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