Update

Evie and Sophie had their first neurodevelopmental assessment appointment today. We met with a physical therapist who tested the girls' gross motor skills, an occupational therapist who tested their fine motor skills, a speech language pathologist who tested their verbal/communication skills, and a developmental pediatrics specialist. They also had a hearing test (which they passed with flying colors) and had measurements taken.

According to the physical therapist, occupational therapist, and speech therapist, both girls are right on track with their developmental milestones! For this part of the appointment, they basically consider Evie and Sophie to only be 5 months, 12 days old -- this is called their corrected or adjusted age and is based on if they'd been born on their due date. The appointment took place right when they should have been napping, so the girls were pretty sleepy and crabby and the therapists couldn't quite get their assessments done the way they would have liked to, but based on what Nate and I told them the girls were able to do, they are right on track (sometimes even a little bit ahead of their adjusted age!)

Evie weighs 18 lbs, 12 oz. (50th percentile when NOT correcting for prematurity!) and Sophie weighs 15 lbs., 8 oz. (15th percentile when not correcting for prematurity.) The doctor was very pleased with their weight gain and said that they don't often see such great results. Several people commented that it was nearly impossible to tell that they were preemies. The doctor told us that, solely based on their cheeks, she knew they were getting enough to eat. :) Because Sophie has not yet hit the growth chart for her length, we were advised to place her back on the preemie formula, which has more protein, calcium, and phosphorus than regular formula and can help with bone growth. Such a bummer for me, but I'm glad she'll be getting what she needs.

The girls will go back for another developmental assessment in July. We knew they were doing pretty well with their development, but it was so nice to hear it from the experts. We have so much to be thankful for!

Here are some recent pics of the babes...

Having lots of fun playing. You can see that Evie is Little Miss Personality!

"We LOVE fruits and veggies!"

Had to take Evie to the ER because she had a hair wrapped around her toe that I couldn't get off. Poor thing! It cut her toe all the way around. Apparently, this is something that they see in the ER on a fairly regular basis! Here's my PSA: Check your kids' toes, people! (and other things, if you have boys...)

The girls were 30 weeks old in this picture, so they were out as long as they had been in! (Disclaimer -- I was really only 28 weeks in the first picture. I never got a chance to get another bump picture since my water broke and I was admitted to the hospital a few days before they were born).

One of my favorite pics of my smiley girls. You can see how identical they are!

Our first Halloween! I took the girls to a Halloween party at Nate's work. It was so fun!

The girls were dedicated this past Sunday -- such a special day!

Happy Holidays!

Nate, Sara, Evie & Sophie

6 Months!

The twins are 6 months old today!

We won't know their weights until their pediatrician appointment on Wednesday, but they're definitely growing! They wear 3-6 month clothing (although Sophie can still fit in a lot of the 0-3 month stuff) and size 2 diapers. Evie will be moving on to size 3 diapers soon! They sleep from 9pm until 7-8am (yes, I know, I'm a lucky momma!) and eat 6-8 ounces every 3-4 hours during the day. We're expecting the doctor to give us the go-ahead to try some baby food soon! Hopefully they'll like fruit more than their mommy! I may or may not have given them their first taste of ice cream on Saturday...

Both girls roll from tummy to back, and Sophie just started rolling from back to tummy this weekend. They are getting so close to being able to sit up on their own. They are big talkers and extremely smiley, and they're friendly with anyone who will pay attention to them (which is just about everyone!) Their favorite toys are their keys and Sophie the Giraffe.

Developmentally, the girls seem to be right on track. They might be slightly behind with a couple milestones, but they're not expected to catch up until around 2 years old, so we have some time! We will see a neurodevelopmental specialist in November just to make sure things are progressing as they should be... This is pretty standard for most preemies, from what I understand.

I get emotional every time I think of how blessed we are to have two happy, healthy, beautiful babies after everything we went through. The odds were definitely against us, and we are so thankful not only that Sophie and Evie's lives were spared, but that they have made it through a lot without any lasting problems. When I put the girls to bed by myself, we usually read a story and sing a couple songs before they go to sleep. My new favorite song to sing with them is one I remember from Sunday School:

God is so good,

God is so good,

God is so good,

He's so good to me!

I can't wait until Sophie and Evie can understand just how true this song is! Thank you all again for all of your support and prayers!

Our New Normal

Thought I would check in to let everyone know that things are going well at home! Although we are incredibly exhausted, we are absolutely loving being together as our little family of four!

The girls are doing so well!

Evelyn had a checkup last week and weighed 7 lbs. 7 oz. This is exactly what I weighed when I was born. Since the most baby I ever had inside me was 5 lbs. 11 oz., it's hard to imagine having an Evelyn inside of me, let alone an Evelyn plus a Sophie! I have to give a lot of credit to mommies of twins who are pregnant a lot longer than I was! Evelyn is doing great healthwise! She passed her hearing test today, her eye exams have been normal, and she's growing like a weed!

Sophie weighed 6 lbs. 4 oz. at her checkup this past week. Her weight gain has been a little slower all along, so we're working on that, but the pediatrician was happy with her recent weight gain. Her eye exams have been a little abnormal, but her eyes have been improving. The ophthalmologist thinks that her eyes will heal themselves and not need any treatment. She passed her hearing test today, but she will need to go back for a recheck in eight months because one of the antibiotics she was on in the hospital can cause hearing loss.

Both Evie and Sophie are a little anemic (low blood counts). This is pretty common for preemies, especially since both of them were in the NICU and had their blood drawn frequently. It doesn't seem it, but when you only have a little bit of blood to begin with, a small blood draw can make a big difference. The girls are both on iron supplements and are having their blood drawn weekly or so to monitor their blood counts.

The girls have adjusted well to eating formula. They eat about every three hours, even during the night. The pediatrician told us that they were allowed to go four hours without eating during the night, but it doesn't matter... Evie makes sure we are awake to feed her every three hours on the dot! It turns out that Evie and Sophie did not forget about each other while they were apart for eight weeks (as I had feared)! Neither of them like to sleep in their crib without the other, but they sleep very well together. If you're friends with Nate or me on Facebook, you may have seen the absolutely adorable pictures that we've posted of the girls in their crib together... even if we lay them at least a foot apart, they manage to scooch toward each other to be closer together.

During the day, the girls are awake for a couple hours, but usually sleep unless they're eating. We can't wait until they're more awake and interactive!

Nate went back to work last week Saturday, so I have been getting used to being at home with both girls when he's gone. I'm going back to work on June 25th. It's going to be so hard to leave the girls, but I also feel ready to start our new normal.

Now that we're home, sometimes it's easy for us to forget where we came from. We don't always remember that less than six months ago we were uncertain whether our girls would be born alive, let alone healthy! We are so thankful that we were blessed with two beautiful, healthy, miracle baby girls. Our journey was far from easy, but I think I speak for both Nate and myself when I say that we would do it all over again for our precious babies! God has been SO good to us!

Thank you for your continued prayers and support!

Love,
Nate, Sara, Evie, and Sophie

I'll leave you with some super adorable pictures!

Evie's first tub bath at home

Sophie's first tub bath.. ever! They both loved it!

How to get things done when you have a fussy baby...

Tummy time

2 months old!

Out for a walk downtown Holland. Don't mind Evie's headband slipping off her head!

Yes, the tiny little thing on that chair across the studio is my little Sophie! We had newborn photos done last week.

Snuggling during a nap

Sophie would not go in her crib without Evie, so I had to lay her next to me while I fed Evie.

Snuggles this morning

They both do so well in their car seats!

Quite Possibly My Favorite Day Ever.

Sophie is home!! Today is the day we've been waiting for, of course, since the babies were born, but even more in the last 17 days while Evelyn was home and we all had to kiss Sophie goodbye each night. After 55 days, our family is finally together! :)

As I mentioned last week, Sophie made an amazing turn around after her antibiotics were started. Almost immediately, she started drinking her bottles (which she had never gotten good at), became more alert, and just seemed so much healthier overall. If you remember from when Evelyn came home, one of the criteria to come home is that babies need to nipple (bottle or nurse) for 48 hours straight without having to use their feeding tube. By Sunday night, Sophie had done it! She had met all criteria to come home, but still needed to finish out her ten days of antibiotics. I tried to get the doctors to switch the antibiotics to oral so we could give them to her at home, but I had no luck. So, for the last five days, we have just been waiting (impatiently) for Friday to get here so we could take her home... and hoping that nothing went wrong that would delay this very exciting event! Luckily, everything went as planned for once, and we were able to leave the NICU early this afternoon!

Our family, ready to hit the road! As you can see, we are all thrilled, except Evie.

The girls in their car seats. If it weren't for Sophie's bald spot where her PICC line was, I don't know if I could tell them apart!

The girls ready to come home and never return! (Hopefully)

Daddy holding both of his girls at HOME!

Since arriving at home, we have just been showing Sophie the ropes of the Vander Ploeg household. She and Evie enjoyed a nap together, have been drinking their bottles, and chilling in their Rock-N-Plays, in addition to enjoying some snuggle time with mom and dad. :) As I write this, both of the girls have started fidgeting a little and will probably be ready for a bottle soon.

I was so thankful this week that Sophie was finally going to be able to come home, especially because we did have a major disappointment yesterday. Unfortunately, my breast milk continues to have Group B strep in it. Like I had mentioned before, this is a normal bacteria in many people's bodies, but it can cause severe infections in babies, like it did for Sophie. In fact, it can get even worse than it was for her and cause meningitis leading to severe, long-term neurological problems. The neonatologists and infectious disease specialists (who have never seen a case like this before), unfortunately, recommended that I stop breast feeding and that both girls start formula immediately. This was such a disappointment for Nate and me, given all the time and effort we have put into breast feeding and creating a store of breast milk to give to our babies. On the other hand, giving one or both of the girls another infection is a risk we are not willing to take. We're thankful we were able to breast feed them for 2 months, but it's still a huge bummer. We've been working on thawing our stored breast milk in small batches, and *sniff sniff* dumping it down the drain. :(

I'm done venting...I have a LOT to be thankful for!

Sophie's repeat echocardiogram showed that her PDA (the hole in her heart) was "tiny." It went from "large" to "tiny" in a week! The doctor thinks it will most likely close on its own, but Sophie will be seen by a cardiologist in 4-6 months to reevaluate. If it doesn't close on its own, and as long as it doesn't cause any problems, she will probably have to have it fixed by a minimally invasive procedure when she is one or two-ish.

We would appreciate your prayers as we adjust to life at home with our two precious baby girls.

As always, I want to THANK YOU for your prayers and support through this journey. We have been so touched and blessed to be so loved and cared about by our family and friends and also complete strangers. A special shout out to Abi Arendsen, who prayed for our babies in a precious little psalm she wrote in her preschool class. :)

Love,
The VPs - Together at last :)

Improvement!

If there's one thing I've learned as a NICU Mom, preemies (and their Mommies and Daddies) are constantly experiencing ups and downs ... when things are going well, there's no guarantee they will continue to go well. When things are going badly, they can turn around in a matter of hours... We have noticed a lot of improvements in the past week, and while we want to stay positive, we remain a little bit guarded because we know things can turn anytime.

On that note (sort of), I came across this letter written from a NICU nurse to NICU moms... and it really hits the nail on the head with describing what having a child (or children) in the NICU is like. I almost teared up a little when reading it, since we have experienced a lot of these things first hand.

 From a NICU Nurse to a NICU Mom

Last week Monday, the day we found out Sophie had another infection, was a pretty horrible day for us. By the next day, after being on antibiotics, Sophie was acting healthier than she had in a month! She was alert, crying when she was hungry, interested in drinking her bottles, and generally more awake than she had been since her first infection. Since then, she has continued to improve and is now back to acting how we think a normal, healthy infant should act. In fact, Sophie has drank all of her bottles for almost 48 hours now! Her feeding tube is out and she is doing a great job! Such a relief for us! Sophie also hit the big 5 lb. mark yesterday...such a big girl!

We believe we have figured out where Sophie got both of her infections from. My breast milk from the day I had mastitis and the two days prior was cultured and it was found to have group B strep, the same exact bacteria that infected Sophie's blood. Sophie most likely got some of this milk a few weeks ago and probably got some more again last week. This is really interesting, because when women have mastitis, they are always told to continue breast feeding and not to discard their milk. I guess, once again, Sophie broke the mold, huh? The infectious disease specialist said she has never seen a case like this before, but was able to do some research and find some rare cases in which this has happened. Crazy! So... because I never, ever, ever, ever, EVER want this to happen again, Nate and I had the pleasure of throwing out ten whole days worth of potentially infected milk tonight. Yikes!

Because the doctor believes Sophie was re-infected with the bacteria by drinking the infected milk twice (as opposed to having a recurrence of the same infection that we thought was cleared), she is only recommending 10 days of antibiotics. Today, Sophie was on day 6 or 7, I can't remember.

Besides dealing with the infection, Sophie also had an echocardiogram last week. This was news to us, but apparently the nurses have been documenting off and on that Sophie has a heart murmur. The echocardiogram showed that Sophie has a large PDA (patent ductus arteriosus)... this is a blood vessel that is open while babies are in the womb, but is supposed to close soon after birth. Hers is/was still open. Eventually, this can cause problems for babies by putting strain on the heart and causing breathing issues, among other things. So far, Sophie isn't showing any complications, but it still needs to be fixed eventually. There are three ways to fix it: It can close on its own (it's common for it to stay open longer in preemies than in term kids), it can be fixed by open heart surgery, or it can be fixed by a much less invasive procedure in the cath lab. Unfortunately, the doctor hadn't given us the vibe that he was confident it would close on its own, and babies need to be bigger than Sophie is to have the less invasive procedure to fix it. Imagine how disappointed we were when we found this out, and it sounded like the only option to fix it was going to be open heart surgery...

Until today! When we arrived to the hospital, not only did Sophie not have a feeding tube in, but the nurse also told us that she didn't hear a murmur this morning, and neither did the doctor!! The best news I've heard in a long time. This certainly doesn't prove that the PDA has closed, but we think it's a good sign. At some point, they are going to recheck another echocardiogram to see how the PDA looks. When she's ready to go home, if it hasn't closed, we will just have to follow up regularly with a cardiologist until it can be fixed... hopefully, we will have enough time for her to get big enough to have the less invasive procedure. If it has closed, then she's all set! We are told that stressors such as infection can make the PDA open, so we are praying that it was just associated with the infection and that it has now closed since the infection is clearing.

Evie is still doing great at home! As of two days ago at the pediatrician, she weighed 5 lbs. 14 oz.

Thank you for praying for our little munchkins! We are so thankful they are both doing so well at the moment. We are praying that we will be snuggling them both at home sooner rather than later. :)

Love,
The VPs

Quick Update on Sophie

Sophie is improving a lot! When we got to the hospital this morning, Sophie was off oxygen, awake and alert, and crying because she lost her paci. Not fun seeing your daughter cry, but better than seeing her lethargic and knowing something is wrong!

Sophie's nurse told us this morning that the blood culture from yesterday did, in fact, grow group B strep. This is what we had all suspected, including the pediatric infectious disease specialist, who met with us at length today to explain everything and answer all of our questions. When I asked her about how rare this infection was, she said it actually wasn't that rare, so obviously wherever I read that it only occurred in 4 out of 10,000 infants was incorrect. :) Unfortunately for Sophie, she is one of the approximately 3% of infants who get the infection again after it has cleared. The obvious next question is whether a third occurrence of the infection would be likely. In her career, the infectious disease doctor has only seen one child get the infection a third time, which is reassuring.

Group B strep is an organism that can affect parts of the body other than the blood -- the most common and serious of these is meningitis. This is why Sophie had a spinal tap the first time she had this infection and another one last night. I'm happy to say that her spinal fluid this time looked completely clear! They are still going to culture it to make sure bacteria don't grow, but for right now, they are assuming she does not have meningitis. Thank you, God!

There are a few different places Sophie could have gotten this infection. Group B strep is common in infants, pregnant women, diabetics, and old people, so the obvious best guess is that it came from me, although it could have been through exposure to anyone who has this bacteria in their body. This bacteria can be a normal bacteria and not cause an infection, but it often becomes a serious infection in babies. When I was tested for group B strep during pregnancy, I was negative, but the doctor believes this test could have been incorrect. She recommends that I need to be treated for group B strep in all future pregnancies, regardless of what the test shows. All that entails is two doses of IV antibiotics before delivery... I can handle that. Another possibility is that Sophie got the infection from my breast milk. I had a case of mastitis which started a couple days before Sophie was diagnosed with group B strep the first time, and I was on antibiotics for ten days. The doctor is going to "think about" recommending that all my stored/frozen breast milk be thrown out from those ten days just in case it might be infected. I'm not thrilled about throwing out that much milk, but it will be totally worth it if it prevents another infection in my little one.

The plan to get rid of this nasty infection is 10 to 17 days of ampicillin. The doctor was going to decide whether to do 10, 17, or somewhere in between. We're hoping for closer to 10, but we want her to have the right amount to get rid of the infection. She is also on gentamicin until the spinal culture is negative for 48 hours, at which point the gentamicin would be stopped.

Because of Sophie's multiple episodes of feeding intolerance and another episode with her belly yesterday (which is most likely attributable to the infection, but just to be safe)... the doctors have been throwing around the idea of doing an upper GI study to look at her intestines and make sure nothing is twisted around and causing stoppages. The test is done by giving Sophie a dye through her feeding tube and/or through a bottle and taking multiple xrays to watch the dye move through the stomach and small intestine. The downside to doing this test is that it includes exposure to a lot of radiation. Today, the doctors decided it would probably be a good idea to do this test, just to be sure she had no anatomical problems that were causing all of the feeding intolerance. The test was done this afternoon, and it came back completely normal. Her feedings are likely to be restarted tonight or tomorrow... in fact, they may have already been restarted, I just haven't talked to the nurse yet tonight.

The girls both had their eye exams this morning. Thanks to Nate for staying with Evie and helping hold her while she had her exam so I could go to the waiting room and not watch. From the sounds of it (yes, I could hear it from the waiting room), she didn't like it very much. Evie's exam looked great, with no problems at all. According to Sophie's nurse, she just has stage 1 ROP in one of her eyes, which is nothing to be urgently concerned about and usually reverses itself. Yay! Both girls will have another eye exam in two weeks.

I know there were a lot of people praying for Sophie after my post last night; we really appreciate it. Our prayers are working -- the doctor commented today how impressed she was at the quick turnaround Sophie made after being started on her antibiotics. :)

Love!
The VPs

Update

Evie is still doing a great job at home! We have established as much of a routine as possible with having another baby in the NICU. Usually we wake Evie up for her bottle at 8, then she lays in her Rock N Play while Nate and I get ready. We head to the hospital around 10ish and stay until about 7. Evie has a bassinet set up in Sophie's room, and we try to keep her on a schedule similar to Sophie's to make it easier on us when they are both home. When we get back from the hospital, it's time for Evie's 8:00 bottle, followed by a snooze, play time, and then her 11:00 bottle. We rock for a while, read a book, say our prayers, and go to sleep around 11:30-12. She sleeps until 8 with the exception of waking up around 2 and 5 for a bottle. Hopefully Sophie is just as good about maintaining a routine when she comes home!

Evie has an appointment with the pediatric ophthalmologist tomorrow. Because of their prematurity, Evie and Sophie are at risk for something called retinopathy of prematurity (ROP) and will need eye exams every two weeks until about a month after their due date. Sophie will also have an exam tomorrow in the hospital. Their first eye exam was two weeks ago, and it just showed that their retinas were immature (duh!), but no signs of ROP. We are praying that their retinas mature properly so that neither of them will have any vision problems.

Now on to Sophie...

We believe her feeding intolerance is pretty much under control! As of yesterday, she was up to her full feeding volume (42 mL every 3 hours) and had had no issues for over a week! We were thrilled, and we knew that her next (final) goal would be to practice nippling her bottles and nipple for 48 hours straight so she could come home... until this morning, when the plans changed again...

I received a call around 7am from the neonatologist to update me on Sophie's night. Apparently, she began having alarms more frequently and needed to be put back on oxygen. Her abdominal circumference had also grown (they check this frequently as it indicates some kind of bowel malfunction.) She had an xray, which was abnormal. Her WBC count and CRP were elevated, indicating infection. They were questioning whether she had the serious belly infection called NEC that I've referred to in a couple of my other updates, so her feedings were stopped, an IV was placed, and antibiotics were started. (Remember that nasty cycle I talked about with her feeding issues?...) This was EXTREMELY frustrating to Nate and me, as just three days ago, a nurse basically told us that at Sophie's age and weight, she was out of the woods for this type of infection. We rushed to get ready and come to the hospital so we wouldn't miss anything. The doctors had done several tests and did not yet have any conclusive results, although it sounded like they were leaning toward NEC.

This evening, our nurse informed us that Sophie's blood culture had come back positive, and that the description of the bacteria fit with the same bacteria that caused her infection a few weeks ago. We should know tomorrow whether it is the same infection for sure, but for right now, they are treating it as if it is. We spoke with the doctor, who informed us that this infection only happens in 4 out of 10,000 infants, and it recurs in 3% of the infants who have it. Those are both very small percentages! Ever since December 15, the day I found out I was having twins, our world has been full of low percentages. The low percentage of conceiving monochorionic twins naturally, the low percentage of having TTTS, the low percentage of having the laser surgery and developing TAPS... the list goes on and on. We are extremely frustrated, discouraged, and heartbroken for our little Sophie. Because of the result of her blood culture, she has to have another spinal tap tonight and will most likely need another PICC line and to be on antibiotics for another two weeks. We will meet with the infectious disease specialist tomorrow, and she will outline the plan for us, which will depend on the results of the spinal tap.

Back to the NEC... now that we know we're most likely dealing with a recurrent Group B Strep infection, the doctors aren't as concerned about NEC, although it certainly hasn't been completely ruled out.

After an encouraging week in the NICU, today was hard to handle. We are so ready to take Sophie home with us and start our little life as a family of four, and unfortunately, it sounds like it will be at least a few more weeks before that happens.

Please keep little Sophie in your prayers, and of course, pray that Evie stays healthy too!

Love,
Nate, Sara, Evie, and Sophie

PS. I just got a call that they finished with Sophie's spinal tap, and it went well, and she is resting comfortably. I wish I could be there with her, but luckily, she has one of her favorite nurses to take good care of her tonight.

We Have a NICU Graduate on our Hands!

If you didn't already know, Evelyn Joy has joined her Mommy and Daddy at home after 38 days in the NICU!

We were told on Monday that, since Evie had been nippling for 24 hours straight and was doing well with everything else, she would be able to come home on Tuesday if she finished her 48 hours of nippling. While we knew this was coming, it seemed like a bit of a shock to us and we were a little overwhelmed (but excited!!) We left early on Monday evening to make sure we had everything in place and enjoy our last night at home with just the two of us. We figured out how to use the stroller, assemble the pack n play, and use the Ergo carriers, in addition to doing some laundry, stocking the diaper bag, and making sure the nursery was ready. It was a late night for us!

A selfie in honor of our last childless night at home

Boiling/sterilizing a pot of pacifiers in preparation for Evie's homecoming :)

When I got to the hospital on Tuesday morning, Evie's room had already been packed up. When she finished (well, almost...but the doctor gave her a break) her 11am bottle on Tuesday, we knew we were officially going to take her home!

After getting the discharge paperwork from the doctor, we gave her a good bath and moved her into Sophie's room, where the night nurse had already set up a bassinet for her. Evie's wirelessness gave us a little freedom to hold her when and where we wanted... so, of course, we put the girls together for some sister time.

After we took this picture, Sophie reached over and put her hand on top of  her sister's :)

I love these girls so much!!

We packed Evie up and put her in her car seat early that evening and took her home. It was such a bittersweet moment to leave Sophie and take Evie with us, but we know Sophie is in excellent hands here and will be taken care of until we can take her home too (I can't wait!)

Evie's first car ride... besides the ambulance ride from Ann Arbor to GR.

First bottle at home

Watching her favorite show (Seinfeld) with Daddy

Evie has been doing great at home! She loves looking around at all the new things there are to see. She has slept about 9 hours each night at home, only waking up twice to eat (we would wake her up to eat that many times anyways!) We are pretty impressed with how she's doing, and happy that she's allowing us to get some sleep so far too! She saw her pediatrician yesterday, and everything is checking out so far. She weighs 5 lbs. 8 oz.! We love having her home, and we just can't wait til Sophie can join us too.

Miss Sophie is making a lot of progress since my last post as well! She has now gone over a week without any feeding intolerance issues!! As of today, her feedings will be at 35 mL every 3 hours, and if all goes well, tomorrow she will be at full feeds! There is talk of pulling her PICC tonight if she is still doing well. The PICC line puts her at risk for developing an infection, so we're so happy it is most likely coming out soon! Sophie is now off caffeine (I believe this is day 4) and she has not had an increase in alarms, which is more good news! She has been practicing her nippling skills and is improving there too. Last night, she weighed 4 lbs. 14 oz. We haven't talked yet about her going home, but we are hoping she will improve even more in the next week or two and be able to come home soon!

Well, both girls need to be fed, so I'll leave it at that. Thanks, as always, for praying for our sweeties!

Love,
The VPs

The Road to Home... and an Update

A week or so ago, I asked one of our favorite doctors the question we've been wanting to ask for quite some time... "So, what exactly do we have to do to get out of here?" I'll list the criteria below, and then give you an idea of where Evelyn and Sophie stand with each of them. I'll also add that we are told these are STRICT criteria, and that discharge can and will be delayed if one of these is suddenly no longer met.

1. The girls need to maintain their own temperatures in an open crib, as opposed to the warmed isolettes they were originally in.
2. The girls need to be at "full feeds," which is a certain amount of milliliters of breast milk every 3 hours based on their weight. Currently, Evelyn's full feeding volume is 45 mL (1.5 ounces). Sophie's is a little bit lower because she weighs less, but I'm not exactly how much since she isn't quite there yet. They need to be tolerating these volumes of feedings for a length of time before being discharged.
3. The girls need to be "nippling" (drinking a bottle or nursing the full feeding amount) for every feeding for two days straight. That is 16 feedings. If they fail for any feeding, the clock starts over.
4. The girls need to be off caffeine for 7 days. They were put on this medication soon after they were born to help "remind" them to breathe and decrease their alarms.
5. Without caffeine, the girls need to be alarm free for 5 days straight. An alarm occurs, for example, when the girls "forget" to breathe for enough time that their oxygen gets low and their heart rate drops. If they have to be stimulated by us or the nurse to remember to breathe, it counts as an event, and the clock starts over. If they quickly start breathing again on their own, it doesn't count. If the girls continue to have alarms, there is a possibility they could be discharged and have to continue taking the caffeine daily. We would then have to have them on a monitor at home while they are sleeping.

Today, Evie hit the 5 lb. mark, weighing in at 5 lb. 1 oz.! She is, and has been, maintaining her temperature like a rock star in her open crib. She has been at her full feeds for quite some time. She is nippling about 3/4 of her feedings. She has been off of caffeine now for 4 days and has had no alarms that require stimulation! This all translates to some very exciting news: Evie is almost ready to come home! All she needs is 3 more successful days off of caffeine and to nipple for 48 hours straight. We and the doctors are pretty confident that this will most likely occur before the end of next week. We are so excited that, by this time next week, we may have a baby at home!! We even brought her car seat in to the hospital so we are ready to take her home when it's time.

Sophie weighs 4 lbs. 8 oz. as of tonight. While she has a few issues to work through, we are confident that as soon as she gets her feeding intolerance under control, she will catch up to Evie quickly. I'll talk about her feedings last, since I kind of have a lot to say about it. As of tonight, Sophie is in an open crib, and she has been maintaining her temperature wonderfully. She does a great job of nippling, but since she's been on and off feedings so often, she needs a little more practice! Sophie is still on caffeine because she tends to have more alarms, especially when she's not feeling well because of her feeding intolerance, but again, I think she will do very well as soon as she does better with her feedings. (Also, none of her alarms require any stimulation, which is a very good sign.)

OK, so here's the latest on Sophie's feeding intolerance/belly issues. As I mentioned in my last post, we have gone through a cycle of starting and stopping feedings several times, with some scary moments in between. This happened again on Tuesday, for the fifth time since we've been there. Luckily, they immediately checked labs, which all looked great, so we didn't have to worry too much about a belly infection, but she was obviously uncomfortable and something was wrong. The doctors stopped her feedings and decided to do a test that would check for any blockages in her intestines. If she did, she would most likely need surgery to repair whatever they found. I'm happy to say that this test looked completely normal! It's a little frustrating, because we still don't have any definite answers, but we are so thankful she doesn't have anything serious enough to need surgery! The doctor yesterday told us there are a couple of things that could be going on, and we will test for those if we need to, but he believes that it's very likely this all has to do with her prematurity and the infection she had a couple weeks ago. In that case, she just needs to grow out of it. Her feedings were restarted yesterday at a small amount and will, again, be advanced slowly. Today, she was getting 10 mL every 3 hours... Tomorrow, it will most likely be increased to 15. So far, she is doing great, and even took a few bottles today! If you're praying for our girls, please pray that Sophie will finally begin tolerating her feedings so she can continue making progress toward coming home.

We are so thankful that Evelyn is nearing the end of her NICU stay and hopeful that Sophie won't be too far behind. Please pray that our girls will continue to grow, maintain their temperature, tolerate their feedings, and do well with taking the bottles and, eventually, nursing. Pray that they will stay healthy and not catch any more infections (especially Sophie as she has a PICC line, which can put her at risk for infection.) Pray for Nate and me as soon we are going to have to make the adjustment to having one baby in the NICU and one at home, and later to having two babies at home! It is exciting but scary to think of having two babies at home without monitors to assure us that everything is okay.

Thanks for all your prayers!

Nate, Sara, Evelyn, & Sophie

Stop Hands (And an Update)

I'll start with an update on the girls...

The other day, we got to put Evie on a transport monitor and bring her in Sophie's room for some family time! Here is a pic of the girls together... (No, they didn't hold hands on their own...)

Evie and Sophie are officially at 34 weeks gestation today!! I can't believe it has already been four weeks since they were born. This has been a crazy four weeks... the happiest and the scariest of my life. It will all be worth it in the end, but Nate and I are starting to get sick of our babies being in the NICU (HA! who are we kidding? We have been sick of it for a very, very long time.) Here are some exciting things that happen at 34 weeks gestation:

• The girls start to try to figure out their days and nights. Therefore, we don't have to keep a blanket/quilt on top of their isolettes at all times! If it's bright outside, we pull the shades to avoid overwhelming/overstimulating them with brightness. The upside of this is that we get to look at them all. the. time. So amazing!
• The girls' feeding tubes are now officially supposed to be in their noses. Since they've been born, they've been moved back and forth from their noses to their mouths based on a number of different things (My cranky self is sure the nurses at night just like to practice putting them in, but they insist the girls have pulled them out that many times). Now, they are supposed to be in their noses so that their mouths are free to practice "nippling" (nursing and/or bottle feeding as opposed to having the feeding drip in through their feeding tube by gravity).
• Speaking of nippling, for the last two weeks, the girls have been allowed to nipple for two feedings per day if they were awake and alert and showing cues that they were interested. Now that they are 34 weeks, we are allowed to try bottle- or breast-feeding them for all of their feedings, as long as they are interested. The nurses even give them bottles when we aren't there if the girls are awake enough.
• The substance with which the girls' breast milk is fortified will be weaned off and a new fortifier will be introduced. I have no idea why, but it's another thing that happens at 34 weeks. The girls will most likely go home on this new fortifier or breast milk mixed with formula to make sure they get enough calories until they get to their due date.

The girls at 34 weeks (Sophie on top, Evie on bottom)

Evelyn continues to be a rockstar of a preemie! She is tolerating her feedings (40 mls of fortified breast milk every 3 hours), is doing an excellent job with her bottles and nursing, and is keeping herself warm enough that she can be in a regular crib now! Not having a top on her bed makes me even more of a germophobe than I already was, but it makes her feel like more of a "regular" baby! Last night, Evie was 4 lbs. and 9.6 oz., which is almost 1 lb. and 6 oz. bigger than she was at birth! She is getting a little double chin like her Daddy had when he was a baby! She is having a little bit of reflux/spitting up after her feedings, but so far, nothing to worry about. Because Sophie has a bloodstream infection, the infectious disease doctors are watching Evie closely to make sure she doesn't develop the same infection, since they were in the same environment for such a long time.

Evie's isolette, right after "popping the top". They put her in a regular crib the next day.

Sophie is still our little troublemaker! Like I talked about in the last post, she had a positive blood culture last weekend, meaning she has an infection in her blood. They were able to determine that the bacteria was Group B Strep (which is something they test all pregnant women for, and I was negative, so she must have gotten it somewhere else.) This was a pretty serious infection, but luckily, it was caught early! The infectious disease specialists have been following Sophie closely and recommended a 14 day course of Ampicillin to make sure that the infection clears completely and does not spread.

Unfortunately, needing two weeks of antibiotics means Sophie needs an IV for two weeks, and IVs don't seem to last very long in such tiny babies. The other day, as Nate and I were about to leave, Sophie's IV went bad, and it took at least 10 (that we know of) tries to get a new IV in her. The next day, that one went bad, and they tried unsuccessfully to place a PICC line (a big IV that lasts longer than normal), so they had to put an IV in her scalp. IN. HER. SCALP. I was beside myself! Yesterday, they were able to get a PICC line in, and we are hoping it lasts until her antibiotics and TPN are done so that she doesn't have to be poked for any more IVs. I'm over it now, but her PICC line was placed in her scalp as well, and they had to shave part of the side of her head to put it in. It was devastating! I will show a picture of her PICC line later, because the ones I currently have are too heartbreaking for me to look at!

I almost told them I wanted nothing to do with this, but I figured I'd be upset later if I didn't keep it.

We are very thankful that the blood cultures were repeated, I believe on Monday, and they are completely negative. Also, the fluid from Sophie's spinal tap did NOT grow any organisms, so there is no concern for meningitis.

Sophie has also been going through a vicious cycle with her feedings. The way I interpret it is this:

1. Sophie's feedings are increased (too quickly for Sophie) to her goal.
2. She does well for a while, but then it catches up to her and she begins not tolerating the feedings.
3. The symptoms of not tolerating feedings somewhat mimic the symptoms of a very serious belly infection.
4. The doctors stop her feedings and order xrays every six hours to watch her belly very closely in case of this very serious belly infection.
5. I panic.
6. Sophie is fussy because she is hungry. I panic even more.
7. After a few xrays, her belly is improved. The doctors restart her feedings at a smaller volume.
8. The doctors increase her feedings (too quickly for Sophie)... and we start over at step 1.

I am sick of panicking, and the doctors are probably sick of showing me Sophie's xrays and having me cry over them. SO, our new mutually-decided-upon plan is to start her feedings at a VERY small volume and increase them VERY slowly. She is on TPN and lipids (IV nutrition) to make up the difference in calories until she can get to her goal. Her feedings are also dripping in very slowly and continuously instead of falling into her belly by gravity, which usually takes about 5 to 15 minutes.

Last night, Sophie weighed 4 lbs., 3 oz. She is a little bit swollen because of her infection, so we think that some of that weight is just fluid. As she loses that fluid, we think she will lose a little bit of weight too, but no biggie!

We do anticipate that Evelyn will come home before Sophie does. It's not that Sophie is doing badly, but she is a little slower with her feeding tolerance and she still needs to complete her course of antibiotics. As long as Evelyn is healthy, we will be able to bring her to the hospital while we are there with Sophie (although we're still not sure if being there all day with her is a good idea). Who knows, maybe they will be discharged at the same time, but we're not getting our hopes up.

Stop Hands

One of the things that babies do when they are stressed or overwhelmed is to spread their fingers and give the "stop hands" or "stop signs," as the nurses call them. Check it out... it's actually very cute!

Our little Evelyn is not shy about giving the stop hands...

While Sophie is a bit more nonchalant, but does not hesitate to show us her stop hands if she feels it's necessary...

Thank you for praying for our sweet girls! Sorry for such a long update!

The VPs

Ups and Downs...

This weekend was rough!!

Like I wrote about in my last post, Sophie's blood culture came back negative last week. At that point, we thought she was free from infection. On Friday night, she started acting a little funny, was having more alarms, and her nurse said her belly had grown a little bit (they measure it each day, or more if they are concerned about a belly infection.) When I got to the hospital on Saturday, Sophie was acting very lethargic and cranky (not like herself!) and, to make a long story short, the doctors ordered more blood cultures and labs, which came back positive for an infection, so she was started on some more antibiotics. They also ordered abdominal xrays every 6 hours to check for a serious belly infection. The first xray was questionable, but the rest looked okay. Because the blood cultures were positive (which means Sophie has a blood infection), their standard is to do a spinal tap to see if she has meningitis. I knew this was a possibility, but I totally did not want my kid to have to go through a spinal tap. When they ordered it, I sort of fell apart! It only took about 10 minutes total, and Sophie was so brave! Now that it's over, I know that it really wasn't that bad, but it was so hard for me when she had to go through it!

Sophie isn't acting like she has meningitis, which the spinal tap would look for, but we are waiting for the culture results to come back to be sure. Her xrays have looked good, so they've ruled out the serious tummy infection we were worried about. Thank goodness! Yesterday and today, she has been acting much more like herself. She's on antibiotics, and the doctors are going to continue them for a full course no matter what. The antibiotics are treating the blood infection, but if she does have meningitis, they will treat that as well. They've restarted her feedings; hopefully she'll be back on her full feedings soon!

Evie is doing great. She has a little bit more of a reflux/spit-up problem than Sophie, but nothing we can't handle!

Last night, Evie weighed 4 lb., 3 oz., and Sophie weighed 3 lb., 9 oz.

Today was much better than the weekend. Sophie is acting like her normal self, and her labs are coming back down to normal. Sophie and Evie's nurse let us put Evie on a transport monitor this afternoon and bring her next door to Sophie's room. It was like a family reunion! We had such a great time having the girls together... they pretty much slept the whole time, but we know they knew they were together! Each of the girls also got to practice nursing today, and each took a WHOLE feeding by bottle! Woo hoo! They also both got dressed in cute preemie clothes and we talked about weaning them to open beds (working on maintaining their temperature all by themselves so they don't have to be in the enclosed isolette all the time). It is a slow process, but we are going to start working on it soon!

Evie and Sophie enjoying each other's company

Our first family pic :)

So adorable. I can't stop staring at this picture!

Normally we feel guilty leaving the hospital early, but we got plenty of quality time in today, and the girls needed to rest. Since today went so well and the girls were both having great days, Nate and I decided to have a nice night to ourselves (and here I am writing a blog post, and thinking about calling the nurse soon to see how the girls are doing). We will be there bright and early again in the morning!

Please keep praying that Sophie's infection will clear and not return! The blood cultures will be repeated in the morning; please pray that they are negative, and that neither of the girls will catch any more infections! And, most importantly, please pray that we will be able to take our girls home ASAP! We absolutely cannot wait!

Love,
Nate, Sara, Evelyn Joy, and Sophie Grace

Thankful

Thank you for your prayers and thoughts over the last few days! Monday, Tuesday, and Wednesday have all been great! It was relaxing and refreshing to have a day to ourselves with our babies (not that we don't LOVE showing them off!) Thank you to our families for giving us our day off, even though we know you wanted to see our/your girls.

A quick update (I promise it will be quick, since Nate wants his laptop back!)...

Sophie's second blood culture came back negative. The doctors consider her clear of infection, and her antibiotics have been stopped. We are SO thankful that this scare was only a scare! After stopping her feedings several times due to feeding intolerance, she has now gone almost 24 hours with barely any residuals (milk left in her tummy after a few hours)! They are increasing her feedings today from 12 mL every 3 hours to 20 mL every 3 hours. Tomorrow, if all goes well, they will increase the feedings up to 24 mL every 3 hours, which is the goal for her weight! Then she will get to lose the IV! Her IVs have only been lasting 1-2 days, so I will be so thankful when they can stop poking her again and again! Pretty sure I cry more than she does when she has to get poked. Also, today's big news is that Sophie took her very first bottle this morning! She did a great job and took her entire feeding by bottle, without spitting up! WOO HOO! For both of the girls, being able to take bottles consistently is a huge step toward HOME! Starting at 34 weeks (next week Saturday,) we are allowed to try feeding them bottles for all feedings, not just twice a day.

Mommy's little peanut doing a stellar job! Who knew giving a baby a bottle would be such a huge milestone?!

Since Sophie has been our little troublemaker, I feel like I don't write a whole lot about Evie, so I have to give her a shoutout for being a rockstar preemie. She has been doing such a great job with breathing, eating, gaining weight, pooping (OKAY, she does a more-than-great job with pooping, right Daddy?) and just being a beautiful, sweet little girl. I have always been a fan of equality (I used to alternate calling my Mom and Dad's cell phone each day so neither of them would feel left out, even though I would talk to both), so let it be known that I love Sophie and Evie equally, even though I may write about one more than the other!

Evie enjoying being held by Mommy.

We are thankful that both girls are completely off oxygen and doing great... no breathing issues! Last night, Evie weighed 3 lb. 11 oz. (a gain of 7 oz. since birth) and Sophie weighed 3 lb. 2 oz. (a gain of 11 oz. since birth.)

We are amazed and thankful at how well both girls are doing. We pray that they will both remain infection-free and continue to progress with tolerating their feedings and keeping warm so that they can come home soon!

Love you all!
The VPs

PS Now that Sophie is gaining some weight, Mom and Dad are having more and more trouble telling the girls apart! I think we are going to have to paint their toenails different colors when they get home to avoid mixing them up!