Christmas joys and blessings

A belated Merry Christmas to you all! It certainly has been a crazy year for us, but we are so blessed that it really did go as smoothly as it did. I haven’t been updating on here as much as I should, and for that I really do apologize.  The girls, projects, Christmas, has kept me quite busy.

So for a quick update on the girls: well, they are still pretty small.  Weight gain has by far been our hardest battle.  Last time we weighed the girls a week ago Eva was finally over 14 lbs, and Abigail was over 12 lbs.  Those are good numbers for us! The big challenge isn’t necessarily to get them to eat more volume-wise, it’s to fit more calories into what they WILL eat. We’ve had a pediatric nutritionist sit down with us and go over everything we can do to add calories…I think I’ve gone through more olive oil by adding it to the girls’ food than I normally use when cooking! It’s actually these added calories that have really spurted the weight gain to become quicker than it has been in the past.  And truthfully, the girls are very very healthy for being so premature. Our doctor has reiterated this over and over. They are just small, which according to recent articles on preemies is pretty normal for babies born so early.  Kevin and I will just have very petite daughters. It certainly comes in handy whenever I need to pick up both girls simultaneously. 🙂

Both girls still receive physical therapy on a regular basis, although we suspect Eva may not need it much longer. I was hoping she would be walking by Christmas, but she is just so darn cautious! She just needs a little confidence that she can do it, because we think she certainly can.  And Abigail can sit up on her own now.  She’s still quite a bit delayed, but the physical therapist believes a lot of it is due to her small size and slow weight gain, and not something like cerebral palsy.  And boy, is she a talker!  She just loves to gab and chatter away.  She’s actually right on target for her adjusted age on everything except gross motor skills (sitting, crawling, walking, etc.) and she will catch up eventually.

We are once again on “lockdown” for the winter because of RSV, although thankfully it isn’t nearly as bad this year as it was last year.  The girls can leave the house and go to other homes, they just can’t be around any kids or sick adults this winter (although we did make an exception for Christmas, as long as both families were healthy…and they were.)  It’s been a little hard to be stuck home all day every day as my mom was sick for a while…it took it’s toll on me last week as I had some breathing issues and wound up in the ER.  My doctor and the ER staff don’t know why I was having trouble, but we are all starting to suspect that the stress is doing some dirty work to me physically, although mentally I really don’t feel stressed at all.  For those of you who knew me in high school, THAT was ten times worse than what I call “stress” now! I think the Lord has mellowed me considerably since then, but perhaps my lungs don’t agree.  Nevertheless, we are working on ways to help alleviate that a little for both Kevin and myself. Thankfully, this should be the last winter we have to do this.  The girls have done so well health-wise and we certainly don’t want to play Russian roulette with their health.

Below are some pictures of the girls from this winter and Christmas Eve.  I will be posting another blog soon about a Christmas present I did for my mom and mother-in-law for all you DIY crafters and Pinterest lovers out there.  I’m quite proud how it turned out and the final project was born in my head while in the shower one day.  I’m just glad all my sisters-in-law trusted me enough to do this! Oh, and the video below is of Abigail…I know I posted on Facebook that my girls must be Beatlemaniacs like myself because “na na na” is obviously from “Hey, Jude,” but I actually was able to catch Abigail on video singing it while it was playing!! I can’t tell you how excited that made me. 🙂

 

Eva is so silly wearing her toys!

Eva rides her princess car!

Future readers, thank goodness

Dressed up on Halloween in mommy's and Uncle Adam's old costumes

Giggle Abigail

Eva loves looking out the window

Eva with a bow on her forehead

What's that stuck to my head??

Abigail plays with Auntie Sarah

I don't know what face Eva is making

Eva's first music lesson...won't be the last. 🙂

Abigail sits up to play

Eva would NOT let go of Uncle Adam for anything in the world

The best pose of all three grandkids

Who doesn't love a head massage? Don't stop, Aunt Pam.

Hosanna gives Uncle Kevin a hug for the first time in two years!!

 

Advertisements

Out with the Old, In with the New

Happy new year, everyone! This year has certainly been an eventful one for us. While listening to the radio the other day, the commentator was reminding listeners to reflect on a “God moment” this year. I told Kevin that this whole year has been a “God moment” for us! We have seen amazing healing for the girls as well as a TON of restored relationships. God has supplied our needs by bringing people into our lives, and my prayer is that we can be a blessing to them as they have been a blessing to us. I don’t want to discredit the people who have been in our lives already. You all have played a major part in keeping us sane as we deal with this hiccup that will be a blip in a very long lifetime for our family.

So the girls were doing pretty well until this week. We were so excited by seeing how well Eva was developing. She was starting to practice latching on for feeds, and she even practiced eating from a bottle. And then on Wednesday everything changed. I got a call that morning that she was having spells one right after the other, and it was so unexpected that they had to take some drastic measures. So after a few weeks of being on a nasal cannula she is now reintubated. We went to see her that night, and my little girl definitely looked bad. He tummy was so swollen, even to her back, and she wasn’t breathing at all on her own. Dr. Nederhoff was there, and he told us that after some x-rays of her belly they thought she had necrotizing enterocolitis, the same condition they thought Abigail had a few weeks ago. If you look it up online it seems pretty grim. Basically (from my understanding) blood (and therefore oxygen) isn’t getting to the bowel walls, so the tissue can be compromised and even die. When it dies, her bowel can perforate and she would need surgery. I think it’s the same thing the Duggar baby had to deal with. They stopped Eva’s feedings, put her on antibiotics, and are basically going to give her bowels a week to rest. The doctor explained that if they catch NEC in time it can resolve itself before it gets to the point where she needs surgery. Over the past couple of days she has been resting quite a bit, and she is definitely improving.  Her tummy is soft and pink, and she’s not acting like she’s sick. And she is also doing some breathing on her own, even though she is still intubated. She’s being weaned from that so that she can be put back onto the nasal cannula. So while we were looking forward to getting her home soon, this little setback means it may be a little while longer before she gets home. It’s slightly amusing and touching, because we were informed that Dr. Nederhoff lost sleep over trying to figure out Eva’s situation. I don’t know what it is about our family that causes doctors to lose sleep, but we are moved to know that they care and God is using them to preserve the girls.

Abigail is still having a tougher time. She is extubated now, which is a huge relief for us. And until the last couple of days it looked like she was on track just like Eva. But for some reason she is starting to have some pretty nasty spells. I was holding her a couple of days ago as she was sleeping, and she decided to stop breathing. Not a huge surprise; it’s happened before. If she doesn’t self-resolve and bring her heart rate and/or oxygen levels up within a few seconds, she then gets some light stimulation (back rubs, head rubs) to remind her to wake up and do some breathing. Well, recently she has been spelling, and her face and lips turn blue, and the stimulation hasn’t been working. I take that back. It works, but it takes A LOT of stimulation to get her going, more stimulation than it should. The first time it happened my heart almost stopped. Thank goodness our nurse, Morgan, was there to keep me calm and to take charge of the situation. The nurses are noticing a trend that it seems to happen around meal time, so they suspect it might be acid reflux. She gets uncomfortable, has some pain, and doesn’t know how to handle it, so she stops breathing. Reflux is a common thing for preemies, and it doesn’t help that gastrointestinal issues do run in the family. But hopefully she will outgrow it. It just doesn’t do Mommy’s heart any good to see her turn purple like she does.

Lots of people have been asking me if the NICU has given us a date as to when they can come home. The best guess is sometime around their original due date, February 10th. They have to be able to do several things before they can be discharged. They have to go without spells for 5 days straight. They have to be able to feed, and that can be tough for them to learn! They have to eat and breathe in a rhythm. Although Eva was doing a pretty good job on that. Abigail hasn’t had the chance to practice yet. And they have to gain weight pretty steadily. Again, they were doing fairly well on that until they had their feedings stopped to deal with the other issues they are experiencing now. They will probably go home on oxygen, and while Kevin isn’t thrilled with the idea, I’m actually glad. I don’t know if it will reduce the risk of SIDS, but I imagine it would. I know I’m going to be nervous to even sleep when they come home. We have fought so hard for their survival, Mommy isn’t going to lose them as they sleep in their crib!

This whole journey has certainly been one where Kevin and I have learned so much, and we have had to definitely come together as a team and do what’s best for our girls. I’m starting to realize that things aren’t going to be typical for our family for the next couple of years. I guess I assumed that when the girls hit 40 weeks that they would be like a normal newborn, and all they would have to do is some catching up developmentally. But them not being in the womb has really left their immune systems pretty compromised, and I’m only beginning to understand how much so. I didn’t realize how much we would have to limit contact. I was able to reach out to my high school friend who had preemie twins to find a pediatrician who is familiar with preemies and what they need. It’s going to be a different path that our family has to travel. Thank goodness we do have some resources! It was so great talking to Kevin’s aunt, who used to be a nurse in the NICU and who could advise us on a few things. Plus we have awesome primary nurses who fill us in on every little thing that is going on with the girls. I can’t express how blessed we are to have them taking care of the girls.

Please keep Eva and Abigail in your prayers. Just seeing pictures of them from when they were first born and looking at recent ones is just a huge eye opener. Kevin jokes that they don’t look like aliens now; they actually look like babies! We are winning all of the small victories that are getting us closer to bringing two precious daughters home. 🙂

In closing, I thought I’d add some pictures of the girls. Plus, here is a YouTube video about what it’s like to be a mother of twins and the kind of questions I expect I will get asked. Some of you have seen this already, but it’s pretty amusing. Although it doesn’t totally apply to me because my girls ARE identical. Enjoy!

 

Eva spending some time with me

I swear they did this on their own

 

A smile from Abigail after her bath

Another smile from Abigail

Daddy's hands calming Abigail down

Me feeding Eva...gotta learn sometime!

Daddy feeding Eva

Cute Miss Eva!

She really doesn't like her baths much

An awesome Christmas present: our first family photo!

Cozy together, like they were in the womb

Another blog on the misses!

It’s been a couple of weeks since I last updated everyone on how the girls were doing. So I’ll do this periodically until they come home, and then when I get the opportunity to update everyone on their antics I certainly will. 🙂 For those of you who don’t have experience with the NICU I’ll try to expand on what information you may already have. It’s not as critical as I had been led to believe. Yes, the girls have good days and they have not-so-good days. But nothing that has given us any real cause for alarm. Thankfully, they seem to switch when they have their problems; i.e. Abigail has a problematic day and Eva has a smooth day, and vice versa.

What’s amusing for us is the nurses and doctors in the NICU treat some things as more grim than they turn out to be. I wrote on the last post about Eva’s brain hemorrhage scare. We got pulled aside a couple of days ago by the nurse practitioner that they needed to x-ray Eva’s belly because they were very concerned that its large size was an indication that there was a hole in her intestines and air was escaping into her body. Needless to say, this is a very bad thing. But Kevin and I didn’t worry this time; we are confident God is doing a great work through our girls still. So we sat and waited for the results of the x-ray; it was nothing but gas. The same exact thing happened to Abigail today. Also, I was told when I arrived at the hospital this morning that both girls had a heart murmur that they had heard, and they both were going to get echocardiograms to confirm that they both had PDA. So again, I waited for what I was sure would turn out to be nothing. And once again, God didn’t fail me. Both girls still have no PDA. So my advice to anyone who ends up having a baby in the NICU is to listen to what they have to say, but take it with a grain of salt. They are very knowledgeable, so I feel good about the girls being there. And we do have something going for us: the promise that God is taking care of our girls. Plus, we know that any freaking out on our part can’t be good for the girls.

And both of them are starting to get so big! As of yesterday Eva was back to her birth weight: 1 lb. 12 oz. Abigail has already surpassed her birth weight and is at 1 lb. 9 oz. Still very small when compared to a normal baby, but they are bigger than when they were born. They would have been 28 weeks yesterday. And both of them have opened their eyes! We love spending time with them and holding them. And God answered another prayer: they have a primary nurse during the day and one at night! Thank you, Morgan and Liz! God totally had His hand on that one. 🙂

Keep praying for the girls. These next few months will be hard. Driving to the hospital back and forth is exhausting, not to mention the pumping I have to do several times a day. But we are very blessed with our girls. Thank you everyone for your prayers, love, and support!

Where we are at now

So I thought I’d post a new blog with all of the nitty gritty details of what is going on with this pregnancy. When I wrote the last one I was still in shell-shock mode from the news that we were having twins. It was overwhelming news, but at the same time very exciting, too! Lots of people have told me they would have paid good money to see Kevin’s face when we got the news. It was pretty amusing, let me tell you! So aside from all the unpleasantries that accompany pregnancy (let’s see…burping all the time, difficulty breathing since they’re pushing up my lungs, ill-fitting clothing, and the ever-present pregnancy waddle) I’m actually thrilled for my girls.

In the last blog I wrote that we found out the girls had TTTS, and two weeks ago I had no clue what that meant. I have since done my research and have a better idea of what’s going on. Eva, my bigger girl, is apparently getting more blood than Abigail, my smaller girl.
As a result, she has more amniotic fluid around her than Abigail. For a normal twin pregnancy, the amount of fluid around babies should be between 3-8 cm. I don’t have the numbers for our first ultrasound, but for our second one the numbers were 1.4 for Abigail, and 8.5-9 for Eva. TTTS has four stages of progression, and the first stage is this uneven amount of fluid around the girls. The second stage is when Abigail’s bladder can no longer be seen on a detailed ultrasound. The third stage is when the blood flow for one or both of the girls is absent or reversed in their umbilical cords or in a specific vessel near their hearts. The fourth stage is when one of the girls (probably Eva) shows evidence of hydrops, which is swelling that indicates heart distress or failure. On last week’s ultrasound as well as today’s we saw good-sized bladders on both girls, the blood flow for them was in a normal range and forward moving, and there was no evidence of hydrops. Today’s fluid measurements were 1.5 cm for Abigail and 5 cm for Eva. So things for Eva have improved considerably! That was very reassuring to hear. We are still a little concerned about Abigail, but this means we are still in stage one, which is a HUGE answer to prayer! According to a study I found online 70% of stage one cases either remain stable or completely regress to normal. That’s an encouraging number! And tons of prayer works miracles, as we are seeing today. 🙂 We are still being monitored very closely because TTTS can really progress quickly, and if it does for us we may have to go to Houston for surgery to even things out for the girls. But God has them in His hand, and there’s nowhere else I’d rather have them. I’m doing the few things I can to ensure they are getting what they need (pretty much eating non-stop, resting whenever I’m not working, and downing protein shakes like they are going out of style) but now we just have to sit and wait for them to grace us with their presence. After today’s good news I’m thinking we may make it to January after all. Our OB has told us he can pretty much guarantee they will have to be delivered via c-section, so at least we have an answer about that. But the girls are making themselves known to us with lots of vigorous kicking! I think they have their dad’s quad muscles. 🙂

It’s been great to have so much support from everyone, too. People have really stepped up to help out. Both moms have done lots of cooking already so I can have a chance to rest as much as possible. Thanks to my mother-in-law, Michelle, and Gina I now no longer have to buy maternity clothes. Grandparents are taking care of cribs. Sister-in-law Sarah is donating a pack-and-play. My Aunt Cathy has a double stroller for us to use. All of my bosses are being incredibly understanding and have told me whatever I need to do for the girls to just let them know and they will make it work. I’m sure I’m forgetting other generous gifts because God has really blessed us with amazing people who love us, are excited for these girls, and want to help out in any way possible. God has commanded us not to worry in Matthew 6, and He has given Kevin and I a peace about whatever may happen. I’m not saying it’s all roses from here on out, but it’s considerably easier than it could have been.

So I will be sure to keep everyone updated about how the girls are doing. We have another ultrasound Friday morning so keep praying that God will take care of our daughters. They can safely be born in just two and a half weeks, but we’d rather them to get bigger and healthier in mommy’s tummy, of course!