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!