Settling In

So this is the first week that Jack and I have been alone and we're surviving!  We have established our routine and they are really pretty good about sticking to it.  I managed to get so much done yesterday because they were so wonderful.  I put away all the Christmas presents, cleaned the house, did several loads of laundry, bathed them and myself (yes, that's an accomplishment!) and cooked a big dinner...on top of the normal feeding, diapers, mixing breastmilk/formula and playing with them.  Its amazing what I get excited about these days:)

We got a slight extension for our next pediatrician appointment -- 10 days instead of 7!  I know, its small, but to us, it's huge!  They will go back next week for weight checks and labs.  Here are a couple pictures to show you how big and alert they are getting since we don't have weights to report this week:

Hanging out and holding hands all by ourselves! (it was adorable!)

 

 

We really do look alike.

Paige is starting to fill in her seat!

Andrew's "surprised look" in his new hoodie from Santa!

Hope you all have a happy and safe New Years!

Merry Christmas

We had a wonderful first Christmas with our new family.  We hosted Christmas Eve dinner for both sets of Grandparents and then spent most of Christmas day relaxing with just us.  The babies got SO many presents!  Many of which were from Santa...which means I spent hours wrapping and then opening them myself.  Crazy, I know:)  The nicest part was that Jack's boss surprised him on Wednesday by sending him home at noon and telling him not to come back until Tuesday.  That was a wonderful present for our family. 

Andrew in his Santa bib from Grandma!

Paige loves Santa!

 

Andrew as an elf!

And Paige's first tutu!

We hope your Christmas was as wonderful as ours!

Happy 2 Month Birthday!

Today was a fun day.  We celebrated my 29th birthday and their 2nd month birthday.  Where has the time gone? My 28th year had so much excitement, I can only imagine what this next year will entail.  We are finally settled into our new home with our two babies and life couldn't be better:)

Paige and Andrew visited the pediatrician again today (the worst part of the day!) and got weighed.  Paige is now 7 pounds, 5 ounces and Andrew is 6 pounds, 8 ounces!  Each time they get on the scale, I am shocked!  They each got their synagis vaccines and Andrew got the rest of his 2 month series.  Poor guy!  He was such a trooper, although he has been sleeping all night and did not even wake up for the couple guests we had over for my birthday.  That is SO unlike him! 

I wanted a simple birthday at home with the babies and pizza (since I've been avoiding it and trying to cut out most dairy!).  Our good friends, Alisa and Brian, came over to celebrate and Jack's cousin, Katie, came to help me out with the babies today.  It was a nice, relaxing dinner at home so that we could include my two most favorite people:)

Celebrating with my babies!

Happy 2 month birthday, Andrew!

And happy 2 month birthday, Paige!

We love you and couldn't be prouder of you both (even if you won't cooperate for pictures together :))!

And We're Finally at Term!

So yesterday was my due date.  Hard to believe since it feels like they've been around forever. When we are out for all of our doctor's appointments, everyone asks how old they are. I tell them and get an interesting look since they are so small.  So I've started adding: "but they were preemies born very early."  Then we get the "ohhh." I wonder when I won't have to add that clause to my answer and when we will really feel like they are actually their age...

They both continue to do great at home and we are thoroughly enjoying their awake periods...well, the ones during the daytime:) We're starting to really get into a routine since we've had several days without having to spend several hours at doctor's appointments.  This week we only have one appointment, too.  So nice!  We will head to the pediatrician on Wednesday for weight checks, Andrew's 2 month shots (poor guy!), and both of their synagis vaccines.  This vaccine is to help protect them from RSV (a respiratory virus).  The shot is super expensive and only high risk babies qualify for it. They will each get the shot monthly through the winter. 

We are starting to get into the Christmas spirit, too.  I've managed to escape a couple times and am almost finished with shopping.  The babies have been amazing and have even allowed me to bake a little and wrap some presents.  Here is Paige helping me wrap:

We will be hosting Christmas Eve dinner for our immediate families.  And then most of Christmas day will be just us.  We are a little sad that we won't get to see extended family this year because of the infectious risks, but there is always next year!  And we promise to take lots of holiday pictures!

8 Weeks Today!

Can you believe they are 8 weeks old today?!? I cannot believe how much they have grown in just this short time.  They are both starting to have longer alert periods, too, and are really starting to focus on things and track a little.  I cannot wait for the smiles to come, although I'm trying to be patient and remind myself that they will be behind in their developmental milestones.  Smiling will make those 3 am feeds a little more bearable though:) 
Yesterday's pediatrician appointment went well.  Paige weighed 6 pounds, 9.5 ounces and Andrew weighed 5 pounds, 12 ounces!  We saw one of the nurse practitioners, who was good.  Our pediatrician left for Australia the day after we met her for her daughter's wedding and won't be back until January - bad timing! But she chatted with this NP before she left and is having us followed by her until she returns. She helped me figure out the rate to increase both of their feeds and she adjusted Andrew's reflux meds for his weight gain.  Paige survived her first set of shots without a problem, too. She was definitely a bit more fussy than normal last night (they both are generally pretty easy and don't cry a whole lot), but nothing that wasn't manageable and no fever. Yay!

Our big issue is yet again, constipation!  Pooping is our topic of conversation quite a bit.  Paige likes to go several days without stooling and Andrew is now following in her footsteps. We know it has to do with the high calorie breastmilk they are getting and we've even added prune juice to their diets, but it doesn't seem to be working yet.  Paige was on day 4 today but as soon as Jack was on his way to buy suppositories, she went.  Thank goodness!  Her poor belly was getting huge and I'm sure she was so uncomfortable.  I guess all we need to do is threaten the suppository and she'll go:)  Now we are just hoping for Andrew to have the same success!

Tomorrow I plan to escape for a couple hours to finish Xmas shopping and leave Dad to fly solo for a feed.  We'll see how he does....I think he's a little nervous:)

Photo Shoot

Today was the day we visited the ophthamologist. Definitely not a fun visit.  They cry they like I have never heard them cry whenever they have this exam.  It involves a device to hold the eyes open and it looks HORRIBLE!  I mistakenly watched it the first time, so this time I turned around.  Poor Andrew's was a little traumatic, too, and he ended up with a burst blood vessel and small cut on the underside.  I felt so bad for both of them that we held them almost the whole afternoon and evening.

The fun part of the experience was that this was their first trip out of the house together and their first stroller ride!  We drew LOTS of attention with the double stroller.  Everyone is so excited to see twins.  And even more excited when they see how small they are.  The hospital is full of elderly people (no offense if you're old!) who all want to stop and talk and look at the babies.  So we made lots of friends in this adventure:)  Here we are:

Getting out of the house and to the doctor was quite the production.  But we made it.  And even on time!

They looked so cute in their outfits today that I decided to do a quick little photo shoot when we got home.  I thought the idea was great.  Paige and Andrew did not agree and were hardly cooperative...

We'll try again tomorrow for some better pictures together:)  But check out the Twin Album (link at the bottom of the website) for other more recent pics.

Tomorrow we are off to the pediatrician for weight checks, labs, and the first set of vaccines for Paige.  Wish her luck!

Paige's Appointment

Today was Paige's apnea clinic appointment at Georgetown and it was great.  Getting to and from Georgetown isn't the most fun, but well worth the clinic experience. We were given the options to follow-up at Georgetown, Fairfax and Children's.  At first, my plan was to go to Children's....until I found out that Georgetown's clinic is the only one run by neonatologists.  The others are run by pediatric pulmonologists.  The best part is that it isn't just an apnea clinic to manage the monitor. It's also a high risk preemie clinic for NICU graduates, so they will help the pediatrician to manage their growth and development, control their reflux, tweak their medications, and follow their labs. So wonderful!

Today, they spent about an hour with me going through everything.  Paige weighed in today at 6 POUNDS 6 OUNCES!!!  I was shocked!  And so were they:)  She has gained so much at such a fast rate that we are dropping back her calories a little bit.  We also are weaning her reflux meds since she isn't symptomatic at this point.  Her monitor had 9 "real events" since discharge, which is pretty good.  We need to go three weeks without an event though to get rid of the machine.  We did get advanced to only use it when she sleeps though. I cannot tell you how HUGE this is!  The stupid monitor alarms ALL the time. And poor Kodi goes crazy because it is SO loud.  We even had to warn our neighbors since it sounds like our fire alarm is going off all the time.  We'll go back in another month to download the data and see if she's outgrown these events.

At the end of our visit, I talked with them a bit about Andrew and some of his issues.  They told me to make an appointment for him next time, too.  Even after we are off the monitor, they will continue to follow them both for quite a while. This is another huge relief.  Its another resource for both us and our pediatrician.  The pediatricians are great with well babies, but the nutrition and calorie management isn't usually their thing, and they aren't as good at the reflux, anemia, and some of the other preemie issues.  Even with the new pediatrician, who I like, I still felt a bit alone in trying to tweak their calories and advocate for the NICU requests, since they often differ for the primary care practice.  This clinic will manage all of that and take another weight off my shoulders.  For that, I am super thankful.

Tomorrow is our one day without doctor appointments this week (hooray!).  We try to plan our baths on days that we don't have to leave the house since they drop their temps so much with that (hopefully they will maintain a little better soon...)  So that is on the agenda for tomorrow morning...and I may even sneak out of the house for an hour or two to try to buy a couple Christmas presents. I love the holidays and usually have all my presents purchased and wrapped at this point.  This year, I don't have much.  Except for all the gifts I keep ordering online for the babies:)  We did manage to put up our tree this weekend though.  I was determined to get this done since we are stuck in all the time. Now it's starting to feel like Christmas!

Paige & Andrew's first tree!

Look how our family has grown!

Cross your fingers for a good sleeping night for the babies tonight - we could sure use it!

Enjoying Life at Home

Sorry for the lack of post in two days!  Things have been rather crazy and our time is limited!  We are slowly getting into a routine with the two of them being home and are thoroughly enjoying our days away from the hospital.  We figured out that we had been there every single day since my admission on October 4th.  Crazy, right?!?  Needless to say, we don't miss that place:)

Andrew had his appointment with the new pediatrician on Friday and it went well.  We finally met the pediatrician that was recommended to us in that practice and really liked her! I was relieved when we left just to know that I have a good resource to call....because, well, we can't rely on the NICU folks forever.  They were pleased with how he looked and he weighed 5 pounds 3 ounces!!  We spent a lot of time talking about our management plans and we will go back with both of them next Thursday.  At that visit, Paige will get her shots, blood work, and weight check.  Andrew will just get weighed.  They advised us to do their shots on separate days since they are likely to be a bit more fussy and needy.  Much easier to only deal with one at a time like that!

This week is the week of appointments.  We have the pediatrician appointments Thursday, apnea clinic for Paige at Georgetown tomorrow and ophthalmology follow-ups for both on Wednesday.  Poor babies are going to be exhausted!  But least we'll get them all done and get a little bit of a break for the holidays. 

Here are a couple pictures of them from our relaxing weekend!

Our little guy in all blue!

Paige's funny face (Andrew sleeping in the background)

Time for blogging is up -- babies are crying.  I will blog more and post more pics later.  A couple people have asked me if I will continue the site now that they're home and the answer is yes.  My posts will probably not be daily though, as my free time is pretty much nonexistent at this point.  We also are in a much better place and hopefully won't have much news to report!  I will keep up the site though to share their continued progress as they grow bigger and stronger! 

First Day Home

We had a great first day together at home.  My mom is staying with us during the weekdays when Jack has to go to work so that he gets some sleep and I have help - thank God for her!  It is almost impossible to do both of their feeds by yourself at this point.  Whoever you start with inevitably wakes up the other as they cry and fight during their diaper change. Then the second baby screams because they are awake and hungry.  We've tried starting with each of them first but it doesn't work well either way.  Andrew is a much better eater and downs his bottle so it would make sense to feed him first....BUT he then needs to be help upright for a lot longer after his feed for his reflux.  Poor guy had a rough first night home last night and cried whenever he laid down.  I'm not sure if it was reflux, his diaper rash which looks quite painful, or just the adjustment of being home.  Regardless, I was up almost the entire night holding him upright on my chest.  He had a much better day today though and had several periods when he was able to rest comfortably.  His best spot seems to be his bouncy seat, as it holds him upright.  We may be spending many nights in this chair:)

We had a great alert period with both of them tonight as we cooked dinner. They both sat in their seats on the kitchen island and looked around for quite a while.  It is so nice to see them awake together!

Cooking dinner with Mom & Nana

Andrew - happy to be home!

Paige - happy to have her brother back!

Everyone keeps asking us if they look alike.  You don't really see it until they are sitting side-by-side, but they definitely share a lot of the same features. And he looks more and more like his sister as he catches up in size!

Andrew has an appointment with his new pediatrician tomorrow, which I'm anxious for.  I want to talk to them more about his reflux and about a plan for tracking his growth and adjusting his calories.  I'm also excited for him to get back on the scale.  During his one week at the hospital, he gained almost an entire pound!  Crazy, right?!?

Let's hope for a better night's sleep tonight and a pediatrician appointment tomorrow that doesn't wind up with a readmission!

Together Again

We are ALL home tonight and will be cuddling together:)  More to post tomorrow!

Home Tomorrow!

We are on track for discharge tomorrow at 4:30pm.  Andrew's last dose of antibiotics is scheduled for 4:00 and will run for 30 minutes. After that we are out of there!  His reflux continues but we finally decided today that his discomfort is worth giving Reglan a chance.  He got his first dose this afternoon and we will of course continue it at home. If there is no change by next week, we'll stop it. His diaper rash is mildly improved, too.  Our night nurse last night came up with quite the elaborate setup to encourage it to heal.  For those of you that are nurses, it's butt blow-by.  But this set-up is far more advanced then what we used in my PICU days.  Basically, they cut a hole in the buttom part of his diaper.  The urine is still targeted to the front of the diaper. They then make a "tunnel" for his stool to direct downwards.  His cheeks are up in the air with cream on them and oxygen breezing by.  And then, to prevent his tush from getting cold, they have a heat lamp shining down on him.  Crazy.  Here is a pic in case you don't believe me:)

Healing my diaper rash!

And here is a picture of how big our guy is getting.  He looks so big to us with those new chubby cheeks.  Today marked a record 4 pounds 15 ounces!!!

6 weeks old!

I can't wait for out little ones to be reunited tomorrow night!  They must have missed each other...

Ready for Thursday

Today was a hard day for me. I'm exhausted, frustrated and just overall done with the hospital.  Andrew is miserable.  He constantly grunts, grimaces, cries and dribbles milk out of his month.  Today I held him for almost two hours after each feed, and the second I would put him down after, he would start with these symptoms. The only thing that seems to help is if I hold him completely upright, on his stomach, on my chest.  This may be possible to do quite a bit at home if I had one child....but not with two.  None of the attendings want to treat with anything other than prevacid at this point since he continues to gain weight.  Prevacid helps with the acidity but not mobility.  Reglan is the other option, but with all the recent media focus on its neuro side effects, everyone is hesitant to use it.  Their only suggestion at this point is to eliminate dairy from my diet again.  It may also help the crazy stools he is having.  Actually, both Paige and Andrew are stooling nonstop, but Andrew has this horrible diaper rash that is also undoubtedly contributing to how miserable he is.  A dairy free diet is annoying, but I'm totally willing to do it if it will help.  I cannot stand to watch him be so miserable.  Those of you that know me know that I never cry.  Today that is all I have done.  I cried over spit up and a diaper rash!  I think I'm just done with this whole experience.  I'm ready for us all to be home and have some sense of normalcy.  And did I mention that my milk supply is completely dropping off?? I'm sure its related to stress.  Please just let it be Thursday...

Flying Solo

Another day behind us with Andrew at the hospital.  Hopefully only three more nights without him.  His reflux continues to make him miserable, although we haven't decided on how or if we should treat it with anything additional.  His last remaining IV infiltrated last night, too, and apparently there was difficulty getting access.  We walked in to a scalp IV today which I just hate. He also now has a little diaper rash that doesn't look very comfortable.  He just needs to come home where we can take care of him. But overall, nothing major is going on, which is good.

Jack goes back to work tomorrow, so I am doing all the nighttime feeds starting tonight.  My mom will then come and stay with Paige again during the daytimes so I can visit with Andrew. We'll see if I can survive through Wednesday!  But then we should have several days when we don't have to leave the house (aside from one pediatrician appointment for Andrew) so we can all catch up, rest and work on establishing a routine.  Everyone says that with twins you have to stick to a schedule and have a set routine.  I guess we'll find out if Andrew and Paige like that plan:)  More to report tomorrow.  To bed now for an hour of rest before pumping and feeding Paige. Goodnight!

Packing on the Pounds (or ounces!)

We made it to an open crib!  He maintained his temperature all day with the lowest setting in the isolette, so they moved him out this afternoon. We are all hoping that he does well overnight in his new bed. We are having some worsening reflux though, which is just about the most annoying thing ever.  Poor guy has classic reflux symptoms and is going through several outfits a day.  We should be buying stock in Dreft!  I talked with our favorite attending about other treatment options today that we haven't tried.  I'm not in love with any of the ideas so we are going to watch him more closely over the day or so and make a decision.  His reflux doesn't seem to be affecting his weight gain so far though.  He weighed in at 4 pounds 10 ounces today!!!  This is the closest he's ever been in size to his sister.

Speaking of Paige, she continues to be amazing.  We are so in awe of her and just want to cuddle with her all the time. She is really starting to master the eating thing and is chugging her bottles in shorter times and with less dribbling.  Her awake and alert periods are also getting more frequent and more lengthy, which is really fun -- although not after her 3am feed when she doesn't want to go back to bed!  The difference between one baby and two is huge!  We learned that just from the two nights Andrew was home.  We laughed today that we feel so well rested and full of energy after a night with just Paige feeding every 3 hours! Ha!

Jack goes back to work Monday, so tomorrow night I will be feeding solo.  We'll see how that goes!  We are all heading to bed now to try to get some rest saved up for during the week.  Its always hard to be without Andrew at night, although tonight is a little easier.  One of our favorite night nurses has him and she already called saying they were hanging out together watching the Hokies game.  It's so comforting to know that he is in good hands and is getting special attention.  Thanks, Vivianne!

One Day Closer to Home

Andrew continues to do well in the NICU, although we all miss him terribly.  He remains in his isolette and they are slowing weaning down his temperature.  They brought in an open crib earlier today, but his temperature is borderline so we are holding off for now. His cultures are all still negative but we are definitely completing the seven day course of antibiotics because of his clinical symptoms and other lab work on arrival.  His ANC has more than tripled in the last day though, which is good.  If all goes according to plan, he will get his last dose of antibiotics Tuesday evening and then may get to come home again.  It will be so nice to have him back!

Visiting with my favorite little guy today

Paige visited our new pediatrician's office this morning and they thought she looked great.  She came in well over 5 pounds, which was very exciting!  They talked about giving her 2 month shots at the next visit.  Can you believe we are already there?!?!  Crazy. 

Look at he cute outfit I wore to the pediatrician!

And I sat in the comfort rocker for the first time tonight (please ignore that its blue and my brother's! Mom & Dad have been slow about assembling mine!)

Please think warm thoughts for Andrew tonight and hope that he can come out of his isolette and play tomorrow!

Our Strong Little Guy

Andrew is doing much better.  He seems to like his antibiotics, although they still haven't found a source of his infection.  He also responded very well to the blood they gave him last night.  Yes, he finally required that transfusion that we've been debating about for a month.  He has color for the first time and looks great with his pink hue:)  His breathing was labored throughout the day so they wouldn't let him eat until late this afternoon.  Poor guy was starving and very mad about this.  It was so good to see him have energy to be mad though! They got a chest xray, which was a little hazy but not overly concerning.  They think he may just be a little wet from all the fluid and blood last night, so he got two small doses of a diuretic to help him better manage this. He was breathing a little more comfortably when we went back tonight though and he was so ravenous during his feed that he finished his entire bottle in under three minutes! You would think he hadn't eaten in days!

It is a little sad to see him back in his fancy isolette, which is the exact same bed that we started out in long ago.  This time around though, he almost looks big!  Here he is hanging out tonight:

Look how big our little cutie is!

It will take a couple days to wean his bed temperature back down to the point that he can self regulate and come out again to an open crib.  They also want to do about a week of IV antibiotics, so he will stay back in the NICU for at least that long.  It is amazing how strong our little guy is though and how beautifully he has handled everything that he has been through in the last 24 hours.  Hopefully, this next discharge will be for good and this will be the end of his torture. 

We did contact another pediatricians office this afternoon and talked with them about their management of high risk preemies.  They were very responsive to our questions over the phone and want to meet us, including Paige, first thing tomorrow morning.  I am so hoping that we like them and feel comfortable with their care.  The pediatrician we had chosen before was incredibly liberal in her management and didn't think frequent weight checks and labs, as the NICU recommended at discharge, were necessary.  She also didn't seem to think a barely 4 pound baby with a temperature of 96 degrees needed help.  Our NICU team called her office last night, as a courtesy call, to let them know their patient (Andrew) had been readmitted and was pretty sick.  They never called the NICU or us today to see how he was.... This only solidified our decision to switch care.

Paige continues to do great at home. We are slowly increasing the volume of her feeds, as she is waking up hungry and taking the amount with ease.  You can almost see her growing in front of you.  She looks great and we are hoping to break the 5 pound mark when we meet the new pediatrician tomorrow morning!

Thanks for checking in and for all the calls, texts, emails, and support last night and today.  Last night was very stressful but we are ALL doing much better today (besides the exhaustion which isn't going away any time soon!). 

Back to the NICU

Sorry for the lack of post yesterday. We were exhausted and then today has been rather eventful and quite stressful. Andrew had his first pediatrician appointment this afternoon and they took his weight and temperature. His weight was good - over the four pound mark! But his temperature was very low - 96 degrees rectally. This greatly concerned me but the pediatrician seemed pretty relaxed about it. She advised us to turn up the heat at home and buy a space heater for next to where we sleeps. In her defense, he did look great at that point with awake periods and effortless feeding. I was more worried though so I called the NICU when we left just to run it by them. They were much more concerned and advised us to bring him right in as a direct admit to be put in an isolette. They said that with a baby as small as he, it is nearly impossible for them to bring up a core temp that low on their own. We immediately packed him a bag and jumped in the car to head back to the hospital.

When we arrived, his temp was better and everyone's initial thought was that he is just small and needs some more help with temperature regulation. Then, as if a light switch was hit, he was more sleepy, wouldn't eat, and wasn't acting like himself. After a few quick labs, we realized he is likely septic or has some sort of infection that he isn't mounting a response to with a super low white count, super low ANC, and dropping crit (for those of you that are medical). The team just sent us to the waiting room (where I am writing this on my blackberry, please excuse typos) while they draw labs, get cultures, do a spinal tap, and get IV access. We will anxiously await all of these results and I will stay at the hospital tonight with him. Jack will go home to give my mom a break and do a couple feeds with Paige. Please keep Andrew in your thoughts and prayers tonight and hope that we caught this early and that he makes it back home with us again soon.

P.S. We are searching for a new pediatrician...

Welcome Home Andrew!

He's home! Although it still doesn't seem real. And we are in for quite the adjustment! We just completed our first feed and got ready for the night with both and the process involved mixing two types of fortified breast milk, preparing bottles for the night, drawing up and giving meds, changing diapers (twice for Paige since she pooped immediately after the first change) and changing into sleepers, feeding them both, burping, reacting to Paige's monitor about 4 times since the leads kept coming loose, and getting them both to sleep and moved upstairs to their bassinets.  It was quite the production!

Paige is still laying there, wide awake since its nighttime.  She seems to have day and night mixed up, which is just wonderful... The NICU team today told us that their graduates often sleep during the day when there is background noise since that is what they are used to and are awake at night when it is silent.  We are going to try background noise with tv and music tonight to see if that helps.  Otherwise, Jack and I alternate every other feed to respond to her cries and continually replace her pacifier.  It is so not fun in the middle of the night.  And Paige's pediatrician today told us this will likely take several weeks to get better. Lovely!

Speaking of her pediatrician, we like her so far.  She is pretty laid back, which I guess is good.  And she was happy with Paige's progress so far.  She still hasn't hit the 5 pound mark, but she's close!  Andrew will go to see her on Wednesday for his first visit, too.

Here are a couple pics of Andrew's trip home:

VERY ready to go home!

Tucked in and ready for the cold!

Front door pic...just like Paige:)

Being home with both of them tonight is so wonderful.  We can finally relax and not worry about one or both of them being at the hospital.  We don't have to wake up to call in to check on them or stress about who their nurse is going to be for the next shift.  I can simply roll over tonight and check on both of them myself.  It's amazing.  Here they both are heading to bed in their bassinets in our room:

Sleeping side-by-side

Tomorrow will be the first day that we haven't had to leave our house in so long.  Jack has been traveling every day to the hospital since I was admitted on October 4th.  Tomorrow we will be hanging out in our pajamas all day...just the four of us:)

Crossing Our Fingers!

So after two nights without sleep, we are exhausted.  But I had to quickly let you all know that Andrew is still on track to come home TOMORROW!  I cannot tell you how excited we are....even though this will start our crazy lives and even more sleep deprivation!

Tomorrow will be a pretty busy day.  Paige is scheduled to see the pediatrician, which we were warned will be a long first appointment.  We will then quickly bring her back home to stay with my mom while we go get all of Andrew's discharge stuff done and bring him home!  This is the plan for now, although the nurses are begging us to bring Paige back with us so they can say goodbye.  We'll see.  It's a lot easier for us to deal with just Andrew coming home.  He makes me much more nervous, especially in his carseat, and I'd rather focus on him for that first ride.

Keep your fingers crossed for no hiccups tonight and a smooth discharge tomorrow for Andrew!!

So we survived our first night with Paige:)  We barely slept though because she was constantly grunting, moaning and stirring.  I was turning on the lights to check on her every minute and Kodi was going crazy.  She hasn't pooped in almost two days, so we assumed it was related to constipation.  We talked to the NPs today though when we went to see Andrew and they told us these sounds are constantly made by preemies - even in deep sleeps.  I guess we just didn't notice them as much with all of the other background noise in the NICU.  In a quiet room, they made it impossible for me to sleep!  Jack, on the other hand, managed to fall asleep seconds after each feed.  I laid there so jealous of this ability.  I'm sure that by later tonight or tomorrow I will be so tired that I may actually sleep through it.  At least I'm hoping so!

Andrew is doing great!  He has not needed his tube in 36 hours and it is now out (hopefully for good!).  His temperature is still fluctuating some, but he's able to maintain it a little better.  If he keeps up this good work, they are planning for a Monday discharge.  I cannot tell you how happy this makes me!  We went back and visited him again today with Paige and it is so hard to all leave without him at the end of our visit.  He had a great awake period with us though and we chatted with him for almost an hour:)  Tomorrow we are leaving Paige with my parents for a couple hours so we can spend some time with just Andrew.  My mom came over tonight and "practiced" with Paige.  Just getting used to the techniques of feeding her and dealing with her monitor is a bit overwhelming.  Luckily, she has taken care of kids with monitors before and feels pretty comfortable. 

Hopefully, tomorrow will be Paige's last night as an only child and we will be bringing home our little guy VERY SOON!

Welcome Home Paige!

It feels surreal to actually have Paige home.  We've done several feeds since arriving and she has taken them all without a problem.  I find myself praying at every feed that she'll take it since the tube is no longer an option.  I wonder how long that will last.  I've also held her for most of the time we've been home.  I just can't put her down.  I think its because I've been told when I can and can't hold her since she was born and they've limited our interactions.  She's finally home and we get to decide.

We completed our monitor training before we left the hospital and its pretty easy to use.  The only thing is that it is SO loud!  It sounds like a smoke detector and we definitely have to warn our neighbors on either side:)  Kodi is also not a fan.  Paige alarmed twice since we've been home and Kodi freaked out.  I'm sure she'll get used to it soon though.

Our car ride home was uneventful but I was definitely one of those moms that sat in the backseat:)  She looks so tiny in her carseat and it made me so nervous (just wait until it's Andrew's turn!).  She didn't seem to mind it though and slept the entire way.

All buckled in!

Saying goodbye and ready to get out of there!

And we're home!

It was definitely hard to leave Andrew behind today.  He has had some trouble keeping his temperature up the last couple nights, so we moved him to a smaller, warmer room with less windows.  I felt like our old room was just too big for him alone anyway.  He did have trouble taking his feeds last night and needed his feeding tube replaced for two feeds.  Unfortunately, that starts our clock over and we need to wait at least another 36 hours to get the tube out again.  The saddest part of leaving him today was that he was about to get his circumcision and we weren't going to be there to comfort him after.  Our nurse promised me that she cuddled with him though and that he did great.  I already miss him so much though and know that things will be really hard until he's home with the rest of us where he belongs.

Thanksgiving

We had a great day despite the babies still being in the hospital.  Paige looks wonderful and will definitely be coming home TOMORROW!  We cannot tell you how excited we are...and how nervous!  I know we will be fine, but it is a bit overwhelming.  The monitor company will come to the hospital around noon to give us our equipment and train us.  We will then spend the afternoon getting things ready and spending some time with Andrew before we leave.  Andrew is going to need at least a couple more days before he joins us.  He is still having difficulty with temperature control (although he still remains in his open crib) and doesn't want to take a feed every once in a while.  He did pull out his own NG tube this evening though and they aren't going to replace it unless he needs it.  Fingers crossed!

Of course the kids had Thanksgiving hats and outfits!  Here are a couple pics:

Andrew and his very large Thanksgiving onesie:)

Paige wide awake and ready to celebrate!

Our two turkeys (taken a couple days ago when tubes were still in)

 

 

 

 

 

 

 

 

 

 

 

 

Footprint turkeys their nurse made for us!

Got to head to bed....we need some rest for our BIG day and the start of real sleep deprivation tomorrow:)

(**For those still unable to locate our picasa album for more pictures, I have added a link you can click on at the bottom of the blog.  And for those asking about the times I post, the blog records pacific time, so it's 3 hours behind.)

Lots To Be Thankful For...

Today was another good day, although Andrew is falling a little behind again.  Last night, he tired for two of his feeds and they had to use his feeding tube again.  In order to get his NG tube out, he was to go 36 hours without needing it.  This means the clock reset this morning around 6 am.  He has also had difficulty keeping his temperature up in his open crib.  They have been swaddling him in several blankets and I even brought in a warm outfit with feet to try to help.  He is still barely meeting the criteria to stay out of his isolette and we won't be surprised if he ends up back in it by the morning.  None of this is a huge shock (remember the roller coaster we are on??) and it definitely means that he won't be ready to go home quite yet.  Paige is ready though and we are planning on her discharge on Friday regardless of his status.  Although we are sad that Andrew won't get to go with her, we definitely don't want to push him too hard and bring him home sooner than he is ready.

As tomorrow is Thanksgiving, I've done a lot of thinking about how much we have to be thankful for this year.  After a very stressful nine months, we have two wonderful babies that are healthy and doing so well.

Our pregnancy was anything but easy.  It seems like we had every complication possible -- high blood pressure for me, preterm labor, growth discrepancy which turned into growth restriction for Andrew, cord blood flow abnormalities for Andrew and ultimately preeclampsia.  At 28 weeks, we found out about Andrew's cord abnormality and saw that he had dropped way off his growth curve.  They also found disproportionate measurements and we were told we had an increased risk for a genetic problem with him.  Our OB team felt our risks were too high and wanted to deliver shortly after this, but our high risk team allowed for hospitalization and close monitoring.  It was a constant battle between the two teams about which path to take: wait and risk an emergent delivery and more problems or deliver and face all the risks of prematurity.  No one seemed to know the right answer and we were given up to a 40% risk of intrauterine mortality for Andrew.

We met with the neonatal team several times and had very candid discussions about how neither of our choices were great but they felt the prematurity risks (especially with Andrew) outweighed us delivering at that point.  We pushed it to 31 weeks, but they continued to warn us about four major complications that would have the greatest impact on overall outcome and development.  The first was respiratory distress syndrome, which they both had minimal issues with. We were off CPAP within a few days and off oxygen completely within two weeks - unbelievable.  The second big concern was necrotizing entercolitis (NEC), a serious intestinal problem.  Andrew was especially at risk for this, as he had restricted cord flow and head-sparing intrauterine growth restriction.  This means that more blood was shunted to the head to help brain development and less to the lower half of the body (such as the intestines).  Although we introduced feeds at a frustratingly slow pace, they both escaped this, which was one of my greatest fears.  The third big issue was intraventricular hemorrhage (IVH).  This is essentially a brain bleed due to the breaking of very fragile, premature vessels after they are exposed to changes in blood flow and oxygen post delivery.  These bleeds can be minor and have minimal effects or can be more severe and be devastating.  Paige and Andrew have both now had three head scans and they were all normal and showed no evidence of bleeds.  The last big concern we discussed is retinopathy of prematurity, which is basically the abnormal development of retinal blood vessels that can lead to scarring and detachment.  In severe cases, this can cause blindness.  They both had their first eye exams today and although the vessels are still premature, there were no abnormalities seen.  They will follow-up again in the eye clinic in a couple weeks. 

As of today, we have now crossed all of our major complications off our list.  We will deal with the weight gain battle, feeding problems, and possible developmental delays for several months to maybe even years, but that is nothing compared to how things could have been.  When things get hard for us at home, which they inevitably will, we will remind ourselves of this.  We have two perfect babies and we have overcome quite a bit in just a short time already.  Happy Thanksgiving!

What a Day

I don't even know where to begin. Today was an exciting but very overwhelming day.  I feel like our prayers were heard and may even be answered!  Just as they described, Andrew's "light" turned on last night and he started taking all of his feeds.  As of now, he has not used the NG tube in 24 hours and it will come out tomorrow morning if he continues with this progress!  He definitely still has a weaker suck and tires frequently, but he's doing it all on his own. He also maintained his temperature all day in his OPEN CRIB! I cannot tell you how proud we are of him. 

Andrew and his big boy bed!

Their NICU Room with 2 cribs!

It's almost as if he heard all of our talk about Paige going home and decided he needed to catch up! The team thinks that if he continues at this rate, he will also be ready to go home very soon.  So soon that they are going to try to keep Paige until he is ready, too.  That means we will all get to come home TOGETHER!  We aren't counting on this, but our goal is sometime over the weekend!

We continued in our frantic race today to get everything done for discharge.  They got their repeat head ultrasounds, which were normal.  They also passed their hearing screens and did very well in their developmental exams.  Their car seat fitting was quite amusing, as they are SO small and look ridiculous in their seats (I'll take some pics later)!  Both of their event studies were completed tonight and reviewed, as well.  Paige had a significant number of episodes where she stopped breathing for more than 15 seconds and had associated drops in her heart rate.  For this reason, she will require a monitor at home.  Our little guy did great though and escaped the extra baggage.  This evening, we also did our family infant CPR training.  It was a very LONG day...

While all of this is so very exciting, we are sufficiently overwhelmed.  Their feeding sessions at the hospital with help right now are taking about 1.5 hours for both, plus 25 minutes for me to pump and clean up.  On top of this crazy schedule we will have at home, they have already scheduled us for a bunch of f/u appointments.  We will see the pediatrician VERY frequently, the nutritionist and developmental specialist.  They will also need to be seen in the eye clinic in 2 weeks and Paige will need to head to the apnea clinic (to manage her apnea and monitor).  We are sorting out their meds and types of fortifier now and Jack and I are very busy sterilizing everything at home and getting everything prepped now that we know what they are using.

One recommendation the team gave today, which was a surprise, is that both Paige and Andrew should sleep in our room for the time being.  We were definitely not planning on this and they have beautiful, BIG cribs all ready for them in their very own room.  I now have to go out tomorrow morning and try to find some smaller bassinets that will fit next to our bed.  As annoying as this is to plan for, I agree with them and don't know if I could leave them down the hall at this point. Their nursery is ready though and we will use it for naps during the day when I am close by.  We are so happy with how it turned out!

Andrew's side

And Paige's

All ready for their arrival!

Their closet - look how spoiled they are already!

Its hard to believe that in just a few short nights, they may be home with us and this nursery won't be so empty anymore!

Happy One Month Birthday, Paige & Andrew!

We had such a big day!  We celebrated their one month birthday with balloons, cupcakes and party hats!

Andrew in his birthday hat!

And Paige in her's!

Mom & Andrew partying it up!

On top of all of this excitement, Paige completed all of her feedings by mouth for the last 48 hours!  This meant her NG tube was removed this morning.  Check out her beautiful cheeks!

Tube free - the best birthday present ever!

Since she seems to be proving herself ready for discharge very quickly, we are all frantically making changes and gearing her up for home.  Her event study is in progress and we gave her vaccines today and switched her breastmilk fortifier to something I can buy and get easily at home.  I also got her prescriptions and dropped them off at the pharmacy today.  Tomorrow she is scheduled for her car seat challenge (she'll spend a couple hours sitting in her car seat on the monitor to prove she doesn't collapse her airway), repeat head ultrasound, and developmental assessment.  Then Wednesday is her eye exam and hearing screen.  The exact day of discharge isn't known but we are looking at sometime between Wednesday and Friday!! Can you believe it?!?! We are still in shock and a little bit nervous!

Meanwhile, Andrew is working hard to keep up with Paige and get this feeding thing down.

Andrew working hard to finish his bottle!

He hit a record weight of 3 pounds, 9.8 ounces today and finally reached Paige's birth weight!  He is also doing much better with his temperature control and may be ready to move to an open crib by the end of the week.  We are really hoping that he isn't too far behind his sister.  We are so excited to FINALLY get her home, but it's almost bittersweet because he will be left behind.  They have never been apart and I hate the thought of him sleeping by himself at night.  I also won't be able to be there 12 hours a day like I am now with Paige at home.  I've talked a lot to the nurse practitioners about how people balance when one goes home before the other.  They've all told me that its incredibly hard but that most moms come for a couple hours in the afternoon and get someone else to watch the other twin at home.  Things have been hard so far but I feel like having them split will make life even harder.  I know I'm going to feel guilty no matter where I am and who I'm with.  I just hope that Andrew picks up his pace a bit and gets home so our family can finally ALL be together!