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!


Wednesday, September 7, 2011

One Step Forward...

Two steps back.  That's what I'm feeling these days.  Aaron was supposed to be ready to come home at the end of this week, now he's not...William will be ready as soon as his apnea spells end, but there's no end in sight.

This morning started out rough with a call from the nurse that William had not one, not a couple, but EIGHT significant spells last night.  They stopped his feeds for the day and took blood cultures to test for infection, suspecting a UTI.  So far, everything is negative.  The rest of his day has been good, though.  I had just talked to the doctor yesterday about what we needed to do to wean his oxygen down to send him home soon (on oxygen and the apnea monitor), but this is going to hold him back a bit.  He can't come home and just stop breathing.  He is where he needs to be right now, and they are taking great care of him, I just wish he would get better.  He will outgrow the apnea - it's just a matter of when.  I did appreciate that the nurse called us tonight when her shift ended to let us know that she had restarted his feeds, and that the rest of his day was uneventful.  The chunky monkey needs to eat :)

Aaron's bloodwork related to his liver is looking better so far.  He is on extra vitamins and oil to help gain weight better, which seems to be helping.  A few days ago, it looked like the boys would be coming home together soon.  Now, I again think that Aaron is going to come home first, but I'm not sure when.  As we've learned, this could change.  For my own sanity, I need to stop thinking about homecoming until it's real.  I've had my hopes up for a bit, with good reason, that they'd be home a few weeks earlier than their due date.  I need to go back to the one day at a time mentality and appreciate the daily gains.  They'll be home when they're supposed to be home.

Sleeping Baby Pictures



Aaron & William


Aaron  & William

Big Sister!

Tuesday, September 6, 2011

Insert title here

Today was a good day for both of the boys.  Aaron's liver is stable, and the vitamin K shot seems to have helped his clotting ability.  William's oxygen levels are being weaned down to decrease the amount of flow and get him to the point where he can come home with an oxygen tank.  The last doctor had taken him off of the Prevacid, but this one is putting him back on it because of his spells yesterday.  His apnea spells are likely due to reflux, and the medicince should help to manage the associated pain.  He also passed his hearing test today.  Aaron will be tested when he is back out of the isolette.  We're not worried about Aaron's hearing, as he startles easily to any noise.

Today was a good day for mommy as well.  I stayed late at the hospital this evening in order to have more time with the boys, as the visitations over the holiday weekend felt rushed.  It's nice to see them in a more awake state - they're usually in full nap mode for the afternoon feeds while I'm there.  They're starting to make more and more little baby noises, which is also fun.  I know I need to post more pictures, I'll work on that tomorrow :)

Monday, September 5, 2011

10 Weeks!

Weight Check
William - 4lbs 6.8 oz
Aaron - 4lbs (Finally!)

We're starting to get a bit antsy to get the boys home. William's spells continue, but are decreasing...hopefully they will decrease to a complete stop SOON. Aaron's liver functioning is still in question, and his weight gain has plateaued...hopefully he gets it back together SOON. We can see the light at the end of the tunnel but just can't get there fast enough.

Aaron's liver issues are likely attributable to the CMV virus. The virus will run its course and usually shows no symptoms for healthy individuals. He received a shot of vitamin K yesterday to see if his decreased clotting ability was due to decreased liver functioning or lack of vitamin K - we don't know the results yet, but hope it was just a vitamin deficiency. His potassium levels were up today, which is a good sign. There's no proven treatment for the CMV virus, but he would be treated with an antiviral IV drug if his liver functioning gets to a certain point (We're NOT at this point, and hopefully won't get there). The drug is a 6 week IV course - I was afraid at first that he would need to stay in the hospital for this, but the doctor said it should not change his discharge date (whenever that may be). He would be able to come home with an IV, and a home care nurse would visit to change/check it.

William's liver functioning is getting better, but the doctor is still trying to figure out what's causing his issues if he doesn't have the CMV virus like Aaron. This is where we strongly disagree with the doctors. I've expressed my concern but apparently don't have any power over this. In our opinion, they just need to retest him for the virus - it's a simple urine test. He could have it but not have shed any in his urine for the last test. If Aaron has it and they're showing similar symptoms at the same time, it's highly likely that William has it too. Instead, they are poking and pricking him for more and more blood in order to test for every virus/disease under the sun that would impact the liver - conditions that would have to come from me, or from the blood transfusions. I KNOW I don't have any of it, and the likelihood that he'd get them from well screened blood is less than minimal. If these tests turn out negative, and they will, THEN they'll go back and re-test him for CMV. Completely backwards. We're also not super happy that they had been pushing his testicles back up and out of the scrotum for a month. Poor little guy :(

So, while we know they're getting great care at the hospital...they'll get better care with us. They really just need love right now. Please keep the prayers up for both of them to be healthy enough to come home soon!

Saturday, September 3, 2011

A Few Changes

Today has been a mixed bag of news.

In the good/funny news for the day, William does NOT have bilateral inguinal hernias.  The doctors and nurses have been checking him every day to make sure the "hernias" were able to be pushed back out of the scrotum.  Surgery was scheduled yesterday for next Friday, and the surgeon came out today to examine him.  He does have hydroceles, which are accumulations of fluid that they say will go away on their own.  He does not, however, have intestines pushing out of those openings. So what have they been "reducing" every day, you may ask?  His testicles.  Final diagnosis?  Our boy has balls... no surgery needed.

Both boys latched and ate from me today, which was excellent. All of the practicing is paying off!  In the past two days, it's like the lights just came on. 

William has been exceeding expectations within the past week, passing his trial for feeding tube removal and for being in the open bed.  Aaron, though, is now not gaining weight at the rate they'd like to see.  Both boys still have enlarged livers, so the doctor has ordered a few more tests tomorrow to make sure that it's due to the CMV virus and nothing else.  The doctor is also now saying that the tests have changed, and the positive result is definitely positive, but William may still have it although testing negative.

There were a few more details from today that I can't think of right now, but that's the gist of it.  Aaron's progress is slowing down a bit, and William's is increasing, so the updated time frame for them to come home is in 2 weeks - together!

Friday, September 2, 2011

Day 67... I think

Weight Check
William - 4lbs 5oz
Aaron - 3lb 15oz

I have no good concept of time or days these days.  Even though I've been back at work for a few weeks, I believe if I didn't have to write the date on my milk bottles, I'd still be stuck in June.  Time is flying, which is good right now.

The boys are still doing well - almost smooth sailing.  Both boys had inflamed livers last week, and the treatment was to increase feeds.  William's is now better, but Aaron's is still slightly inflamed.  There's no known cause or issue as he's doing well otherwise, so hopefully it will correct itself. 

Until yesterday, they had been living in enclosed, temperature controlled isolettes.  They were put into open beds (basically just the bottom half of a clear plastic box) as a trial, to see if they could keep their body temperatures high enough on their own.  William, our chunky monkey, is currently still in his open bed, but our little guy has been moved back to the isolette. He should move back to the open bed soon, as he's still on track to come home within the next week and a half.

Both boys are taking their feeds wonderfully from the bottle.  William's feeding tube removal was supposed to just be a trial, as the nurse wasn't sure if he'd be able to handle it given his apnea spells - no need for doubt with him!  He ate his max allowed yesterday and today...he latched onto me!  We've been "practicing" breastfeeding for a few weeks, and both boys are interested when awake, but neither had fully latched on for more than a minute or so during a session.  I'm proud of him!  He did, however, have another significant apnea spell today after a several day break.  He also had a smaller, but still significant, spell this afternoon while I was there.  These spells are super tough to watch, but he'll get there.  Also, his hernia surgery is scheduled for next Friday, the 9th.  He will need to be intubated again for the surgery, but should be back on his nasal cannula by that evening.

I believe that catches me up on everything from yesterday and today :)