Friday, February 28, 2014


We are still keeping the babies quarantined to our house.  With the first 3 months of their life being the most critical and it being the most dangerous if they were to get a fever, we made the decision that we weren't going to expose them to anything other than going to their doctor appointments.  Because they are preemies, they missed out on the vitamins and minerals that babies get in utero during the last few months of pregnancy, so their immune system isn't as strong and they are more susceptible to catching something.   Anybody that comes to our house and is around the babies is required to have their T-DAP vaccination and flu shot. When Tony comes home from work, he promptly changes his clothes before handling the babies.  When I go to the store, I come home and change my clothes.

A person doesn't have to have the Whooping Cough to be a carrier of it and pass it on.  People generally don't know they have come down with the flu for another day or two after contracting it.  The RSV virus stays alive for up to 6 hours after contact, which is why we change our clothes after being out in public.  I just read on Facebook this morning that two of my friends have babies that were just diagnosed with RSV. The thing is, if Ayden and Rylee were to contract any of these things at their young premature age, it's not that they would just get sick.  Those things could actually kill them.  They could die. Nope, we aren't taking any chances.

We have hand sanitizer available in our living room and in the nursery.  We have had a few visitors wear face masks if they have been sick, but feel fine and think they are over it.  If anybody has a cold, they simply don't come over.  Did you know that if a baby gets a fever during their first 3 months of life, that they are usually admitted to the hospital for all sorts of testing?  Yeah, we aren't taking that chance.

I am sure that there are plenty of people that may think we are being excessive, maybe ridiculously so, but you know what?  We don't care.  We have waited for our babies for more than a decade and we aren't going to risk them getting sick during this critical 3 month period.  We love to have visitors and have welcomed anybody that has wanted to come over and hold the babies.  We just ask that they are current on their T-DAP, have a flu shot, and have no sickie symptoms.  

There has not been a single family member or friend that has questioned us (at least not to our face!  haha). I'm sure there are plenty of people that don't understand, but everyone has just accepted that this is the way it is.  They have either gotten their shots or are choosing to wait until March 24th, the day after the babies' 3 month birthday.  

That means I am house bound during the week, but Tony takes over on the weekends so I do get out.  I have escaped to go grocery shopping and to return some baby shower gifts.  This last weekend I got to go see my nieces and nephews, and watched my oldest niece play in her basketball game.
Loving my time with Nathanial (2), Steven (4 next month), and Eliana (8)

Making funny faces
I'm looking forward to being able to take the babies out and about.  My nephew Steven's 4th birthday party is coming up in early April and I can't wait to introduce and show off our babies to everyone!  I can't wait to take the babies to watch softball games at the local high school where I've coached the last 20 years.  I'm excited to be able to watch the team, because I know that there will be lots of people wanting to hold the babies and I'll be able to focus on the game.

We've kept ourselves pretty isolated so far, but we only have 24 more days.  24 more days and it will be the day after their 3 month birthday.  24 more days to go and we can introduce our babies to the world.  24 more days and they will have reached what our pediatrician has called the "safe zone," where those illnesses aren't quite so life threatening.

Wednesday, February 26, 2014

2 Month Birthday!

Saturday was the babies' 2 month birthday!  It's amazing to think that we've been parents for 2 months now. After 14 years of trying to start our family, we are actually parents.  Unbelievable.  Sometimes, I really do have a hard time believing it, but that's a story for another day...

I know I'm probably biased, but I do think we have two of the cutest babies!  And they seem to get cuter and cuter almost every day.  I'm going to share all that cuteness with you in a ton of pictures!

Tummy time is exhausting!
Happy Valentine's Day!

Rylee doesn't like tummy time so much...
So she just promptly fell asleep instead

Rylee has had a lot to deal with in her short life so far.  The big ulcer on her hemangioma does seem to be healing with new skin growth coming in.  The smaller ulcers have gotten bigger, but we are treating them, so hopefully they will soon get better as well.  We see the pediatric dermatologist again next Thursday.

In addition to her hemangioma issues, Rylee also seems to be dealing with some reflux.  Feedings have become a challenge and seem to have gotten worse and worse.  By the time she is half way through her bottle, she usually starts fussing.  When we bring her up to burp, she definitely doesn't like it and starts crying.  A lot.  And while she's at it, she tries to scratch our face off.  It is not a pleasant time for any of us. She seems to spit up normally like any other baby, but every once in awhile, she pretty much loses what seems like the entire contents of her stomach.  This usually happens during diaper changes and baths, because she absolutely hates both and screams until she makes herself sick.  She now has a prescription of Ranitidine, an off brand of Zantac.

Rylee spends most of her awake time crying or screaming.  I am hoping that we will eventually get to the bottom of all the things causing her so much pain and she will be a happy baby.  She does like it when you hold her hands and sing and dance with her arms.  This has a calming effect for her.  She also enjoys spending time in the swing, looking in the mirror and at the little animals that circle above her head.

In addition to her hemangiomas and reflux, she has developed a sty in one of her eyes.  This is a pretty minor thing and her doctor assured me it should go away on it's own.  Rylee also has the beginnings of a misshapen head, being flatter on one side.  This is an issue she shares with her brother.  They will both see a physical therapist soon for this, but in the meantime, we are supposed to make sure they lay on the opposite side of what they like to do.

Yesterday was the babies' 2 month check up.  They both got their shots.  I was impressed by how well they handled them.  Both screamed at the injustice, but quickly got over it after being loved on for a few minutes. They then spent pretty much the entire day sleeping and being held.  When you hold Rylee to your chest, she spreads her arms out wide on either side of you, like she is giving you a great big ol' hug.  When you hold Ayden, he curls himself up into the tightest little ball of love on your chest.

Rylee weighs 9 lbs even and is in the 50th percentile, 3% if you don't adjust for her being a preemie.  Her height is 19 3/4 inches in the 10th percentile, 0% not adjusted.  Her head circumference is 37 1/2 cm in the 50th percentile, 23% not adjusted. Rylee still wears newborn clothing and newborn diapers.
This is her Daddy's favorite outfit on her
If you look, you can see the sty on her left eye
A rare smile caught on camera!
Ayden is a pretty a calm baby for the most part, although his sister is starting to teach him how to cry.  It gets pretty humerous at times when they both get going and they cry in unison.  Sometimes we just can't help but laugh.  Mostly he just whimpers and grunts.  He has started to coo a little bit.

The cutest thing ever is when he sneezes.  After he lets out a sneeze, he lets out a sigh.  It is so funny.  Rylee on the other hand, sneezes like her Daddy with a big wind up before the big sneeze, which is also pretty entertaining.

Ayden has rolled over a few times from his stomach to his back.  The first few times I think were just accidents based on where his hands were placed underneath him when I put him down.  Saturday, Tony and I both thought he rolled over intentionally for the first time.  He hasn't done it since though.

He frequently smiles and we think that they are starting to be real social smiles now because he will get a big grin on his face when we talk to him sometimes, or when we stroke his cheek.  You can't help but smile when you see him smile.  It is so adorable!

Ayden is a TANK!  He eats non stop, pretty much to the point I think he eats too much.  Partly I think he likes to eat because it is soothing to him, so I sometimes give him a pacifier instead of more bottle.  Tony and I disagree over this.  He thinks if Ayden is hungry, we need to give him more.  If he is fussy, it must mean he's hungry.  Our pediatrician said we probably should slow down how much we are giving him because he is definitely gaining above the normal rate.

As of yesterday, Ayden weighs 11 lbs, 9 oz and is in the 97th percentile, 27% adjusted.  He is 21 1/4 inches long, in the 50th percentile, 1% adjusted.  He has a ginormous head at 41 cm which is in the 97th percentile, but get this!  His head is in the 93rd percentile adjusted!  We always knew he was going to have a big head, based on all the ultrasounds.  I keep thinking about what the MFM doctor told us - that he is just going to be super smart!

Ayden has outgrown his newborn clothes and is now wearing 0-3 month and 3 month sizes.  He is in size 1 diapers.  He is a big boy.  I'm pretty sure he is going to be one of those roly poly babies with lots of cute little baby fat rolls.  Time will tell!

Love his face!

Now for their 2 month pictures.  This went sooooo much better than we thought it would, except for me being a goober with my camera.  I kept trying to take pics, but had it on video and didn't know it so I missed a lot of really good smiles.  Ayden was very smiley and Miss Rylee was full of funny faces.

It looks like they are dancing!

Sunday, February 23, 2014

Breastfeeding - Or Not

I had every intention of breastfeeding my babies.  In addition to the benefits that breast milk has, I also wanted that connection with them.  Not to mention the amount of money it would save us not spending so much money on formula.

It started off so slow.  I pumped the recommended eight times per day, but was barely getting anything.  I was lucky to get a syringe full, but the nurses were very supportive and used every little drop I was able to muster out of my boobs.  They kept telling me that even the thumb nail amount I was getting was beneficial to the babies, so I kept pumping.  And pumping.  And pumping some more.  Finally I was able to get more than just a syringe full and I was so proud.

I started off just nuzzle nursing the babies.  I would hand express a few drops and rub it on their lips. Neither baby was able to really latch on at first, so we just practiced.  It didn't take long before Rylee actually did get a latch.  However, she wasn't able to nurse for very long.  Ayden never really latched on, until one of the nurses suggested a nipple shield.  Woo-Hoo!  That worked!  He was able to latch on to the nipple shield and I actually was able to feed him for a short amount each time.

Because they were preemies, they did not have the endurance to nurse for very long.  But I stuck it out and would try nursing both of them.  Once they were done on the boob, we initially would finish by gavage feeding them through their feeding tubes.  When they got strong enough to transition to a bottle, we finished their feedings by giving them a bottle.  After each of these feedings, I finished by pumping.

It was pretty grueling, both mentally and physically, because of their three hour feeding schedule.  While they were still in the NICU and I was staying at the hospital, it wasn't too bad because I would skip going to the NICU for one or two feeding times every night, letting the nurses take care of them.  Although, I was still pumping in my room.  The difference was that I could take the 20 minutes to pump, send the milk down to the NICU, and go back to sleep.

We tried several different ways to feed them, trying to find the one that would work.  I nursed one, then bottle fed.  Nursed the other baby, then finished that one off with a bottle.  Then pumped.  This whole process took about two hours, and that was with the help of the nurses.  I tried nursing just one baby at a feeding and bottle feeding the other, switching who got the boob each time.  We still had to give the nursing baby a bottle to make sure he/she was getting enough.  And of course I still had to pump.  We weighed the babies before and after nursing to see how much they were actually taking in off the boob.  It wasn't near enough.  They didn't have the endurance to breast feed and take in enough milk to gain weight.  My plan was to eventually nurse both babies at the same time, but this was impossible at this stage because neither one was capable of latching without assistance.

Once the babies were discharged and we got home, I lasted a week.  By the time I nursed one and finished with a bottle, nursed the other and finished feeding with a bottle, then was taking close to two and a half hours every feeding!  And then I had to turn around and start the process all over again.  Tony was helping with the bottle feeding part, and occasionally I pumped and we only bottle fed in an attempt to get me more sleep, but it wasn't working.  I was slowly dying from the lack of sleep.

The lack of sleep wasn't the worst part though.  What made it all so horrible was that I still wasn't producing enough milk.  I barely was able to pump enough to feed one baby, let alone two.  Quite often, we had to supplement with formula just to get one baby the right amount.

If I was able to nurse even just one baby at a time with enough to satisfy them, I would have stuck it out.  If I could have pumped enough to feed them at a sitting, I would have continued.  I know it would have gotten better.  But I didn't have the milk supply, and without that, it just wasn't worth it.

I did meet with the lactation nurses several times while we were in the hospital.  I even had an appointment with one a week after being home.  But after that one grueling week at home, I was at my breaking point.  I knew I had made the right decision when that lactation nurse agreed with me.  There was absolutely no way I could continue with that schedule.

I tried.  I eventually gave up.

So now we go through almost a full can of formula every day.  HOLY MOLY.  I sure wish it worked out for me to breast feed them because a can of formula cost $17.99.  We go through six cans a week.  That's $107.94 every week.  That will be $431.76 per month.  But wait....these babies are going to start needing more and more as they continue to grow.  Oh. My. Garsh.  I really, really, really wish the breastfeeding would have worked out.

However, my time (sleep) has got to be worth something too.  Those were my husband's words.  Those were the words that helped me to accept that my boobs failed me, because he was so right.  We are a much happier family now.

Friday, February 21, 2014

Rylee's Doctor Appointment

The first time we went to the Pediatric Dermatologist, we left feeling like the doctor didn't really do anything. He examined Rylee's hemangiomas, increased the dosage on Timolol we were already using, and told us to come back in a month.  We were treating the hemangioma itself, trying to shrink it, but we didn't have anything other than Vaseline to treat the ulcer.

This time, I left feeling so much more relief, knowing that we would finally be treating the ulcers.  I realize the hemangioma is at the root of this entire issue, but it is the ulcers that are causing her so much pain.

The great news is that they aren't infected.  Huge relief there.  The other good news is that the big ulcer does have new skin forming and starting to fill in the ulcer, based on the treatment we were already doing.  It didn't stop the new ulcers from forming, or the original one from hurting, but at least it was starting to finally fill in with new skin.  I know it's going to take awhile, since the ulcer is so deep and needs several layers of skin.  I want it to be better now, but I know it's going to take time.

So here is the new treatment plan:

  1. We are to apply three different medications to the ulcers.  The first is Lidocaine, a local anesthetic which is used to numb the area.  We can only apply this up to three times a day, and we were cautioned to be sure not to use too much because the side effects can be toxic.  The doctor said it is very safe to use, we just have to be sure to apply no more than the prescribed amount.  Soooooo, even though we can use it up to three times per day, I am opting to just twice.  Not taking any chances there.
  2. The second medication is Silvadene, which is an antibiotic ointment typically used on burns, but has been found to help ulcers.  We can use this every diaper change.  I consulted Dr. Google when I got home, looking up each of these medications, and read that Silvadene is not to be used on premature babies or infants under two months old.  Hmmm....So we used it sparingly that first night, until I had a chance to call up our doctor to ask about this since Rylee was a preemie and also not quite 2 months old.  I was assured that they have been using this medication to treat many, many babies and it was safe to use.  I'm choosing to just trust our doctor. 
  3. Lastly, we are using a thick layer of zinc oxide over the entire hemangioma to act as a barrier with each diaper change.
  4. We are to stop the Timolol for the time being.  I take this as to mean we are making the ulcerations a priority and once those are healed, we will get back to shrinking the hemangioma.

Diaper changes still suck and are still painful for Rylee, but it doesn't seem to be near as bad as it was a few days ago.  This new treatment plan appears to be working as far as decreasing the amount of pain she is in. The ulcers look the same as they did when I took these pictures, shown in my previous post, but hopefully they will start clearing up soon.

I want to thank you all so much for your kind words, suggestions, and the many prayers that have been said on Rylee's behalf.  The response to my last post when I shared in more detail about little Rylee's poor little bum, has truly filled my heart with love, and has made me even more grateful for this blogging community. One gal just happened upon my blog, seeing the post title, "Is This an Urgent Matter?", while reading another blog and being drawn to it. The absolutely amazing part is that this gal has gone through the same thing with her 19 month old son having a hemangioma on his bottom.  She clicked on the link to that blog post and it just so happens that our babies have this unfortunate issue in common. When I opened her email and read that she knew exactly what we are going through....well, I can't even begin to describe the warm fuzzies I felt by her reaching out to me.  She explained everything they had done to help treat her son, offering suggestions of all the things they had found to help.  All I can say is thank you, thank you, thank you!

Tuesday, February 18, 2014

"Is This an Urgent Matter?"

I shared with you in this post, Bottom's Up, about my little Rylee's hemangioma on her bottom and how it is ulcerating.  Well, last Thursday I noticed a few spots that looked new on her bottom.  I was afraid they were the beginning of new ulcerations forming.  I was right.  Over the weekend those spots grew larger and by Sunday evening, there was no question as to what they were.

We already had an appointment scheduled with the pediatric dermatologist for next Thursday, but with these new ulcers growing at such a rapid rate, I decided I needed to at least call in and inform them of these changes.  I also decided I needed to take a few pictures so that I could have documentation of these changes.

So yesterday, Monday morning, I took the pictures and called into the clinic.  Only it was closed for President's Day.  Sigh.  I left a message.

By the afternoon and a few more diaper changes, I decided I wasn't going to wait for the next day. These diaper changes had both Rylee and myself crying.  It hurts her so bad, and it hurts me seeing her in that much pain.  I decided that I was going to contact the on call doctor.

I called back into the clinic, and followed the prompting to speak to the answering service.  The automated voice message directed me to tell the operator that I needed to have the dermatology resident on call doctor paged.

I told the lady exactly what I had been prompted to say, "I need to speak to the dermatology resident on call doctor."

Operator: "Is this an urgent matter?"
Me: "I'm not really sure."  of course I think it's urgent, but would they?
Operator: "Is this so urgent that you can't wait until tomorrow?"
Me: "I don't know, that is why I am calling."
Operator (snide voice): "It's a yes or no question?"

I didn't know what to say.  I was having an internal debate over whether it was so important that it couldn't wait until the next day.  So I hung up the phone.

If it was sooooo urgent that it couldn't wait until the next day, wouldn't I have just taken Rylee to the Emergency Room?  What's the point of having an on call doctor then?  If it was deemed to be that serious, I doubt I would be messing around with a phone call.  God forbid I disturb the doctor that was getting paid to be on call, for something that might not be that URGENT.

I was already upset because of my worry for poor Rylee's bottom and the amount of pain she is in, but now I was upset because this lady was so fricking rude!  I texted the picture to one of my good friends and then I called her to vent.  She had just seen Rylee's bottom on Saturday, and she agreed that it looked much worse.  My friend convinced me to call back again.  Yes, it IS an urgent matter lady!

So I called back, only this time I got a different operator that didn't question me for calling on a holiday.

The doctor I talked to wasn't someone I knew, but he listened to what was going on and asked questions.  He told me that it is unfortunate that as these hemangiomas heal, they do go through this ulceration stage and it is painful to have to watch.  He asked me questions, trying to determine if there is a possible infection.  We talked about what we've been doing to treat the ulcer.  I told him how much pain Rylee has been in.  I also told him we have an appointment scheduled for the 27th, but that seemed like a long ways away with the rapid pace that these new ulcers were developing.

He told me he wanted to contact one of the doctor's that have been working on our case, and then he would call me right back.  He wanted me to text him the pictures I had taken.

When he called back, he asked if I could bring her in the next day.  They would be doing the same thing they would have done on the 27th, but felt they should probably check it out sooner.  The biggest thing is that they will be checking for infection and determine if they need to make any medication changes.

This is a busy doctor's office.  It usually takes several weeks to get an appointment and they wanted to get her in the NEXT DAY.  In my head, I was smirking at the snarky operator lady. Apparently they DID deem it an urgent matter, (fill in bad name calling here for the operator).

My sweet Rylee
Okay, now I'm going to share the pictures I sent to the doctor of her bottom.  I'm going to scroll down a bit before I post the pictures, so that if you are one that gets grossed out easily and don't want to see them, you can sign off now.

Original ulcer - it has stayed this size pretty much since she left the hospital

The new ulcers that are joining in the not so fun times

Now you see what we have been dealing with.  And yes, I DO happen to think it is an urgent matter.

Tuesday, February 11, 2014

Due Date and Other Tidbits

This past Saturday, February 8th was the babies official due date.  It's a little weird to think about that being their due date when they were in fact, 6 weeks, 5 days old already that day.  Crazy how two little beings can take over our lives and rule the roost in such a short amount of time.  Here's a few recent pictures of their cuteness...

Other Random Tidbits:
  • I should have put this in with the birth story, but I forgot.  It definitely is worth sharing though, as I thought it was pretty special.  The day after the babies were born, I was an emotional mess.  I was still on The Mag (ugh), I had just had a c-section, and I couldn't see my babies.  In the midst of all that, Hubby gave me a necklace with the babies birthstone.  I knew he had spent one night researching what their birthstone would be while we were hanging out in the hospital.  Little did I know that he also went out one day and bought me a necklace.  He doesn't do this sort of thing very often - I think mostly because we really can't afford it, because he actually does like shopping for me.  I haven't worn the necklace yet because I didn't want to in the hospital and now because I don't want the babies to grab hold and break the chain.  Also, I am living in sweats (the only thing that currently fits me).  One of these days I will actually wear real clothes and put on the necklace.  Maybe I should wear it tomorrow just for fun...

  • The other day my blog achieved 100,000 pageviews.  This blows my mind!  As of right now, there have been 102,416 pageviews.  This is my 150th post, and I have 69 followers.  My most read post is An Early Arrival with 1156 pageviews.  Say what???  I cannot even fathom that so many people have read that single post.  It is also hard to comprehend that my little ol' blog has so many people reading it, period.  It's hard to believe that my life and what I have to say can be so interesting to all of you and worthy of your time.  So with that, I want to say thank you. Thank you so much to all of my readers.  I consider so many of you true friends.  When I started my blog, I had no idea the friendships that would be made.  Thank you for all the comments you have left, the advice given, the support, virtual hugs, the love.  If you have been following my story and have not introduced yourself yet, please do!  I would love to get to know you.
  • Speaking of... While in the hospital, one of the nurses asked me if I had a blog.  Whoa.  She thought I looked familiar, knew I had just given birth to twins, and put two and two together.  At the time when she asked me about it, I was so totally blown away (plus I guess I had a lot of other stuff on my mind) that I didn't really stop to talk to her much about it.  She told me she likes to read infertility blogs.  I was speechless that mine was one of those that she follows.  To that nurse, if you are reading this now, first of all thank you for your service as a nurse.  Second, it meant so much to me that you recognized me from my blog.  Thank you for telling me.
  • During my time in the hospital and with the babies in the NICU, I got way behind in my own blog reading, but I am now almost caught up!  I was behind 3 whole weeks, but now have it down to just the last 5 days worth of posts to read.  Whew!
  • Totally switching gears - I told you these were random tidbits!  This past weekend we got So. Much. Snow!  We had a foot of snow at our house.  In all my life, I sincerely can't remember getting that much snow here in the Willamette Valley.  It started on Thursday afternoon and continued through Saturday.  The only sad part was being house bound and not being able to go out and play in it!  I can't wait for the babies to be older and being able to take them out to play.  I did leave the house long enough to take a few pictures...
View from our house.  This was Friday, about half way through the storm.

Our house

Hubby had to do some shoveling so he was able to go to work on Monday.
By Monday afternoon the temperature was almost back up to 50* and it started to rain, so now the snow is rapidly disappearing.  With that much snow and the warmer temps, in addition to the rain we are supposed to get this week, I won't be surprised if the Valley will now flood.  Thank goodness we are not in a flood zone ourselves. 

I am now being beckoned to go change a diaper and feed a little one, so I must go!  I love my new job :)

Saturday, February 8, 2014

Bottom's Up

Family and friends ask about the babies all the time.  When we tell people that they are both doing great, except for a birthmark that Rylee has developed, it tends to get brushed off.  A birthmark?  Pshh.  That's no big deal.  I admit that's what we would have thought too, except...

It kind of is a big deal when it's on your bottom, an area full of bacteria on a constant basis.  

About a week after she was born, we noticed a reddish spot on her bottom.  Everyone (us, doctor, nurses) thought it was diaper rash, and we started treating it as such.  A few days later, it got bigger.  Another day later, I was changing her diaper and I thought it was even bigger and looked concerning.  The nurse contacted the doctor.  As it turned out, the diaper rash was actually a hemangioma.

Hemangioma: A benign tumor made up of blood vessels in the skin or internal organs.  It usually appears within the first few weeks of life and continues to grow throughout the first year, but then starts to shrink and mostly disappears by the age of 5.  Sometimes there may be a faint scar remaining.

Although the word tumor freaked me out a little, I thought, okay.  A birthmark.  If she's going to have one like this, it's in a great place.  Nobody can see it.  But then the doctor wanted to order an ultrasound for Rylee, because apparently hemangioma's can also grow internally on the organs, which then is a major concern.  Okay, freaked out again.

The ultrasound came back fine.  The doctor's words were "unless she wants to become a butt model when she gets older (because it might leave a little scar), she will be okay."  So we relaxed and didn't worry about the hemangioma.  She better NOT want to be a butt model!

After a few more days, it became apparent that this particular hemangioma was going to be a bit more troublesome than first thought, again, because of the location.  It was becoming rather large.  Hemangioma's don't just grow on the skin surface, but also grow outward and become raised.  Now the concern was that it might continue to grow in a way that could impede her bowel movements.  The other issue was that she did in fact develop a little diaper rash on the hemangioma itself.  This spot of diaper rash started to become ulcerated.

The doctor contacted the wound care department at this point.  Now that the hemangioma was ulcerated, we couldn't simply treat it with Aquaphor or Desitin.  We also couldn't just wipe her as you normally would. Diaper changes became quite the process.  Now we had to place a chuck's pad underneath her, squirt saline water on her bottom, and pat her clean instead of wiping.  Then we put Stomahesive powder on the ulcer and cover it with Vaseline.  The powder and Vaseline form a paste that fills the ulcer, which is basically a hole in her little bottom.  The idea was that this would keep any urine and feces from getting in the hole, allowing us to just pat the top layer clean.

The hemangioma kept growing, as they said it would through her first year, but the hole was also getting bigger.  The doctor took some pictures to send to a pediatric dermatologist up in Portland at OHSU (Oregon Health Science University) for evaluation.

They decided to prescribe a medicine called Timolol, which is actually a beta blocker for the eyes, but they have found it to help shrink hemangiomas.  This is a topical medicine in a liquid gel form.  We started out putting one drop on the hemangioma twice per day.  There is also a systemic medicine that can be taken orally that does the same thing, but because of the potential side effects and the fact that she was a preemie, they opted for the less potent Timolol.  Both medications have the same side effects, but because the Timolol is topical, it's not as potent.  Side effects include bradycardia (decreased heart rate) and low blood pressure. They wanted to start the medication while she was still in the hospital and on the monitors.  She didn't have any problems with the medication, thank goodness.

Now that Rylee is out of the NICU, we have to continue being diligent about keeping the ulcer clean to try to prevent infection, and applying the medication.  We were told that it is pretty much a matter of time before it gets infected because it's in such a high bacterial area.  Her pediatrician will continue to monitor for infection, but Rylee also has to see the doctor at OHSU, which is the only place in the entire state of Oregon with a pediatric dermatologist.  Actually, Tony looked it up.  OHSU has the only pediatric doctor this side of Denver.  I'm very thankful that we live only an hour away from them, considering we have to make the trip at least once a month.  They have increased her Timolol dosage to two drops, three times per day.

Diaper changes have become a pretty traumatic event in our household.  Our poor little girl screams her bloody head off for every diaper change, but most especially when she poops.  She basically has a crater eating away at her bottom.  Look at your thumbnail.  That is about the size of the ulcer, which on her little bottom is actually pretty big.  Since we've been home, the ulcer has gotten a little bigger and continues to get a little deeper.  The hemangioma itself covers almost her entire butt cheek, but that's not the problem.  The Vaseline sometimes works to keep the hole covered up, but it seems that most of the time we end up having to dig the poopy out of the hole. We try to be as careful and gentle as possible, but we know that it hurts her terribly.

Last week I ended up calling the dermatologist because it just seemed to be getting so much worse.  The Timolol appeared to be working, but it is only treating the hemangioma, not the ulcer.  It seems like we are doing nothing to treat the ulcer itself.  I also thought that maybe it was getting infected.  I kept noticing a foul smell every time I changed her and it looked like there was maybe a white spot developing in the ulcer.  She was also getting more and more cranky.  The doctor prescribed a 7 day antibiotic for her over the phone.

After being on it for a week, I do think it helped the infection, but it hasn't helped her crankiness or pain level.  She is a very fussy baby.  And fussy is kind of an understatement.  I guess I don't blame her.  It looks so incredibly painful.

I called the dermatologist again today, just to confirm that we should stop giving her the antibiotics now that we've run the 7 day course.  They said to keep monitoring for infection.  If she gets a fever over the weekend, we need to take her to the ER.  Otherwise, keep doing what we are doing.  Our next appointment with them is at the end of the month.  At that time, there is a very good chance they will change her medication to the systemic/oral beta blocker because she will be older and a little bigger (but still a baby!).  That is a little scary to me.  We won't be in the hospital hooked up to monitors this time around to know how the meds effect her heart rate and bp!

I don't want to rush this baby stage of her life, but I told Tony last night that I do want to skip forward to when we don't have to deal with this ulcer anymore.  I love the baby cuddles.  It's one of my very favorite things in this world, but I don't love never being able to put her down.  She almost always cries once we put her down.  A lot of times she will cry scream for maybe 30-60 seconds and then just suddenly stop, so sometimes we let her cry through it.  But then she usually does this every 5-10 minutes, so she is not getting a good solid sleep at all.  After every poopy diaper, we need to hold her just so we can comfort her. Sometimes it takes awhile to calm her down.  Occasionally, she gets so worked up that she spits up what seems like her entire last feeding.  Sometimes we have to just let her cry because her brother needs fed, or it's his turn to be held.

I hope there comes a time when this is all behind us and she becomes a happy baby.  I hate to think how this is forming her personality for the future.  I worry about how this may effect her development.  I hate having to give her medicine at such an early stage of her life.  I want to be able to snuggle her and play with her, instead of constantly needing to comfort her.

I hate to rush through this stage of her life, because I know it will all pass us by so quickly, but I really would like to skip ahead so she isn't spending so much time in what seems like constant pain.  The thing is, if any adult had this kind of ulcer that was eating away at them and looked like hamburger...I'm not sure how a grown person could handle it either.  She's just a little baby!

She has another hemangioma on the back of her neck, between her shoulders.  It is much smaller, but will also continue to grow through her first year.  She has a few other specks on her body, but they don't amount to much at all.  None of these are a concern and will eventually go away.  The one on her bottom will too, but unfortunately it's developed this darn ulcer that we have to contend with in the meantime.

At least I shouldn't ever have to worry about her being a butt model.

Tuesday, February 4, 2014

Six Days Short of A Month

25 days.  That's how long I was in the hospital.  I was in antepartum for 6 days and the babies were in the NICU for 19 days following their birth.  During those 25 days, I left the hospital a total of 2 times.  That's it.

I was very fortunate that the hospital I delivered at allows parents to have a boarding room if there is a room available.  When I was moved to the Mom/Baby unit, they put me at the end of the hall so that when I was discharged, I could stay in that room.  Depending on how busy they got with deliveries, that room was mine unless it was needed.  Then I could maybe get bumped to the Pediatric unit that was in the same building.  If the Pediatric unit was full, they would try to put us in a family unit in the NICU.  If there were no family units available, I could camp out with our babies.  They would bring a couch in for us to sleep on if needed.

In exchange for a free boarding room, they simply ask that you attend a minimum of 5 out of the 8 care times for our babies.  Between Tony and myself, we were with the babies almost round the clock.  I was not at all comfortable with going home to sleep in my own bed and leaving the babies there by themselves.  Even though I wasn't staying in the NICU with them, I was only a phone call and a short one floor elevator ride away from them if something were to happen.  We only live about 25 minutes away from the hospital, but it was important to Tony and me that one of us was in the building with them at all times.

We managed to stay in the same boarding room the entire time we were there.  I was given a warning two times that it was possible I might get bumped because they were filling up with moms and babies.  However, I was told that we were the last on the list to get bumped because we spent the most time with our babies out of all the boarders.

Tony slept on the couch in my room almost every single night.  He went home only once per week, usually on Sunday night, to get clean clothes and to get a good nights rest so he could function at work.  He wasn't very comfortable on the hospital couch, but he wanted to be with his family.

The babies care times were every 3 hours and we were at most of them.  We would change their diapers, take their temperatures, and help with the feedings.  I tried to nurse them almost every time, followed by pumping.  If I wasn't at one of the care times, usually the middle of the night ones (although I was at some of those too), I would be in my room pumping.  Then I would take my expressed milk to the nurses station for them to send down to the NICU.  The schedule was grueling, but we also had the help of the nurses, which was a huge blessing.

I lived in pajama bottoms and a button up flannel shirt for easy access to nurse or pump.  I wore slippers everywhere because my feet were still so swollen I couldn't fit them into shoes.

Christmas came and went and we barely even noticed.  We rang in the New Year with our new little family. We almost missed that too!  We were at the midnight feeding with the babies and were so engrossed with them that the time just slipped by.  When we realized it was a few minutes past midnight, we wished each other and our nurse Happy New Year and kissed our babies.

The nurses caring for me in antepartum were so extremely nice.  They did everything they could to make sure I was taken care of and as comfortable as possible.  The nurses on the mom/baby floor....not so much.  The first nurse I had was not very nice at all and scared me more than anything.  She almost made me have another IV put in, even though they were going to discharge me the next day.  I absolutely HATE having IV's put in!  I didn't see the point.  If they thought I was recovered enough to be discharged, why the heck did I need an IV just in case something were to happen.  She told me I could take a turn for the worse at any time because of the preeclampsia.  Then why was I being discharged?  I made her ask the doctor if I absolutely had to have the IV put in, since I wasn't getting any medicine through it and it was for just in case.  I won that battle.

Most of the NICU nurses were amazing!  We only had issue with one of them.  Tony and I both didn't like her.  She had me in tears one day and I told Tony that there was no way I could handle having her again!  All the other nurses taught us different things about our preemie babies without talking to us like we were teenagers. They also asked us what WE wanted to do with our babies, how WE wanted to care for them, but she TOLD us what we needed to do rather than asking.  The other nurses wanted us, as parents, to have a say in how they were being taken care of.  This particular nurse literally treated us like we were 16 years old having babies. It was awful.  We did end up talking to the charge nurse, requesting that we didn't have her again.  We told the charge nurse that we hated to be "those" people that complain, that we weren't interested in getting anyone in trouble or causing problems, but we really didn't connect with this gal.

The first day I left the hospital, I made a trip home while Tony stayed with the babies.  I'd been there for three weeks at that point and missed home!  Going outside into the fresh air felt amazing!  Driving home was stressful.  I drove so slow.  It's amazing how your perspective changes when you have your own babies.  I prayed the whole time, "Lord, please don't let me die in a car accident now!"

Once I got home, I went through all the mail that had piled up, paid the overdue bills, got some clean clothes, and noticed all the things that needed to be done!  Our house was a mess!  Neither one of us had been home in forever so the dust bunnies were collecting, the floors needed mopped, bathrooms cleaned, dishes done...Yes, Tony had been home a few times, but he always left the hospital really late and left home early the next morning to go to work.  He didn't have time to do any of that stuff either.  I didn't feel any better having gone home.  Actually, I felt even more stressed that we wouldn't be going home to a clean house.  But the bills were paid.

*Note - Tony's mom hired a house keeper to come in before the babies were discharged, so we did actually have a clean house welcoming us home!

The second time I left the hospital was for a follow up appointment with my OB to check my incision.  This was the only time in all of those 19 days, that nobody was at the hospital with our babies.  It was only a few hours, but it was still a little unnerving.  They were so little!  What if something happened and we were needed?  Of course our concerns didn't end up being necessary, but still...

When we were close to going home from the NICU, we were transitioned into a family room.  Prior to that, the babies were just in a curtained off room.  The family room had a private bathroom and a small closet, as well as a tv and a pullout sofa bed.  However, put two isolates in there and it was an extremely cramped space!

The idea behind moving into a family room is that it is supposed to help prepare you for going home. Basically, we had to prove we could take care of the babies.  We spent three nights in the family room and those were some difficult nights!  The nurse came in to check on us, but we were basically on our own. It was extremely challenging to suddenly be "on our own" in such tight quarters, with the babies hooked up to machines, and not really knowing what the nurses wanted us to do and not do.  Not to mention the alarms that would periodically sound, indicating that one of their heart rates dropped.  Sometimes this was a real alarm and they just needed to be jostled, reminding them to breathe, most times it was a false alarm.  The nurses never seemed to think it was a big deal, but it's pretty terrifying if you are their parent!  How the heck could we be taking them home?  We don't have those high tech alarms at home telling us that their heart rates had dropped or they weren't getting enough oxygen!!!

They told us we would most likely be going home on a Sunday, but first thing that Saturday morning, the doctor came in and asked us if we'd like to go home.  I think MY heart stopped.  Tony and I just looked at each other.  Both babies had gained enough weight consistently and the doctor said they were ready.  They just needed to do the hearing test and pass the car seat test and we were good to go!

It ended up taking the entire day to get through all the necessary stuff for the babies to be discharged, but by 7:00 that evening, we were on our way home with our take home babies.  We have managed to keep them alive, all on our own without a single monitor, since Saturday, January 11th!