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. 🙂 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 purées 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. 🙂

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. 🙂

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. 🙂

20120326-142520.jpg

20120326-142540.jpg

20120326-142558.jpg

20120326-142617.jpg

20120326-142641.jpg

20120326-142657.jpg

20120326-142712.jpg

Advertisements

It’s been too long…

Hi, everyone. I know I’ve been neglectful about posting about the girls.  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.  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.  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.  But we’re starting to get back to where we were.  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.  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.  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.  That seems to be the time frame for everything with the girls: Eva does something, the next week Abigail does it, too. 🙂

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.  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.  It’s also very nice not to have to deal with Apria anymore.  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.  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.  She informed me last week that she would discharge us, too, because the girls are basically healthy.  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.  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.  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.  She’s figured it out a couple of times but isn’t really consistent about it.  Abigail has been able to get from her tummy to her back, but not the other way yet.  She’ll get there at some point. 🙂

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.  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.  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.  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.  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.  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.  I also stay in touch with friends who also have preemies and deal with the same struggles.  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.  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.  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.  It means the world to us!

All dressed up for the ball!

Like her mommy, she too is a "hat" person 🙂

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? 🙂

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 🙂

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.  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.  She still vomits on a daily basis, but when she eats well it doesn’t hurt her quite so badly.  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.  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.  For some reason, she just stopped wanting to eat.  Suddenly it’s been such a struggle to get her to take a good amount of food.  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.  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.  Poor Kevin has a better rapport with Abigail, so he has been coming home from work every 3 hours to feed her.  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.  The pulmonologist had us run a pulse oximeter test to see what her oxygen levels would be on room air.  She did great! Except for when she was fussy and screaming; her levels dropped then.  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.  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.  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.  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. 🙂

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

168 hours a week

Hello everyone. This blog hopefully won’t be too long. But I say that every time, don’t I? Things have not been going as smoothly as I like. I knew preemies were going to be hard, that I was going to be exhausted being locked up with them all day. But I thought that the difficulties would be administering meds and dealing with their crying. Well guess what? That’s the easy stuff!

So no surprise; twins are a lot of work. But I’m really blessed that the girls are both really good babies. Fussy at times, yes, but mostly happy and pretty much healthy babies. And get this: they already sleep through the night!! We usually feed them at 8:00, put them down at 9:00, get them up for one more feed at 11:00, and put them down for the night. They usually sleep until at least 6:00, sometimes even until 7:00. And we love it! Sometimes Abigail wakes a bit fussy, but Eva is a tremendously good sleeper. So we really lucked out with that, because things could be that much harder. I’ve heard stories of mothers who religiously feed their babies every 2 hours for months and months, and God bless those women. They will have a fabulous milk supply, very little sleep, and toddlers who struggle to sleep at night without food.  OK, I’m hypothesizing on all of that but I’m not going to be the one to put it to the test. I like my sleep, thank you very much!

Our main struggle right now is feedings. The basic gist is that they both have started to take less and less milk with each feed. When we left the NICU, they were taking full bottles every time, roughly 3 ounces. We first saw Eva start to do it: taking between 1-2 ounces with each feed. It surprised us, because wouldn’t a growing girl be hungry and want to eat? I panicked and thought it might be an oral aversion, which is a definitely a worse problem, but that doesn’t seem to be the case. She sucks on her pacifier, and she really loves to suck on her hand. So we thought maybe the reflux was causing her so much pain that she didn’t want to eat. She still throws up on a daily basis. So I think reflux is part of it. Our doctor today told us that if it was terrible reflux, they’d be fussy all day and night. So now she is leaning towards it being a milk protein intolerance. I have to cut out all dairy from my diet so they don’t get anything that is making them sick. I had a tear in my eye as I watched Kevin eat my Ben and Jerry’s Half Baked ice cream last night.

Anyway, it looks like these eating problems might last a while and are quite typical for preemies. It’s a little bit nerve wracking because Eva has basically not gained any weight for a month. I think for normal newborns it would be extremely worrisome since it’s generally not typical. I’m not thrilled about Eva’s current state, but the nice thing is she is really pretty healthy otherwise. She is actually still growing (she grew 1/2 an inch in 4 days) and is right on track developmentally. She has a lot of trouble pooping on a daily basis (sorry to get so…honest) and we’ve tried numerous things on the doctors’ and nurses’ recommendations: diluted prune juice, Karo syrup, glycerin suppositories, oatmeal cereal…I’m only mentioning these things for moms who might be reading this and having the same issues. Trust me, it would be nice if I could find this information easily on the Internet but it isn’t quite that simple. Let me do what I can to spare an inkling percentage of you readers the pain and effort.

Abigail eats a little better, although she still vomits daily as well. Our biggest frustrations have been that they refuse to eat at times, but also that we have had trouble getting medical professionals to take our concerns seriously. I have called numerous times to speak to a doctor, only to be told I would either have to wait for a nurse to call me back in a couple of hours or wait eight hours for a doctor to call me back. It’s caused me to get nasty on the phone, and I don’t like myself when I’m nasty. I hate being the annoying mom that calls the doctor for every little thing, but a baby having problems eating, vomiting on a daily basis…I don’t think that’s normal. Maybe I’m wrong; this whole parenting thing is new for me, but the only time vomiting daily is normal is when you’re pregnant. After saying all of that, I should elaborate that over the past month I’ve spoken to a good half a dozen doctors about this issue, and while all of them wish this wasn’t happening, none of them are concerned that there are any pressing emergencies. I think at this point for me it’s has sunk in that the girls are going to have feeding issues for several months at the very least. I’m confident they will outgrow it (they are Italian/Hispanic after all; they need to learn to love food!) but the struggle is far from over. I wish there was a magic button or easy solution to this problem, but if I have learned anything from my own past medical experiences it’s that some of these things are bitter struggles that only serve to grow one’s character and faith in the Lord.

Changing the subject, so now here comes my little paragraph about things that I might construe as advice for anyone who thinks it’s helpful. If you have an iPhone, iPad, or iPod touch, download the BabyConnect app.  It’s seriously the best app ever for keeping track of things like feeds, diapers, sleep patterns, nursing, medicines, etc. The data entry is a bit of a pain, but it’s worth it! Also, if your baby has reflux and has to sleep in an elevated position, use Bendy Bumpers. The NICU used them, and we loved them and bought some when we got home. They do the trick.  Also, I know we are somewhat fortunate that the girls were preemies and could therefore come home on apnea monitors, and while the monitors are a pain, they do give us a huge peace of mind so we can sleep without worrying about SIDS. Eva is actually already off of hers, so we use the AngelCare monitors with the sensor pads under her mattress: it detects any lack of movement and goes off when it senses nothing for 20 seconds. It was a little pricey but definitely worth it in our minds. Again, these things are just tidbits that I’ve picked up from other moms who have generously dispensed advice. Well, the BabyConnect was my own discovery. It’s not for nothing that I’m a tech junkie. 🙂

I promise the next blog update will have some pictures. I’ve been quite busy, needless to say, and I haven’t taken too many pictures. I do have a video of each girl smiling; I’ll post them below. They are such cuties! I’m biased, I know. I hope I can be more diligent about letting you all know what’s going on. It actually took me about two weeks to write this blog. Half of the problem is I type these out on my iPad, and Kevin regularly steals my iPad to play Wheel of Fortune. So I guess I’ll have to get better at hiding. I think it’s a skill that mothers should develop anyway. 🙂