No more feeding tubes!

The feeding tubes are out, and both boys are doing excellent!  The nurses were a little doubtful of William being able to handle a full day without it, as he is more easily tired out from the bottles, but he's actually done better than Aaron tonight.  Hopefully they will keep it up!  It's so nice to be able to see more of their faces, and I'm sure they feel better without a tube stuck up their noses and down their throats...I wouldn't like it :)

There is talk of Aaron being ready to go home in about a week and a half.  This is great, but Stephen has drill next weekend, so I'm actually kind of hoping he'll wait until the 12th to come home, so that Stephen is here too.  I'd manage if he wasn't home, I always do as it's a normal part of the life of a military/firefighter wife, but still prefer that he be here for Aaron's homecoming! William could follow quickly behind him, it just depends on when he can get over the apnea.  He did have a little spell this morning, but they are slowly decreasing in frequency and severity.  Thank goodness :)

Aaron & William

Getting there

Short update today - Aaron is starting to finish more feeds through the bottle instead of his tube, including one from me :)  William has had another good day, with just little dips in his sats.  The doctor said that the CMV virus test will show false positives more than it will false negatives, so there's a chance that Aaron doesn't actually have the virus.  They aren't going to recheck as it doesn't matter at this point if he does or doesn't have it, and he's not showing any symptoms.  The day was good!

Snuggle Buddies
Aaron (left) & William (right)

9 Weeks

The boys are 9 weeks old today!

Cross your fingers and toes...no apnea spells for William since Saturday night.  Please pray for this to continue!  When he goes down, he goes down hard...and it needs to stop.  This will be his biggest obstacle to get home.  He will need to go a solid week without a spell in order to come home - the week should prove that he's over it, as we definitely don't want it to happen outside of the NICU.  Aaron, on the other hand, is almost ready to come home - perhaps as early as next week.  He's really doing well right now, breathing on his own, and taking good amounts from the bottle. 

They should both have a few changes within the next week.  Once they reach 4lbs, they can move from the little covered isolettes to open cribs.  We'll be able to hang mobiles and plastic crib toys.  William has reached this point, and Aaron should be there either at the weight check on Wednesday or Sunday.  Also, their feeding tubes should be removed by the end of the week.  This means that they may eat a little less because they have more control over the amount they actually take, and it takes a lot of energy to suck and swallow and breathe at the same time.

We're getting closer :)

After the Hurricane

Everyone is fine today - we are thankful to have our power restored as of this evening, and to not have suffered any damage from the storm.  Our thoughts and prayers are with anyone who was not so lucky!

William and Aaron are doing fine today.  After posting last night, William did have 4 significant apnea/brady spells.  He was having them once about every 36 hours...not 4 in a 4 hour window.  The doctor attributes the temporary increase to the 2 month vaccines that they received yesterday, which can make some babies sick for the next day or two.  He does seem to be doing better now.  Preemies still get their vaccines based on their actual age, not their adjusted. 

Other than that, no new news.  Aaron continues to just hang out...at this point, I'm pretty sure he'll be coming home before William, although we still don't know when that will be.

2 Months!

Weight Check
William - 3lbs 15.4 oz - the big guy is going to reach 4 pounds tomorrow!
Aaron - 3lbs 11oz - he's catching up!

Our power has been out since noon, but everyone is fine.  I've been reassured that our chest freezer will keep the hundreds of ounces of milk frozen for several days, but I'm still thankful my dad brought down a generator before the storm!

On to the boys - another good day for the boys.  I made it into the hospital this morning and bathed both (hence the Saturday weight check; they are usually Sundays and Wednesdays).  They are so much more awake in the morning than in the afternoons, my usual visiting time!  I bottle fed them for the first time (for me) after their nursing session this morning.  I'm not sure of the last time I ever gave a baby a bottle - I don't recall ever needing to give one to Anna myself, so maybe while babysitting in high school?  Feeding preemies is different than older babies - they lay down on their sides to take the bottle to help prevent choking.  They both did well. 

Aaron's cannula is removed again, at least for a trial period.  I'm fairly confident that he will end up coming home without needing oxygen.  I have a feeling that William, on the other hand, will be coming home attached to a few machines.  He'll get there, though, and we still don't know when the homecoming dates will be. 

It turns out that Aaron is the brother with the CMV virus.  This was a surprise to me - just because Aaron has been generally healthier the past few weeks, and is breathing better, I was certain it was William.  Pediatric Infectious Disease examined him yesterday and did determine that it was picked up after birth.  This is really good news, as contracting it in utero has potential of severe neurological consequences, and the little guy doesn't need anything else against him in that arena.  Contracting it after birth isn't much different than catching a cold.  It's possible that he didn't catch it from me, but that's the most likely scenario.  This raises the question, though, of what to do about William.  Do we take him off of breast milk (no!)?  Do we freeze first it to kill the virus?  The second choice would be an interesting option, I'm not sure that I would want to work out the logistics of always giving William frozen and Aaron fresh.  I went to Pub Med last night though and found out that freezing isn't really proven to work anyway.

At the end of the day, the doctor decided to do nothing to prevent William from getting it.  Chances are, he's going to get it anyway if the rest of the family has it, and again, the symptoms would be similar to a cold and then he'd be fine.  It's so ironic if Aaron did pick it up from me, as much of an advocate as I am and have been at the hospital for fresh milk.  Oh well :)

Today is their 2 month birthday!  I took pictures again of them with the little ties.  I'll start putting the ties on onesies when they get home, but thought it would be better to do just diapered pictures after their baths in order to compare better to last month.  The ties are the same size in all of the pictures.

William

Aaron



Exam Day

The boys had a big exam day today - head ultrasounds and eye exams.  During the last eye exam, both boys' eyes were still too immature to detect the presence or lack of ROP.  This time, William's eyes were still too immature to evaluate.  Aaron does have stage 1, but this is fairly common and expected with preemies and should resolve with no issues.

William's head ultrasound looked good - his ventricles were enlarged from the bleeding, and have decreased in size in both the last ultrasound and this one.  Aaron's was about the same as the last exam.  The bleeding in the tissue is still resolving.  Even when we are able to see the extent of the damage, we will not know what effect it will have until it is time for him to reach different milestones.  Ideally, the doctors would come to us and say "Surprise, there's no damage, just healthy brain tissue!", but unfortunately that's not going to happen.  The brain is an amazing thing though, and preemie brains are still plastic - they can rewire so that other areas take over the functions of the damaged area.  The doctor shared a story today of a bright, healthy 2 year-old girl whose parents had her examined because she was having some difficulty walking - an MRI showed that she was missing literally half of her brain.  The other side had taken over almost all of the functionality. Amazing, really.  Don't worry, we're not looking at anything quite that serious, but the story helps strengthen my faith that both boys will be just fine when all is said and done.

Tomorrow is the boys' 2 month birthday!  Hopefully the bad weather holds off long enough for us to make it to the hospital in the morning! 

Stay dry and safe tomorrow!

We've confused the doctor

Weight Check
William - 3lb 12.8oz
Aaron - 3lb 9oz

Today has been mostly good for both boys.  William did have a small episode this morning, then a larger one tonight.  I've come to expect those, although we really want them to stop.  He did take a full bottle this morning with Stephen, though, so that was a first for him.  Aaron continues to do well, on low oxygen requirements, and able to eat a good portion of his feeds through the bottle.

In interesting news for the day, one of the boys did test positive for the CMV virus.  I only saw the doctor in passing, and she didn't recall off-hand if it was Aaron or William.  The interesting part is that the other one tested negative.  The only reason they were tested was because of the abnormal liver screening, and the expectation was that the cause would be the same for both of them.  The doctor was confused that only one would have it, unless a) the test results were inaccurate or b) the CMV virus has nothing to do with the current liver issue.  She also said that she almost wishes they hadn't tested for it, as the knowledge will cause unnecessary worry.  This virus, while I had never heard of it before, is apparently incredibly common.  Up to 75% of the American population has it.  He probably got it from my breast milk, meaning that I have it, or potentially (but not likely) from the blood transfusion.  She does not believe he contracted it in utero, which would have serious neurological side effects.  Many of the things I've read on the virus's effects on preemies are not positive, but I will trust the doctor's judgement that those things don't apply to our boys.

34 Weeks

Gestational age, that is.  The boys would be 34 weeks along today...this means that they are technically allowed to leave the hospital in one week, if ready.  While I want them home as soon as we can get them, they just won't be at that point in a week.  I'm okay with this as I want them to be healthy!  Aaron did take another full bottle this morning, and William almost finished his.  This is excellent, as it is a big step closer to home.  William continues to have significant apnea issues, so I'm not sure if the albuterol is having the desired effect.  Please pray that these spells stop!

Again, no real changes for the day.  The nurse hasn't weighed them yet tonight, so I should have updated weights to post tomorrow.

Just for fun, here they are in the same position, so you can kind of see how different they look. William is in the top picture, with his cannula falling out, and Aaron is in the bottom.  They have more hair than you can see here, and the lighting was different in both pictures so their coloring is off. 

Oh yeah, earthquake!

I should modify the first sentence of my last post to say "Today was uneventful...aside from perhaps the largest earthquake in Virginia's history."  The whole hospital rocked!

Slow day

Today was uneventful.  The boys were both sleepy when I was there, but had a good day.  Aaron has really taken a hold of the bottle feeds.  They would consider removing his feeding tube now if we didn't need to control the milk intake in order to bring up his calcium levels.  They should reevaluate next week.   The doctor is also considering giving the boys Prilosec to help with the reflux, but it hasn't been confirmed as successful with preemies.

They've grown so much!  Aaron is on the left, William on the right:

8 weeks!

The boys are 8 weeks old today :)  Stephen and I both had good visits with the boys, although William did have a little spell while Stephen was there.  Aaron took a full feeding from his bottle with Stephen!  The little guy seems to be doing better than William on all fronts except weight now, but William will get there too.

There were a few new developments today.  William is now being treated with albuterol to help keep his airway open and hopefully prevent any major spells like those he has been having, where he is completely out for at least a minute or two.  Apnea spells are common in preemies, but his have been significant.  The nurses do assure me that he will outgrow it.  The doctor considered re-starting the caffeine, but decided to try this route instead as caffeine can irritate reflux.  William also had albuterol, in a nebulizer form, after his PDA ligation, but that form made his heart rate too high.  Hopefully the extended release elixir will not have the same effect. 

Stephen texted me this morning that the doctor wanted to start alternating formula with the breast milk...my initial internal response to that was "No Way!".  I know that they will each have two formula feeds per day when they come home, and I've accepted that.  Right now they get one feeding fortified with extra vitamins and minerals, but mommy milk is the best nutrition for all babies, especially preemies.  Do I want them to have 4 formula feeds a day each?  No.  Unfortunately, breast milk is also lacking in calcium and phosphate, which can lead to brittle bones.  Formula can help make up the difference.  Our primary nurse knew that I would not be on board with this suggestion, so she and the doctor opted decided to increase the amount of milk they are eating at each feed.  They had been holding back on the feed increases due to the reflux, but more milk should provide the same benefits of the formula.  Their mineral levels will be monitored to make sure this helps, and if it doesn't, then formula would be suggested again. 

In the last development for the day, both now have jaundice.  This is not the newborn type that can be fixed with phototherapy lights and bowel movements.  At this point, we don't know what's causing it.  It could be the breast milk, as it can sometimes decrease the body's ability to excrete bilirubin; it could be CMV virus (probably not, as I'm not suspected to have it, but they're still being tested); it could be something different. Their bilirubin levels will be watched, and hopefully it will clear up on its own. 

Please continue the prayers that they will be healthy enough to come home some time in the next few weeks!

Potty Training Help

Obviously this is not about the boys.

Anna turned 3 in April, and is still not potty trained. This wouldn't be a big deal except that she can't move to the 3 year-old class in school until she's out of pull ups.  All of her friends moved up in June.  I walked into her classroom today, and was greeted by the sight of adorable little toddlers about half her height, who probably can't yet speak in sentences...and who are now in her class.  Anna is super bright and well articulated for a 3 year-old, and can speak in paragraphs with well thought logic.  I don't understand how being in a class with kids a year younger than her can help anything.  We consistently reward her when she does sit on the potty. She knows she'll get a treat, we'll celebrate, and when she's potty trained she'll get a kitten.  We've used stickers and candy.  We offer her ample opportunities to sit on the potty, as does her school...she'll now sit on it, but won't go.  I don't know what's holding her back, but I know it's under her control and she'll do it when she feels like it.  The pediatrician said that kids don't go to kindergarten in pull-ups, and not to worry about it too much...that's great, but it's not going to catch her up at her daycare, so I am going to worry about it.  She needs to be with kids her own age.  Any outside of the box potty training tips would be greatly appreciated, as I feel like we've tried everything else!

And Another

Weight Check
William - 3lb 11oz
Aaron - 3lb 6oz

I hate to be uninteresting, but another short post today.  Okay, I'm lying...I LOVE short posts, as they've grown to mean smooth sailing for the boys.  Anna helped to give William a bath today, although she was a bit disappointed she wasn't helping with Aaron, who was bathed yesterday :)  I suppose I could have asked one of the other nurses to take pictures, but my hands were definitely full and our nurse was holding up William's head, so no pictures of this event.  Maybe next time!  I just spoke with the night nurse, and she gave Aaron a bottle tonight before his tube feeding as he was wide awake and alert - he took 20ccs from the bottle!  This is the most that he's taken so far.  They're both currently getting 32 or 33ccs each feeding.  William holds the bottle feeding record at 25ccs right now.  Baby steps!  They're getting closer to home every day.

Another good day

I'm going to keep today's update short and sweet - the boys had a good day.  William was taken off of his antibiotic, as no infection was officially diagnosed.  This is good, as it removes the IV from his arm, but also a bit frustrating because we don't have a cause for his increased apnea.  He has one more dose of Lasix tomorrow, which can be taken by mouth.  They may restart his caffeine to assist with breathing but have not decided yet.  He did have another spell today after Stephen fed him, but the rest of the day has been fine.  Aaron is still back on his cannula . . . he deserves a rest.  We know that he can breathe on his own, and as he gets bigger and stronger he will be able to do it for longer.   That's all for tonight :)

Friday Cheers Take 7

Today was another good day for the boys.  They were PERFECT while I had them out today, and I don't remember them having even any small desats at all.  I did just call tonight to find out that Aaron's nasal cannula is back on due to some small desats tonight, but that's acceptable.  He probably just got tired and needs a little assistance, as he is on room air and just using the flow...and their primary nurse is back tomorrow, so she'll probably take him back off of it if he's behaving.

I spent a good portion of our time today holding them together...they need each other :)

Aaron is on left, William on the right.  The "pillow" between them is actually the splint stabilizing William's IV onto his arm:

Better Day Today

Weight Check

William - 3lbs 8oz
Aaron - 3lb 3oz

They're both over 3 pounds now!

General Update

Aaron's model citizen status continues :)  He's doing really well these days, and starting to fill out more and gain more weight, and catching on with feeding from bottles and breast.  William was on good behavior today as well.  While it's still not clear if he has an infection, either the antibiotic or the Lasix has greatly helped, much to our relief.  His oxygen requirements are down again, and give me hope that he'll be off of oxygen before he comes home.  We'll be okay if he does have to come home on O2, but prefer that they both come home free of any apparatus.  His feeds were restarted gradually today as well, and should be back to normal tomorrow.

Short update today, but there's not much to write about when it's a peaceful, easy day :) Love these days....and love the boys!

A little hurdle

Aaron

Aaron had a great day and was a model NICU citizen.  He took part of a bottle from Stephen this morning, and had a productive session with me this afternoon.  He is breathing well without any oxygen.  He still has a few small ups and downs, but brings himself back up fairly well.

William

William, on the other hand, did not have a good day.  I found out this morning that he had another apnea/brady spell last night, and his oxygen requirements were increased and he was back on the high flow cannula.  I immediately felt like he was sick, since Aaron had an infection when his oxygen needs increased a few weeks ago, prior to the PDA ligation.  A chest x-ray was being ordered, which turned out to be fine.  He then had a few breathing issues while Stephen was visiting, preventing his bottle feed.  When I arrived this afternoon, two nurses were at his bedside trying to bring him back from a big apnea/brady spell.  That's probably enough detail.  It was not a good moment for me.  When he did come back, he did not look like himself at all and they did labwork.  It does look like he may have an infection.  As a result, he now has an IV giving him antibiotics, Lasix (a diuretic to help with extra fluid), and TPN.  His feeding is stopped for the day, other than the TPN, but hopefully will resume by tomorrow morning.  He needs food!  He's a hungry little man! 

After his bloodwork, I was able to cuddle with him for a long time.  We both needed it.  He perked back up and seemed healthy again while I was holding him :)  I'm hopeful that the antibiotic will fix his apnea issues, and that he was only having them because he wasn't feeling well.  If not, then we have no idea what's going on.  If it's a result of chronic lung disease (which they both probably have), I don't understand how it would worsen like this, as the damage was done with the intubation.  Anyway.  The day was probably rougher for me than him.  Let's pray that the antibiotic takes care of it and we don't have to keep worrying about it.  Breathing is important. 

Champion eaters

Stephen bottle fed the boys this morning.  William was a champ!  He took 25ccs (slightly under an ounce), and our nurse said it was the best feeding session ever.  Hopefully he can keep it up!  Aaron took 10ccs by bottle, which was also great.  I'd love to get the feeding tubes out some day :)

We did have a few events that remind us why the boys are still in the NICU, and will need to be there for a little while longer.  William's blood gas levels today showed that he's retaining carbon dioxide, so he will definitely need the nasal cannula for a while.  The cannula helps him to expel the CO2.  He may get more lasix if he still has fluid in his lungs, which could also be causing the high CO2 levels.  This should just be a result of being a preemie, and should resolve as he gets bigger. 

Both boys had apnea (or apnea-like) episodes today.  I was not present for Aaron's, but William was laying in my lap when he had his.  He stopped breathing for a good few minutes, which felt like forever to me.  Our nurse took him back to his bed to stimulate him and give him air manually, and she was not panicking, although I was about to scream  for every nurse to rush to his bedside.  I did finally ask her if she needed help, and I believe she called someone else over just to placate me.  She explained after he came back up that apnea is self-limiting - he's not sick and he WILL start breathing again.  This was unlike his episode with Stephen yesterday, since yesterday he was in the middle of a feed and could have aspirated.  These episodes are relatively brief and will not have any long term affect on the boys.  They will need to end, though, before they can come home. 

7 Weeks!

The boys have reached their seventh week!  Let's pray for a lucky number seven, and continued progress with their feeding and reflux.  The issues from yesterday are now behind us, and they are both doing well.

We were a bit disappointed to learn the cause of William's episode yesterday as it was preventable - the nurse of the day used the wrong flow nipple on his bottle - but our primary nurse will now make sure everyone knows what he needs.  He has a strong suck, and the faster flow caused him to take too much at once.  Both boys did awesome today with their feeds from me, and they are just so cute I never want to put them back in their beds!

The doctor of the week and our primary nurse both seemed confident that Aaron will move back off of the nasal cannula.  His dips in breathing/heart rate are more symptomatic of reflux than apnea, so the cannula probably wouldn't make a difference.  Our days are usually better when their primary nurse is working.  She knows them better than anyone but us, and has faith in their abilities to feed and breathe.  She's also very good with positioning them correctly and spending positive time with them rather than just doing the routine tasks.  She's not as nonchalant about what we do with the boys as some of the nurses, which actually works well with me.  It might not work well with some people.  While they're in the NICU, I want someone who knows what they're doing and wants to pass that knowledge on to me, rather than someone who always just lets us do what we want, when we may not know the best things to be doing.  We went over some of the massage and stretching techniques today, and she is making sure that I spend more time working with them, rather than just holding them :)  It'll be good for them.  PT will go over all of this with us more before they leave.  While all (okay, most) of the nurses are great, I believe her nursing style and her own constant research/growth best fit my needs as a parent.

If you get a chance, check out the song Strong Enough by Matthew West.  If I had time to figure out how to embed it in this post, I would :)  This is one song with an awesome message that has helped and is helping me get through this whole experience, and reminds me that He is here with us. 

Another Week Down

Weight Check
William - 3lbs 6.2oz
Aaron - 2lbs 15.6oz

General Update
Today didn't fall into any definition of bad, but it wasn't as good as the rest of the week has been.  Stephen bottle fed William and Aaron this morning.  Aaron did well for him, but William's airway closed after a big gulp of milk.  Our nurse for the day tried to get him to start breathing again by pounding his back, but thankfully one of the other nurses knew to stop her as that can exacerbate the issue.  This nurse said she would have been worried if he hadn't stopped breathing, as it's a natural defense mechanism in response to swallowing too much.  He did start breathing again, of course, but the doctor ordered no more oral feeds for him for the day, to watch for aspritz.  (No oral feeds means no food from bottle or breast.  He does still get his tube feeds).  This was unfortunate, as he was wide awake and wanted to feed from me as soon as I held him...and I couldn't let him do anything :(  He was licking my skin, trying to move around to get to food...and all I could do was hold him and know that my baby wanted something that I could give him, but wasn't allowed.  I think he would have done fine, and he needs the practice.  Aaron had his own spell while receiving his tube feeding after Stephen had left, so no oral feeds for him either.  He was sleepier while I was holding him, so it wasn't as hard for me with him.

On top of that, Aaron's freedom from the cannula was short lived.  Because of his breathing ups and downs today, and the nurse of the day being especially cautious due to William's incident, she put him back on the cannula.  I have a feeling that our primary nurse will have him back off of it within the next few days, as she has more confidence in his ability to breathe on his own.  We'll see.

I'm aware that most of what I've reported for today may come across as negative, and it didn't leave me jumping for joy, but in the grand scheme of things it was just another day.  They continue to get bigger and stronger, and these issues will resolve as they get a little older. It's hard to believe that they will be 7 weeks old tomorrow!

A Big Day!

Baby brother Aaron is off of his oxygen!  The nurse exclaimed that it was a big day as soon as I arrived, with Anna in tow.  I was focused on getting Anna settled before even thinking about the boys, and thought at first she was referring to Anna's presence.  Nope!  I believe she had to repeat herself before I asked what was going on.  The nurse had mentioned yesterday possibly moving him off of the cannula soon, but I didn't know she meant today.  He's doing very well breathing on his own.  He is still having a few little dips, but would probably have had them on the cannula as well. 

William still has a little while to go before removing his cannula.  The boys were weaned off of the caffeine earlier this week, which was used to help them remember to breathe.  Since then, his oxygen requirement has actually gone up a bit, so now they're trying to get him back down and eventually move him off as well.  He has consistently been behind Aaron in the respiratory arena so I'm not surprised that he's still on the cannula even though his brother is not.

In other firsts, Anna held Aaron :)  She is expressing more interest in them recently.  She's funny - she said to me last week, "Mommy, you can't take care of my brothers."  Her response when asked to elaborate:  "Daddy can do that."  She's insistent that she doesn't like boys in general, so mommy shouldn't either.  She is also playing favorites.  William was her favorite first, since he is Baby A.  However, since realizing that Aaron's name actually starts with an A, he is now her favorite.  Why?  Because her favorite letter is A, like Anna, of course. 

She also told me this week that if the five of us had to ride in our car (which is entirely too small to hold three car seats in the back), Aaron would sit in her lap, William would sit on the other side, and Allee, our dog, would sit in the middle.  I asked her if she wanted to hold Aaron in the hospital after she made this comment. She has been hesitant to even look at them, so her positive response was a big step.  She immediately wanted him off of her when he was finally placed in her lap, but ultimately she did very well with them today.

Pictures

The Conley kids all together!  Aaron is stretching, William is sleeping, Anna looks like a Giant :)

Anna holding Aaron:

Aaron telling William a story:

William's reaction to Aaron's story:



In their outfits:

Friday Cheers Take 6

Today was a big day, for the sole fact that the nurse actually made mention of the boys coming home, without us bringing it up first.  It was an emotional moment for me, because it hit home that they will be with us sooner rather than later.  The NICU has been their lives, and our lives, for almost 7 weeks now, and I don't know any reality involving the boys other than the hospital.  They have to be at least 35 weeks to come home, which would be 3 weeks from now.  I don't think they will be home quite that soon, but it is something for which we need to be prepared.  :)

The boys had their first eye exams this morning. The doctor looks for ROP, which I've mentioned before.  (This condition is actually the cause of Stevie Wonder's blindness - he was also a preemie, but it wasn't correctable then like it is now.).  Right now, their eyes are just showing immaturity, which is expected.  The next exam will be in two weeks.  I'm not really worried about this, because typically only severe ROP would lead to extreme future vision problems, and if any of the kids need glasses it will probably be due to genetics not being a preemie. 

Both boys drank from the bottle with Stephen today, which is awesome progress.  Granted, it was just a tiny bit each, but it's progress. 

The past two weeks or so have been a constant relief with the good news/no news.  We're so thankful to be at this point!

William

Aaron

Aaron & William

Another day closer

Another day down!  Again, no changes for today.  For those of you who wonder when they are actually coming home...we have no clue.  They are now 32 weeks gestational age.  Some newborns do come home as early as 35/36 weeks, but some stay in the NICU until 40 weeks or beyond.  The typical expectation is that preemies should go home around their due date (40 weeks), which is October 5th for the boys.  It all depends on them.  They need to be able to eat and breathe appropriately, and they currently have a fair distance to go.  I would be surprised if they had to stay any time beyond their due date, but don't want to get my hopes fixed on any particular timeframe.

I will try to take more pictures tomorrow.  They're adorable in the itty bitty clothes! I'm still adjusting to my new schedule and the moments feel a bit rushed right now.  As the routine gets more settled, I'll make time for a miniature photo shoot.  I could sit and stare at them and take pictures all day :)

Bottle Feeds

Edited:  Apparently I wasn't signed in last night when I wrote this, so it wouldn't publish.  Everything is fine!

Although it will be a few weeks before the boys are expected to be able to bottle feed, they can start practicing now.  Stephen had bottle time with Aaron this morning, and he did very well!  William will get his turn tonight or tomorrow.  His temperature had dropped a bit, so he needed some swaddle time warming up in his bed while Stephen was there.  I did hold both this afternoon.  They are so calm and peaceful next to each other, I know they're each aware of the presence of the other.

Other than the bottle feeding, there's nothing new to report today.  The eye doctor should see them later this week, and I'm curious to know how that goes.

Short post today :)

So Cute

Today was another peaceful, uneventful day for the boys.  They have moved from the sicker baby area in the NICU, next to the doctor's station, to the middle room that is reserved for the healthier ones.  This is a good move, as the middle room typically has less traffic and noise, and they will benefit from the decreased stimulation. 

Temperature probes are generally removed from the babies when they reach 1300 grams, or about 2lb 13oz.  Babies cannot wear clothes until this line is removed, as clothes would influence the temperature.  When removed, the isolette no longer acts as a little heating box and the babies are moved to room air in order to regulate their own body temperature.  William's was removed last week, and we've been waiting for Aaron's weight to go up so that we could dress them together.  Aaron is still slightly under this weight limit, but had high temperatures today.  Because of this and his gestational age, the nurse went ahead and removed his temperature probe...which means...photo op!


William

Aaron (no, he's not in the most comfortable position, even though he looks like he's just hanging out.  I took the pictures before settling him in properly!)

They are getting so big!

6 Weeks

Weight Check
William - 3lb 3oz
Aaron - 2lb 11oz (in case you missed it yesterday)

General Update

The boys had a good visit with Stephen and Anna this morning, and then I headed in after work.  This schedule should work out fairly well, as the boys will have mommy or daddy there throughout most of the day when Stephen is off.  William is getting a whole ounce of milk (30ml) every 3 hours, and Aaron is up to 25ml.  They are both still battling reflux, but they seem to be handling it a bit better.

Head ultrasound day!  This is still my least favorite day of the week, even though the past few have been stable.  William's ultrasound looked good - his bleeding is stable, and the ventricles appeared smaller.  Aaron's ventricles are also stable, and the bleeding in the tissue has resolved.  As somewhat expected, this has left a small cyst (hole in the brain) where the bleeding resided.  The cyst is located at the top of the right ventricle, in the white matter which controls the left lower body movement.  White matter controls motor skills and grey matter controls intelligence.  While we wish the cyst didn't exist, it's better than it could be.  We're thankful that it's in the white matter, just on one side, and appears to be small.  Again, this could mean nothing in the long run, or it could mean some form of cerebral palsy or developmental delays.  The spectrum is wide and it's not predictive of anything.  It just is what it is. 

A little more about the brain bleeds (and to whomever is reading this to Goo: you can skip this part) - I haven't been too detailed in this subject, because it's the one that scares us the most and has the most unknowns.  Googling "Intraventrical Hemorrhage" results in a mix of negative clinical outlooks and positive real life stories.  The bleeds are generally caused by changes in oxygen levels and blood pressure.  Preemie heads are very fragile, and changes in pressure can easily rupture the veins in the brain.  Ventilators are a common cause, but necessary for the baby's survival. 

Basically, grades 1 and 2 are associated with no long term effects.  Grades 3 and 4 are more severe and generally associated with long term developmental issues, with 4 being a class of its own as the bleeding is outside of the ventricles and into the tissue itself.  A common effect of 3s and 4s is hydrocephalus, which (if needed) would be relieved via spinal taps, reservoirs, or shunts in the brain.  We are lucky that neither boy has developed this condition, as it's one less thing to worry about.

With the first ultrasound, William had a bilateral 3 and Aaron was a bilateral 2.  We weren't overly concerned about Aaron at the time, but were frightened for William.  Since then, William has been stable and is now resolving, and the bleed actually only affects one side.  He does have questionable periventricular leukomalacia (PVL), but the ultrasound is still fuzzy in this area.  If he does have it, it could also affect the motor function in his legs (or do nothing).  Sometime between the first and second ultrasound, Aaron developed a grade 4 bleed, which is not a worsening of the grade 2 but an entirely new bleed.  We were at first told that it was on both sides, which was heartbreaking, but again it was actually just on one. 

Ultrasounds can only show so much - both boys will have MRIs before they are discharged, which will provide greater detail into any questionable areas and give us a better picture of what's going on.  I will repeat that none of this is predictive.  Brains, especially preemie brains, are remarkable and can learn to compensate for damaged areas.  The boys will be receiving early intervention services as soon as they come home, which will help to more quickly identify any areas needing assistance and allow us to provide them the best therapy.  Please continue to pray that they end up with minimal effects.  Our little fighters have come so far in the past 6 weeks!

Another Week Down

Weight Check
Aaron - 2lb 11oz
William - will be weighed after midnight, to be reported tomorrow

The only real update for today is that William does indeed have bilateral inguinal hernias.  Again, this is a common occurrence with preemies, and especially boys.  He will have surgery to repair them a few days prior to discharge.  According to the doctor, it does not cause him pain, and it will not lengthen his hospital stay.  Also, there's a good likelihood that Aaron will develop a hernia at some point in the next few weeks as well simply because he is a preemie.  I did ask if this would increase the chance that the boys come home at different times (it won't), or if the doctors could plan the surgery so that they leave together (they can).  They are currently on track to leave together, but that could change.  Other than the hernia news, today was not much different from yesterday.  Anna visited for a little while, and I had good kangaroo time with both boys.  William was very awake during our practice nursing session today, and he was a natural :)

We did learn a few things last week from our preemie parent friends as well as the physical therapist, which were interesting.  One is that the boys should not use any type of toy that encourages early standing - exersaucers, jumparoos, walkers, push toys, etc.  While one would assume that such toys would be beneficial to their muscles and coordination, they are quite the opposite.  Studies have shown they cause delays in gross motor development and train the muscles improperly.  The best thing for them will be plenty of playing time on the floor, tummy time, crawling, etc.  This is good in a way because we don't have enough space in our house for doubles of the big toys, but now we need to find a new way to contain them when needed :)

Life will change a bit tomorrow with my return to work.  My only concern is getting enough sleep, but this is shared with all new parents.  Thankfully, I will be part-time through the end of the year.  Until the boys come home, my plan is to work in the morning and be at the hospital in the afternoons.  I will be sticking to a strict schedule in order to keep my pumping in line with their feeds, and to be able to maximize the time I do have with them between holding and nursing.  Even though my time with them will be decreased, I'm so thankful to have the time I do as there are several NICU parents who can only see their babies on the weekends (due to circumstance, not desire).  Our boys are fortunate to have usually both of us there daily and receive so much skin to skin contact.

Kangaroo Times Two

In happy news...there's nothing noteworthy to report today.  The boys continue to eat well (despite the reflux), and both are attempting to breastfeed.  Aaron is more effective at this point, but William has been sleepier during his attempts.  We should be able to start bottle feeds at some point next week as well, but not while I'm present, as they'd have the better alternative available.

Next week could be a bit more eventful.  They will both have follow-up head ultrasounds on Monday, should have their first eye doctor visit at some point, and we'll know if William has a hernia.  Preemies are at an increased risk for ROP, which in most cases is treatable but it's best if caught early.  This first exam will probably only show that their eyes are still immature. 

We may be able to start dressing the boys tomorrow or Monday in little preemie clothes, if Aaron has gained just a bit of weight.  The criteria is 1300g, not 1500 as I originally was told or misunderstood.  William has been at this point since Wednesday, but I want to dress them together. 

New for today:  I was able to Kangaroo both together today...they're so cuddly :)  I'm really glad we can hold them together now, as this will make things a lot easier next week when my time is limited.

(Ignore the big person in the picture)

Friday Cheers Take 5

This post should be another short one, as the changes from yesterday are minimum.  Hopefully I'll get this published earlier each night going forward, as I need to start going to bed earlier :)  I've enjoyed sleeping in (as late as Anna would let me) for the past several weeks!

On to the boys:  William and Aaron had more together time today, which they both seemed to enjoy.  Both have gone up in feeds, and both are having some reflux.  Extra vitamins have been added to William's milk, which stink and taste bad, and are probably contributing to his reflux and the several presents of spit up he gave me.  Aaron will get them as well once his reflux is a bit more under control.

Warning:  The following sentences have potential to be embarrassing to William in the future:  Our primary nurse has been keeping an eye on a spot on William that could be a hernia, at the top of his scrotum.  She seemed fairly confident the other day that it was just his testicles descending, but the doctor feels otherwise.  They will continue to watch it and should know within a week what it really is.  If it is a hernia, he will have surgery before discharge in order to correct it.  Hernias are very common with preemies, and it would have no future affect on him at all after the surgery.  Anesthesia poses more risk than the surgery itself.  If it is not a hernia, then I have mentioned his boy parts on the Internet with no good reason and he probably won't be happy with mommy :)

Here's another picture of the boys together.  William is now on the left, eyes open, and Aaron is sleeping on the right.

Keep 'em coming

The good days are on a roll.

We did not hold both boys at once today, but both had cozy cuddle time.  Stephen held William this morning, and I held Aaron in the afternoon.  Aaron actually had some milk right from mommy, which was awesome.  He can't nurse full time yet, but he'll get there.  (Actually, they won't be allowed to get to full time nursing for a while.  Both will have 2 bottles a day of special preemie formula for a few months).  I tried again later with William, but he was super sleepy and not 100% interested.

Physical therapy came by today to see both boys.  I had left the NICU for a few minutes and missed it, but it was a good visit for both.  Right now, the physical and occupational therapists basically do the same things with the boys.  Both were very alert with her and maintained stable sats the whole time she was checking them out, and responded well to touch.  Her assessment was positive and showed that they are behaving in the appropriate manner for their age.  Sometimes babies with the brain bleeds will be more jittery when they wake up, or have muscle tone outside of the normal range, so we're happy to see no effects yet.  We'll learn how to do infant massage within the next few days, which will be fun to do with the boys.

William's bed was moved to the other side of Aaron's.  He was in the closest spot to the doctor's area, which can get noisy and has too much traffic.  So now, William is on the left and Aaron is on the right, which threw us (and the nurses) off all day.  They are slowly working their way down toward the middle room, where the bigger, healthier babies stay. 

I believe that covers all of the updates for the day :)

Happy Birthday to Grammee!

Together at Last!

Weight Check

William - 3.04 lbs
Aaron - 2.96 lbs

Reunion

For the first time in over 5 weeks, William and Aaron were able to be right next to each other.  I'm positive that both knew his brother was next to him.  They checked each other out a bit, stretched out and punched each other a bit, and spit up all over each other :)  The fun begins!  Stephen was working today, but thankfully he had been transferred and had the flexibility to be at the hospital for the special moment.  I'm keeping this post short as it's really all about the boys being together...the pictures will say more than I ever could.

A Few Pics

Aaron is on the left, William is on the right

No more PICC Lines! And a change of heart.

General Update

Today was pretty similar to yesterday in regard to the boys' behavior.  William is now a superstar and breathing and eating like a champ.  He maintained his sats throughout the day.  Aaron's sats are still very affected by the reflux, and his breathing was up and down all day.  This is common with preemies, as with full term babies.  While he may not outgrow the reflux any time soon, as he grows his body will be able to deal with it better so that he doesn't stop breathing.  Along with the reflux comes spit up, which is now covering my shirt :)  But it does make him feel better.  What was the saying in college (and I can honestly say that I don't know this first hand)?  Puke and rally?  He's got that down. 

Feeds went up again, and the PICC lines came out for both boys - excellent steps forward.  They will be getting all of their feeds through their tubes, and the caffeine (to help them remember to breathe) will be mixed with the breast milk.  The feeding tubes are just tiny tubes running through their noses into their bellies.  They were originally in their mouths, which is more irritating.  They would get just an IV if they need antibiotics in the future.

Both boys received some time with the occupational therapist today.  She went over a few positioning tips to help correct postures that have been created in the NICU.  When the babies are in the womb, they are basically curled into a little ball.  Their shoulders round in, their heads are in line with their spine, and their hands generally stay at their midline (middle of their body and close to the face).  In the isolette, their shoulders start to lose the roundness and rise up, their heads can get pushed back from the CPAP, and their hands stray from the midline.  We'll learn how to keep them positioned properly, and will eventually learn infant massage and stretches.  She checked out the tone and reflexes for both boys, and both are appropriate for their age. 

Change of Heart

The big news for the day came this morning...our primary nurse asked if we had toured MRMC's NICU yet, which we have not.  We were there very briefly when the boys were born, prior to their transfer.  All that I remember about it is that it's very small compared to St. Mary's, and very dark.  She suggested that we tour it in the next day or two, which immediately made me ask why - I thought we couldn't move them for a few weeks?  Apparently the doctor of the week feels otherwise, and we could move them as early as the end of this week!

Hold the applause.

As much as I wanted to move them back to Mechanicsville, to be 20 minutes closer to home and just 5 minutes from work, I don't think they're ready.  The doctors are the same, but the nurses are different, and the level of care can't compare to St. Mary's.  MRMC sent the boys away for a reason.  They don't take singletons under 28 weeks, or multiples under 30 weeks.  William and Aaron will be 31 weeks tomorrow.

My understanding from talking to several nurses, including one who used to work there, is that they're used to dealing with babies who are mostly stable.  They are trained by the St. Mary's staff, and St. Mary's is the leader with more progressive care.  They only have 2 or 3 nurses per shift, and no secretarial staff, so they are also answering phone calls.  When one nurse goes to lunch, there could only be one nurse available.  What would happen if both boys are having an apnea/brady spell?  As one nurse told me, and not in the most positive tone, "they could handle it," but is just "handling" it enough?  Other negatives to moving now - the therapists are not there every day, the surgeons are not there, and if anything serious did happen they would be moved back to St. Mary's anyway. 

Also, we now have a relationship built with St. Mary's.  We know the nurses; the nurses know us and, more importantly, the boys.  We'd have to learn a whole new set of personalities, and it could take a little while for the comfort level to build back up.

The two benefits that I see are:  1)  It is dark and quiet, so they would have less stimulation, which would be awesome for them.  St. Mary's is busy.  and 2)  It's closer to home.

Our primary nurse and other individuals have been pushing for the move for us, since I've been adamant about it since day 1.  We will go ahead and tour the MRMC NICU this week.  At the end of the day, though, we've decided that our convenience is not worth the potential downgrade in their quality of care.  (Obvious statement, I know).  We will re-evaluate in a few weeks and see if we want to move them then.  I am appreciative of that flexibility.  That said, if we get a few weeks down the road and they say the boys can come home in another week or two, we'd probably just stick it out at St. Mary's.

As mentioned above, the boys will be 31 weeks tomorrow!  The time is flying.  Not to start predicting when they will be coming home, but for the sake of conversation let's say that maybe perhaps they could come home around 36 weeks...that's only another 5 weeks ahead of us.  It's funny to think "only" in regard to 5 weeks, but having been through that time already it doesn't feel long at all.

An extra prayer request for today:  Our NICU friends should be bringing their 24 weeker (now about 38 weeks) home on Sunday - please pray that she has an excellent week and can begin her new life home with mommy and daddy as expected!

5 Weeks Old!

This week has started out as well as last week, with cozy cuddle time and general good behavior from the boys.  Both have gone up on their feeds again to 18cc (just over 1/2 an ounce) every 3 hours, and may have their PICC lines removed tomorrow.  I'm looking forward to the removal, as it's one less potential infection site.

We can start putting the boys in clothes when they reach 1500 grams...or about 3lb 5oz.  I need a refresher on the metric system :) I can't imagine the itty bitty boys fitting into even the littlest outfits, but it will be so much fun to dress them!

William had a great day and was fairly stable.  He had been a day or so behind Aaron in the respiratory arena, but held his own today.  And...we had practice nursing time!  When his tube feed was over, he unlatched and just snuggled...so cute.  My kangaroo holds with both boys going forward will be at breast instead of just skin to skin contact.

Aaron had a good day as well, but was up and down with his sats most of the afternoon.  While he is digesting his food well now, he is having some reflux and spitting up, which would attribute to the desats.  Occupational Therapy was ordered for Aaron today, but it wasn't the best day for it to start as he needs to be a little more calm to handle more touching.  It was ironic that it was only ordered for Aaron when I believe William would have done great with it today.  Per the therapist, the sessions will be daily and probably only last about 5 minutes each day.  I'm still not exactly sure what the 5 minutes will involve, but hopefully we'll find out tomorrow for both of the boys.

Here's a bit more about occupational therapy for preemies, from http://preemies.about.com/od/glossary/g/occupationaltherapy.htm:

Definition:

Occupational therapy (OT) helps people of all ages to develop life skills. In the NICU, an occupational therapist works with staff and infants and their families to promote good motor development. Some ways an occupational therapist may work with premature babies include:

• Helping infants learn to breastfeed or drink from a bottle
• Helping parents position very small infants in a car seat
• Performing infant massage
• Promoting good muscle development through careful infant positioning
• Encouraging good sensory development through appropriate stimulation

Pictures

Here's a funny picture of William from yesterday...look at that face!

Aaron all snuggled in his bed:

A Good Week

This has been a great week for the boys - let's pray for another one!  They have both recovered nicely from their PDA ligation, and are now eating and breathing well.  They are both eating half an ounce every 3 hours, and should have their PICC lines removed within the next two days.  This means that they will be getting all of their nutrition just through my milk (fortified with extra vitamins), the best thing for them.

Weight Check
William - 2lb 14oz
Aaron - 2lb 8oz

I'm starting to feel more and more like their mommy, and like I have three kids.  Not that I didn't feel this way before, but the situation is just a bit unnatural.  A few weeks ago, our primary nurse had asked me to fill out a sheet listing the boys' preferences - what stresses them out, what makes them happy, what we do for them.  I was hesitant to fill it out (still haven't, actually) because I didn't feel like I knew them well enough yet...we're just there a few hours a day, but the nurses are there 24/7.  They do rotate through different nurses, but I felt like their primary nurse would know them better or would disagree with some things that I'd say.  The whole subject of that sheet, and every time she'd ask for it, made me unhappy.  I'm happy/relieved to now feel like I know them better than all of the nurses!

Hopefully the updates will remain short for most days.  We really want the boys to be at a point where they're just feeding and growing, with not much else to report :)