Wanted: Two napping girls and one refreshed mommy

Well, it’s been about three months since the last update, and the only reasons I space my updates is because
1) there isn’t much to tell
2) I’m woefully lacking on pictures
3) I have no time
4) I have no energy

You would think that number three wouldn’t be the case since I’m at home all day every day with the girls. But twin one year-olds take up more time than you would think! I’m usually ready for bed by 9:00 every night. They just take so much out of me; and here I am wanting MORE kids!

So updates…Eva is now walking and has been for a couple of months. I was worried she would pull even further away developmentally from Abigail, but it seems like In the last two months a lightbulb has clicked for Abigail. I remember the shock that ran through me one day when I was on the computer, and I turned around and she had propped herself into a seated position. And since then she has mastered pulling up to a standing position, crawling, and cruising within a very short amount of time. I’m hoping she will be walking by summer; she has just sped off on physical development.

Feedings are a different issue. I imagine the girls will always be terrible eaters. At least we aren’t regressing, but weight gain is still quite slow. I’m still working with our feeding specialist and now we have a pediatric nutritionist who comes as well just to brainstorm and see if I can’t squeeze in any more calories. She had actually asked me to keep a feeding record (which I’ve been doing since the girls came home from the NICU) and after she analyzed it she concluded we are doing pretty much everything we can to keep these girls stuffed like thanksgiving turkeys. ๐Ÿ™‚ Eva is thankfully transitioning to table food quite well (with some strange foods she loves: pickles, onion rings, Sonic fried mozzarella sticks) and I’m making banana bread weekly since she is pretty fond of it. Abigail, however, is having a rougher time. She still eats only purรฉes since she gags and coughs on table food. I know she will get there eventually; it may just take a little extra time. Both girls are still on bottles as they haven’t really figured out sippy cups yet, and they still take formula rather than milk because formula is higher in calories. They don’t seem to mind it. And as far as sippy cups go, I’ve thankfully had my friend Shawnah offer us to try every sippy cup they own to see which ones the girls take to, and right now we are fighting lots of “battles” so the sippy cups are a bit lower on the priority list. ๐Ÿ™‚

We are still in lockdown mode and hopefully will be done by May; I can’t believe it’s been 5 months! Our lockdown may get extended because RSV, flu, and viruses in general hit really late this year. And they have been VICIOUS. I’ve read of so many posts on Facebook about moms whose kids had to use inhalers, nebulizers, etc. just to keep the symptoms at bay. My own niece wound up in the hospital for almost a week because of RSV. I know some people though we were being extreme, and even we were starting to relax a little on restrictions when everything hit. Needless to say we have tightened those restrictions back up. We’ve come so far, we don’t want to jeopardize anything. The girls, amazingly enough, haven’t been sick all winter. Kevin and I have, but not the girls. And thankfully my friend Shawnah makes a good effort to make sure I get out of the house at least ONCE every couple of weeks. ๐Ÿ™‚

The one area where we could use prayers is for sleep. I used to tell people that the girls were great sleepers, and not really to brag about how OUR kids were good sleepers, but more like, “We’ve had SO much to deal with (feedings, weight gain, physical therapy, developmental delays, not to mention all the oxygen, medicine, and PUKING we had to endure when they came home) that it’s such a relief God has been merciful to us in this one area.” Well, that’s no longer the case. For some reason Abigail is going through a period of teething combined with separation anxiety, because when we try to put her down for naps or bedtime she screams and cries and eventually ends up throwing up. Poor Kevin has had more success getting her to sleep (he just rocks her until she passes out) but he has also insisted on getting up with her if she wakes up in the middle of the night. It has left us all very tired, and we are hoping she gets over this very soon so that we can ALL enjoy our sleep!

Thank you all for your continued support. We do see the light at the end of the tunnel, so we are definitely improving! I would love to see/hear from you all. Some of my days can get quite long. ๐Ÿ™‚

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Time flies like a bird

Well, it certainly has been a couple of months since I last posted! And really, the reason why is there hasn’t been too much to tell. Things have been going pretty well for us up until this past week when we all caught colds. For some reason it has definitely changed the personality of each girl. Fun-loving, devil-may-care Eva has been VERY needy, crying almost every time that she isn’t being held or entertained. As I told her daddy this morning, with twins it’s just not possible for me to do that. She is getting lessons in patience from the get go, which is not necessarily a bad thing. Anyway, she is developing just splendidly. Her physical therapist thinks that she’s acting her actual age developmentally instead of her adjusted age, which means she really is ahead of the ball game. It may mean she turns into a more adventurous type of personality, inclined to give me heart attacks at an early age! But we will trust the Lord that He will protect her in His perfect will. At least for now it’s still very cute. Even as I type this I’m watching her crawl towards the bookcase, which I’ve blocked with Pack n’ Plays, and she’s still managing to worm her way into the nooks and crannies to access Mama’s things. REALLY can’t wait for her to understand what “no” means. ๐Ÿ™‚

Abigail, on the other hand, has become the happiest, most cheerful baby with this sickness. There was one day last week that I took her to my parents’ house so I could get some help, and she smiled all day, which made my dad pretty happy. She’s not quite where Eva is developmentally, but she is doing her fair share of talking and moving. She doesn’t crawl around like Eva, and she HATES tummy time no matter how much we try to encourage her to do it. At this point we’re not concerned because she’s still where she needs to be for her adjusted age. I ask the physical therapist every time if she’s happy with both the girls’ progress and she reassures me every time that at this point they are still fine. And the doctor is pleased with their health, too. They still struggle quite a bit putting on weight, which is a little difficult to understand because they eat pretty well. They may end up being small girls, which is fine with me unless they decide to become cheerleaders in high school, which means they’ll be the ones getting thrown and tossed. So it could backfire on us but right now it’s fine. ๐Ÿ™‚ This fall/winter we will still have to be a little closed off since RSV will be in full force and the girls getting it could mean another trip back to the hospital and getting put back on oxygen. Thankfully it’s not the life-threatening deal it was this past winter. The girls being around other kids is the biggest no-no for these upcoming months, but healthy adults are fine. The fact that we’ve all been sick with colds and they’ve done pretty well is a good sign.

Since there’s really not much to report I’ll just go ahead and post some pictures and video. Is it silly mommy stuff? Yes, but if you’re looking for something to briefly entertain you then look no further. Really it’s just a testimony to how far God has brought both girls. We could always use prayer that He will keep them safe and healthy. We could also use prayer that we find a good church home soon. Those are my two requests. Love and blessings to you all!

Guilty!

We've moved into high chairs!

Momentarily distracted

A longsuffering look from Abigail as Eva investigates

Just like Mommy...happiest with a blanket!

Abigail wears her bib in an odd location

Crinkle nose!

Holding hands and playing nice when not allowed free reign to trample over each other

Happy Eva!

Abigail sleeps in Bumpa's arms

It’s been too long…

Hi, everyone. I know I’ve been neglectful about posting about the girls.ย  I’m still hoping that this blog can be a way to educate people about what life with preemies is like, even as we inch closer and closer to a normal life. So here’s the latest scoop since the last post: the main struggle that we deal with now is feeding.ย  The girls still don’t eat very well, and even though we have them completely on Nutramigen (nice costly formula) they still throw up once or twice a day.ย  We think this weekend all four of us caught a stomach bug from somewhere, so their vomiting has been a little worse, as well as their feeds.ย  But we’re starting to get back to where we were.ย  Unfortunately the girls have become even more selective about who they will eat with, and so Kevin and I are the only ones they will eat with.ย  Sometimes they won’t really even eat with me. That means grandmas can’t really help out in this area any more. For that reason we decided to let them go back to their normal lives, even though we were so grateful for all they did for us. It also means that Kevin has decided to come home every three hours to help with feeds until we get them on track.ย  We are so blessed that he is in a position that he has the flexibility to do that, although we are working hard to find a solution so that he doesn’t need to come home from work so often. We are hoping to talk to the doctor this week about adjusting the feeding schedule to find something that works for them AND us, whether that means feeding them less amounts more often so their tummies don’t get so full, or going longer stretches and getting more down at feeding times since their digestive systems are so slow and take more time to empty than normal full-term babies do. On the plus side, we are finally starting some cereal, and Eva really seems to like it! Abigail still needs to adjust some, but maybe she’ll like it in a week or two.ย  That seems to be the time frame for everything with the girls: Eva does something, the next week Abigail does it, too. ๐Ÿ™‚

I want to stress that even though feeding/weight gain is still a struggle for us, we are by no means in any kind of serious health risk for the girls.ย  I’ll elaborate later on that. Abigail had her overnight pulse oximeter test again at the end of May, and we are now finally off of oxygen completely! It’s so nice not having to drag that oxygen tank everywhere.ย  It’s also very nice not to have to deal with Apria anymore.ย  A couple of weeks after she was taken off oxygen she had an appointment with her pulmonologist, who discharged her from his care, informing me that her chronic lung disease is completely gone. It was a huge shock to us, because we had assumed that she would deal with it for YEARS. And the information came just in time as the smoke from the Arizona fires began to blow over and cover Albuquerque.ย  We still kept the air conditioner off as much as we could just to be safe, but it was nice to know that it wouldn’t affect her so greatly. Also, we’ve been having our home healthcare nurse make weekly visits to check on the girls, and this week should be the last week that she comes.ย  She informed me last week that she would discharge us, too, because the girls are basically healthy.ย  So we are taking teeny weeny steps in the right direction. We still have a physical therapist that comes twice a month to work with the girls to help them get where they need to be developmentally.ย  They certainly don’t act their age! Eva has already figured out how to roll from her back to her tummy, but she hasn’t quite figured out how to get back onto her back.ย  It’s amusing and annoying to have her keep flipping over onto her tummy, only to whine when she needs to be flipped back over.ย  She’s figured it out a couple of times but isn’t really consistent about it.ย  Abigail has been able to get from her tummy to her back, but not the other way yet.ย  She’ll get there at some point. ๐Ÿ™‚

I also just want to clarify that despite all the problems the girls have with feeds and gaining weight that it is not a cause of concern where we might be approaching the need for a feeding tube. The reason Kevin helps so much with feeds is that we are doing everything in our power NOT to have the girls need a feeding tube.ย  I reached out to some friends about this, and my friend Sherry informed me of a feeding clinic in Dallas that takes on babies like the girls to work with them intensively and get them on track for eating without a feeding tube.ย  So if we do get to the point where we need that we have decided we would rather take the girls to Dallas then to have them have a surgery that makes it even HARDER for them to develop normally.ย  Instead of a 2-year catch-up (which we have right now) it would take 5-10 years to catch the girls up developmentally if they got feeding tubes.ย  It seems like such an easy solution but trust me, it’s not the best one. I know people read this for info about the girls, and I know some of you are very concerned.ย  God gave these girls to Kevin and I to make the best decisions for them, and people who burden us with their worries only make it that much harder for us. I keep in touch with our pediatrician at least once a week through email, and if there’s ever a concern on mine or the doctor’s part she is quite good about getting us in to see her. I still keep in touch with a couple of our NICU nurses, and I know I can always reach out to them if need be.ย  I also stay in touch with friends who also have preemies and deal with the same struggles.ย  The resources are out there, and we are making full use of them. I write these blogs to ENCOURAGE everyone about how the girls are doing, not to create more concerns. We always appreciate prayer, and right now that’s what we need from everyone.ย  We trust the Lord; He has already done so much for us! He has preserved their lives for His purposes, so we need not fear.

I just want to also take this opportunity to remind everyone to be grateful for what you have, especially you parents.ย  If your child is sick and fussy, be grateful that you don’t have to worry about things like oxygen and hospital visits. Be grateful that weight gain is something you don’t even have to think about. Be grateful for every poopy diaper you change, because it means your child is eating well enough to have poopy diapers. I can speak for all my friends with preemies that we have daily battles that most parents don’t even have to think about. I’m going to post a link here to an article I found on ABC.com about parents of preemies and the insensitive comments we have to deal with. And of course, I have pictures to share! Now that the girls have gotten out of the house a few more times we have more pictures with friends and family. Much love to you all for all your support.ย  It means the world to us!

All dressed up for the ball!

Like her mommy, she too is a "hat" person ๐Ÿ™‚

Got them both asleep

Testing out our stroller!

Giggles from Miss Eva

One picture where they DO look identical

Right after Abigail got her oxygen off...which one is she? ๐Ÿ™‚

Eva practicing standing with Grammy

Abigail enjoys her baths now

Nonno with smiles from Eva

Cousin Hosanna came to visit and play with Auntie Lowo ๐Ÿ™‚

Abigail sleeps on Auntie Sarah

Great-Grandpa and Great-Grandma Gonzales with the twins

Auntie Mima (my Aunt Cathy) gets cuddles in

Caught in the act!

The Coffings come to visit!

Uncle Adam and Eva laugh

What are you looking at?

Eva and Aunt Sarah got along very well

Plodding along…

Hello, all! I figured it was time for another update on the girls. Not a whole lot has happened, but I sure would appreciate everyone’s prayers! I think last time I posted I was recounting how difficult it was to feed Eva and how concerned we were about her. I’m happy to say that she has COMPLETELY changed.ย  She eats fairly well (for a preemie) and is now a whopping 9 lbs 8 oz! Yes, a bit low for a 3-month old, but in light of our struggles we are extremely proud of how well she is doing.ย  She still vomits on a daily basis, but when she eats well it doesn’t hurt her quite so badly.ย  I’m hoping we can get things under control in that area so she can truly become the Menicucci she was born to be! She has been sprouting lengthwise: 23 inches! I’m predicting a future basketball player.ย  I’m really hoping the low weight and long legs doesn’t mean she becomes a Project Runway model, despite the fact that I love that show.

Abigail, on the other hand, took a bad turn pretty much on the same day Eva did her 180 degree turn around.ย  For some reason, she just stopped wanting to eat.ย  Suddenly it’s been such a struggle to get her to take a good amount of food.ย  And we’ve tried EVERYTHING; we changed to slow-flow nipples on her bottles, we took out the rice cereal, we added Baby-dophilus powder to her feeds (although I’m suspecting that is keeping her from vomiting; that’s the one area she’s beating her sister in!), we give her glycerin suppositories every other day…only now is she starting to get back on track.ย  But she had lost 12 ounces, and for a 9 lb baby, that’s not a good thing! The feeding clinic at Pres hospital has been pushing us to consider getting a g-tube for her to feed her that way, but the negative consequences of that are just so drastic that we are doing everything we can to prevent that.ย  Poor Kevin has a better rapport with Abigail, so he has been coming home from work every 3 hours to feed her.ย  It’s been hard right now, but we know in a few years we will look back and know we did all we could to give the girls the best opportunity possible for success. Anyway, respiratory-wise she is doing really well.ย  The pulmonologist had us run a pulse oximeter test to see what her oxygen levels would be on room air.ย  She did great! Except for when she was fussy and screaming; her levels dropped then.ย  Of course, the doctor can only analyze the data he receives so he told us to leave her at 1/32 oxygen flow, which is just one step above room air.ย  We think she’s ready to come off, but hopefully before June both girls will be off oxygen!

So please still pray for us! Especially for Abigail, as we really don’t want to have her get a g-tube.ย  We’re a bit tired of specialists and medical professionals using scare tactics to persuade us to make choices that they would prefer for our daughters.ย  It may take a while to get these feeding issues behind us, but we are determined to do everything we can to get them to gain weight the right way.

So how about that for a short update? And as promised, some pics of the girls. ๐Ÿ™‚

Eva being candid

Abigail chewing on her hand, despite the blanket

All dressed up on Easter!

All dressed up on Easter!

Play time!

She's done with the oxygen!

Daddy teaching Eva how to enjoy hunting shows

Sawing zz's

Daddy makes the best pillow

Love this one!

There were never such devoted sisters...

Just plain cute

Eva and Bumpa!

All of us clean up good!

Found the Easter bunnies!

I got Abigail's attention

Abigail sleeping

Eva sleeping in her bouncer

The ups and downs of having preemies

So I realized it’s been a couple of weeks since I posted. I want to give a quick update on Eva and Abigail. We are definitely getting closer to the end. In November I never thought we’d see the light at the end of the tunnel, but time has really flown by! And we have learned SO much. I was holding Eva today as she had a little spell, and when spells happen, the monitor alarm goes off and nurses rush over to try to get the baby breathing again. So when Eva spelled today, I heard her nurse, Morgan (who was working with another baby), shout across the room, “Don’t worry, Laurel can take care of it, she knows what to do! She’ll be fine!” Needless to say, I knew what to do, but the whole thing left me amused. Kevin and I are pretty comfortable now silencing alarms, disconnecting wires from the girls so we can hold them, watching their cues for when they are having problems, etc. I never thought I’d see the day that happened, but that day certainly came and went a while ago! ๐Ÿ™‚

Since I last wrote, quite a bit has happened. You all know Eva was diagnosed with NEC. Only a few days after she was diagnosed, Abigail decided to copy her sister and also get diagnosed with NEC. Although she didn’t have the nasty spells her sister had. And actually, she never had to be reintubated. However, she had to stop her feeds, too. And since she had to get nutrition and medicine another way, we consented to have her PICC line reinserted. It was either that or have her poked with an IV pretty much every day, which her poor sister had to endure. So after both girls went without food for over a week, they started them from square one on their feeds. Because Eva’s NEC presented first, she began eating first and was at full feeds first. Now, something they do in the NICU to add calories to help the girls gain weight is they add fortifiers to the breast milk. A couple of days after Eva was back at full feeds and on the fortifiers I received a phone call from the NICU that she had a bloody stool in her diaper. Kevin and I went to spend the day with her, and after X-rays, blood work, and careful watching Dr. Nederhoff thought that the NEC had returned. Her feeds were stopped and her meds were started again. We were frustrated. Other than the bloody stool she was acting like she was fine. She wasn’t having any spells; in fact, she kept pulling out her nasal cannula and her oxygen levels were STILL at 100%! Then that night Liz reminded us that her first bout of NEC presented a few days after she started the fortifiers. Coincidence? Probably not. The next morning her X-ray and blood work came back normal. So after some discussion and brainstorming the doctor and nurses suspected the fortifiers were the guilty culprit all along. RELIEF! Eva is now on a special formula called Neocate that is supposed to be easy on the tummy. She will be on that for a couple of weeks and then will slowly transition back to the breast milk. Abigail was never put back on the fortifiers and guess what? No NEC. So now the next hurdle we are dealing with is their feedings. They are learning how to bottle feed, and it’s a bit rough for them since they both have fairly bad reflux. It causes them to gag and retch, which in turn causes them to spell. But Kevin and I have gotten pretty good at watching them and figuring out if they are going to start to spell. It also helps that they are on Prevacid to minimize that. We are trying to learn to watch their cues and not to depend on the monitor to tell us what’s going on. We could possibly go home on apnea monitors, which would let us know when they aren’t breathing. We will either do that or something similar, just to be on the safe side.

It’s pretty awesome to see the girls developing. Now that they are getting bigger and are becoming chubby little babies, they really are starting to look identical! The nurses tell us that it’s pretty odd to have twins deal with the same exact problems (like the NEC) but I think it’s just a good indication of how special our girls are. ๐Ÿ™‚

I’m so blown away by all the support we’ve gotten from everyone. I can’t tell you how many people we have heard from who have told us stories about their own preemies who have turned out just fine. So I want to (in turn) show some support back, and I think you all will be amazed at God’s provision for even our own current situation through the lives and stories of others. So without further ado, let me begin the list of other amazing stories.

1. http://menicucci.blogspot.com
This is my sister-in-law’s blog. I think I briefly mentioned before that Eva and Abigail are not the first set of twins in our family. Kevin’s brother, Brian, has fraternal twins (no, twins do NOT run in the family; to my knowledge neither Gina nor I are genetically predisposed to twins and twins only “run in the family” through the mothers.) She has been really wonderful on helping me figure out what life with twins is really like, including pregnancy. When I first found out about the girls I texted her right away, and she asked if they had TTTS, and that was even before we talked to the perinatologist. And sure enough, they did. My nieces and nephews are pretty adorable, if I do say so myself. ๐Ÿ™‚ It’s also going to be fun growing up so close to cousins!

2. http://andersonstwins.blogspot.com
I’ve known Shawnah ever since 5th grade when we both went to Hope. She and her husband, TJ, had twin girls, Kandis and Kenedi, who were born prematurely at 24 weeks. They went through many of the things we are dealing with now, and they have extended a hand of support to us to be an encouragement. I’ve gone to her about things because she knows that having twins adds its complexities, and having preemies takes it to a whole new level. I remember looking at pictures of those girls thinking how hard it must be to see your kids like that, small and hooked up to machines. But truthfully, you just see your kid. The wires and tubes: you get used to them. And for Shawnah and TJ, they now have two healthy, beautiful girls (whom we got to meet a few days ago, and they are VERY cute.) You can go to her blog to read about their amazing journey.

3. http://thelopezblog.com
I also went to Hope with Sherry (and for a few years, Bryan.) If it wasn’t enough that they already had three kids of their own, they decided to adopt identical triplet boys. How cool is that! The boys were born at 24 weeks and had a long stay in the NICU. In a graduating class of 78 people, three of us have multiples. Quite the statistic! And if that doesn’t amaze you, then how about this: one of the nurses, Liz, who worked so much with those boys is now the primary nurse at night for Eva and Abigail. And Liz also happens to be married to Kelly, who also graduated from Hope with us. Coincidence? I think not. Anyway, the Lopez family just found out that one of the boys might be Deaf, so while they wait to see if something can be done they are learning sign language. As an ASL interpreter I think it’s pretty cool they are learning; having worked with Deaf kids it’s all too common to have them isolated since almost no one in their families will bother to learn how to communicate with them. I won’t speculate on reasons that those families don’t learn ASL. But language development is so crucial for this boy right now, and the Lopez family is definitely being proactive about it. Their adoption story is inspiring, not to mention how God preserved the lives of all three of those boys. It was so good, I just have to go back and read it again!

4. http://tttsprayers.blogspot.com
I don’t know these people, but this is a blog I found when I was still pregnant and concerned about the girls. This family had a more severe TTTS pregnancy that did require the laserscopic ablation surgery. They are still dealing with some things as a result of the TTTS even months later, but their story of faith in the midst of such frightening circumstances is pretty encouraging. At least it was to me when I was wondering if my girls would even make it.

5. http://guerragang.blogspot.com
I met Jordan when I became a YoungLife leader right after high school. She and her husband, Jon, are in charge of WyldLife in Sedona, Arizona. I give them so much credit for working with middle schoolers. I’ve done it before, and middle schoolers have a gift for trying one’s patience. ๐Ÿ™‚ I’ve also long been an admirer (and slightly jealous) of Jordan’s knack for creativity when it comes to crafts. She recently made hats for the girls, and runs her own business, River Jordan Creations. If you are looking for some really cute hats or headbands, head on over to riverjordancreations.blogspot.com. I can’t wait to see my own girls in those hats!

6. http://sabepashubbo.wordpress.com
This is my brother, Adam’s blog. Adam and his wife, Sarah, gave birth to my niece, Hosanna, last year. And they have been very excited about cousins for Anna. Adam has a gift as an apologist. When he has in high school, he took an interest in the Left Behind series and wrote a 40-page paper on eschatology (the study of the end times) FOR THE FUN OF IT. But it’s pretty hard to argue with him about Christian doctrine (not that I would anyway) and so you might find yourself enlightened, informed, impressed or just curious to seek out more after reading his blog. I may be slightly partial on this one, but see for yourself if you don’t believe me.

You can find links to all of these blogs on the right side of this page under the blogroll, as well as some others. Do you have a blog that you want to share with others? Let me know and I’ll post it here, too. Also, I keep forgetting to tell you all that you are welcome to ask me any questions you’d like. I promise to do my best to answer them, and I’m usually pretty good about it. The whole purpose of this blog is to answer everyone’s questions and to simplify all of the information I’m getting from the NICU. There have been more conditions throughout the pregnancy and NICU stay than I ever thought I’d encounter that it can be hard knowing what exactly is going on. I hope this blog is helping to clear some of that stuff up. ๐Ÿ™‚ So if you have a question just leave a comment here and I’ll get back to you!

Moving in the right direction!

Alright, time for another blog post. I don’t think this one will be too long since things haven’t been traumatic for us, at least as far as the girls are concerned. They would have been 31 weeks today, and they are getting so big! It’s such a joy to see their little personalities developing. I can’t wait to see who they LOOK more like; I’m hoping it’s me because they certainly ACT more like Kevin. Last night I was holding Eva, and even though she was asleep she kept trying to kick her feet out of the blanket. Her sister does this all the time in her isolette. There’s still lots of time to see who they become. ๐Ÿ™‚

They are still progressing wonderfully. Both girls now have their PICC lines removed. In the last post I mentioned that the PICC line was one place they are prone to getting infections. But thankfully they are now getting enough nutrition from breast milk that is fortified with extra calories that they don’t need any nutrition supplemented through their PICC lines. So out they came, and Mom and Dad are very relieved about this! Also, Eva is now completely extubated and only relies on getting oxygen through a nasal cannula, the same type of oxygen tubes that adults use when they are on oxygen. All of these things point to incredible development on her part. Of course, we give all the credit to God for preserving her life and giving her strength. We had a care conference with one of the girls’ doctors this week, and he was enthusiastic about how well they are doing. In theory, they could go home as early as 36 weeks gestation, which is January 14th. Holy cow! Time has flown and they could be home very very soon. It is likely that we won’t bring home both of them at the same time, and since Eva seems to be doing better we suspect we will bring her home first. She is 2 pounds 11 ounces as of last night. Having said all of that I should give a little update on Abigail as well. She isn’t doing quite as well as her sister; she is still intubated at this point. They are trying to wean down her vent settings to see how well she does with less support, and they are slowly weaning since they want to be cautious and not cause any setbacks. Earlier this week I was holding her on my chest when she decided to extubate herself AGAIN. Actually, she had slowly been working her tube out all day and wasn’t giving any indication that she was having problems. A respiratory tech happened to be walking by and noticed that the breathing sounded a little odd, and so they got to work on her right away. It was a little intense since they did some of the work while she was still on my chest; they had to hand pump a little oxygen bag to get her some air, and her little fingers turned blue. It was a little scary but I wasn’t too concerned since she had tolerated the discomfort for so long, not to mention that the NICU staff has been so competent that I have full confidence in their abilities to act quickly. So all of that being said, if they can wean her rate (how many breaths the machine has to “give” her in a minute) down to 20 they will move her to a CPAP. Her rate is at 24 right now. There are several different types of CPAP, so we aren’t sure which one they will try first. It is fairly obvious that she doesn’t like being intubated, though, so we are hoping once she is moved to the CPAP she will do better on that. This actually happened with Eva, too. She was having more spells until they extubated her, and now she’s doing great. So maybe sister will follow suit. ๐Ÿ™‚ They both are doing fairly well digesting their food. Sometimes they have some large residuals (leftovers,) but in general their bellies are now doing much better. So the main goal now is to get bigger, not to mention they get to start practicing feeding very soon. They will have their first eye checks next week to scan for something called retinopathy. Back in the day NICU doctors used to expose preemies to lots of oxygen, and now they know that doing this causes blindness. Our doctor told us Stevie Wonder was a preemie. ๐Ÿ™‚ But now they have laser surgery that can correct any retinopathy, so this shouldn’t be a problem for the girls. Please keep lifting them up in your prayers. Some issues can strike lightening quick, but in general the doctor thinks that the danger of most major complications has passed. Really, the most stressful part for us is getting everything done and ready for them to come home. The house is still a bit of a mess, so there’re still lots to be done. We have some lovely friends who had twins in the NICU last year lend us A TON of clothes, so we are set on that. It’s also nice being able to talk to them about some of the things we are going through. I know every parent of a newborn is exhausted, and we are not excluded from that. But we are definitely becoming quite the experts there!

It has certainly been a trying month for us. My family could sure use prayers. It all started with me being in the hospital and all of my issues. Then we had to deal with the girls being there. Shortly after that my brother had to have his gall bladder removed. The surgery itself wasn’t precarious, but the events leading up to it had my family in turmoil. And lastly, my Uncle Frank quickly deteriorated in the span of a month and passed away a little over a week ago. Thankfully his actual passing was quick and peaceful, so we could be comforted about that. But it’s hard to lose a close member of the family, so all of these medical issues have certainly left my family exhausted. Only God could have brought us through, and He certainly did. I’m going to ask for prayer especially for my grandparents. I can’t even imagine how hard it is for them to lose their son.

I’m so glad you all love our girls! Here are some pictures of them. This is Eva in a handmade outfit that I just love. Abigail is just 20 grams away from being able to wear clothes, and when she can she has a handmade outfit, too! I just want to take this opportunity to tell you all not to take the little things for granted. For us every day there is a small battle to be fought and won: will they digest their food, will they gain weight, will they remember to breathe on their own. Getting to dress them for the first time; what a treat! And I think it’s something that parents who don’t have babies in the NICU don’t necessarily recognize as a treat. So cherish those things, because we certainly do!

Eva in her homemade dress!

Sucking away on her pacifier

What are you looking at, huh?

Eva loving her "head massage" as Mommy gives her first bath

So sleepy!

She did NOT like this part of her bath

Eva gives her first smile for the camera...it must have been a good dream!

Two steps forward then one step back

Hey, everyone. I’m posting another blog because I’m hearing through the grapevine that people want updates. So I’m posting them here so my poor mother and mother -in-law don’t have to give out the same info over and over and over. I know it’s exhausting for me to relay the same information time and time again; so what better way to get it all done with one fell swoop and answer everyone’s questions?

This week has been a somewhat hard week. A few days ago I got a phone call from one of the NICU doctors. He said they were all concerned about Abigail, because she was requiring more and more support to keep from having “spells,” which is basically when either her oxygen or her heart rate drops (their brains are still immature enough that they “forget” to breathe sometimes, especially when they are asleep. Eva especially seems to struggle with this, and the machine has to do that job for them.) He stated that this was an indication that something else was happening. So after doing some tests, they determined that she had pneumonia. It’s a little different than what we think pneumonia is. Because the girls need support for breathing, they have to have a tube run down their tracheae. These tubes can harbor moisture, and is a prime location for bacteria to set up residence. I wasn’t too comfortable hearing this, but the doctor (and later that night their nurse, Liz) assured me that infection is very common in the NICU. He prescribed a 7-day treatment of antibiotics to take care of it before it got bad, and it seems to be doing the trick. So we can tick that one off the list. Then the next day when I went to visit the nurse told me that a respiratory tech-in-training had left one of the doors to Abigail’s isolette open, which made the heater kick in and raise not only the temperature of her isolette but also her temperature. That one did irritate me. I understand things are going to be hard for my girls for a while, so I don’t need any careless mistakes making it worse. I did complain to the doctor, and thank goodness her nurse that day, Nicole, caught the tech’s mistake. When the tech came back to do some stuff I made Kevin watch her to make sure she didn’t do anything else to harm my baby while I went to go pump. Well, later that evening, I got ANOTHER phone call from the doctor to inform me that Abigail had extubated herself: literally, she yanked the tube going into her trachea out of her mouth and it slipped into her esophagus. It wasn’t an emergency, but that girl is definitely Kevin’s daughter. Anyway, as a result it blew some air in her tummy, so they had to put a tube in her belly to suction the air out. That also meant they stopped her feeds. It means that in the past few days she has lost a little weight and is down to 1 pound 9 ounces (down from 1 pound 12 ounces.) But on the flip side, her blood sugars have stabilized, and that has been an Achilles’ heel for her in the past. Plus the traumatic events of that day caused her to have huge poop, which is something both girls have a problem with. Then yesterday I found out that she would get an x-ray today to examine her belly. I’ts quite large (on Eva, too) and Morgan told me the doctors were suspecting something called pneumatosis. I wikipedia-ed it, and it indicates something far more serious called necrotizing enterocolitis, which is basically when intestinal tissue dies off. It sounded yucky and scary, but after the x-ray it came back negative, thank goodness. It looks like things are settling down for her now, and she will restart her feeds tomorrow. She is a very active little girl, opening her eyes every time her daddy and I visit. She knows our voices. ๐Ÿ™‚ Activity is good since it means she’s not sickly.

Now it’s Eva’s turn to shine. Like I previously said, she also has a large belly but they are keeping their eyes on it. She is now at a scant 1025 grams (2 pounds 4 ounces.) I kid, of course. She is growing just beautifully. Now that she is over 1 kg we can start dressing her in real clothes! Grandma has already bought the girls outfits, and I can’t wait to dress her. I’m fighting a fever now, and when there is any indication of sickness we are not allowed to go down. Most of the babies in the NICU have no immune system, and I don’t want to possibly infect any of the babies there, let alone the girls. So once I’m all better I’ll go down and dress her and get some great pictures. ๐Ÿ™‚ She also had a huge poop yesterday (finally! Who’d have thought poop could be so exciting?) and is doing so well on her vent settings that she will most likely get extubated in a couple of days! This is HUGE. She will have to wear a CPAP, those nice little oxygen tubes that stay in the nose. She didn’t like those last time, so pray she likes them better this time, because her risk of infection goes down if she’s on the CPAP. Also, she’s going to start taking some things orally instead of intravenously, which is also a big deal. Once she’s stable on oral intakes, her PIC line can come out, which is also a place that infections fester. If she can get both of those removed, it greatly increases her chances that she won’t get an infection. Abigail still has some catching up to do, but she will get there.

So keep praying for the girls! They are moving along quite nicely, and having both of them have a good day today really lifted my spirits. Conversely, my family could use some prayer for my Uncle Frank. He went into the hospital the day after the girls were born, and although it was just for a checkup it has developed into something significantly worse. He was diagnosed with cirrhosis (not due to alcohol) and had extremely high levels of ammonia in his system. The medical staff has been able to get most of it out of his system, but the fact that he is still unresponsive makes them suspect something else like a major stroke has occurred. A healing would be wonderful, but we don’t know what will happen. In the weeks leading up to my hospital stay he called me several times to chat, which was very unlike him. I just pray God’s will be done; that He will be glorified, but especially that my uncle found peace in a saving relationship. We will hopefully know more about his status tomorrow.

So that’s it! Thanks for your thoughts and prayers for the girls. I’m hoping everyone will get to see them after the several months of required isolation we will have to deal with when we get them home. I’m sure they can’t wait to meet all of you! Love you all. Hugs, too.

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