Friday, May 29, 2009

Crib land

Margot out in the open!
Wide-eyed David:
Well, the past couple of days have been good for the twins.  They are both in cribs now!  Margot has joined her older (by one minute) brother in crib land.  I took some pictures of their room and then some side shots of each of the cribs.  They show just how elevated the kids are.  They have their mattresses as elevated as the cribs will go and also are on a wedge that makes them even more elevated.  This is to help with the reflux.  They have a little Velcro sling that keeps them from sliding down the wedge.  The nurses say they are sleeping on "their mountains".  You can see why!


Today was a fun day because Aunt Jane came in town!!!  She is in town for our cousin Kate's wedding, which is tomorrow.  We are very excited for Kate and her fiance Adam and are looking forward to the event.  It's funny because we had anticipated I would be HUGE with the twins for the wedding and wondered what I would wear.....  

The first thing Jane wanted to do after arriving from New Orleans was visit the twins, of course.  :)  We went straight to the hospital from the airport.  Dad (Da) met us there.  

Jane and David:
Dad and Margot:
We had our friends Roman and Sandra over for dinner tonight - with their children Evelyn and Xavier.  It was a good time.  I got to test out our chicco hook on chair and lots of toys on Xavier.  And Roman brought over a gift he made for the twins.  It is a FABULOUS nightlight/sconce that he MADE!  It is sooooo cool.  He made it out of copper.  It is two (two = twins) palm trees (to go with our jungle animals theme) that can even be separated into two separate night lights down the road when they each get their own rooms......Thanks, Roman!  We love it!
Look how cool it looks when the lights are off.  It even shines the leaf patterns onto the ceiling.  The twins are going to think it's so cool!  
As far as updates go, everything with their exams on Wednesday went really well.  The eye doctor found their eyes to be immature, which is what was expected to be found.  They didn't see any problems, but will need to check them again in two weeks.  And the head and kidney ultrasounds were also good - no findings.  The doctors decided to take David and Margot off the antibiotics they were getting as a preventative measure for any kidney infections.  This is because they have extra collecting areas on their kidneys.  This is a genetic trait they share with their mom and their aunt Jane!  It is no big deal, but can increase the likelihood of urinary track infections or kidney infections.  That is why they have been on antibiotics since a couple of days after their birth.  But since all looks good, they are off them now.  We will see a specialist at Children's Mercy after the twins come home to monitor their kidneys.

They are both still on nasal cannula (2 liters of air flow) and are getting their feeds over 2 hours.  Today the doctor upped their caffeine (helps with apnea) and zantac doses to be in line with their increased weight.  Tomorrow he will look at decreasing their feed times (feeding them faster).  As far as weights go, David is 5 lbs, 1 oz!!! and Margot is 4 lbs, 7 oz.  They are really growing well!

They are still having lots of alarms, but they are coming out of everything on their own now.  It really has improved.  I notice when I am there....the monitors will start dinging and will stop before they even go to a real alarm that has to be re-set.  This is progress.  

Tuesday, May 26, 2009

Tuesday, May 26

No big changes today.  All they did was up the amount of food for each baby.  David is now getting 40 ml, and Margot is getting 36.  And they each gained weight last night!  David is 4 lbs, 13 oz, and Margot is 4 lbs, 3 oz.  

I held them together today (hadn't done that in a while), and they both did well until about 2 hours into it.....David woke up and started crying.  I think he was really feeling the reflux, because he was arching his back and had just finished getting all his food.  This woke Margot up, so she started crying.  I just laughed and thought I'd better get used to this.  :)  

Oh yeah, an update on their reflux medication.  We found out it is zantac, not reglan.  Not sure what the disconnect was there, but we were thinking they were getting the reglan when they actually have been getting zantac the whole time.  

Monday, May 25, 2009

Happy Memorial Day and Happy 4 Weeks!

David and Margot are 4 weeks old today!  I can't believe it.  I was discussing this with my dad today, and we decided that they are 4 weeks old today, but won't be a month old until Wednesday, May 27th (since they were born on April 27th).  Is that right?  It is almost as confusing as the whole counting pregnancy in weeks vs. months.  When I was 20 weeks pregnant, my mom would ask me if that meant I was 5 months pregnant.  Well, close, but not quite.  I was really more like 4 and 2/3 months pregnant.....

Anyway, there were lots and LOTS of fun updates from the nurse today.  When I got to the twins' room, David was wide awake, and she had just finished changing his diaper.  I held him for a while while she told me that the doctor had just seen both of the babies and had made some changes.  

David:
  1. Is now exclusively on fortified breast milk (he had been alternating between formula and breast milk).  Both babies are having my milk (20 calories/oz) fortified to 24 calories/oz.
  2. Is now getting his feedings over a 2 hour time period vs. continuous.  They each get fed at 3-hour intervals, so this is basically moving his feeds from being spread out over 3 hours to being over 2 hours.  He gets 38 ounces per feeding, so he is now getting 19 ounces/hour vs. the 12.7 ounces/hour he was getting.  This is a huge step because it is increasing the amount in his stomach at any one time.  And it is also moving him closer to a "normal" eating experience.
  3. IS OFF CPAP!!!  This is probably David's favorite update.  He is now only on nasal cannula - all the time - with 2 liters of flow.  Hooray!  No more squished nose and swollen eyes for David.
Margot:
  1. Is also getting her feedings over 2 hours vs. continuous.
  2. IS BACK ON AN NG TUBE!!!  Yes, they removed her NJ and put an NG tube in (now food goes into her stomach again vs. directly into her intestines).
Also, the nurse told me they have some big exams coming up on Wednesday.  They will have follow-up head sonograms to make sure there is no bleeding on their brains.  They had one of these the first week after they were born, and nothing was found, but they are checking again to make sure there have not been any changes.  And they will get their eyes examined on Wed. as well.  This is to see whether they have ROP (Retinopathy of Prematurity).  This is something some preemies can get, which is when their eyes are not developing correctly.  It can lead to vision problems, but sometimes will work itself out or can be corrected with laser surgery.  Keep your fingers crossed that both exams go well and find nothing.

So, this has been a very important day.  I sat with the babies through two feedings, and they both tolerated them pretty well.  David got squirmy and squeaky towards the end of each feeding, but he never spit up.  And neither did Margot!  This is great because it has been a few days before her stomach has had anything in it.  Both babies had lots and lots of alarms, but none of them required any stimulation - they both came out of any desats or bradycardias on their own.  Yay!

Sunday, May 24, 2009

Some pictures

There's not a lot to update today.  The doctor is keeping everything the same.  David and Margot each had a good day with less alarms than yesterday.  And if Margot pulls her NJ tube out again, they will replace it with an NG tube.  This is progress!  Bubba and I spent a nice day with the babies and then went swimming at mom & dad's.  Dad heated the pool, and we swam in the rain!  It was fun.

Here's a picture I took today to show how cute the tiny baby diapers are (and how much the babies have grown).  They used to wear diapers the size of the one in the middle - special order extra small preemie diapers.  Now they are both in the diaper on the right - regular preemie diapers.  I put my cell phone in there to give perspective.


Here are some signs I made for their room (as a cover for the time I spent making Bubba's suprise birthday card from the previous post).



Here is a shot I got of Margot while she was peacefully sleeping....



Saturday, May 23, 2009

Happy Birthday, Daddy!



It's Bubba's birthday today!!!!  Margot gave him a great present - she broke 4 lbs!  She is now 4 lbs, 1 oz, and David is 4 lbs, 10 oz!  A couple of nights ago, the March of Dimes sponsored a scrapbooking session where we could make signs for our babies' rooms.  I decided this would be the perfect opportunity to make a surprise birthday sign for Bubba from the twins.  Scrapbooking is harder than I thought!  I worked with the nurses to get Margot all un-wired and with David in his crib for the picture.  It was so fun.  Bubba loved the surprise, and so did the rest of the NICU.  

Update from the doctor today:  Both Margot and David had rough nights last night with lots of alarms/episodes, some of which needed stimulation.  And Margot pulled out her NJ tube!  They put a new tube in her and x-rayed to make sure it was in the right spot (it was).  Because of all the alarms, David is remaining on his 6 hours on/6 hours off of CPAP, and Margot is going back up to a 2 liter flow on the nasal cannula.  Bubba and I held the babies this afternoon, and they were precious as always.  They did have several alarms while we were there, but were able to come out of them all on their own.

Friday, May 22, 2009

Reglan

David and Margot are having good days again.  They got baths last night and both gained weight.  David is now 4 lbs, 7 oz - a pound over his birth weight!  And Margot is 3 lbs, 14 oz - getting close to 4 pounds!

They are going to start both babies on Reglan today to hopefully help with the reflux.  Margot will keep her NJ tube for a few more days until we see if the Reglan makes a difference.  Likewise, we will minimize David's changes to see if the Reglan makes a difference.  The nurse practitioner said it is not uncommon for babies to improve a lot and grow out of this reflux stuff before they go home.  Let's hope for that!

Update

No big changes with the kiddos today.  David gets 6 hours of nasal cannula per shift now (up from 3)!  The rest of his time is still on CPAP.  We love it when he is on nasal cannula because it seems so much more comfortable for him.  Plus, the CPAP causes swelling around his precious eyes because of the tight straps and hat that hold the "trunk" in place.

David with his CPAP "trunk":

Margot still has her NJ tube.  The doctor took her nasal cannula flow down from 2 liters to 1.5.  This is a step towards feeding via mouth - they need to be at 1 liter or less before trying that.

I did baby massage on margot today.  And I got some great open-eyed pictures of David.  They are really more aware these days.  Here is one with his much more comfortable (than CPAP) nasal cannual:


Thursday, May 21, 2009

Baby Massage


Today we had a baby massage lesson with Margot.  Bubba did a good job massaging her!  We learned a lot.  Tomorrow I will try it out with Margot, then we will schedule time for David.  

No real changes with the babies today - except weight.  David is now 4 lbs, 4 oz., and little miss Margot is 3 lbs, 11 oz. - 1 pound over her birth weight!

Both babies had good nights.  Margot had several alarms, but once the nurse suctioned her nose (there was a lot in there!), she was great.

Wednesday, May 20, 2009

NJ tube

I haven't written in a few days - I've been so busy & overwhelmed.  David remains on CPAP and in the open crib.  He is now alternating formula with breast milk (still on continuous feeds).  He also gets 3 hours per shift of nasal cannula time.  And he weighs 4 lbs, 3 oz.!

Margot had a big change today.  She kept desatting with feedings last night, so they decided to try an NJ tube for her (naso-jejunum).  This is a tube that passes through her stomach into the top of the intestines.  Up until now, they both had NG tubes.  The NG tube goes into the stomach.  Margot is still in the incubator and on nasal cannula.  She weighs 3 lbs, 9 oz.

I continue to help change their diapers, take their temperatures, and - of course - pump breast milk for them.  This is time consuming, as I need to do it every 3 hours!  Everyone says "well, at least you can sleep through the night while they are in the hospital".  Not true.

I also am holding them each day, which is so nice.  We usually doze off together.  They have been doing better when I hold them individually - more room for them and easier for me to make sure they have clear breathing pathways - so it really fills my day (hold one for a couple hours, pump, clean pump stuff and put everything away, hold another for a couple of hours, pump, etc.). 

David and Margot were 3 weeks old yesterday!!!  That puts them at "33 weeks gestation" today.  These past 3 weeks have felt so long, but when I try to remember them, it's like they have flown by.

Friday, May 15, 2009

4 pounds!

David is 4 pounds today!  Margot is 3 lbs, 6 oz. - almost to her brother's birth weight.

Today is a "keep everything the same" day for Margot.  She is still on nasal cannula (they did bump up her air flow a little bit), which seems to be helping her episodes.  Ad she is still getting her food over 2 hours.

David is still on CPAP.  The big change for him today is going to a formula vs. my fortified breast milk for his feedings (which are still continuous).  The doctor said it is common for babies to not tolerate the fortifier and is hoping the switch will take care of the water loss with his stools.  It is a fully digested formula that is also lactose free, so we will see if it also helps the reflux.  She told me not to worry - this doesn't mean he won't ever be back on my breast milk.  I need to keep pumping, etc.  If this doesn't help, we'll go back to breast milk.  If it does help, we will evaluate.  She says it's not uncommon to have babies go home on a couple of bottles of formula per day with the rest of their feedings being breast milk.  

Thursday, May 14, 2009

Reflux

It was another step back for David today.  The doctor called this mornign to say she thought he was suffering from reflux - which I had suspected.  She said they were pretty sure because he did so well during the 6 hours of no feedings after his blood transfusion.  They decided to give him a transfusion because his hemoglobin levels are low.  This happens a lot with preemies because their red blood cells aren't reproducing at a very fast rate yet, and it is not helped when the doctors need to take blood from them for tests, etc.  Anyway, this kind of confirmed the reflux idea.  So the plan was to spread his feedings out over 2 hours (vs. 1 hour) and to move him into a crib - which can be more elevated under his head.  I have to admit, I was excited about the crib thing - that is a big milestone.

I got another phone call from the nurse a couple of hours later that squashed any excitement.  David had a bad desat episode that required stimulation and the "bag & mask".  Because of that, he was put back on CPAP (he was on nasal cannula yesterday).  They decided to keep him in the incubator, too, so he wouldn't have to work at regulating his temperature.  When Bubba and I got there, they told us they wanted to take a blood and urine sample to check for any infections.  They also changed his feedings to being continuous - with a little bit going into his stomach all the time.  He looked so uncomfortable with the CPAP.  It really scrunches his nose and causes his eyes to swell.  And he had some desats while we were there.  My heart aches for him!  He had some clothes on when we got there - from when they had been preparing him to move to a crib - and he looked so cute in them!

Margot is doing a little bit better than David.  She spit up a couple of times yesterday, sot hey think she is having reflux issues, too.  They increased her feedings to take 2 hours (vs. the one hour they were taking).  I held her before the infant CPR class Bubba and I took.  She is so strong and likes to lift her head a lot. 

Tuesday, May 12, 2009

NICU rollercoaster

They say the NICU is 2 steps forward, 1 step back.  After many steps forward (no more billirubin lights, moving from CPAP to nasal cannula to nothing, increasing feeds), today was a "step back".  

We got a call from the nurse around 7:30 this morning to tell us that David is back on CPAP due to the many episodes he was having, some of which needed stimulation.  These episodes are either desats (when his oxygen levels go down), bradycardias (when his heart rate slows too much), or apneas (when he forgets to breathe).  I am thinking he has reflux, because he seems so "uncomfortable" and has been fussy - acting like a different baby than the one we have been watching over the last week.  He is now so squirmy and was arching his back a lot and making coughing sounds while laying on my chest.  

On the positive side, both babies have continued to gain weight!  David is 3 lbs, 12 oz., and Margot is 3 lbs, 3 oz.

Monday, May 11, 2009

Mothers Day

Today was my first Mothers Day ever!  Bubba gave me some beautiful diamond earrings as a gift.  I love them and will wear them all the time.  They are perfect - right now earrings are the only jewelry I can wear due to scrub downs in the NICU.  They are the comfortable "huggy" kind of hoops, so they feel good to sleep in, etc.  Plus, they are very meaningful because there are two (two babies) and they are diamonds (the babies' birth stone).  I don't know if I'll ever take them off....

The March of Dimes hosted a Mothers Day brunch in the NICU and gave each mom a pillowcase with their kids' footprints on it.  Swoon.  They also took pictures of me with David & Margot, which I now have on display at my "pumping station" in Bubba's dressing room.

Margot broke 3 pounds!!  She is now 3 lbs, 1 oz.  I panicked when I saw her this morning because she had the nasal cannula back in her nose (they both have been breathing unassisted for a few days), but the nurse told me it's just room air going through there reminding her to breathe.  It has helped with her episodes.  David was peacefully asleep the whole time I was there.  He is now 3 lbs, 10 oz!

Saturday, May 9, 2009

Busy, busy

Whew!  The last few days have been so busy.  It doesn't seem like it should be so busy, but between NICU visits and pumping and trying to sleep, it is hard to even find time to eat.  This has been made easier, though, by the incredible friends and family that we are fortunate to have.  Denise completely stocked the kitchen with all sorts of food, and yummy casseroles and other dishes keep coming from our support network.  Thanks to everyone!

The best thing about the past few days is that we've been able to hold David and Margot together.  It is so wonderful.  Today I held them for about 2 hours.  I even dozed off a little and woke to find little Margot with her fingers wrapped around one of David's fingers.  Awwww, so cute!

Wednesday, May 6, 2009

Kangaroo Care

Tonight was a good night.  Bubba held David, and I held Margot for a little over an hour.  We are loving "Kangaroo Care", which is when we hold them "skin-to-skin" on our chests.  It is supposed to be good for them - and is definitely good for us!  :)  They are both so cute and precious!  And they both gained weight.  Margot has now surpassed her birth weight.  She is 2 lbs, 12 oz, and David is 3 lbs, 4 oz.  Here is Bubba holding David (with me joining in).


We went to see them before lunch, too.  David was all smiles.  The nurse put a warm blanket on him because his temperature was slightly low, and he got very relaxed - too relaxed.  He had an episode where she had to stimulate him, so off came the blanket.  

Margot was very squirmy and fussy.  I changed her diaper - she is getting close to moving up a size from the "extra small" preemie diapers to the regular preemie diapers.  David already has moved up to these.  Margot was crying when we left, which was so hard....

Tuesday, May 5, 2009

One week old!

David and Margot are one week old today!  We celebrated by holding each of them for about two hours.  It was so wonderful.  David kept smiling while Bubba was holding him - so adorable.  And little Margot is so strong!  She keeps lifting her head.  

I just called the night nurse and got good news - Margot gained 40 grams - no more losing weight for her!  She is now 2 lbs, 10 oz, and David is 3 lbs, 2 oz (these weights are lower than their birth weights, but that is normal)!  Hooray.

I decided to start this blog to keep everyone updated on how the twins are doing.  The past week has been pretty crazy for our family!

The background story:

Everything had been going really well with my twin pregnancy until my ankles and feet started swelling.  A lot.  It finally got to the point where I couldn't fit into the size 11 shoes my mom had bought me (I usually wear a 9.5) and could barely make it down the stairs in the morning (feet couldn't bend for the steps).  I called the doctor's office and made an appointment to see him on Friday afternoon with the thought that he would see how miserable I was and put me on bedrest for the rest of my pregnancy.  I did not want to do this, but it was getting so hard for me to go to work.  I figured I could work from home on a laptop.

Friday afternoon I picked my sister up at her apartment and headed to my dad's office for a quick lunch before my appointment.  When Martha and I got to the doctor's office, the first thing they did was take my blood pressure.  The nurse said immediately that I needed to lay down on my left side and that she was going to go get another nurse to check and make sure she heard my pressure right.  Uh oh.  This was not good.  Another nurse came in, and then the doctor did, too.  He told me my blood pressure was high enough that I needed to go be "observed" in the hospital.  Martha and I walked over to the labor and delivery area of the hospital for the "observation".  

They hooked me up to two monitors for the babies' heart rates and had a blood pressure cuff on my arm that went off every hour.  Yes, every hour.  We were in there for 5 HOURS.  My blood pressure never came down, so I was admitted to the hospital.  Martha called Bubba (who was in Manhattan for the evening with some friends) to tell him that I was in the hospital.  At this point, we assumed I'd be heading home the next day.  We were wrong.  Once they got me in my room, they told me that I had severe pre-eclampsia, and the only cure was delivering the babies.  Martha and I immediately thought, great, I'll be in here for a month or two.  Not so.  My blood pressure was so high (190/105!) that the health risks to me (seizure, stroke) were very real.  They told me the babies would be delivered in 48 hours - after I had the two rounds of steroids to help develop their lugs - or earlier.  

Panic!  I was only at 29 weeks!  What would this mean for my twins?!  My mom and dad arrived at the hospital to help me cope with all this news and change.  Bubba arrived shortly after - surprise!  We had told him not to come because we didn't realize how serious this all was - and didn't want to ruin his trip with our friends who had flown in from Charlotte.  However, he had left Manhattan as soon as I was admitted.  When he arrived, I cried tears of joy to have him there, and we got down to the business of discussing baby names.  We were supposed to have 10 more weeks to discuss this stuff!  

I spent the next 48 hours with wonderful nurses adjusting my baby monitors and taking my blood pressures around the clock.  Fortunately, nothing happened to cause me to have to deliver the babies before the steroid treatments were complete.  We had the c-section scheduled for 8am Monday morning.  I called/e-mailed work to let them know that I wouldn't be back for a while and started to prepare myself for having these babies.  

Monday morning came, and I was so excited to meet my babies (although worried about how they would do being so young).  Bubba and Dad got dressed up in their scrubs (they would both be in the delivery room with me), and the nurse took me into the delivery room to get my spinal block.  Bubba and Dad joined me, and the fun began.  David was born first - at 8:54am, followed one minute later by his sister Margot.  A boy and a girl!  I was so excited to find out their genders.  Bubba went with them to the NICU, and dad stayed with me for the rest of the surgery.  They rolled each baby by me on the way out so I could at least see them.  They were beautiful.

I spent a couple of hours in the recovery room and then got wheeled in to the NICU to get a better look at my babies.  They were all covered in wires and tubes, but they looked so wonderful to me.  David was 3 lbs, 7 oz, and Margot was 2 lbs, 11 oz.  Such tiny little babies!