Truly a Good Friday

Good Friday, Reason #1:  Christ died that we might have eternal life - thank you Jesus for making the ultimate sacrifice for us!

Good Friday, Reason #2:  The twins had a weight check with our home health care nurse today.  Drumroll please...Anthony gained 14 oz in the last 2.5 weeks and now weighs 17 lbs and Aryanna gained 12 oz and now weighs 15 lbs 8 oz!  For months now they've either lost weight, maintained, or only gained a couple of ounces.  God is good!

Praises

We have praises to report - whoo hoo!

Praise #1 - The twins got the stomach flu last weekend.  Yeah, that's right - that has turned out to be a praise.  Since recovering, they have been eating SO MUCH BETTER.  It's like them getting sick hit some sort of reset button.  They were on a diet of Pedialyte for days.  Normally we make their formula about half Similac Sensitive for Spit Up and half Similac Neosure (a special formula for preemies).  As they started recovering we started adding just the spit up formula to their bottles because we thought that would stay down a little better.  And they started wanting to eat - no fussing, no arching, no refusing to eat.  So we kept making their bottles with just the spit up formula and for the past several days they have eaten more than ever before!!!  I called our pediatrician's office to see if it was okay to forego the Neosure and just give them the spit up formula since they're actually wanting to eat and eating so much more and she gave us the go ahead.  I'm wondering  if they just don't like the flavor of the Neosure.  Maybe when they hit that 4 month adjusted age, sucking-is-no-longer-a-reflex-I-get-to-choose-if-I-eat-now stage they decided they didn't like that formula?  (I also think it's a huge help that they're on the proper dose of reflux meds now as well).  At any rate, I don't care why, we're just so glad they're eating better.  God is so good!  On Ash Wednesday we went to church because Jose was leading worship with the youth.  One of the things we did during the service was write down something tangible we were praying for during lent.  I wrote down that I was praying that Anthony and Aryanna would be completely healed of their feeding issues and I truly believe God used them getting sick to bring healing.  Praise Jesus!

Praise #2 - Anthony's oral aversion is so much better that he started taking a pacifier again!

Praise #3 - Anthony has taken his last two bottles sitting up like a big boy (rather than side-lying).  This is great news since he's getting so big and it will help him even more with other feeding skills.

Praise #3 - Aryanna is sitting up by herself like a champ!  She loves to sit up, look around and see what's going on.  She's just such a happy girl!

Praise #4 - Aryanna hasn't had one of her awful reflux pukes in days!  (Again, maybe the change in formula / increased dose of reflux meds / divine intervention?)

Praise #5 - Anthony's swallow study went well today.  (Had I even mentioned that he was having one?  At their 9 month appointment our pediatrician was appalled that the GIs hadn't done more to help us so she ordered a swallow study for Anthony to make sure he isn't aspirating when he eats.  We're going back to see her next week to follow up and come up with a plan - though we may not need one with how well they've been eating!)  Anyway, he had a swallow study today and he doesn't aspirate when taking his bottle.  He did aspirate a little with his sippy cup, but it was water which is thinner than formula and he coughed so he at least deals with it when it happens.  The fear was that he was having silent aspiration and not showing any signs that he had aspirated - but that's not the case - thank goodness.  She did stress how important PT will continue to be.  He needs to be able to bear weight on his arms when on his tummy to help all the muscles in his chest, arms, neck, etc develop so that he can move to more textured foods.  Right now he's just not there yet and it won't be safe for him to eat anything but pureed foods until he can.  Please pray that he would continue to gain strength in this area.

8 Months/Aryanna's Upper GI Results

8 months!  (Back on January 25th - better late than never, right?!)

This month Aryanna has joined Anthony in the rolling club.  Anthony can go from tummy to back and from back to tummy, but so far Aryanna has just mastered tummy to back.  She's oh so close to going from back to tummy though.  She also sat up by herself for about 10 seconds by herself for PT yesterday!  They both love to grab their feet and put their socks/feet in their mouth.  (PT actually works on them putting their toes in their mouth!  It helps develop their ab muscles I guess!)  They've started "talking" to each other and giggling together - cutest thing ever - see the video below.  And in true twin fashion, they both got their first tooth on the same day a couple of days ago.

We took them to the NICU developmental follow-up clinic at Mercy on Monday.  We just love the nurse practitioner who does the clinic.  She always has great suggestions for helping them with their development and she really takes the time to listen to our concerns.  We spent a great deal of time taking about the twins' feedings and she actually listened to what we were telling her and agreed that eating should be a happy time - so refreshing!  Once we cover all our bases physically with Aryanna's feedings she suggested a feeding clinic in Johnston for both babies.  It sounds like they might have some suggestions on the oral aversion side of things. Overall they're doing really well developmentally.  Jose and I have noticed that Anthony doesn't use his right hand nearly as much as his left and just has to work a lot harder to use it.  He's still pretty little so it could just be that he prefers his left hand, but it could also be a result of his brain bleed.  We're going to ask our pediatrician about maybe seeing a neurologist when we go to their 9 month appointment next Monday, but we also pointed it out to the nurse practitioner.  She agreed that he has a harder time using his right hand and that it would be a good idea to have a neurologist on board as he continues to develop.  Keep praying for that as well.

Aryanna had her upper GI yesterday.  She was supposed to drink this liquid (like barium but for kiddos) while they took x-rays to make sure everything looked okay with her stomach.  I was skeptical going into it because she won't even drink her formula let alone that nasty stuff.  So when it came time for the test she of course wanted nothing to do with it.  They decided to use an ng tube (a small feeding tube through her nose) to get the 10 mls of liquid in her tummy that they needed.  I had seen them put an ng tube in while she was in the NICU, but this was a whole different experience with an 8 month old baby.  It took them 3 tries with lots of crying and gagging to get it in place, but they were able to get the test done and the good news is, her stomach is doing what it should and is in the right place.  The doctor who did the test was super nice and understanding.  He said he knows that the GIs all say that they'll grow out of the reflux stuff by a year or so, but that's a long time to wait when your baby puts up a battle every feeding.  I so appreciated his compassion for the situation we're in.

On a positive note, Aryanna's feedings have gone quite well today (we can only attribute that to all the prayers - thank you!)  We also found a sippy cup today that Anthony likes!  He only took about an ounce because he doesn't have it 100% figured out yet, but he pulled the cup to his mouth because he wanted more!!!  He NEVER does that with the bottle.  I'm really hopeful we can just get him transitioned over to the sippy cup.

Here are our little cuties at 8 + months!

 Haha Daddy!  You're so funny!

 Yum - toes!

Happy girl!

I have spiky hair, just like Daddy.

Everything goes in the mouth these days.

"Don't leave me Aryanna!"

Yup, they love each other!

Sure wish we knew what they were saying - so cute!

GI - Round 2

Things have been crazy around here and I never got around to updating the blog regarding all of Anthony's tests.  Everything came back normal.  The doctor didn't see anything alarming during the endoscopy, and his biopsies and pH monitor were fine as well.  So no allergic condition and no reflux.  We're grateful that he doesn't have any major problems, but it's frustrating to not have any answers.  So we just continue to plug along and do the best we can.  Sometimes he eats fine, but many times he puts up a fight when it's time to eat.  He does awesome with cereal and baby food, so here's to hoping he outgrows all of this eventually.
The title of this post is GI - Round 2, because Aryanna, not wanting to be left out, has decided to join the put-up-a-fight-to-eat club too.  For about the past month she has started vomiting (of the projectile, through the nose, massive amount, freak out variety) more again.  It has been at least once every day or every other day.  Sometimes she just spits up a little and it doesn't bother her, but when it's a big one she is totally traumatized.  About a month ago she started freaking out whenever it was time to eat.  We made a couple of adjustments that helped some, but the last couple of times the nurse has come (she comes every 2 weeks) she has only gained an ounce or two over a 2 week period (they're supposed to gain half an ounce a day).  So we decided it was time to get her into the GI as well.  We decided to go to a different doctor since we weren't thrilled with Anthony's GI's bedside manner ("His oral aversion doesn't seem that bad.  He will suck my finger." "Uh, glad it's not horrible, but I'm pretty sure he can't drink any milk from your finger.")  So Friday we took Aryanna to her GI and he gave us what I think will be some good solutions, but we also weren't impressed with his bedside manner.  He doubled her dose of Prilosec and apparently Prilosec doesn't work with spit-up formula so we're trying just 26 calorie Neosure now.  Really wish our pediatrician would have caught that one when she prescribed it.  Anyway, hopefully the increased dosage will help.  He also ordered an upper GI study for this Tuesday to make sure her stomach is in the right place - apparently that can cause vomiting as well.  So hopefully we have some solutions for her, but we left disappointed with how we were treated again.  We tell the doctors how much they eat in a day, and they say "Oh, that's decent.  Not wonderful, but not awful either - no big deal." What they don't realize is the battles we go through to get them to eat at all.  We tell them about the crying, batting the bottle, refusing to eat but it just feels like it's all about the numbers for them.  If they're not losing weight then it's fine.  The same goes for the vomiting.  Aryanna's doctor told us "All babies spit up."  I know that.  When she spits up it's not a big deal, when she vomits up an entire feeding almost every day and totally freaks out, that's a bigger deal.  He basically told us the only way he would believe that it's a lot is if we catch her vomit in a towel and weigh it (seriously?!) or if she vomits after every feeding.  (Again, we explained we do a lot of things to prevent her from vomiting - holding her upright after her feedings and never laying her flat until it's been at least 3 hours since she ate.  I can about guarantee she would vomit after every feeding if we didn't take those precautions).  I understand that after we rule out any bigger issues there may not be a lot they can do for the reflux besides upping her dosage or trying a different med, but having our concerns heard and at least being treated like a parent that knows their child would be nice.
So, as you can tell, we're frustrated, we're tired and we hate seeing our kiddos go through this.  Through this lenten season we're praying for complete healing for Anthony and Aryanna and their feeding issues - would you join us in that prayer as well?

Upper GI Endoscopy & pH Monitor

Anthony's agenda for tomorrow (Tuesday) morning: go to Methodist for an upper GI endoscopy or EGD (Esophagogastroduodenoscopy) and pH monitor.  After our last appointment with the GI we decided to go ahead with these procedures to make sure there's not something else going on with Anthony's eating.  During the EGD the doctor will take a look at Anthony's esophagus, stomach, and first part of the small bowel and they'll also do a biopsy.  They'll also place a pH probe at this point (through his nose and down his throat like a feeding tube) and that will stay in for 24 hours to detect any reflux he might have.  We'll get to bring him home an hour or so after the procedure (yay for no hospital stay!) and then we'll take him back to the doctor Wednesday morning so they can take out the pH probe.  Please pray that the procedure would go well, that Anthony wouldn't experience any discomfort, and that we would get some answers to help Anthony's eating.

3 Professionals - 3 Different Opinions

We've seen 3 different people now about Anthony's eating (or lack there of) and each had a different opinion:

GI Doctor: thinks Anthony has an oral aversion due to all the negative experiences preemies have in/around their mouths.  He doesn't think reflux is a main factor because he's not spitting up much anymore.

Speech Therapist:  thinks that when Anthony hit the 4 months adjusted age "it's-my-choice-to-eat-now-and-not-just-a-reflex-to-suck" stage that he just decided not to eat much because eating is hard work.  She gave us a couple of things to try, but things had already been a little better by this point because of some things that we had already been trying. He's been eating more since we switched back to a level 1 nipple, started pacing him again like the good 'ole NICU days, limiting feedings to half an hour and sticking to feeding him every four hours.  He likes to trick us and make us think he's hungry sooner than that when he's actually not!  Oh, and we've gone back to feeding him in the middle of the night in order to get another feeding in, which has actually helped quite a bit.  He's been eating an okay amount most days, but will only eat when he's drowsy (and maybe isn't as aware of the pain?).

Occupational Therapist who works on feedings from the AEA: thinks the root of the problem is indeed reflux.  He exhibits all the signs of reflux, except the spitting up, which could mean he has silent reflux.

So what are we to do with all these different opinions?  Trust our instincts I suppose, which are telling us reflux. That's what my gut feeling has been all along.  He really does exhibit all the signs and I think he doesn't spit up much for a few reasons: 1) the reflux meds have helped some, 2) we hold him upright for about 20 minutes after we feed him, and 3) we don't lay him flat for at least a couple hours after he's eaten.  So, rather than have everyone keep guessing what is wrong, I think we're going to ask about doing the pH monitor when we go back to the GI for a follow-up appointment this Wednesday.  If reflux actually is the problem, that would tell us and we could try different meds.  I hate to put him through that (it's a lot like a feeding tube that goes through his nose and down to his stomach and will measure how often he has reflux) but will be worth it if it helps us get to the bottom of this.

And what would a post be without some pictures of these two?!

Having some sweet dreams!

 

 

Anthony and Aryanna have started "talking."  We caught Aryanna on camera the other night, but Anthony gets camera shy so we haven't caught him yet.

 

New Plan

Well, after many phone calls yesterday we now have a new plan for Anthony.
Here's a recap of what happened up to this point:  We went to the GI the day after Christmas and he recommended speech therapy.  We waited a few days and hadn't heard anything from speech so I called and they informed me there was a 3 month waiting list.  Anthony started eating even less so we went back to the GI this Thursday and he recommended that we check him into the hospital on Monday so he could see a speech therapist and get an EGD and pH monitor on Tuesday.
Ok, fast forward to yesterday.  I get a call from outpatient speech therapy that they want to schedule him for an evaluation on Tuesday.  (I was super confused at this point - apparently this was not the same person that had previously told me there was a 3 month waiting list).  I explained to her that he was going to be checked in to the hospital on Monday and Tuesday and asked if it would be her office that did an inpatient evaluation.  She said it was and that she wasn't aware that was the plan.  So she called the GI's office and talked to the inpatient coordinator who said that we could skip admitting him and just take him to the speech evaluation on Tuesday.  Since she didn't talk to the doctor and it was obvious that not everyone was communicating clearly I called the doctor's office myself to make sure it was ok to put off the other tests for now.  The nurse called me back after talking to the doctor and said we can just go to the speech appointment on Tuesday and if they see something that they think would require more tests or if things get worse we can admit him on Thursday or the following Tuesday for the tests.  We're definitely grateful that Anthony won't have to go through the trauma of those tests.  Pray that we would get some good information and strategies to try from speech.

Aaaannnnddd, Anthony just finished an entire bottle at noon today!  Don't even know the last time he's done that!  Praise God!

The Preemie Journey Continues in 2013

2013 has brought with it more preemie struggles.  Christmas break was a mix of emotions.  We had lots of sweet moments as a family and thanks to 2 snow days we got to spend 2 weeks together.  We had so much fun watching the twins open Christmas presents for the first time and enjoyed lots of smiles and giggles.  But Christmas break was also very stressful and frustrating.  Anthony had slowly been eating less and less.  About a week before Christmas we called the pediatrician and she referred us to a GI doctor.  A couple days after that our visiting nurse came and we found out that he had lost weight - not good.  The main factor in his lungs healing and getting stronger is weight gain.  Our appointment with the GI wasn't for a few more days.  Every feeding was becoming a battle.  One of us would try to feed him while the other would sing to him or hold a toy with flashing lights and music to distract him.  The poor boy wants to eat, but when it comes down to it he arches his back, pushes the bottle away, cries or turns his head away.  We tried different schedules, sippy cups, and feeding him with a syringe.  The majority of our days have revolved around trying to get him to eat.

We took Anthony to the GI doctor on the 26th and the good news is that he's still on the growth chart.  The doctor isn't sure that the reflux is the biggest problem.  He thinks that he has just developed an oral aversion because of all the negative experiences preemies have with their mouth and face (ventilator, feeding tube, suction, tender grips, etc).  Thankfully, he doesn't have a total oral aversion and still sucks his hands, toys, etc but he definitely is not happy about the bottle.  The GI referred us to speech therapy (they help with feeding strategies, swallowing, etc) and had us increase his formula from 24 calorie to 27 calorie.  He wanted us to try and get him to take 25-30 oz a day. We waited a couple of days to hear from speech therapy and after hearing nothing I called to find out when they could get us in.  There is a THREE MONTH waiting list!  A lot of good that does us!  And, in the mean time Anthony hadn't eaten any more than 20 oz in a day.  Then, a couple of days this week he only ate 10 - 12 oz, even with going back to feeding him in the middle of the night (he usually does the best at this feeding because he's half asleep).  So we went back to the GI today and the verdict is that we need to do some tests and find out what's going on.  We'll take Anthony to the hospital first thing in the morning on Monday and they'll admit him and we'll actually get to see a speech therapist that way.  The speech therapist will observe him eating and decide if he needs a swallow study and maybe recommend some techniques that could help him eat better.  Then on Tuesday they'll put him under anesthesia and do an EGD (Esophagogastroduodenoscopy - I see why they abbreviate that!).  They'll look at his esophagus, stomach and the first part of the small bowel.  They'll also take some biopsies to see if he could have an allergy that's causing pain.  They'll also place a tube in his esophagus for a 24 hour pH monitor to detect reflux.  Hopefully, after all that we'll have some answers and can find a solution so eating isn't such a horrible experience for Anthony.

To say that all of this is stressful would be a vast understatement.  It's awful to see your child hungry and yet not want to eat.  I've been clinging to this verse from my devotional the other day:  So let us come boldly to the throne of our gracious God.  There we will receive his mercy, and we will find grace to help us when we need it most.  - Hebrews 4:16.  I've had to remind myself several times to just trust God to take care of my little boy - so hard to do.

Please pray for healing for Anthony and that we would be able to find something to help him.

On a positive note here a few pictures from Christmas - more to come soon!

Pulmonologist Update

The verdict from our pulmonologist appt today: Anthony gets to join Aryanna in not needing oxygen while he's awake (just barely hung onto 95 with no O2 for that to happen), we'll wait on a sleep study for both of them until March and they've gained some more weight (key for their lung development-pray their reflux gets better), and we don't have to use the apnea monitors anymore-yay for less chords and equipment! We're making progress!

Look How Far We've Come! 6 months old!

The twins are a little over 6 months old now (almost 4 months adjusted) and look how much they've grown!  Here is a flashback to the NICU.  Can you believe how tiny they were?  I mean, I knew they were tiny at the time, but that was all we knew so I don't think we fully grasped just how small they were.  When I compare these pictures to how big they are now, it really puts things in perspective!  We're so grateful for how far they've come.

Here's proof of how much they've grown!  Wow! (And this was when they were 5 months old, so they've grown even more!)

What are they up to now that they're six months old?

• Their hands are the most interesting things ever!  They spend lots of time looking at their hands and figuring out what they can do with them.
• Holding toys with both hands and bringing toys to their mouths
• Talk, talk, talk!!!  Aryanna just loves to make noise and you'd swear Anthony is telling you a story every time he opens his mouth.
• Giggle - Aryanna, especially, gets to laughing so hard when Daddy is being silly.  Anthony is just starting to chuckle every once in a while, too.
• Smile - from the moment they open their eyes in the morning and all day long!  So blessed to have such happy babies.
• Kicking - both love to kick in their bouncy seats, when they're laying on the floor and each other (see the last picture!)  
• Pulling their cannulas out of their noses - ALL.THE.TIME - they think it's pretty funny, but mommy and daddy don't think so - especially at 3 a.m. 

• Rocking tummy time - they're getting great at holding their heads up.  We were getting a little worried about Anthony's head control and added Physical Therapy to the mix, but then he just started holding his head up.  That boy just does things when he's ready to.  It's just hard not to worry sometimes when we still don't know the ramifications of his brain bleed.

• They're getting so close to rolling over!  They've just about got it and just need a little push getting their leg over.
• Eating cereal - we got the OK from the pediatrician to start cereal at their six month appointment. Anthony LOVES his cereal and will eat a whole serving.  Aryanna is not so crazy about it.  We've tried rice and oatmeal and we've tried mixing it with formula and with juice and she is just not a fan.  We keep trying a little bit every day - I'm sure one of these days she'll decide she likes it.
• Receiving monthly Synagis shots - these help lessen the effects of RSV should they contract it.  So far they haven't gotten sick this cold and flu season - Thank you Jesus!  Thankfully our visiting nurse can give this to them so we don't have to take them to the germ-filled doctor's office.  
• Their reflux has improved some.  After a couple of weeks on Zantac (which didn't work) we tried Prilosec and that has helped some.  We've still had good days and bad days.  Anthony only gained three ounces the last 2 weeks and Aryanna gained 7 ounces (they used to gain about a pound every 2 weeks).  Please keep praying that they would be free from pain, that they wouldn't refuse to eat or throw up and that they would continue to gain weight.  They did both have record-setting eating yesterday!  Hallelujah - Thank you Jesus!  Pray for more of that!
• Other prayer requests:  Anthony has another head ultrasound tomorrow (Monday).  Things have been stable  for the last several head ultrasounds, but it hasn't resolved yet (it could still be a long time before that happens).  Our pediatrician gave us the choice of doing another head ultrasound now while his soft spot is still open or waiting until later which would mean having an MRI or CT scan.  There really aren't any concerns with his head circumference or development at this point so she left it up to us.  We decided to go ahead and have another head ultrasound while we still can for peace of mind.  We also take them back to the pulmonologist on December 19th so prayers for healthy lungs are appreciated!  We are very much looking forward to the day that we will be oxygen-free, but are grateful that they have the equipment they need.

 Her favorite place for her hands these days! 

(Until she gags herself!)

Proof that she wants to roll so badly!

 Love those smiles!

Talking to the camera!

Head control - much improved!

"She did it!"

Anthony loves sucking on those hands, too.

Happiest.Babies.Ever. (In our opinion:))

Huh?

"I love you!" (Not even posed - this was all them!)

And this one, just for fun!

Hi-ya!