Friday, December 16, 2011

5.5 Month Update

Weight Check
William - 12lb 6oz
Aaron - 11lb 8oz

The boys are doing great! 

William is soaring through his room air trials.  His oxygen requirements have been low since he came home, at just 1/10th of a liter, but I still wasn't sure it would go this well.  He's actually a happier baby without the nasal cannula in.  He is now on room air (meaning no assistance) during the day, and on oxygen at night.  We will do a night study the week after Christmas to see if he's ready to come off of the oxygen completely. I'm confident that he will be.  He has also just been taken off of the caffeine, so he's one drug down as well. 

Aaron had a head ultrasound last week to make sure there's no unexpected ventrical growth - thankfully, there is not.  He will have blood work next month to see if he can discontinue the extra vitamins. 

They are both happy, cuddly, loving, well-adjusted babies and we are incredibly blessed with their good health and development!

Monday, December 5, 2011

Photo Card

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Tuesday, November 29, 2011


I promised Thanksgiving pictures in the last post, but I'm going to share a few different pictures instead.  A friend's photographer friend came out and spent a good amount of time with us and captured cute pictures of the boys. Here are just a few...I'll share more when I have them :)  William is on the left in the top two pictures; Aaron is on the left on the bottom one.

Friday, November 25, 2011


Weight Check
William - 10lbs 6oz
Aaron - 9lbs 13oz

I feel like these posts are becoming very repetitive these days...which is a good thing!  The boys are steadily growing and doing well.  They received another Synagis shot (RSV vaccine) today, but otherwise have no appointments for a few weeks.  William will do a trial off of his oxygen before that next appointment, so we'll see how that goes.  I'm cautiously hopeful that he will be at least partially off of the oxygen some time soon.  I do have cute pictures of the boys from Thanksgiving that I will post within the next few days, although most friends should have seen them already on Facebook.  Aside from the oxygen, by appearance alone I don't think most people would guess their battles to get to this point.   Both boys are smiling now, and quick little moments like William laying half asleep on my chest, flickering open his blue eyes, recognizing me, and turning his whole face into a grin...then nodding back off to sleep again...fill my heart with joy and peace.  We have our babies home, they are healthy, and we are happy.

Sunday, November 13, 2011

Quick update

Weight Check
William - 9lb 1oz
Aaron - 8lbs 10oz

As you can see, they're still growing...and eating...and eating...and eating!  The boys are doing well.  The neurologist appointment mentioned in the last post went well - they are currently on track for their adjusted age, and will continue to be monitored.  Aaron has another head ultrasound scheduled in a few weeks to make sure that his ventricles haven't enlarged more unexpectedly. 

William also had his follow-up eye exam last week, and, like Aaron, his ROP is GONE :) However...there are now anecdotal incidences of ROP reoccurring several months down the road with Avastin. This is not supported in official research, but the boys will now be seen again in one month instead of six months.  I thought our trips to Stony Point would be over for a while!  I did ask if this meant that laser surgery would again be preferred, and the opthamologist assured me that he would still choose Avastin if it was him.  If the ROP does come back, though, laser surgery would be the next step.  Prayers that it does not return!

I believe William's room air trial is the only other update - it will happen next month, before their next pulmonologist appointment.  Hopefully by then he will be ready to come off of the oxygen.  It's not horrible, it's just somewhat limiting and the tubing hides his beautiful face :)

Friday, November 4, 2011

One month home

Weight Check
William:  8lb 3oz
Aaron:  7lb 13oz

Still growing :)  The boys are doing really well.  I would love to type a good long update... but they are both currently in my lap after their last feeding of the evening.  They both have reflux, so we hold them upright for a good while after the feeds.  Usually William will struggle with the reflux and Aaron is a happy spitter, but tonight is the opposite.  My goal is to have them both calm and in bed by midnight, and to stay asleep until 3 or 4 so mommy can get some rest!  Really, that's the biggest challenge...getting sleep.  Everything is going great with the boys.

We had the developmental clinic visit yesterday, which did show that both boys are a bit tight - interestingly, William is tighter.  Physical therapy will help this and we will have a schedule in place after the next Early Intervention visit next week.  We visit the neurologist tomorrow - I'm really curious as to what he will say.

William is now on a nebulizer due to a bit of chest congestion, which will hopefully clear soon.  The pediatrician was going to trial him off of the cannula, but now we wait.  Honestly, I don't think he's ready to be off of it yet anyway.  His sats drop lower than desired when I've taken it off of him just to check.





Monday, October 24, 2011

Life is Good

Weight Check
William - 7lbs 6oz
Aaron - 7lbs 1oz

They're moving on up!  We've had a few appointments in the past week, I just haven't had time to sit at the computer and type.  There are better things to do these days :)

The boys had their follow up eye exams last week with great results - Aaron's ROP is GONE, and William's is getting there.  He has another appointment in a few weeks to confirm.  They still have a one in five chance of developing future vision problems like needing glasses, but given my eyesight they'll probably need them anyway.  Another cheer for Avastin!

Aaron's circumcision was scheduled for today.  We made it out to Stony Point, he was given the numbing gel, we waited an hour... and then we were advised to wait due to his hydroceles.  This is also why we have to wait with William, but apparently Aaron's weren't as evident in the consultation.  So now they will both need general anesthesia to have it done in about 8 months.

Everything at home is going well.  Anna has adjusted beautifully to having her brothers at home.  She's super cute with her brothers :)  We are not getting much all...but that comes with the territory. 

Life is good!

Random Pictures

We framed hand/footprint pictures to match Anna's. The pictures are from the hospital shoot before they left the NICU:



Aaron & William!

Big Sis

Saturday, October 15, 2011


Weight Check
William - 6lbs 10oz
Aaron - 6lbs 3oz

Everything is good here!  A few people have actually asked if we were "scared" to have them home - no, there's nothing scary about it!  They are typical newborns, aside from some extra equipment and appointments.  They are eating well, gaining weight, and keeping us up all night since they eat every 3 they are supposed to do at this age :)  Early intervention came out on Monday, and will come back in early November to put a plan in place for physical therapy.  The boys also had their pulmonologist appointment this week, which went well.  William will be on oxygen for at least the next month, but we'll test him at that point to see if he's ready to come off of it.  We also had the follow up appointment with the retinal specialist, and William's eyes are looking much better.  I went back to work this week, for the first time since they've been home, and will continue to work one or two days a week through the end of the year.  Our moms will help out beginning next year so that the boys can stay out of daycare for the first year.

It is harder than I thought it would be to keep this updated right now - when I'm sitting, there's almost always a baby (or two) on my lap, which makes it difficult to type!


Our very healthy, non-smokingadult family and close friends who have had the flu shot are more than welcome to visit the boys.  We are not able to take them out into crowds for a while, as they get stronger and healthier, so the only real option to see them is to visit.  (Feel free to bring dinner if you come by!)  Their little immune systems and lungs are very susceptible to any bugs, and we'll do whatever it takes to keep them healthy, which includes severely limiting their access to the public.  That said, if you meet the criteria mentioned above, we welcome the company :)

Random Pictures

A new meaning to double fisting:

Aaron sucking his thumb:

Funny William look:

Sweet Boys: 


Friday, October 7, 2011

Settling In

Typically when you bring babies home from the hospital, the philosophy is to sleep when they sleep.  This should be even more important with's a little difficult to do, however, with endless appointments.  We've had five doctors' visits, plus two from the home health nurse, in the past week.  We've been busy!

Wednesday was their due date!  All milestones will be calculated from October 5th, not from their birthday.  We'll now speak of their "adjusted" age - 2 days - and their "actual" age - 3 months.

Weight Check
William - 6lbs 3oz
Aaron - 5lbs 10oz

Urology appointment - The boys could not be circumcised in the NICU.  They need to have it done within the first five weeks after their due date in order to not need anesthesia.  After the initial consultation, Aaron's is scheduled for October 24th.  William, however, will need to wait until he's closer to one due to the hydroceles...which means he will need to go under.  Poor little guy :(

Retinal Specialist appointment - William was checked by the retinal specialist today to follow up on the pediatric opthamologist's concern that his ROP was questionable for treatment.  There was no question today - he needed treatment.  He received the shots of Avastin right in the office, and was a champ.  I believe the doctor had previously only given the injection to preemies in the NICU, which is one reason they had wanted to keep William hostage longer.  William did really well, though, and appears to be having no issues afterward.  His eyes will be checked again next week to see if the injections helped.

General Update - The boys are doing great!  They are eating like little monsters and love to cuddle.  We've made Anna's bedtime into family reading time, and she loves her brothers.  I have taken them on two very short walks around the neighborhood in the Moby wrap, which is fun for me, even carrying the oxygen over my shoulder.  I carried Anna everywhere in a mei tai, so I'm glad to have a similar option for the boys even though they're going to get too heavy much faster.

And if anyone plays Words with Friends on their phone - my name is TheLuckiest06 - start a game with me, I'm an addict and it's what I do while just sitting on the couch cuddling while their sleeping!

William yawning
Aaron relaxing in the bath

Out for a walk

Monday, October 3, 2011

Eye doc & Pics

The boys had their follow up appointment with the pediatric opthamologist today.  Aaron's eyes are still beautiful - the retinopathy is gone.  William now has stage 3 in both eyes, but neither have plus disease or require treatment at this time.  The left eye is slightly worse, and he will be monitored.  It could still resolve on its own at this point, but if it doesn't, we know it can be helped with Avastin.

We are settling in well and getting a little bit sleep here and there.  Getting up every three hours with two kids is not quite the same as it was with Anna! 

Four of the Five

William sucking his thumb after his bath

Aaron sucking his thumb
Anna laying down with William

William & Aaron

Friday, September 30, 2011

Party of Five

We are settling into life at home well.  The boys are now 5lb14oz (William) and 5lb5oz (Aaron).  Aaron still has some catching up to do, but he's eating well so he'll get there.

We made it out of the house yesterday for the first pediatrician visit - it's an event to load them and their equipment into the van!  Aaron's apnea monitor isn't bad, but William has his monitor, which has no case or handle, and his oxygen tank.  I fashioned a carrying strap/handle out of a belt for his monitor to make it a bit more portable, which helps.  William is the winner when it comes to accessories.  We now have a huge oxygen tank for emergencies in our dining room, which looks like a helium balloon tank, along with several smaller portable tanks, and the concentrator that is used when in the house.  He also has 25ft of tubing attached between himself and the concentrator, to allow him to be a bit more mobile.  It's a good thing our house is small so he can pretty much reach all points.   He will probably need the oxygen for the first month while we get settled, but I don't imagine him needing it much longer than that.

It's also an event for me to get on the computer right now, except to track their feeds.  Our hands are going to be full for a while!  I don't want to put them down.  We did their first home baths tonight, and they loved it.  Bathtime was nice and relaxing in the NICU, so it should be a happy place for them :)

I will try to keep this updated with their progress and any major events a few times a week. Thank you again to everyone who has supported us throughout the past several months!

Wednesday, September 28, 2011


The family of five is all under one roof!  We arrived home safely this afternoon, and everyone is doing great.  It's hard to type with one hand (Aaron is in the other), so I will fill in details tomorrow :)

Bigger day than expected

We did get to room in yesterday!  I was therefore not able to update last night, but we did have several changes...

Both boys are coming home tomorrow!  The doctor this week recognized the logistical difficulties of bringing the boys home on different days when they are both ready to come home.  She talked to the eye doctor, and he was confident that William would be able to handle the procedure, if needed, out of office.  As a result, we get to bring them home together, tomorrow (yay!), and were able to room in with both of them last night (yawn!).

I received training yesterday on the boys' equipment - apnea monitor for Aaron and oxygen with oxygen monitor for William.  I'm not sure that I mentioned that Aaron will be coming home on an apnea monitor - his reflux is causing fairly significant spit up, so the monitor will allow us to put him on his tummy to sleep to help, without worrying about the increased SIDS risk.  Hopefully neither boy will need either piece of equipment for too long, as it will be a bit limiting, but we'll deal with it :)  They also both passed the car seat test.

Other changes:  Aaron will no longer need his special extra calorie preemie formula, and will be drinking just breastmilk fortified with Enfacare.  Instead of the fortified breastmilk, William will be drinking straight breastmilk plus two Enfacare bottles a day.  Eventually we'll get them on the same mix just to make life easier.

The boys will have a myriad of doctors and staff in their lives for the next few months at least:  pulmonologist for William, dietitian for Aaron, pediatric urologist for both (they'll get circumcised within the next 5 weeks), pediatric opthamologist for both, neurologist, their regular pediatrician, early interventionist, physical therapist, probably occupational therapist, home health nurse...I'm actually not sure if that covers everyone?  We have a ton of appointments to schedule!  We may also have access through our insurance to a nurse who would come to the house all day to assist.  I'm not quite sure how this would work yet, but we would try it out.  It could allow us to get a bit more sleep and stay more sane, which is probably important :)

We had pictures taken by the hospital picture company today - I am impressed.  With Anna, the practice was to put the baby in the little plastic box crib with a pink or blue piece of paper as a background, stick them under a mug shot camera, and snap a few pictures.  Bella Baby is completely you can see if you look here:
View Photos - After September 1st
Password:  kjen0627conley

I'm really happy how the pictures turned out, especially given that we had two uncooperative kids (not Aaron...he was completely alert and content!)

I believe the post covers the major highlights of the past two days.  Please keep us in your prayers tomorrow for a smooth homecoming!

We are so ready!

Thanks again for all of the love and support we have received throughout this journey. I will keep this blog updated with progress on the boys.  My goal is to also add in more preemie resource links and info, in case it helps anyone who may stumble across this blog in a similar situation. 

They're coming home!

Monday, September 26, 2011

Big Day Tomorrow...

Maybe.  We are currently scheduled to room in with Aaron tomorrow night, with the goal that he comes home on Wednesday.  William is ready to come home, but any treatment for his ROP would need to be done in the hospital, and his eyes won't be checked again until Friday.  Because of this, he will be in the NICU until at least Friday, depending on when the retinal specialist can come if treatment is needed.

William's need for oxygen appears to have decreased.  At one point today, the doctor of the week agreed to use the upcoming several days to see if he can be weaned down or off of the cannula.  However, the doctor coming on tomorrow believes that if a baby needs the cannula, he needs it full time, as the oxygen helps with growth.  So, that plan may be squashed, although tomorrow I will re-discuss with the new doctor of the week.  I'm not against that response; however, I'm still not a fan of the differences in opinion.  I also asked what would happen if the eye appointment on Friday shows no progression or regression - would he need to stay ANOTHER week just to wait for an eye appointment?  The doctor couldn't answer, since it wasn't happening under her watch.  At that point, I was done asking questions that could receive no answers.  My goal is to get both of them out of there within the week, so that we don't have to go through another doctor rotation. The lack of consistency is incredibly frustrating.

In good news, we should only need to room in (stay the night) with Aaron, so that one of us isn't left alone overnight with him in order to come back and room in with William.  This decision was agreed upon with the doctor from this week, so hopefully the next one agrees.  Also, Aaron should be weaned off of his extra special vitamins and onto the same ones used by William, so that feeding can be a little more consistent.  William will be able to receive just fortified breast milk when he comes home, but Aaron will still need alternating preemie formula until he proves his ability to gain and maintain his weight. 

Ultimately, the boys are receiving great care from the nurses and are healthy, which is great.  We're so happy and thankful that they've come so far from where they started.  I dislike feeling frustrated and saying anything negative when, at the end of the day, we really should just feel blessed to be where we are.  And we are blessed.  And they are super, super cute :)

Aaron & William


Look Mom, No Cannula!

Bathtime smiles


Almost naked baby!
Peaceful slumbers

Friday, September 23, 2011

Friday Cheers Take ...I've lost count

Weight Check
William - 5lbs 9oz
Aaron - 5lbs 2oz

The boys took a few small steps closer to home today.  Aaron passed his hearing test - we weren't worried about this.  The eye doctor came back, and his eyes are still beautiful.  William's ROP has progressed (bad) a bit, but is still not to the point of needing intervention.  He will be rechecked in one week instead of two in case it progresses more and rapidly.  If treatment is needed, we are hoping that it can be done as an outpatient service, so that he 1) does not need to stay in the NICU just for another eye doctor appointment and 2) does not need to be readmitted to the hospital for treatment. We shall see.

The pediatrician also visited today to start getting the lay of the land with the chicos.  This particular doctor started out as a neonatalogist, so we feel comfortable the boys will be in good hands with her.  Our pediatrician's office is a large group, though, so there's a good chance we won't be able to see her every visit. 

William will be coming home on oxygen.  The doctor was supposed to reevaluate him today, after his eye appointment, to determine if he will need the oxygen full time or only during feeds.  Because his ROP is still in question, they will wait to reevaluate until after the next eye doctor appointment.  High concentrations of oxygen have been shown to lead to ROP, but apparently major changes in oxygen saturations can also worsen it.  I believe the doctor is afraid that without assistance, William's sats will drop a lot.  His sats were at 100% for a good part of today, even on the lowest settings for the oxygen coming through the cannula, so I still question the need for the cannula and will talk to the nurse more about it tomorrow.  It's not that I don't want him to come home on oxygen - if he needs it, he needs it, but I'd like for his needs to be assessed before we're home and off of the detailed monitors that would help make the decisions.

We are definitely ready for the boys to come home.  This week has been rough because we thought they were coming home this weekend.  At the earliest, our new tentative goal is Wednesday of next week....that date is up to the boys though.  If their needs change, or they aren't gaining weight appropriately, the date could move again.  I'm over being upset about the delay...I want to enjoy the time that I have with the boys while I'm at the hospital, which is impossible if I'm bitter or disappointed.  So I'm choosing to be happy about their progress and we'll get them home soon, and healthy!



Wednesday, September 21, 2011

38 Weeks

The boys are 38 weeks gestational age today...two weeks from their due date :)

William and Aaron both had a good day.  They are eating, sleeping, and acting like healthy little babies.  I was able to talk to the doctors today and express my thoughts regarding yesterday's delay in homecoming.  It didn't help my cause, though, and only added to the frustration.  We just need to keep breathing and remind ourselves that they WILL be home soon...

False Hope

William and Aaron had a good day today.  Aaron gained a good deal of weight last night, and is now just slightly under 5lbs!  All of his bloodwork related to his liver is trending better.  William is still on the cannula, but otherwise growing and feeding.  They've overcome so much in the past 12 weeks - I'm proud of the little guys!

So...homecoming...when I arrived today, I chatted with the nurse about homecoming plans for this weekend.  Aaron was still on track to come home Friday or Saturday, as expected, but William could be delayed or two due to the oxygen.  They need to figure out if a higher dose of caffeine helps him breathe without the assistance, or if he just needs it for feeds.  I understand that this needs to be straightened out before he comes home, but his nurse and I were thinking that perhaps they could both still come home on Saturday, and were trying to figure out the best timing for rooming in, pictures, carseat test, etc.

The nurse discussed the options with the doctor of the week.  New week = new doctor.  Actually, there's a brand spanking new, straight out of med school doctor this week.  Someone who doesn't know the boys at all, although she is being assisted by one of the other regular doctors.  The result of that conversation was - surprise - Aaron's weight gain isn't enough to get him home Friday or Saturday.  His chart shows that he is gaining weight steadily since switching to the extra vitamins and calories last week, and the doctor last week was perfectly fine with him going home with even the slightly lower curve from a few days ago.  We have grown a bit tired of the different opinions from different doctors, which is ultimately impeding the boys' progress and getting them home.  The doctors this week will not commit to any time for the boys to come home, and wouldn't say how much they think they will be delayed, be it a few days or a week.  Thankfully our nurse was able to ask the doctor questions for me, as I was a bit too upset to speak.

Ultimately, everything is fine and the boys will still be home soon.  I think we've handled the past few months fairly well, and remained sane and have done what we've needed to do to give the boys as much love and support as possible to get them home in good shape.  Handling this, however, has required a bit of suppression of emotions for me.  Now that we're getting closer and closer, those emotions are starting to bubble up and I've allowed myself to start fully experiencing the joys of getting them home...started to blow up the balloon...and today just deflated it.  The brand new doctor actually told me, for Aaron, that she wanted him to be in the safest place possible and didn't want us to need to coordinate scheduling pediatrician visits every couple of days to watch his weight gain.  Excuse me...we are perfectly capable of scheduling doctors' visits.  It's part of parenthood.  We are perfectly capable parents. I may give her feedback tomorrow on the wording of her excuse for keeping him there longer.

Obviously, I need a dose of positivity and need to get back to a state of inner peace with everything that is going on.  There's a state of tension right now waiting for the homecoming..the dangling carrot that keeps getting pulled away.  This post turned into more about ME than about the boys, which is not my intent of this blog :)  The boys are great. They are getting BIG and they have the best smiles and they are NOISY little guys, grunting and groaning all day :)  They'll still be home (at an undefined) soon!

Monday, September 19, 2011

12 Weeks!

The boys are 12 weeks old today! 

The retinal specialist came back today for Aaron's follow-up.  Everything that I had read regarding Avastin called it a miracle drug...and it is living up to its reputation.  Aaron's ROP is GONE.  Vanished.  He has a clean slate with his eyes.  His eyes have gone back to the immature state - until they are matured within the next few weeks, they could develop ROP again, but he is almost past the peak period.  So thankful for this outcome!

William was having a rough day today, though.  He is apparently very gassy, or perhaps having a lot of reflux..I spent about 3/4 of my visit today just holding him and trying to calm him down.  He also kept desating, so he's back on the nasal cannula :(  Hopefully it's just for the day...we were so close to getting him home without oxygen.  We'll do whatever he needs, of course, but it would be nice to not have that attachment, and hopefully this doesn't hold him back.

Almost there, almost there!

We are getting so close!  I'm keeping myself from becoming too excited at the moment, in case something happens, but all signs point toward the boys being HOME by the end of the week (probably Friday, but potentially Saturday).  We took Anna to Build-A-Bear yesterday to make her brothers cuddly bears for their homecoming.  We had made her a bunny at Kamp Kreatures before she was born, which is now closed, and wanted to keep the tradition somehow.  The animals were more customizable at Kamp Kreatures, but these bears are still just as lovey :)  Reality started to set in while we were there...the lady stuffing the bears may have wondered why I was starting to get choked up and fighting back tears while watching her work. 

We had an opportunity to speak with the neurologist today.  He is hard to pin down in the NICU, but made time for us today - and I'm glad he did.  Stephen had seen Aaron's head ultrasounds before, but I had not.  There is a definite difference between his and William's, and you can easily see where the damage is done.  This has been our biggest concern with the boys' progress going forward.  The doctor was not concerned with William's small area of injury, and was actually not too concerned about Aaron's larger area of encephalomalacia either, or his enlarged ventricles.  He said that based on the specific area of damage, any negative long term effect would probably be in the form of lack of coordination or left-hand/arm weakness (not leg, as the NICU doctor had said).  This is SUCH good news - it could have been much worse. Only time will tell for sure, of course, but we'll be able to breathe easier with that professional assessment.

Please keep the boys in your prayers to help get them home this week!

To respond to a few of the comments: The boys are fraternal :)  We don't need anything that I can think of at the moment unless anyone really just enjoys mopping? :)  I would respond to all of the comments that people leave, except that every time I try I get a message saying that I'm not allowed to do so, and need to log in as a different user :(  I do, however, read everything!

Friday, September 16, 2011

Tentative Homecoming Set!

Weight Check
William - 5lb 3oz
Aaron - 4lb 8oz

I'm almost hesitant to say anything, for fear that something else will change within the next week.  However, at the moment both boys are on track to be home next Friday or Saturday.  Yes, they should be coming home together!  William will be weaned off of the extra calories used to fortify his breast milk this week, and Aaron will need to continue to show weight gain as well as continually improved liver functioning.  Yay!  Please keep praying for them! 


William the chunky monk

Aaron the little man

Aaron & William


Wednesday, September 14, 2011

37 Weeks

The boys are 37 weeks gestational age today.  Both are now in open cribs and doing all of the normal baby things (eating, sleeping, pooping) just fine!  Both are baby noise machines - they grunt and stretch and groan and's fun to hear!  Not much new today - we're trying to find a pediatric opthamologist closer to our house, as the one used by the hospital is in Stony Point, which is an hour from us.  Homecoming is getting closer - William could be as early as the middle of next week, according to our nurse.  Unfortunately the doctor of the week is noncommittal to even really talking about homecoming.  Her first comment when I asked a question about William coming home next week was to tell me that his homecoming isn't set, it all depends...I wanted to growl at her.  Yes, growl.  Be positive with me for once!  I usually don't give feedback on the hospital staff as it's rude, but for the sake of honesty as to how I'm feeling at the moment, based on prior experience I wish we had a different doctor this week as more progress could be made.   That said, the boys don't care who the doctor is and if they're ready they'll let everyone know :)  William is definitely ready.  Aaron's bloodwork and weight still need to improve, but we're close.  Close, close, close :)

Tuesday, September 13, 2011

Moving forward

Weight Check
William - 5lbs 1oz (yes, FIVE pounds!)
Aaron - 4lbs 7oz

Another good day for the boys :)  Aaron decided that he is ready to be out of the isolette again - he was warm this morning, so the nurse put him in the open crib, and he's maintaining his temperature fine so far.  (Babies stay in the plastic warming box - the isolette - until they're able to maintain their own temperature, at which point they can be moved to just an open box).  William is still in the isolette, but the plan is to have him out by the end of the week.  William was actually the only one mentioned in that plan, as Aaron was going to stay in it until his weight gain increased...he must have overheard and decided he'd just break himself out if no one else was going to do it :)  My plan is to sneak William into Aaron's open crib when I leave tomorrow and see if the nurse will let them hang out together for a little while.  It will be good for them! I put them in together today for a second, but then the chunky monkey decided he was still hungry so I had to get him back out.  We're getting there!

Monday, September 12, 2011

11 Weeks!

The boys had big days for their 11th week.  The MRI results did come back today...big sigh of relief there.  The MRI gives a much better picture of the brain than the ultrasounds that they have already had, and I have been fearful that it would pick up something not already found in the ultrasounds.  Aaron's showed nothing new - he does have a cyst at the top of his right ventricle, and the ventricles are still enlarged.  We've already come to terms with this, and we know that preemie brains are incredibly plastic and can rewire (and if he's what, really, he'll be fine).  His bleeding has resolved, so we expect no additional damage. 

William's MRI did reveal a cyst unknown to us - in the same location as Aaron's, but smaller.  His ventricles have returned to normal sizes.  Again, we're not upset over this finding, and if he's going to have one, I'm glad it's in the same place as Aaron's.  I know it's not GOOD news to find out about brain cysts, but seriously, this is a huge weight off of my shoulders.  We know what we're dealing with now, and in the grand scheme of things it's really not that bad.  They will have early intervention with physical therapy and occupational therapy, and will get all of the assistance they need to hopefully overcome this obstacle. 

In great news for the day, William has moved off of his cannula and is breathing on his own.  This was a welcome surprise yesterday, and I'm so glad it's working out for the chunky monkey.

Aaron's liver functioning is trending for the better, but his alk phos levels are high again.  This can be due to lack of vitamins like Vitamin D.  In order to help bring these levels down, and potentially help with weight gain, he is moving to 3 feedings a day of a special extra-extra calorie preemie formula.  I'm completely pro breastmilk, but will make sure he gets whatever he needs to be healthy.  If it's formula, so be it.  We already knew both would be coming home on two formula feeds a day for the extra vitamins. 

We do not have firm homecoming dates, and everything is subject to change, but it's looking like William wants to be home within the next week to two weeks.  It may be a good idea to keep him there through his next eye exam, which would be at the end of next week, as chances are his ROP will worsen like Aaron's did.  He is currently stage 2, which requires no treatment.  They like to keep up with each other, though.  Aaron, who was originally aiming to be home around today, will be hanging out for probably another two weeks, as he gets his weight gaining in gear.  (I may start bringing him protein shakes!)  Both need to transition back to the open bed and be able to sleep on their backs a bit better.

Thank you for all of the prayers for today - I'm sure they helped!


Before moving on to the boys, I'd like to take a second to reflect back to 10 years ago today.  I was in Spain at the time studying, and even overseas it was terror and chaos and sadness.  Our thoughts and prayers are with all of the firefighters, families, survivors, victims...everyone who was affected by the unthoughtof events.

Weight Check
William - 4lbs 13.8oz
Aaron - 4lbs 4.6oz

I will eventually get a more detailed update in when I have more time to sit down and type :)  I've been in nesting mode this weekend, trying to get things put away for the eventual homecoming.

Speaking of homecoming...I feel like it's getting closer again but am very cautiously optimistic.

I walked in to the NICU this morning to find William like this:
I'm not sure if you can tell from the picture, but his cannula is on top of his nose.  Not an effective use of it :)  Our nurse had it out on purpose, though - he had pulled it out by himself, and maintained his sats, so she was testing him without it.  It could happen...he could come home without oxygen!  The caffeine seems to have done the trick.  I'm saying my prayers and crossing every finger and toe.  I had already settled in my head that he'd be coming home on oxygen, so I'm still okay if it happens; my main concern is that his apnea/brady episodes stop, and everything is positive right now.  We may be taking him to Starbucks every morning until he's 5 though :) William is pretty much begging us to come home soon; he's doing really well.

Aaron's bilirubin levels and other liver functioning will be tested tonight.  Prayers for improvement, please!  He is starting to gain weight again, which is good.  He is taking a few drops of oil before each feed, which helps to gain fat, and is on special extra loaded vitamins (which he promptly spits up). 

MRIs are tomorrow, and we should find out the results on Tuesday.  This event makes me nervous/borderline freaked out.  I want to know what type of damage we're dealing with, especially with Aaron, and want to hope that it's not much, but I know they'll be perfect and wonderful no matter what.  Major prayer requests on this one please - pray that the bleeding has resolved with little additional damage and that any tissue that it has taken with it will be compensated by other areas.

And not to leave out little brother, here's Aaron today:

Saturday, September 10, 2011


Surprise...the retinal specialist came today for Aaron's consultation, instead of Monday.  He did confirm the pediatric opthamologist's diagnosis, and recommended happen today.  We opted to do the newer treatment of Avastin, which is an injection into the eye, instead of the standard laser surgery.  It went well, and he will have a follow up visit weekly for a while.  Hopefully one dose corrects the issue, but (as with everything else these days), we will need to wait and see.  He did cry during the whole procedure, but promptly fell asleep while I was holding him afterwards.  He was fairly lethargic for the next few hours but has perked back up and is eating fine now.  Poor little guy... he'll get lots of extra love the next few days. 

William had a good day.  I feel like the caffeine is helping him, as his sats have barely dipped the past few days.  He's still eating like a champ...he's a hungry chunky monkey! :)

Friday, September 9, 2011

Enough Already

I'm going to keep this post short because I need to hop into bed and sleep for 12 hours (wouldn't that be nice!)...but there is a new development today.

First, William is again being a superstar and eating like a champ.  So proud of the big guy...who will eventually eat us out of our house, I'm sure.  Aaron will get there, too.  He's eating well from the bottle, I'd just like to get him a little more attached to me, and would like for him to gain more weight :)

Second, follow-up eye exams were today.  William's retinas are still not completely mature, and the slight ROP that he does have should regress on its own.  This could change in two weeks, but we'll deal with that when we get there.  Aaron's Stage 1 ROP has progressed (and in this case, progress is not good) to Stage 3 with mild Plus disease.  He will be reevaluated by a retinal specialist on Monday to determine if surgery is needed, as it usually is at this point.  The two options would be laser surgery, which is more invasive and has a longer recovery time, or a newer injectable drug.  If he does need intervention, I am hopeful that the drug is appropriate for him, as our NICU friends had a positive, encouraging experience with it and is recovering nicely.  I was upset about this when first told, but we still need to talk to the specialist, and it is something that is thankfully treatable. 

Goodnight!  I'm going to dream of the day when I walk into the NICU and they tell me that there's nothing negative to report and that the boys are just feeding and growing until they can come home.

Thursday, September 8, 2011

A Good Day

The boys had a good day today.  William is still on an antibiotic for now, until his blood cultures show no infections for several days (so far, nothing has been found).  He is on caffeine again, with the thought that it may help his apnea/brady episodes.  We shall see.  I'm not sure if any drug will fix it at this point, or if he's like Anna and will do things when he wants to, no matter what we potty training.  Speaking of which, big sis is making huge progress!  I don't want to jinx it, but she used the potty all day today without an accident.  Yay!