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
Tuesday, May 13, 2014
Monday, May 12, 2014
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.
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.
Thursday, May 8, 2014
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!
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.
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 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
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!! |
| 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 |
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
Saturday, May 3, 2014
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.
- The girls need to maintain their own temperatures in an open crib, as opposed to the warmed isolettes they were originally in.
- 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.
- 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.
- 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.
- 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
Sunday, April 27, 2014
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:
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!
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:
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. |
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:
- Sophie's feedings are increased (too quickly for Sophie) to her goal.
- She does well for a while, but then it catches up to her and she begins not tolerating the feedings.
- The symptoms of not tolerating feedings somewhat mimic the symptoms of a very serious belly infection.
- 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.
- I panic.
- Sophie is fussy because she is hungry. I panic even more.
- After a few xrays, her belly is improved. The doctors restart her feedings at a smaller volume.
- 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!
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
Monday, April 21, 2014
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!
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
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!
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| Evie and Sophie enjoying each other's company |
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| Our first family pic :) |
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| So adorable. I can't stop staring at this picture! |
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
Wednesday, April 16, 2014
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.
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!
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!
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.
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| 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!
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