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!

The H Word

We had another great day and the H word came up several times.  Even the doctors and nurses are too afraid to say it, so we all tip toe around the word as to not jinx how great we are doing!  Paige has now been 24 HOURS without needing to use her feeding tube!  She is breast or bottle feeding every three hours and is only taking about 20 minutes max to complete her feed.  This is a HUGE accomplishment.  If she continues to do this tonight, they will pull her nasogastric tube in the morning!  I cannot tell you how wonderful it will be to look at her face without a tube.  We also started her event study tonight, which will determine whether she needs a monitor at home.  This takes two and a half days to complete, so its the most time consuming thing on our discharge checklist.  They even asked us to bring in her car seat for that test tomorrow.  We are potentially looking at a very big event for her by next weekend:)

Andrew is also doing great, although his slow and steady progress is being masked by the leaps and bounds Paige has made over the last few days.  They told us feeding just clicks one day.  A light turns on and suddenly they eat.  This was definitely true for her.  We are getting there with him, but it will take a little longer.  We reminded ourselves yesterday that he still hasn't even reached Paige's birth weight.  So he definitely deserves some extra time and attention.  He is eating a couple times a day and finished his whole bottle at two feeds today.  He is just still very much our little guy and his energy is depleted very quickly.

Tomorrow is their one month birthday and you bet we are celebrating!  Jack and I just finished making cupcakes for the staff and we are planning a little party.  Although the days seem to drag, we cannot believe its already been a month.  Its amazing to look back at their pictures and see how far we've come...

Feeding Progress

So we are advancing their oral feedings and are making some progress!  Paige is now allowed to orally feed as much as she can tolerate.  This means if she is acting hungry and awake, we breastfeed or give her a bottle.  If she is sleepy and uninterested, we rely on the tube.  Andrew is up to 4-5 feeds a day, too.  We pushed them a bit today when we were there and they were both exhausted tonight, especially Andrew.  They were completing their entire bottles early in the day, but by the evening they were falling asleep in the middle of the feed.  It is definitely going to take some time to build up their energy and stamina.

We've starting talking about our discharge checklist, which is a good sign.  They each have lots that has to happen before discharge and we'd prefer this all get done early so that when we are ready something silly isn't holding us back.  They both need eye exams, cardiology consults, repeat head ultrasounds,developmental assessments, event studies, vaccines, circumcision for Andrew, car seat challenges, and some other small things that I am forgetting right now.  This is a pretty big checklist and we will hopefully get a good start on it this upcoming week.

36 weeks tomorrow. Can you believe it?!?!

Weight Gain Battles

I am happy to report that there isn't much to report tonight.  We continue to work hard on establishing consistent oral feeding, although we have good and bad feeding sessions depending on how sleepy they are.  We are also back and forth with their weights, so we've increased Andrew's feeding volumes to try to bulk him up a bit more.  We will repeat a bunch of labs on Monday that tell us about nutrition and decide if we should up my breastmilk from 24 calories to 26 calories per ounce.  It'll be nice when weight gain isn't such a battle....although I think that is a ways off:)

Jack and I also went to an orientation with the pediatrician group we've picked for them last night.  We were really impressed with the group and stayed after to talk with one of the nurse practitioners about their situation.  They have lots of multiples in their group and several preemies currently, so they have lots of resources and support for families like us.  I am so relieved that we really liked their group since we will be spending LOTS of time there for the first couple months they are home -- Andrew, especially, will need very frequent weight checks and nutrition adjustment.  Oh our lives are going to be even busier than they are now, which is hard to imagine!


 

Great Day

Paige had a big day today....she moved to an OPEN CRIB!  This is a huge step for her and is so exciting!  Just looking at her in an open bed makes it feel like home is so close.  Check her out!

 

Here is her big girl bed!

She had no problem with her adjustment:)

Other then the brief minute Jack held each them in his arms together, Paige and Andrew haven't been in contact with each other since birth.  Paige's new home made it possible for our awesome nurse today to surprise us with this sight...

And they even got to snuggle together for an hour or two!  This definitely made ALL of us very happy:)   More updates tomorrow...

Change of Plans

We had a new group of doctors come in today and we changed our whole game plan.  They thought it was ridiculous that we were obsessing about residuals and neither Paige or Andrew was showing any other sign of intolerance (no distended bellies, no vomiting, etc.).  So, we just aren't going to check them anymore.  Simple as that.  And in addition, they advanced both of their volumes and decided they could each attempt breasfeeding and bottle feeding twice a day (basically something every other feed).  HUGE step forward.  We'll see how we do.  But it makes me feel better that we are actually trying to move closer to discharge.

Our insurance nightmare is also beginning for both my admission and their stays.  My stay has about 150 claims attached to it and is going to be impossible to sort through.  I spent an hour on the phone with the hospital billing department this morning and they were more confused than I am.  Lovely.  Then, we came home tonight to a letter in our mailbox saying the kids NICU stay is denied but they approved them for transitional care.  What does that mean???  This will be a fun mess to start dealing with tomorrow.

To bed for now because I have no energy to think about all of this!  But hoping for success with our big step forward and good news tomorrow night!

Time for Baths!

Another day of closely counting calories and watching residuals. Paige still isn't tolerating nearly enough calories, but Andrew is doing great and we were able to increase his breast milk to 24 calories per ounce today - woohoo!  The even better news is that they both had good weight gain today.  Let's hope this is the start of a new trend!

 
The highlight of my day was bathtime!  They each got sponge baths and hair washes in the sink, which was adorable!  Here are a few pics (check out the picasa album for more):

Andrew's first hair wash with Mommy!



And he's even trying to help!



Paige's turn!



She loves it!

  

All dried off and ready to eat!


They both had wonderful alert periods for a good while after their baths and my mom and I thoroughly enjoyed them.  Even though I STILL haven't gotten to hold them both (I'm not bitter!), I did get a quick pic of the three of us today:





 

The way you feel about your children is something that is really hard to describe and something I could have never imagined before now.  Its amazing how much you care about these babies you first meet and how you would instantly do anything for them.  I was talking to one of the nurses the other day about how hard this whole process is and how difficult it is to be away from them.  She described this instant bond so well.  She said: "You love the baby inside of you from the second they are created.  But you fall in love with them the second you meet them."  This is so true.  Can't wait to get them home...





So Sick of Talking About Feeding!

Another day of ups and downs with feeding.  It seems like that's all I blog about lately.  Right after my post last night, we talked to Paige's night nurse and found out she wasn't tolerating her feeds again.  I was so mad at her -- right after that post bragging about her!  It got a little better this morning and then she had some more big residuals this afternoon.  So frustrating.  Especially since she is losing weight.  But we aren't making any changes yet.

Good news is that Paige took another entire feed by bottle and Andrew did 2/3 of his feed for the first time tonight!  Until now, we hasn't been able to coordinate at all but maybe he's finally starting to get it!  Its a fine balance between pushing them to work and bottle feed but not burn too many calories and tire them out so much that they can't digest.  I think Jack and I are still in the process of accepting how slow this is actually going to be....

Many of you have asked for recent pictures.  We have been posting a couple every day or so and they are in the picasa album I shared with you all earlier.  Here it is again:
Twin Album

Think good digestion thoughts for us and let's hope for some weight gain tomorrow!

Fingers Crossed!

It is almost as if they know we are down one day and they do their best to make us happy the next.  We left the hospital tonight with a totally different attitude than last night.  They both started on the new fortifier this morning and Paige seems to like this a whole lot better.  Andrew may not love it as much, but his residuals aren't enough to make us overly worried yet.  We are so hopeful that this will work and we will see some progress with their weight gain after a couple days of good eating!

Paige also made our night by completing her first WHOLE feed by bottle!  Usually, she takes part of it and we have to tube feed her the rest.  Tonight she was wide awake and took the entire thing. This is really hard work for her though and she was exhausted and passed out immediately after.  Andrew also did wonderful with breastfeeding and lasted a good 15 minutes before tiring out.  Now we are just hoping he figures out the bottle sometime soon, too!

We have had lots of visitors over the past several days and have thoroughly enjoyed starting to introduce our little ones to others besides grandparents:)   While it still isn't possible for everyone to hold them, just having your company to break up our long days in the hospital is wonderful.  So thank you to those that visited and thank you for all the cards, phone calls, emails and support you have given us over the past several weeks.  It is truly what is getting us through this whole experience...

"We Are Stuck"

More feeding issues today.  We have now stopped the higher calorie feeds for Paige.  She continued to have huge residuals and over half of each feed was sitting in her belly without being digested.  She was put back on straight breast milk this afternoon and we weren't allowed to hold her or attempt breastfeeding tonight, which was hard.  The neonatalogist today came in and said "we are stuck."  That is how I feel, too.  We can't keep her on the higher calorie feeds if she can't digest them and utilize the calories, however, they are still far from their nutritional goals and aren't getting enough for adequate weight gain.  Her idea is to give her a break until the morning and to try to introduce a dairy based fortifier to bulk up the milk.  This is meant to fortify breast milk (the other stuff really isn't and is just used for those that can't do dairy) and is also higher in protein.  We are hoping this helps Paige...and if they tolerate it, it may mean a dairy diet for me again:)

Andrew is doing a little better than his sister but is also having bigger residuals than he has more recently. He was also super fussy tonight and was awake and crying for over 2 hours.  That was hard, too, because there isn't much we can do to comfort them right now and they aren't allowed to be out of their isolettes for very long.  It broke our hearts to just sit and watch him cry without being able to pick him up...

The good news we got today is that Jack is a match for Andrew.  THANK YOU to all of you that contacted us volunteering to donate blood and sorry we haven't gotten back to some of you already.  For now, we are okay with what Jack was able to give, but we may need more later.  It would mean a hike to Annandale, Virginia, though so we hate to ask that if we don't have to...

Today wasn't the greatest day, but we are hoping for better news and feeding tolerance tomorrow.  We are due for a step or two forward, right?!?  

Feeding Frustrations

Why does something that seems so easy have to be so difficult?!?  It seems like we are so close to home in most areas, yet we appear to be so far from our feeding goals.  Paige did a little better with her bottle today, yet we still are only letting her attempt one bottle feed per day.  Andrew is not interested in the bottle at all and we are lucky if we get a couple milliliters in before he spits it all out.  Paige is not liking her higher calorie breast milk either.  She continues to have huge residuals and we keep having to bump down her volumes.  Instead of throwing in the towel and putting her back to regular breast milk, the team has decided to start some reflux meds.  Hopefully this will help with motility and digestion.  And maybe even her bradys/apneic events, as these seem to occur more frequently after feedings and are often associated with reflux, too.  It seems like its going to take forever to get them both to eat their goal volumes EIGHT times a day!!

Despite our feeding frustrations, we celebrated their three week birthday today and reflected back on what we've been through.  Another set of twins got admitted tonight (30 weekers) and their course was looking very similar to ours.  The mom got wheeled down on a stretcher to see her babies and they were both full of lines and tubes and needing lots of support.  Jack and I walked by their room and immediately said how grateful we were to have been way past that point.  Guess we shouldn't complain too much about the annoyingly painful process of learning to feed.  Things were a lot worse only three short weeks ago...

Quick Update

We're exhausted tonight, so here are a few quick bullet points for the day:

*Feeding wasn't so wonderful today.  They both actually did pretty well with breastfeeding and Andrew even had his bottle debut...but neither of them had any interest at all in the bottle tonight.  Disappointing.  And Paige doesn't seem to like the 22 calorie breastmilk very much.  She isn't digesting her feeds again and has a lot of residual (milk left in her belly when its time for the next feed), so they have had to drop her volume for several feeds today.  If this isn't better by tomorrow, we will put her back to regular breastmilk.  We are really hoping we don't have to do this though, because the team is already a little disappointed by their weight gain and this won't help.  They were gaining pretty well but have plateaued over the last couple days.  I think its because they finally cleared all that poop:)

*They each got a sponge bath today and screamed throughout the entire thing.  What they loved though was their hair wash - and this was a first today!  The nurses hold their heads over the sink and give a little scalp massage with the wash.  They thoroughly enjoy this, but who wouldn't?!? It's like going to the spa!

*Jack survived his blood donation today.  We'll find out tomorrow if he's a match.  Problem is that Andrew's blood type is more rare and the donor has to be CMV negative - together this will be hard to find.  If Jack doesn't work, we'll try a few more people before resorting to the general pool.   Let us know if you are local and A or O negative and wouldn't mind trying to donate!

Time to take a short nap before the next pump.  Oh how I hate the breast pump - it runs my life! But that's for another blog at another time... Thanks for checking in!

Pushing Forward

Nothing big to report today.  We are continuing in the right direction though so that is great!

Both Paige and Andrew have reached their feeding goals and we are now boosting the calories in my breast milk.  They also have finally started moving things through their GI tracts and are now having regular and frequent (!) stools -- we can't complain because this is what we asked for!  Andrew has also now been given permission to join Paige in her daily breastfeeding attempts.  Both of them nursed today and I had the lactation consultant come in to help.  I was so impressed with both of them, as they latched and coordinated pretty well.  Today was the first day I think Paige actually got something worthwhile!

Both of them were also started on Epogen in the last two days.  This is an injection they will each get in their tiny little thighs three times a week.  It is used for anemia, as both of their blood counts are low.  This is very common in the preemie population but because Andrew is much smaller and his counts are lower, he is probably going to need a blood transfusion next week, as well.  We are working on all the paperwork now to set up direct donations for him and Dad is first on the list (they won't let me donate since I just had surgery) - we'll see if he can overcome his fear of blood and needles!

Jack has the day off tomorrow, so I'll have company at the hospital.    We are first going to try to get the car seats installed in the morning though.  We need those seats to be ready when they come home very SOON!

Dad's Impressions

Thought I would take a stab at this whole blogging thing and give Katie a night off. She probably deserves it. More progress was made today as Andrew got his PICC line out last night and is getting closer to getting full feeds. Today was also Andrew's first attempt at breastfeeding, and, while all he really did was blankly stare at Katie, given all the progress he and his sister have made in recent days, I am sure it will only be a matter of time before it clicks for both of them.

The past few weeks have certainly been a whirlwind for me. It's pretty crazy how kids can turn your life upside down from one day to the next. And no matter how much advice you receive from friends and family, no matter how many books you read on the subject, nothing can really prepare you for parenthood - especially the past couple of weeks. A few things I have picked up in this short time:

• The book Everybody Poops should come with a parental advisory sticker, for the parents not the kids.
• Every once and a while, Andrew and Paige smile. Katie and the NICU nurses say this happens when they have gas. I like to think that they learned that routine from their dad and/or grandpas. 
• I also never expected that there would be this much crying when it came to changing diapers. Sometimes, Paige and Andrew do it as well!

Thank you to all of you for the support that all of you guys have shown throughout this ordeal - we wouldn't be where we are today without it. I couldn't be prouder of Katie and the twins. The strength that all 3 of them have shown throughout this is nothing short of amazing. I am just lucky enough to be along for the ride.

Too Good To Be True

We are trying not to get too excited but things are almost going too well.  Everyone had a big day today and we had lots of firsts!

When I got there today, Paige had just finished her first bath and was wearing a shirt for the first time ever!  Its amazing what we get excited about:)  Seeing both of her arms free was fabulous and she can finally get completely swaddled - so nice for her.  She also hit her feeding goal tonight of 30 mL (one whole ounce!) every 3 hours.  We had our daily attempt at breastfeeding and she did much better, too.  So much better that the NP decided we could try her first bottle tonight!  Learning to coordinate sucking, swallowing and breathing can be difficult and we were forewarned that she would likely stop breathing throughout and not to be alarmed.  Paige was awesome and not only did she take 20 mL on her own but she didn't have one apneic spell during her feed!  She must know this is what she has to do to go home and she's trying very hard to get there...

Paige's First Bottle Feeding

Look how chubby our baby girl is getting!

Andrew is tolerating his feeds like a champ and has made great progress.  He is up to 17 mL every three hours and has to reach a goal of 23.  He finally seems to be ready to eat and he even had a big poop today to make room for this extra volume:)  Since he is doing so well, they have decided to pull his PICC line, too!  This will be done sometime tonight, so we will see both of his arms free tomorrow morning.  This means his first bath and clothes for both tomorrow!  You bet I'm getting there early to see all of this and to bring some cute onesies to wear!

Andrew - tube free for just a minute!

On top of all this excitement, while I was pumping tonight, Jack got to hold BOTH our beautiful babies!  I must admit that I'm a little jealous that I haven't gotten to do this yet, but look how cute they were....

 

And before they went to bed for the night, we got another quick family photo.

So proud of both Paige and Andrew and cannot believe how far we have already come...

Home Isn't SO Far Off...

Sorry for the delay in posting.  We were exhausted last night and just didn't have the energy to sit at the computer.  But the lack of post isn't because we didn't have a great day with some big steps to report!

Both Paige and Andrew hit the next pound mark in their weight-ins today!  Andrew hit 3 pounds and Paige hit 4!  We all joked that Paige couldn't just give him one day to be in the same weight class as her:)  Paige also had her PICC pulled way earlier then expected!  She is almost at her feeding goals and her fluids were running too low, so they decided to finish her last dose of antibiotics and get rid of her access.  They pulled it late last night, so we haven't seen her yet without it.  Seeing her with both arms free and getting to hold her without three extra lines will be amazing!

Feeds are steadily increasing and Paige should hit her goal by today.  Andrew's pace was increased and he should hit his goal in the next two days.  Once we hit their goals, we will start fortifying my breast milk -- basically we'll add packets to my pumped milk to bulk it up.  Regular breast milk and formula is 20 calories per ounce.  To help them gain weight without burning more calories to consume a greater quantity, we will make their feeds 22 calories per ounce and then up to 24 for Paige and eventually 26 for Andrew.  This will mean they need to be bottle fed eventually, but we'll first try to master the breast feeding since thats a bit harder for them and we don't want them to be too lazy:)  Paige and I continue to attempt this once a day, although she doesn't seem too interested yet.  Andrew has to get a little bigger and stronger first so that we aren't burning his calories without a reward.

So proud of the progress we made this weekend and hoping for continued success this week. Home is seeming not SO far off when you have a couple good days!

Making Some Progress

We've had a good couple of days and it feels like we are finally making some progress (knock on wood)!  Both Paige and Andrew are advancing their feeds and have each gained a little weight.  Paige is obviously way ahead of Andrew and may even reach her goals by tomorrow evening!  She is also due to finish her course of antibiotics tomorrow night.  If all of this goes according to plan, we may discontinue her IV nutrition and take out her PICC on Tuesday.  That would be huge!

Both of them also had their caffeine discontinued today.  This will take several days to leave their system and we will see how they do with their bradys/apneic episodes later next week.  Before going home, each of them will have an extended apnea study to determine whether they will need home monitoring.  We are crossing our fingers that they pass this test.  But if not, we'll manage.

Paige's new routine is to be sleepy all day when we are with her and save her energy for right before we leave at night.  We held her for several hours in total today and she slept each time despite us talking to her and moving her around.  As soon as we pack our bags to leave, she suddenly pops open her eyes and flails her arms and legs around.  This is the second night in a row that she's done this.  It's like she knows and is trying to entice us to stay.  She's manipulating us already:)  But its working, and it makes it even harder to leave at night...

Thanks for checking in on us.  Keep up the good thoughts and prayers.  They seem to be working!

Two Weeks

Happy two week birthday, Paige and Andrew!  We are so proud of how brave you both are.  Tons of IVs, umbilical lines, CPAP, bilimasks, suppositories, tube insertions, blood draws, spinal tap, PICC lines, and countless heel sticks - no newborns should have to go through all that and you two have been amazing.  Mommy and Daddy couldn't be prouder of you and are in awe of how perfect you are.  We love you!

Everyone Poops

Yet again, our discussions today focused on poop...or the lack thereof.  Jack decided it was time to inspire them, so we got them a present and he read to them tonight...

 

We'll see if his reading had any impact on their digestive tracts when we call before bed.  Paige did seem to be really into the book though. Here she is listening to Daddy.

We are continuing to increase Paige's feeds and she is up to 13 mL every three hours.  We had gotten as far as 17 mL before she was sick, so we are almost back to where we left off.  Andrew is still vomiting with some of his feeds but it is a little improved.  They decided to start increasing him today but we will go at a much slower pace.  Our big news of the day is that the team decided Paige could try to breastfeed once a day!  It won't count as a feed since she really won't be able to coordinate yet, but we will at least get to practice.  We tried this afternoon and although she couldn't really latch, we got to cuddle and sit together for over an hour.  It was wonderful.  Hopefully Andrew will get a chance sometime soon, too!

Slow and Steady Wins the Race

Nothing too exciting to report tonight, although I am happy to say that we had no setbacks today.  Andrew is continuing on his small feeds, although they still haven't attempted to increase his volumes, as his belly is still on the larger side and things don't seem to want to move through his gut.  Vomiting is definitely less than it has been though. We're just trying to be patient with his slow pace and accept that the process of learning to feed is going to be incredibly frustrating and painful (for us!).

Paige definitely likes her antibiotics and continues to look great.  She did get her PICC line placed this afternoon but did great with the procedure.  The nurse practitioner told me that they gave her double the dose of sedative normally used and she was still wide awake and fighting.  Andrew did this same thing when he got his last week.  At least they are fighters!  She is back on feeds now and we are steadily increasing them.  Before she got sick, she tolerated her feeds great, so we are hoping for a quick increase back to where she was. 

Tomorrow morning I will work on getting their nursery ready before I head back to the hospital.  Being on bedrest for almost 2 months really set me back in my preparations!  Plus, these children are so spoiled already!  Their room is completely filled with presents they've received just since they were born!  I'll try to post some pics of the nursery tomorrow.  I just can't wait for them to come home and sleep in those cribs that have been waiting for them for so long!

Getting Back on Track

Today has been a much better day.  Paige is back to herself!  She opened her eyes and was alert for the first time in a couple days.  She also screamed when she got weighed and let the nurse know she was not happy about being naked on the scale.  It was SO good to see.  As long as she continues to act so well tomorrow and her more recent labs and cultures look fine, they are planning to place her PICC (peripherally inserted central catheter) tomorrow morning.

Andrew is continuing to not like his feeds all that much, but the vomiting is more like spit up now.  Much more manageable.  We are continuing to give him very small volumes through his feeding tube and are still praying for a big poop -- hopefully Daddy will get the privilege of changing that tonight:)

Jack and I have been able to hold Paige and Andrew separately for the last week or so, but they still have too much equipment to hold them together.  Their lines and tubes have kept them on opposite sides of the rooms for their holding sessions.  They finally decided to take Paige off her oxygen (mostly because her belly was so distended) and see how she did.  This enabled us to put two chairs together in the middle of the room so we could all be together.  We still aren't quite able to hold both of them at once, but we did get our first family photo!

Rough Day for Paige

Today was definitely our hardest day yet.  When you see the NICU on your caller ID, it can never be good.  They called us this morning to let us know that Paige's blood culture from yesterday afternoon grew bacteria, which indicates that she has a blood stream infection.  I knew something was off with her yesterday.  We called several times last night after getting home to check in because I just had a feeling that she wasn't right.  Some of it is me being a nurse (more sleepy, vomiting, distended belly, frequent bradys).  The other part is me being mom (I just had a bad feeling).  We were reassured yesterday by her CBC and unremarkable abdominal xray, but I still wasn't comfortable sleeping last night.  In some ways, at least this gives us an answer.

So what does all of this mean?  For Paige it meant repeat cultures and more labs this morning.  It also meant a lumbar puncture (spinal tap) and the start of broad spectrum antibiotics.  She will need a procedure to place a central line (longer term IV) since these antibiotics will be needed for a while and her feeding is obviously set way back (Andrew had one of these placed last week since we knew he'd need longer term IV nutrition).  They won't attempt to place this line until they know what type of infection they are dealing with though, so that will be Wednesday at the earliest.  The good news is that she was already a little more perky when I was with her this afternoon.  Her bradys were also much less frequent than yesterday.  We are just very hopeful that we caught this infection very early and are already on the mend with the first couple doses of antibiotics.

As for Andrew, he didn't make today much easier either.  We finally restarted his feeds while I held him this afternoon and then proceeded to start vomiting again. The thought is that his gut just isn't ready yet.  I guess time will tell...

Of course all of this happened the day that Jack returned to work.  It's definitely hard to not be there when things happen and I know he's very anxious to get to the hospital after work to see them.   At least when you are there you can see what is going on for yourself.  The highlight of my day was that I got to hold Andrew for an hour today -- they don't let you do that very often!  We are hoping Paige is stable enough tonight to get to hold her.  That makes everything a lot easier.