Saturday, July 30, 2011

More Face Time

Another good day for the boys!  We did kangaroo holds with both, and then Stephen held Aaron just swaddled while I gave William a good wipe down in his isolette.  I then swaddled and held William for a bit.  The nurse today suggested that when we have time for both of us to hold both boys, to do one hold with the skin to skin contact, which is so good for the baby, and the other just swaddled so we can get to look at them.  I like this idea...why didn't I think of it? :)  It's awesome to just hold them and look at them.  William was more awake and alert today, so it was a good day to bathe and hold him.  He was much calmer today.

The big news for the day is that we should be able to hold both at once, by one person, within the next week!  It's easier to do this swaddled than kangaroo, but that's fine as we'll be able to see both of them while we hold.  This will be really good on days when Stephen and I are both working, and my time to hold is shorter (I go back to work part-time for now on the 8th).  I'd love to sit with both of them at once for a good few hours.  Yay!

I will post more has been a good day and I could add a few details, but mommy and daddy need sleep!

Friday, July 29, 2011

Friday Cheers (yet again)

Short update today - Both boys had good cuddle time!  William is back on the nasal cannula, and doing very well on it.  We should get to bathe him tomorrow.  He needs a good wipe down!  No big news for Aaron today, but he had a great day.

Right now, Aaron seems to tolerate pretty much everything better than William.  He's very alert and takes everything in, and responds very well to soothing touches.  William also responds well, but needs a slower approach.  His heart rate gets a bit higher when he's stressed.  He also keeps his eyes closed more than his brother, which may or may not be attributable to the fact that his isolette receives more bright light from the window.  Both will quickly let you know when they're not happy, though, with a good little cry.  The cries are sounding less like kitten meows and more like real baby cries now, which I'm surprisingly happy to hear. 

Aaron did get some "play time" with nursing, after I pumped so that he wouldn't actually get anything out.  He tried!  I believe he needs to grow just a bit before he'll be successful at it.  Hopefully William will be following suit shortly.

Close up of William, since the big guy hasn't had much face time:

Stephen and Aaron yesterday:

Thursday, July 28, 2011


I had a great visit with the boys today.  Stephen stayed home to spend some quality time with Anna, and had a daddy/daughter date to see Winnie the Pooh :)

I held William last, but I'll start with his update.  He is still slightly behind Aaron in the respiratory arena, but the big boy is our eating champ.  The doctor approached our primary nurse today to discuss moving him onto the nasal cannula.  While it would be a great step forward, and would allow us to see his beautiful face better, I don't think he's ready yet.  It was good for me, as a parent, that the nurse echoed my opinion.  It made me feel a bit more like I know what I'm doing here.  He did have a better kangaroo hold today than yesterday, with few drops in his sats, so we'll see how tomorrow is going and perhaps switch him either tomorrow or Saturday.  Also, he is also really loving his paci!  His nurse yesterday altered his to work better with the CPAP, and he is really enjoying it.

William is now digesting all of his food.  Before each new feeding, the contents of their tummies are gently pulled out with a syringe through their feeding tube, to check for residuals.  If nothing is left, their food is being digested.  If food remains, it will either be re-fed to them, or tossed out to begin a new feeding.  William's digestive system appears to be back up and running since the surgery... he is also having good bowel movements, which helps.  I suppose one positive aspect of the NICU is that we don't change most of their diapers :)  He and Aaron are both moving up from 4 to 6ccs of milk today.  They were both past this point prior to their PDA ligations, but they have to build back up gradually.

Aaron is still having residuals, but it's not uncommon.  He is getting suppositories to assist with his bowel movements (poor guy).  Once those are more frequent, he should be able to digest better.  He and William are both having some reflux, which is fairly common with preemies.  Stephen was the first recipient of Aaron spit up during his holding time yesterday.  I'll let him have those firsts :)

Highlight of the day

Aaron had an excellent hold today, followed by a bath.  I LOVE BATH TIME!  This was my second time bathing him (we have not been allowed to bathe William yet).  Everything is removed except for his nasal cannula and PICC line.  The removal of the 3 leads and temperature probe makes a big difference in holding him without feeling restricted or unnatural.  He goes into the warm bath swaddled, slowly, starting with his feet and lowered gently until most of his body is covered.  The swaddle helps to keep him warm and more comfortable, and is lifted away in sections to wash him.  He stayed calm the entire time and enjoyed the moment.

After drying him off, he was re-swaddled, still without the leads, and I held him while waiting for his nurse to get the isolette ready.  Since the week after his birth, we've held him almost every day, by taking him and his accompanying myriad of wires awkwardly out of the bed, and holding him right to our chests.  The kangaroo hold is awesome, and the skin to skin contact is incredibly beneficial for them, but we can't really look at them in this position.  It's been over a month, and this was my first time actually cradling either of them in my arms and looking down at his little face, alert and wide-eyed, staring back at me.  Such an amazing feeling.  And then he opened his tiny mouth as if he was about to yawn, turned his head to the right, and started trying to find his food through my clothes!  He's sooo tiny, I didn't know if the rooting reflex would be in place yet.  Stephen seemed to think this was funny, but I think only a mom can truly appreciate the emotional effect of their baby trying (even in vain) to eat for the first time.  We'll let him practice some tomorrow after I pump, as he's not ready yet for the real thing, but I'm really hopeful that both boys will latch on quickly when the time comes. 

One day at a time ... I'm thankful to have more good days than bad, and let's pray for more days like today :)

Wednesday, July 27, 2011

Happy One Month!

Can you believe it's been one whole month already?  The boys have endured so much in their first month, and we are happy to have it behind us.  At the same time, we're blessed to have experienced it and have them with us, and truly experience the kindness and generosity of everyone around us with your support and love.

Cuddle time went really well today for Aaron.  He settled right down with daddy and had a good, peaceful hold.  William's cuddle time was a bit more stressful for him, with constant desats.  He still needs to work on the whole little breathing thing.  William is digesting his food better than Aaron, though, and is going up again with his feeds.  They'll both get there :)

1 Month Pictures

My friend gave us these super cute tie stickers, which you are supposed to stick to a onesie each month.  It will be fun to see how much they grow in comparison.  We can't have onesies yet, but we made them work :)

He did not enjoy the photo op, look at his scrunched up face!

Not quite as photo shy as his brother :)

Another Day Down

Weight Check

Drum roll please...
     Aaron:  2lb 3oz
     William:  2lb 11oz - our big boy!

General Update

Let's days run together so much, I have to look back at the post from the prior day to remember what's new.

William was weaned off of the ventilator and on to CPAP, and is starting to get settled.  It's taking him a little longer than Aaron, but he also has a lot of mucous to work out from being on the ventilator.

Both boys are on 2ccs of milk at each feeding, which could be increased tomorrow or the Thursday.  Both have been weaned from their pain medicines.

I asked again today if there was any chance in getting them moved back to MRMC - the response was a little better this time.  It's highly unlikely that the bleeds will worsen after a few stable ultrasounds, so the chance that they will need shunts or any type of neurosurgery is slim (yay!).  Once they are established on feeds and ensure that they will not develop NEC, they could actually move to the hospital closer to home and work.  This would still be a month or so down the road, but that's better than never!

I can't wait for both boys to be on the cannula, or not on any oxygen...not necessarily because it means they are breathing better, but so that I can see both of their faces!  Aaron was so adorable today.  He was working really hard to suck on the pacifier, then would decide for a second that he didn't know if he liked it, and his face would scrunch up...then he'd try again.  Really cute!


Here are the pictures promised from yesterday:

Aaron with his paci

Aaron on the nasal cannula

William (from last week), with CPAP off

A few from today:

William back on CPAP, scrunchy face

Aaron, all cozy

Aaron sucking his thumb!

Tuesday, July 26, 2011

Happy 4 Weeks!

It's hard to believe that four weeks have passed already - the boys will be one month old on Wednesday!

Today went well.  To make up for some lost cuddle time, I was able to hold William for about 2.5 hours this morning/afternoon.  Aside from certain body parts falling asleep, it was excellent!  Aaron also received some hugs this afternoon, and responded very well. 

Aaron is back on the nasal cannula now, which is a good step forward.  (I think this happened days are starting to run together!).  William should be extubated within the next two days, but probably back to CPAP.  CPAP would still be good progress, as we do not want them on the ventilator longer than needed.  I do, however, prefer the cannula because their faces aren't hidden.  Both boys are being weaned from the pain medicines, and both are starting back on small amounts of breast milk today.  Their digestive systems are slow at the moment due to the surgery, so the feeds will increase as the systems gets going.

The big checks for today were the head ultrasounds - both came back unchanged, which is good. We know it may take the bleeds a while to reabsorb, so our prayers are that they don't get worse and that the ventricles do not enlarge.  They will both get MRIs at some point before they are released, which will give us a better idea of any actual damage, although nothing but time will tell how it has affected them.

Physical therapy should be coming to visit the boys starting this week (which reminds me that I need to tell Stephen this, so that he hears it from me and not the blog!).  The nurses do a great job of keeping them positioned well so that muscles don't get too tight and too used to staying in the same positions, but physical therapy will be the best assistance.  We'll learn little exercises to do with them and other little tips like how to put on the diapers so that they fit better and keep their hips from turning out.  Hopefully they will tolerate the therapy, as the earlier we can get started, the better.

Lastly for the day - pictures.  The pictures of Aaron are from today, with his cannula in.  The picture of William is from last week, which I hadn't uploaded yet, but gives a good view of his face :)
(Update - I waited 30 minutes for the pictures to upload, with no success.  I will try again tomorrow!)

Sunday, July 24, 2011

Continued Recovery

This will be a short update :)

Today was a repeat of yesterday, with the addition of holding Aaron.  I think the nurse would have let me hold him for 3 hours straight if I wanted to, but my friend the pump doesn't allow that :).  Aaron is now off of his antibiotic, and should be off of the ventilator by tomorrow night!  His nose is starting to heal, and looks much better than it did several days ago.  William had a good day as well, but was not ready for any cuddle time yet as he needs to adjust to being back on the regular ventilator.   Hopefully both will start getting small feeds within the next day or two. 

It was an uneventful day for the boys, which is always good.  We want to get them to the point where they're just feeding and growing.  We do expect that there will be additional battles in this journey, so let's celebrate the uneventful days.  The biggest threat to while they're in the NICU is infection, so we'll continue to be on the lookout in order to catch anything early.

Head ultrasounds are scheduled for tomorrow - please pray that they are still stable!

Now that most of the initial shock of their early delivery has worn off, and we're into a good routine...I'm ready to be done with it and have them home.  I know we're in this for a long while, but I miss them and it's all starting to feel more REAL.  I want to be the one changing their diapers, giving them baths, turning them over, taking their temperatures, even checking their blood gases...but I still know they're where they need to be and we'll get there.

Saturday, July 23, 2011


The boys had peaceful, restful days today, with a good visit from Anna, my parents, and me.  This was Grandpa's first visit!  The ventilator settings are steadily being weaned down for each of them, with the goal to move William back to the regular ventilator soon and Aaron back to CPAP or the cannula.  (If, like me, you want to quantify "soon"...there's no exact timeline as it depends on the boys.  "Soon" could be within the next day or next week. I always ask for definitions of the vague time terms and receive the same depends on the boys).  Cuddle time is still on hold, but we do get to sit with our hands in the isolette to provide boundaries, which they like.  Other than that, nothing new today, which is good.

We have the best nurses - William's nurse today put a note on his diaper, which I saw when I looked at him in the videocam earlier.  Super, super cute!  I'm not sure how clear the screen shot will be, but the note says "Hi Mommy and Daddy, I have had a great day! Love, William"

I seriously need more pictures of Aaron - I think the lighting is different in his isolette, as the pictures are usually fuzzy.  That will be the goal for tomorrow!

To tide people over until his next picture, here's a cute one of Anna and my dad.  They went fishing in the yard today and caught a pair of shoes!

Friday, July 22, 2011

Successful Surgery #2

What a week - we went from a beautiful, healthy, Sunday to a quick round infection, breathing issues, and surgery.  Thankfully, Aaron's surgery was successful today as well, and he seems to be recovering even better than William.  The first few days of life were rougher on Aaron despite William's more traumatic entry, but since then he's had less issues, so his good recovery is no surprise.  He seems to be breathing fairly well on the regular ventilator and could be extubated within the next day or two. 

William is also recovering well.  He is still on the jet ventilator, and has some weaning to do in order to get back on the regular ventilator.  It may take him a little longer to be extubated given his history of apnea/brady spells. He is also a little Pillsbury Dough Boy right now - he has edema from the surgery and is on diuretics to reduce the fluid.  He should be back to his usual itty bitty size in the next 2 days.

The next few days will be focused on recovery.  They will be given medicine to manage their pain as needed, and time to rest and heal.  We look forward to holding them again, as snuggle time will give them the best recovery (in my opinion anyway!) :)

We are also looking forward to the birth tonight of William and Aaron's future best buddies (no pressure there).  Prayers to their family for two strong healthy boys and a quick recovery from delivery!

Thursday, July 21, 2011

Successful Surgery #1

Aaron had a good day, and enjoyed mommy cuddle time.  Today was mostly about William, though.

By the time this morning rolled around, I was a bit panicky about our baby boy having heart surgery.  We arrived in the NICU around 7 and hung out with William for a while before the procedure.  Instead of bringing the babies to the NICU, the OR comes to the baby. Five or six nurses came in with their rolling carts and set up a sterile field, and the NICU was closed to all visitors.  We were able to hang out in one of the patient rooms until it was done. 

The surgery went very well - he did not need a chest tube, and was stable afterwards.  Little guy was completely zonked out after it was done, so hopefully he's getting some good sleep on the pain meds.  Later this afternoon, they did need to move him to the jet ventilator (more powerful) and give him a blood transfusion, but this is not a cause for concern.

Aaron's surgery is scheduled for 10:30am  please keep the prayers up for him.  Even though the surgery is performed frequently and with good success, it's still heart surgery on itty bitty boys, and we just want it to be over. 

On a lighter note - Anna came with us to the hospital yesterday, and was coloring next to me when I was reading and talking to Aaron.  When Aaron would open his eyes and look at me, I'd say "Hi baby!" to him...every time, Anna would look up at me like I was strange and reply "Hi mom".  It's going to take her a while to get used to not being the only baby :)

Wednesday, July 20, 2011

Cuddle time!

William finally got in the cuddle time he needed today, with both mommy and daddy.  Aaron also had good snuggles with mommy.  They both did really well!  While I don't want them on the ventilator, it definitely has helped to make both of them more stable.  Just watching the monitors during cuddle time, both boys' heart rates dipped down (in a normal range) when they're with me...this is a good thing, as it meant they were super calm and loving it :)  The 1/2 pound weight difference between William and Aaron was obvious to me today - William is a solid little boy!

Today was good, but we kept being thrown curve balls with the scheduling of William's surgery.  Stephen arrived at the hospital right after work this morning, and texted that they were going to do his PDA surgery TODAY instead of Friday.  I was ultimately okay with this, although it gave me little time to mentally prepare.  The surgery was set for noon.  Sometime shortly before noon, the cardiac surgeon was called away for an emergency, so it was moved back to tomorrow at 8AM.  While this surgery is done frequently and we expect no issues, major prayer requests for this one (and Aaron's), as it is heart surgery for our baby boys. 

Aaron's surgery may be Friday, if his blood cultures come back negative.  His spinal fluid came back clear (thank meningitis), and his specific bacteria was identified.  In case the infection is still present, his antibiotic was switched to one that can pinpoint just that strain.

The anesthesiologist spoke with me a bit about the surgical procedure, which will be applicable for both boys.  They will receive anesthesia, then the surgeon will make an incision about an inch or so long on their left sides.  This sounds tiny, but may look big on their itty bitty bodies.  The skin will be pulled apart, the lung moved to the side, and the duct will be clamped shut.  The incision will be glued.  Staff will be on hand in case a blood transfusion or any other assistance is needed.  (On another note, both received blood transfusions on Monday, which I left out in that post with everything else going on).  The boys may or may not get a chest tube as well - if the chest tube is in, recovery will take a little longer.  Without it, recovery should take anywhere from 2-5 days.  Once recovered, we'll be able to hold them again, and hopefully they will be off of the ventilator again.

It sounds like a lot...and maybe it is, but it's supposed to be a fairly easy surgery from which they should recover well and then progress more quickly, so I don't want to get stressed about it.  They will both do well!

Tuesday, July 19, 2011

A Better Day

Today's visit was a bit shorter than intended, but the boys both had a good day compared to yesterday.  They will both be on the ventilator for a little while, at least through their recovery from the PDA surgery.  William had an excellent afternoon - very few desats.  I still wasn't able to hold him, though.  Hopefully tomorrow!  I did get some cuddle time in with Aaron.  He does so well with our snuggles :)

William's surgery is scheduled for Friday.  Aaron's date will be set once the infection is gone, which is not necessarily at the end of the treatment.  We will have the results from Aaron's lumbar puncture within the next day or two.  Putting this issue behind us should be a good step forward. 

I'm keeping this update short, but there's just not much to report.  I'd rather have nothing new right now than another day like yesterday :)

Congrats to our NICU friends who brought their baby home today!  

Monday, July 18, 2011


Today was a complete 180 from yesterday. 

Quick update on weights:  William is now 2lb 3oz, Aaron is still 1lb 11oz.

When we arrived this morning, we were greeted by the new doctor of the week...with the news that William was reintubated (back on the ventilator), and Aaron was back on the CPAP.  Yes, our little man who was breathing room air yesterday, and who has a battle scar from the CPAP, was back on CPAP - and possibly also moving back to the ventilator.  Both boys needed more blood drawn to test for infection, and both needed another ECHO done to check their PDA.  The feedings for both boys are stopped until their symptoms clear up.  This was not how we were expecting to enter the NICU today.

We sat with the boys for a little while and were chatting with the nurse when Aaron began to have an apnea/brady spell.  The nurse was having a hard time getting him back up and running, so we stepped away to let them do their work.  As we were heading back to the entryway, the other nurses were bringing curtains around his isolette.  And then we waited.  Stephen apparently knew that they were reintubating him at this point, but I had no idea what was going on and thought for a good several moments that we were losing him.  One of our pastors actually texted me while these thoughts were running through my head, asking if we were at the hospital to visit.  With the timing, I think it was God's way of checking in and saying that he's here.

Aaron had completely changed overnight.  Possible causes - the PDA was finally showing its symptoms, or an infection.  With William, I had suspected that the ventilator might be back in his future due to all of his breathing issues in the past week or so.  I did not expect it with Aaron, our healthy little fighter.

We received the results of the tests this evening - both boys still have PDA, and both have enlarged to the point where, combined with the symptoms, they each need the surgery to correct it.  While the surgery does have some risks, it is fairly common and when done should start resolving some of the issues both boys are having.  William should be able to have the surgery within the next few days.

Aaron, however, also has a blood infection.  The possible site of the infection is in the PICC line, which will be removed tonight and replaced with a peripheral IV.  Because the infection is in his blood, he also needs a lumbar puncture (spinal tap) to test the spinal fluid for infection.  Unless the cardiologists indicates otherwise, he will need to hold off on his surgery until the treatment has completed in about 14 days.  If the surgery must be done sooner, it would probably be next Monday.

Our good piece of news for the day, which I find somewhat humorous after everything else today - the plastic surgeon looked at Aaron's nose, and it should heal on its own.  In the grand scheme of things, it's minor and just a wound not worthy of being called a cosmetic issue. 

I know the NICU journey is a rollercoaster.  We've been cruising along fairly smoothly for the past week, so we were apparently due a little dip.  Please keep praying for the boys, and for us - for the strength to handle the dips, for Aaron's infection to clear without issues, successful surgeries, the list goes on.  It's a little harder to stay upbeat on down days, but I know there's a light at the end of the tunnel...we just need to get them through the next few months and then we will have our beautiful boys home with us.

Final comment for the day:  Happy 3 weeks to the boys!

Sunday, July 17, 2011

I know it's just cosmetic...

But we are concerned about Aaron's nose.  Forgive me for being unhappy about what is such, in the grand scheme of things, a small, cosmetic issue.  I'm going to vent for a minute, then will return to positive Helen :) 

The doctor looked at Aaron's nose again and decided it wasn't as bad as she thought yesterday,  but it was my first time getting a good look at it.  Mommy's not happy.  The bottom of his septum, the little piece of skin that connects his face to the tip of his nose, is gone.  Not cut, scratched, indented - gone.  Completely worn away (the bottom of it, not the whole thing) by the CPAP.  The doctor and nurses believe the tissue will "probably" grow back on its own, but plastics will need to check him out to confirm.  They will then continue to follow up with him and see if any action is needed in the future to correct it.

My frustration is because this was completely preventable.  The nurses were already aware that his nose was sore as this had caused them to remove the nasal cannula.  Why weren't they checking him more often?  The nurses are supposed to check the CPAP and readjust it as necessary, and lift it up at times to relieve the pressure on the nose.  They should have caught it before it got to this point.  The NICU was so busy yesterday that I'm inclined to believe this little guy was not getting his deserved attention.  He's been so stable and the nurses were more concerned about the newer, sicker babies, at the expense of his little nose.  Don't get me wrong, the nurses are great and I appreciate everything they have done, and credit them for the boys being with us today.  Their skin is very fragile and this is an (unlikely) possible outcome when using the medically necessary device.  However, he's already gone through so much and will go through so much more, he doesn't need this added to his plate.

Again, I feel petty even being concerned about this because his actual health is doing so well.  So I'll be done for now.  I may vent again after we hear what plastics has to say :)

Now that I have that off my good Aaron news, he is off of all supplemental oxygen!  He had two hours of excellent cuddle time today, using just the blow by oxygen (a little tube blowing air toward his face).  He had been breathing room air in his oxygen hood.  When I was leaving,  I noticed that he had wiggled out of the hood - it was over his forehead.  The nurse consulted with the doctor, and they decided to remove the hood completely.  I'm assuming that this has been done by now.  In all other aspects, Aaron seems to be doing pretty well.  His PDA is probably still open, as his heart murmur is still present, but it's still not affecting him.

William should be line free as of tonight :)  He is up to full feeds!  We had good reading time today, but no holding yet again.  He had a really good morning, but continued periodic breathing while I was there.  I was supposed to hold him...until he had another long apnea/brady episode.  The middle child needs to remember to breathe! 

So overall, the boys had a good day.  We're so thankful that they've come so far in 3 weeks.  They get their weight checks tonight, so I should have those to report tomorrow.

Saturday, July 16, 2011


The NICU was bustling today, with at least 6 new admissions since last night.  I was on constant monitor check with the continous surround sound beeping, but thankfully the monitors were (usually) not for Aaron or William.  Our prayers are with the other families in the NICU right now, it's not typically an expected or joyful entry. 

William did have enough desats, though, to again prevent us from holding him.  I read and sang to him for a good amount of time while just holding on to him in his isolette.  His PICC line was removed and he now has a temporary line in his arm which will be removed in a few days.  Hooray for line removals!  It hurts me that they have so many needles/wires/tubes sticking their tiny bodies.  I understand the purpose, but hate that they have to endure the poking and prodding. 

Aaron did get good cuddle time in today.  His feeds are up again today to 14ccs, moving him a little closer to William and hopefully closer to having his PICC line removed.  He has been breathing fairly well, but has been on the CPAP because the nasal cannula was irritating his nose.  When the nurse took off the CPAP this afternoon to clean him, she noticed that the irritation was worse from the mask pushing up his nose.  The doctor came over and her remarks - lovely to hear - including "Oh my, that looks horrible!" resulted in the removal of the CPAP completely and immediately...and now he's under a plastic oxygen hood.  It looks like a big bubble over his head and contains the air that's being blown in to assist with his breathing.  The doctor is also going to have a plastic surgeon take a look at his nose to make sure there's nothing else they need to do in order for it to heal properly.  I wonder if preemies can get nose jobs?  That's the last thing I thought they might need from this experience!  It should heal, though.

In mommy and daddy news - I am feeling much better today, and we took the evening off to see Harry Potter!  It was excellent...but read the books first, or you'll never understand everything that went on :)
Here are two pictures from today, taken with Stephen's phone since my battery died:

William, all stretched out - his diaper is huge!:

Aaron, the spaceman:

Friday, July 15, 2011

Friday Cheers Take 2

Today was a good day for the boys even though I wasn't able to see them.  They still got in good daddy time, and it really was best that I stayed home and did nothing but sit on the couch and watch trashy TV movies :)

Stephen had a positive conversation with the neonatologist regarding Aaron's bleeding.  The doctors rotate weekly, and this is our favorite thus far (she is also the owner of the practice).  She sat him down and explained each of the different scans, and showed him how minimal his IVH is for a level 4 compared to what it could be at that level.    This was very reassuring, as it greatly reduces the likelihood for all of the severe outcomes the other doctor had delivered.  If they're delayed in speech or what? :)

In other updates for the day, William's infection has cleared.  Hopefully this will lessen his apnea spells!  He is up to 18ccs of milk every 3 hours, and should have his PICC line removed within the next few days.  Aaron is up to 12ccs every 3 hours.  His PDA is still open, but this doesn't seem to be affecting him at all.  Aaron was moved back to CPAP yesterday or the day before, but only because the nasal cannula was irritating his nose.  The nurse tonight has him in "big boy diapers" as she called them - apparently his little XS preemie diapers are too tight!  From the view on his videocam, the new diaper could swallow his whole body  :)  I can't wait to see it in person, if the nurse tomorrow keeps him in the bigger size.

I can't believe that they're almost 3 weeks old.  As people have told me, this time will be made of long days and short weeks...this has certainly held true.

Thank you again to everyone who has emailed with your stories or with words of support/prayers - all are helpful and appreciated.  I have a ton of other personal thank you's that I need to send out...I keep trying to find ways to say thank you in here but it's just not good enough!

I'll post pictures tomorrow :)

Thursday, July 14, 2011

40oz Down the Drain

Sing it to the tune of 16 candles down the drain (the draaaaiiin) :)

Stephen made it to the hospital early this morning to hold Aaron, who had a good day.  Supposedly he had more desats this morning than William, but William caught up by this afternoon.  My holding time was again cut short by an ugly apnea/brady spell, which was followed by another, worse, one not much later.  The second spell was probably due to a big bowel movement...when they strain to "go" they can hold their breath, and then can't get it back.  There is a potential cause for his continued episodes - the blood culture from last night showed signs of infection in the PICC line.  Because of this, William is now on another round of antibiotics.  They believe they caught it early, which is good.  We were hoping he'd have the PICC line out in the next few days, but now he'll have to keep it in until the antibiotics are done.

In mommy news, I've been kicked out of the NICU tomorrow.  I thought I was tired today, with a slight headache this morning, due to Anna's several late nights and just a general lack of sleep.  I started to feel worse throughout the day though and left the NICU to go nap.  The boys' nurse thought I looked bad and like I was about to cry (because of William's last episode), and urged me to leave to get rest.  By the time I got home after my nap, I was in a lot of pain on one side and felt like I was going to die of flu-like symptoms.  Based on the high fever and location of the pain, I knew I had mastitis, which was confirmed by the on-call doctor at my OB's office.  So now I'm on an antibiotic and should feel better within the next day or two.

Typically, babies would be able to continue nursing with mastitis.  With William's and Aaron's weakened immune system, though, I have to pump and dump for the next 24 hours until the antibiotic kicks in.  Hence the 40 ounces down the drain!  If I felt better, I'd take the opportunity to have a nice adult drink, but I'll settle on some nice coffee drink tomorrow.  I feel like I'm leaving things out today, but I'll catch up tomorrow.  Off to bed!

Aaron has his next head ultrasound tomorrow - please pray that everything is stable.

Wednesday, July 13, 2011

28th Week of Pregnancy

I received an email yesterday from reminding me that I am entering into my 28th week of pregnancy today, and everything to expect...kind of funny. 

William had a follow-up head scan today.  Everything looks stable right now, so it's really just a wait and see game to see if the enlarged ventricles affect him down the road.  After two stable scans, I asked the doctor if it was likely that anything would worsen at this point, and was comforted by the fact that it should stay stable.   William will probably stay on the CPAP for a while, due to his periodic breathing and apnea episodes.  He decided to stop breathing and drop his heart rate while I was holding him today, which was frightening.  The nurses got him going again but it did cut our cuddle time short.  I'd be really happy not to witness that again.  In more good William news, though, his feeds are increasing again and he should be completely off of the TPN in the next day or two.

Aaron had a follow-up ECHO for his PDA today.  The duct is still open, but we'll still wait with him to see if surgery is needed.  He's doing so well with his breathing and feeds that there's no point in subjecting him to surgery at this point.  If he stops tolerating the feeds or it gets bigger, the surgery discussion will come up again.  I did get good cuddle time in with him today :)  His next head ultrasound is Friday.

Let's hear it for the boys...they've come so far in such a short amount of time!

Tuesday, July 12, 2011

Brotherly Love

William and Aaron together at last!
(Well almost)
(and ignore the big people in the photo, this is about the little ones!)

Today was a good day.  We got some good cuddle time in with the boys - William probably had about 3 hours of time with daddy today, making up for the holding time he didn't have yesterday.  Aaron was receiving a blood transfusion this morning, so we couldn't hold him until this afternoon...but when we did, look how close they are!  Not quite close enough to hold at once yet (and they have too many lines in them right now), but pretty darn close :) 

As you can see in the picture, William was on CPAP today.  They did move him back to the nasal cannula tonight though, which is good.

No other updates today...again, no news is good news.  We want them to have uneventful, peaceful days where they can just sleep and grow :)

I'm not sure how many times I can thank everyone for your support, but I'll keep doing it - thank you all for your continued prayers and notes, it's all much appreciated!

Monday, July 11, 2011

Two Weeks Old!

The boys are two weeks old today!  It feels like the time has flown by, but at the same time that a year has passed since I had them. 

The isolettes have been moved next to each other now, which is good.  They were across the aisle from each other.  It's still not super convenient, as they are too far apart to hold both at once or even to read to both at once, but now we have one home base between the beds.  Hopefully they will move them a bit closer at some point, so that we can read to/hold both at once. 

Aaron is still progressing nicely, and has gone up to 6ccs of milk every three hours.  He may completely move off of the nasal cannula within the week.  He had some good cuddle time in with daddy today :)  He is too small to get an MRI, which would not be warm enough for him, but he did get a repeat head ultrasound this morning.  He's had no changes that would result in any further action at this point, which is good.

William is back on his 10ccs of milk after stopping for the night for his transfusion.  He's fine, but did have another very scary spell while I was sitting with him today.  I'll spare the details, but it did make me realize just how fragile they are, and appreciate that they are where they need to be.  He is also back on CPAP for now...breathing is a good thing.

I've been really looking forward to the boys moving to MRMC to be closer to home.  It turns out that if they need any type of neurosurgery, which is a possibility for both, they would have to stay at St. Mary's the whole time :(  Let's keep praying that they won't need anything!

Here are pictures of the cuties from yesterday:



Sunday, July 10, 2011

Lots of Love

Today was Stephen's first day back at work, so I spent most of the day at the hospital in order to hold both the boys.  Anna visited for a bit and then went home with Grammee.  She does very well in the NICU and just sits and colors or plays with stickers.  (I do need to work the timing out better, though, because I did not intend to spend 6 hours's not fair to Anna on the weekend).  William just had a bath on Friday, so I gave him a wipe down in his "baby bed," as Anna calls it, and then had good snuggle time.  Both boys did really well.  I look forward to the day that I can hold both of them at once!

We weighed and measured both - William wins the weight contest, with a whopping 1lb 15 oz.  He is now an ounce over his birth weight, which is excellent.  Aaron started out at 1lb 15oz and is down to 1lb 11oz... he should start to catch up as his feeds increase.  Aaron wins on length, measuring 14.5 inches and slightly ahead of William's 14 inches.  They started out at 13.5 and 12.5 respectively.  Both boys are both up on their feeds as well - William moved to 10ccs every 3 hours, and Aaron up to 4ccs.  One ounce is equal to 30ccs, so it's still just a tiny bit of milk, but definitely better than none! 

Since yesterday focused mainly on Aaron, William decided he wanted some attention today.  After holding him, he decided to have a little apnea/bradycardia spell, where he stopped breathing and his heart rate went down.  This is fairly common in micropreemies.  The doctor increased his caffeine dosage to help him remember to breathe.  I'm not sure that I mentioned the caffeine yet...this is also typical with preemies.  Both boys get caffeine every few hours to help prevent the spells.  I told the nurse that I would be more than happy to drink coffee all day (I need it) so that they can get it from my milk, but she didn't seem amused.

As I was getting Anna ready for bed tonight, I received a call from the NICU nurse letting me know that William had another spell, and was getting blood work done to make sure he doesn't have an infection.  Depending on the results of the blood work, he could be going back to CPAP.  I called back later to get the results, and there's no sign of infection, but his hematocrit levels have dropped.  He should be receiving a blood transfusion right about now (have you donated lately?  have you realized that you could be saving itty bitty boys like mine? :) )  I also spoke with the nurse practitioner on duty to find out possible causes, as I was concerned that this could indicate additional bleeding in the brain.  She seemed fairly confident that his bleeding is stable so he probably wouldn't have any more, and that it was just a slight drop.  So much blood is being taken from their little bodies for lab work that it's hard for them to keep up.  He may receive another transfusion or two during his stay, but they should lessen as they get bigger.

Overall, though, it was another good day.  I'll try to put more pictures up tomorrow :)  Now it is time for bed!

Saturday, July 9, 2011

Breathing Again

To be quite honest, we've been more than a little shaken up since the news on Wednesday regarding the brain bleeds.  I had the chance to speak with the neurologist today, though, which eased our fears a bit.

But first things first :)

This morning was exciting with Aaron's first bath...not his first, but the first given by us.  There are so many of their firsts that we'll miss, so I'll take what I can get :)  He will apparently be easier to bathe because his picc line is in his arm - the nurse just puts a glove around his arm to protect it.  William's picc line is down near his foot (which is why I neglected to see it the other day), which is harder to cover.   As you can see in the picture below, he goes into the tub completely swaddled, which helps keep him warm.  Only the body part being washed is uncovered.  He did well :)

We received the results of the ECHO from yesterday:  In other good news, while Aaron still has the PDA, it has not increased in size.  He's back on his 2ccs of milk every 3 hours.  William is still plugging along at his 6ccs...not much has changed for him today, which is good.  Both boys got in some good cuddle time with us.  I love my snuggle buddies :)

Also, the nurse strongly suggested that we keep the boys out of daycare through the spring to minimize exposure to RSV and infection.  My tentative plan had been to keep them out through the end of the year, as I am fully planning on returning back to work (although perhaps in a reduced capacity through the end of the year, yet to be determined).  If anyone knows a good nanny, or perhaps nurse or nursing student, who is experienced with infants and looking for a temporary position through the spring, please let me know.  We are going to start looking for someone to come to our house 3 days a week (the days would vary depending on Stephen's schedule).  I'm not sure yet if this person would start in January or perhaps a little earlier to assist with my schedule.  We would want to send them to daycare when they are old/strong enough, as we love Anna's school and the socialization would be good for them.

Okay, on to the neurologist visit:  As I was hanging out with William and pumping this afternoon (Stephen had gone home with Anna), I could hear some new male voice on the other side of the curtain talking to the nurses about a few of the babies in the NICU, including William and Aaron.  I could only hear bits and pieces, but enough to figure out who he was.  The nurse popped her head in to let me know that it was indeed the neurologist, he had reviewed William's and Aaron's head scans, and this was a rare visit as he is usually only there sporadically and at night.  As soon as I was presentable, I waited anxiously for him to come introduce himself so we could chat.

The chat went better than expected.  Based on the last conversation with the NICU doctor, I was prepared for more bad news, specifically about Aaron.  This doctor, however, was realistic.  He said that we already know the possibilities, so there's no need to go over those again, and that it's really too early to start predicting things.  Also, the bleeding is not at the level that the NICU doctor had indicated, and it should be stopped unless there's a secondary bleed.  We don't have a full picture of what's going on yet, and won't until the bleed starts to absorb.  Aaron will get an MRI next week to try to get that better picture, although it's still early in the game for him.

Both boys will continue to be monitored for cerebral spinal fluid build up.  Neither needs further action at this point, but if they did, the possibilities would be lumbar punctures (like a spinal tap), reservoirs, or shunts, to drain the fluid and prevent pressure from building up.  Again, we're not there yet, but we know it could happen in the future.

Lastly, the neurologist said that both boys are survivors.  They are doing exceptionally well in every other aspect and are mostly stable. We have a lot of time to work with them and get any help they may need in the future.

I was incredibly appreciative that he did not, and does not in general, dwell on any possible outcomes.  He was straightforward with the actual issues, and actions that can be taken.  This was a bright contrast to the dark delivery of the NICU doctor. 

I feel that some of our prayers have been answered today just to help give us strength and keep a positive outlook. Let's continue to pray for the little ones to stay healthy and for the best possible outcome for both of them :)

Friday, July 8, 2011

Friday Cheers

Another good day today.  William does have his picc line in now - it was actually in yesterday, which I failed to notice.  Good job, mommy :)  William is up to 6ccs of milk every 3 hours, which is excellent.  Aaron still has bile in his tummy, so they had another ECHO of his heart done today.  They hear a murmur again, which leads the doctor to believe the PDA may have opened back up some more.  This would affect his digestion as blood would not be circulating properly, so he's off of milk and just on the TPN for now.  We'll find out the results tomorrow, and figure out how to proceed from there.  This is not overly concerning to me as it's something they can fix.  We need to get the itty bitty guy eating some more!  Still, overall it was a good day for the little guys.

Please keep the babies in your prayers, as well as the other families in the NICU.  The place is full of little fighters!



All tucked in:

Kangaroo time with daddy:  (Tilt your head to the right, the picture was not cooperating)


Snuggled and sucking on his paci:

Soooo adorable:

Thursday, July 7, 2011

A New Day

One day at a time.  I'm glad that yesterday is behind us, although Wednesdays may be rough with the weekly head ultrasounds until things stabilize.  Today was much better :)

I was able to meet with another micropreemie mommy who has been through many of the same issues, and it was such an encouragement to see how well her beautiful kids are doing.

William is now also on the nasal cannula, but for different reasons than his brother.  The CPAP just wouldn't stay on.  It's really awesome that they're both already on the cannula and that everything else looks good right now.  They're both getting some of my milk, and hopefully they will keep getting more and more (we already need a new freezer to store what I have so far, so they better start taking more! :) ) 

We had cuddle time with both boys today, as we will continue to do every day.  The best things we can do to help with their brain development are skin-to-skin contact, talking and reading to them, and giving them my milk.  We will do whatever it takes to give them the best possible outcome.  And they are super cute!

Keeping this one short today, as sleep is much needed.

Thanks again for all of the love and support!


Wednesday, July 6, 2011

The Good, the Bad, and the Ugly

Let me start out with the good things from today.  When I first got in this morning, the nurses told me that they had taken x-rays of Aaron's stomach, as they were pulling bile back up from his tummy and it was swollen.  This could indicate NEC, a severe intestinal disease, or simply that the tube was pushed too far down.  As it turned out, it was actually air.  His CPAP was pushing too much air into him that he wasn't they moved him onward and upward to the nasal cannula :) The nasal cannula provides assistance but does not seal around his nose, so he can use the extra assistance or not use it at will.  It's nice to have the headgear off of him, you can finally see his face.

Also, Stephen held William for an hour, and I held Aaron.  They are sooo tiny but it's such a good feeling to hold them.  :)

The repeat head ultrasounds were today.  We've been holding our breaths for this, as we were concerned about William after the last scan.  Aaron also had a bleed, but William's was worse.  In another twist...William's bleed is now stable.  He does have some build up of spinal fluid, which is common for his level of bleed.  The nurses will keep him monitored and measure his head every day, to see if the fluid starts to drain on its own.  If it does not, it could cause hydrocephalus, with the pressure needing to be relieved by spinal taps.  If spinal taps are ineffective, a shunt is the next step.  While there could be some damage from the initial bleed, at this point everything looks good as long as we can keep the pressure from building from the fluid.

Now the not so good news.  Aaron has a new bleed, of the most severe, on both sides of the brain.  This was a huge kick to the gut, to say the least.  The doctor had a discouraging conversation with us regarding the potential outcomes of the bleed.  We knew there would be ups and downs with the NICU, but they've been doing so well - especially Aaron, our little fighter.  While I've now read plenty of stories of preemies who have overcome severe brain bleeds with little delays, the vast spectrum of potential future issues is daunting, and wasn't helped with the doctor's assessment.  Please pray for us to find the strength to deal with whatever may come, but mostly for Aaron to overcome this, and for his brain to grow and rewire the best way possible.

Isaiah 40:11:  He will gather the lambs with His arms and carry them close to His heart. He will gently lead those who are with young ones.

Tuesday, July 5, 2011

Baby Hugs

No major changes for today, which is good.  William still does not have his picc line in - they are going to let him relax tonight, as they believe the two attempts to insert it have stressed him out a bit.  Both are still doing well breathing on the CPAP, which is excellent for such little guys.  Daddy got to hold Aaron for the first time today, and I held Aaron :)  It's such a great feeling to hold them.

The second head ultrasound is tomorrow.  This is our biggest concern right now.  With everything they're going through, this is the one thing the doctors can't just fix or take back.  Please pray that the bleeding has stopped.

I'd like to thank everyone again for the ongoing support, love, and prayers.  We are incredibly blessed to have people like all of you in our lives. 

Daddy's first hold - Aaron

William's First hold, with Mommy - Baby Hugs!

Monday, July 4, 2011

Happy 4th and Happy 1 Week!

What does a kangaroo say?

I don't know either, but if I did, that would be the title of the post.  Today was a big day for the boys, and for me - I did get to hold Aaron :)  Stephen stayed home with Anna for the afternoon visit, as one visit a day is more than enough for her.  With Kangaroo Care, we'll get to hold them each for 1 hour a day.  When they are on less machines, their incubators will be moved closer so that we can hold both of them at once for an hour.  This will be nice, as I'm sure they miss being in the same space.  It was awesome to hold him, but he is SO TINY, it's crazy.  He looks bigger when he's laying in the bed.  I also heard him cry, which sounds more like a kitten meowing than the powerful wails that used to (who am I kidding, still do) come from Anna.  I'm sure he and William will both get there one day.  I never thought I'd look forward to screaming!

As of this morning, the nurses thought that Aaron's duct was closed and that William's might still be open.  Aaron's heart murmur is gone, and overall he is doing the best health wise.  In an interesting twist for the day, William's is actually almost closed and Aaron's is smaller but still moderately open.  The doctor who read the ECHO (not ECG, as I had said in yesterday's post...ECG = electrocardiogram, which is not the same as echocardiogram), came to me prepared to discuss surgery for Aaron.  When faced with the disbelief of the NICU doctor, nurses, and myself, she decided to hold off further treatment of his PDA for now and treat the child, not the diagnosis.  He is doing so well that they believe it may close on its own and don't want to put him through unnecessary surgery.  They will redo the ECHO in a week. 

Based on William's ECHO, he gets to start feeding tonight!  Aaron will also start feeds, but in smaller doses until the PDA is resolved.  By feeding, I mean they get to start on my milk and not just the TPN.  In more William news, he is now also on the CPAP again.  As of this evening, he still did not have the PICC line, but hopefully it'll be in tomorrow.  Both boys had their umbilical artery catheters (UACs) removed, so blood will be drawn via heel pricks instead.

Overall, it was a really good day for the boys.  I give a lot of credit to all of the prayers for their progress so far...please keep them coming!

Aaron's first Kangaroo hold

July 4th Pictures

The nurses did these for us last night, aren't they great?

Aaron - his nose is squished from his CPAP :)

William - eyes open!

Sunday, July 3, 2011

Almost a week!

Baby Updates

A few steps forward today - Aaron's heart murmur is gone, leading the nurses to believe that his PDA is closed.  William still has a slight murmur, but they do have another dose of medicine tonight so we'll see what happens.  They have another ECG tomorrow to confirm.

Aaron is still the feisty one and wiggles around a lot, while William is more chill.  William opens his eyes when we talk to him, which is awesome.  Aaron's face is mostly covered by the CPAP and his bili light blinders, so it's harder to get a good look at him.

The boys have had several visitors this weekend.  They have met both of their uncles as well as their Great Aunt Mel and Uncle Timmy (affectionately known as Uncle Dummy by Anna).  We're open to family visiting the boys, just one or two people at a time.  Groups are a bit hard for me to digest at the moment, and I selfishly don't my time taken away from them.  Stephen has been really good about that, though, and will go sit in the waiting room with Anna when she gets bored or if someone else wants to come in.  Speaking of Anna, she has been excellent during her visits.  She sits and colors and entertains the nurses.  Also in completely off-topic big sister news, she peed in the potty today!  Another small victory for the Conley kids.  She's a stubborn one :) 

And in the best news so far - we may get to hold them tomorrow!  When we were visiting this morning, the nurses were discussing removing the umbilical lines currently providing their nutrition, and moving them on to the picc line. (Look at that, I figured out how to add hyperlinks).  Once the picc lines are in, we can take them out for small amounts of time.  I just called to see if this has been done yet, and they do have the picc line in Aaron. They tried with William but were not successful (no fault of his, apparently it's a skill that only certain nurses possess).  They will try again tonight.

In other news, I've been playing with the blog today to add an About Us tab, as well as some pictures on the sidebar.  The format may keep changing as I figure out what we like the best :)

Saturday, July 2, 2011

Day 6

Insert creative title above.

No real news for today for the boys, but no news is good news.  Aaron is still on the CPAP (yay!) and William looks good.  They both get their second dose of the second round of the heart meds tonight.  Aaron is back under the bili lights, but hopefully will be off soon.  We're really proud of the little guys for breathing so well so young.  William's blood gases were all excellent today, so hopefully when his duct is fixed he will also move to the CPAP.

In other news, our lives are now completely scheduled between pumping, naptime, meals, and factoring in the 45 minute each way, twice daily, drives to the hospital.  The exhaustion will end, right?  One of my coworkers lives right next to the hospital and has offered her house to us during the day - we plan on taking her up on that next week, which will be a huge help.  (THANK YOU!)

Again, I read everything that anyone sends to us, and we feel incredibly fortunate to have such support.  Just be patient with responses :)

Friday, July 1, 2011

Another Day

Today was mostly a good day for the boys.  Aaron is now off of the ventilator and onto CPAP!  CPAP stands for "continuous positive airway pressure", and is a huge step up for the little guy.  Basically, it means that he's breathing on his own with just air pressure to assist with keeping his lungs open.  The nurses did let us know that he could get tired of this and go back to the tube, which would be fine.  William was also on CPAP for a few hours, but is now back on the ventilator.  He'll get there.

We also obtained the results from the ECG - both of their ducts have closed a little, but are still open.  They'll start another 3 day round of the indomethacin tonight.  We'll meet with the surgeon if the ducts are still open after this round.  I'm looking forward to them getting off of this medicine so that they can get more food and start getting some meat back on their bones.

Also, both are off of the bili lights now.  I'm not sure if I mentioned the bili lights in the earlier posts, but those are fairly common in both preemies and full term infants to treat jaundice.  They also help with bruising.  Despite William's arrival, Aaron had more bruising because he came out backwards, but it's all starting to fade now.  They had to wear huge eye shields under the lights which are now removed, so it's nice to see their eyes again :)  (Not that they open much yet, but I like it when they do!)  

The nurses were great with Anna today and gave her a peds gown to wear, and paper and crayons so that she could sit and color pictures for her brothers.  She made a beautiful green (of course) sign for each of their incubators.  I'm proud of the big sister :)

Aaron's face is covered again with the straps for the CPAP, so I couldn't get a good picture of him.  Here's another picture of William: