking a photography class right now since I had a class gift certificate that was about to expire and I'm finding it hard to find time to take photos.  I also need models (children) so if anyone wants to volunteer their kid(s) let me know and I'll take some pictures.  I'm not very good (hence the class) but I'd love to do it. 

We had a weight check appointment for Lily yesterday and I was really nervous about it since she's been spitting up so much lately.  Turns out I had nothing to worry about; In 2 weeks she gained 1 pound 1/2 ounce so I'm thrilled with that.  She's now 7.5 lbs and growing!  Another piece of good news is that ever since we stopped the caffeine she hasn't had any alarms on her monitor so I'm praying that they will tell us that we don't need it anymore.  That will be a great day!

Juliette is doing really well.  She holds her head up amazingly well and I really thought yesterday that she was going to roll over.  She didn't quite make it but with how strong she is I imagine that she'll be doing it soon! 

Some folks from Anoka Early Intervention came by a couple of days ago to talk about what will happen with the girls.  Since their birth weight was so low, they qualify for free and early services so we're excited to take full advantage of that.  Next week they're coming back to do an evaluation on them to make sure they're where they should be for their adjusted age.  They'll tell us what we can do to help them reach certain milestones and they'll put together a "plan" of how we'll handle the next few years.

Maia is doing pretty well though she's been stalling like crazy at bedtime lately.  We are also having trouble brushing her teeth - she HATES it.  She's happy to hold the toothbrush but if we take it and try to brush her teeth for her she melts down.  Any suggestions?

My computer crashed awhile ago so I haven't been able to download any of the photos I've taken recently.  Ben got me a new harddrive and reinstalled Windows so I should be good to go shortly which is good because I signed up for an 8-week photography course on photographing children and babies.  I'm hoping to get a lot out of it and get a lot of great pictures of our girls.  I wouldn't normally do this right now but I had a gift certificate for this place and didn't want it to expire so I'll do the best I can to make time to get in there with my camera.  I'll try to post some of the photos here.

Anyway, Lily is complaining about something so I'm off to figure out what it is!