Saturday, January 26, 2013

The Hemangioma Adventure

I am happy to report that Samantha is doing rather well! Her mood is great and the incision doesn't seem to be bothering her much. Which is great. It still looks painful but now she is just on Tylenol every few hours instead of the Tylenol with codine that they were giving her in the hospital. We are all still pretty exhausted. I took a 6 hour nap today and I still feel like I got hit by a bus. My poor husband got called into work overtime at 4am due to icing, but he was able to take a nap this afternoon when my MIL watched the baby. And Samantha took a 3 hour nap at my in-laws! I remember when I standing over Samantha's hospital crib right after the surgery rubbing her head and holding her hand and thinking how blessed we are to have a healthy little girl. Yes, the NICU was a pretty rough time for us, but thank God she was able to come home to us with a clean bill of health. It just got me thinking about all the parents who have terminally ill children who are in the hospital day in and day out. I cannot even imagine. So, even though the last few days were pretty stressful and rough, I need to count my blessings that she came through just fine and we are back home safe and sound.

I thought I would do a little history on Sam's hemangioma, since I have been getting a few questions about it. When she was in the NICU, right after birth there was a whitish spot on the base of her neck. At first, her doctor's thought she might have ashleaf (sp?) syndrome. But it turned out to be a hemangioma (which is an abnormal collection of blood vessels) as it got more red and bigger in size as the weeks passed. Hemangiomas can be anywhere on the body and range from teeny tiny to really really big. Thank goodness her was not in a spot where it would have affected her vision or anything like that, but many children get them on their faces near there eyes. Generally, if a hemangioma is not in dangerous place it does not need to be treated. As, most of the time they shrink on their own within two years or so. However, Sam's had grown so large that the doctor's didn't think it would heal very well. So we made the decision (not so lightly) to have it removed now as opposed to when she was say 4 or 5 and would know what was going on. Hemangiomas can also be treated with a certain blood pressure medicine, but the child has to be monitored closely. It can help to shrink the hemangioma. But we chose to just have it removed. She also has one in her liver that is being monitored, but isn't causing any issues. She also has one on her wrist and ankle and one above her little butt. But those one looks like a little red pen dot, you can barely see them and they haven't grown.

They say hemangiomas are more common is low birth weight babies, especially girls. However, boys can definitely get them too. I actually had a very small one on my back as a baby but it was no where near as big as Sam's and mine went away rather fast.

I have to say that I am so glad we went to Boston to have this done. We actually were not at the children's hospital but at Mass Eye & Ear which is attached to Mass General. They have a new pediatric wing and everyone there was SO nice. Our surgeon was the creme of the crop and all the nurses and staff were just amazing. They really made us feel like Sam's surgery was the only one going on that day. They even had a Child Life Specialist with me in the holding room before surgery. Her only task was to make sure I was okay and to play with the baby. I want her job! They would only let one of us in the op room with her as they were putting her to sleep. They warned me of what I would see and I was getting pretty anxious. I could feel the tears welling up behind my eyes for about an hour before we even got in there. They told me they would put a banana flavored mask on her to put her to sleep and they start the IV after she was out so she wouldn't feeling anything. Which I was grateful for. They told me that her eyes may roll back and her limbs might twitch and her breathing may be irregular at first. I was terrified but they really all helped me pull through. I held her hand and everyone in the room started singing the ABC's to her (that's her fave song at the moment)  as they put the mask on her...and then it happened, she stopped crying..her eyes rolled back...and my tears started falling all over the place! I lost it and then the nice Child Life Specialist quickly ushered me out. Might have been the toughest moment of my life, next to leaving Sam in the NICU. It was scary but I knew she was in the best hands.

My parents had driven out that day to be there to support us, which was so nice. Helped to take our minds off things for a bit. The surgery took almost 3 hours. And you better believe we booked it to recovery when we got the call she was done. I was frantically looking around in recovery when I heard a nurse ask if I was Samantha's mom. The nurse was standing over a bed, with what looked like a little pile of blankets. I couldn't even see her. But as I got closer, there was her sweet face. She looked like a littler angel cherub sleeping on her side. There was an oxygen mask laying near her mouth but not on her face. The nurse then showed me the incision I gasped out loud as it looked pretty awful. Much bigger and scarier than I expected. Her pediatrician had warned us that it would look pretty scary for awhile but that over time it would heal up nicely. But the incision went from about shoulder blade to shoulder blade. The surgeon said that the hemangioma was pretty deep and was starting to grow out to the sides as well as straight down. Luckily it had not reached muscle yet, but if we hadn't done the surgery it could have eventually reached muscle and cause other issues and discomfort, so we are glad we decided to just get it done. It was so cute because a few minutes later when Sam woke up she was so cute looking around all dazed and confused :) She snapped back pretty well. Although, did vomit after trying a bottle a little later on from the anesthesia. She has an IV in her foot all night when definitely made it hard to hold her or move around or even change her. And the poor little thing, they had a hard time finding a vein, so they had to do a lot of poking. She has little needle pricks on both hands, behind her knee, and then they finally got one on her foot :( Thank God she was asleep for that. In the NICU, she had blood taken from her head one time which almost made me pass out. THAT was awful.

We were discharged on Friday morning. They had to give her a neb treatment Friday morning because it sound like she had some junk in her lungs. Which they said could have been aggravated by the breathing tube. I'm hoping it was that and not a new illness coming on! But she seems to be better now. Poor little thing slept the whole way home (and so did Momma!) :) We have to drive back to Boston this Saturday for a follow up and then he wants to see her a month after that as well.

Here are a few pictures of the hemangioma before surgery and the incision after. I warn you the incision looks pretty bad but it already today looks much better than this picture!

Before pic- as you can see it's pretty big and had some bulk to it...

Afer pic-The vertical line in her skin is just because she's twisting to the side, but as you can see the horizontal incision looks pretty bad. Poor baby :(

We are so happy to put this behind us! I will post more pictures of her incision as it heals!

Thank you all again for your well wishes and prayers xo

Thursday, January 24, 2013

Surgery is over!

Thank you all for your kind words and prayers! Samantha is out of surgery after 2 1/2 hours! She did great. Got sick though after trying to eat :( Poor baby girl. Incision looks pretty bad :( She is sleeping now, will post more about it in a few days!

Tuesday, January 22, 2013

Bye Bye Hemangioma

So, it's set people. She was cleared today for her surgery on Thursday. The hemangioma will be no more. There will be a big scar for awhile, but that will fade over time. We are pretty nervous but just want it over with! We leave for Boston tomorrow afternoon and her surgery is Thursday morning. We'll stay overnight in the hospital and return home on Friday. Any prayers are appreciated! Thank you!! :) Will update from Boston on Thursday if I can...

What's cuter than a baby in a mini bathrobe?  Nothin'. :)

Saturday, January 19, 2013


Does anyone else have moments when they feel like they are barely getting by? And I mean it terms of the day to day stuff. I know this is all part of having a busy little baby at home, but geez most days I feel like I am just getting by. There is never enough time in the day. I look around here and this place needs a deep scrubbing, the closets are overflowing with stuff that needs to be organized, and our live Christmas tree is still up! I know I can't let myself get overwhelmed. I constantly try and remind myself to "Chill have a baby to take care...she comes and everything included...last." I guess I just want to be supermom. I want the house to be spotless. The closets perfectly organized. A clean happy baby. And me looking like a million bucks! Ha. Just one of those is a reality...the clean happy baby :) The most important task. I just look at myself in the mirror and I look like hell. I am so tired all the time, my wardrobe in a disgrace, and my hair...well it's falling out (at a rapid pace) and my roots need to be done (like two months ago)! Not to mention, lots of weight to lose..

Samantha's closet needs an overhaul again. Every few months, I'll go through and clean it out...take out the clothes that don't fit and reorganize things. I've been wanting to do this again for about a month now but when I get just a little free time I want to use it to nap since sleep seems more like a priority. Her closet right now is about 85% jam packed with clothes that don't fit her anymore. And by jam packed I mean you know when there is so much hanging there that you can't even tell what's in there and there are like loose hangers poking out everywhere! Total pet peeve of mine too! ha. Every morning when I go to get her dressed, it's like I forgot that none of it fits her, but there's so much stuff that it's deceiving to the eyes!

And the kitchen. Oh, the kitchen. The pots and pans cabinet...well let's just say that every time you open the door all the contents come spilling out in a loud crash. Always a pleasure. The pantry is a nightmare. I finally managed to make the top shelf all of Samantha's foods. But the rest of shelves looks like a bear was rummaging through it.

Our dining room table, looks like an office and a pharmacy threw up on it.

The bathroom. Don't get me started on the rash I have on my forearm from leaning on the tub giving Sam a bath. Yes, I know, completely gross and unacceptable. Sam gets bathed in a baby tub inside the big tub..but still. I mean it's not like you can see the grossness, but there must be some kind of funk going on in that bathroom if I get a rash just from leaning on the side of the tub. I warned you people...barely....getting by...

And our laundry pile is almost as tall as me. Which is gross. But mind you I am like 4'11. But still gross. And that's our stuff...Sam has her own basket...


Like I said, I know I need to chill the hell out. I am a new mom. Even with help from the hubby, I still feel like things are a mess. Someday things will be running a little smoother. Maybe? :)

I have set small goals for myself in terms of accomplishing things. Yet, even those seem hard to meet. I'm sure some people think you are home with her all day, why is it so hard to get some of these things done? Well, it is hard. She doesn't really nap well. So it's not like I can say "Oh, during Sam's two hour nap today, I can organize the closet."

As I was sitting on the floor the other day and playing with Sam, I was thinking of all the things I needed to get done around here. But then I reminded myself that I was doing the most important "job" of all. Sitting with my baby daughter. Playing with her and watching her learn new things. There was no where else I needed to be. Everything else can wait.

And I know this. That years from now it won't matter whether the pantry was organized, that won't be my memory. My memory will be how much Sam loved it when I sang the ABC's and how she has this cute little dance move to go along with it. More like a butt/body jiggle. But it's adorable :)

Sometimes I wish I had a cook and a housekeeper. Don't we all.

I know it's important for me to take care of myself too. One of my new year's "resolutions" was take care of my health. Follow through with doctor's appointments and get more exercise. I might ask for a treadmill for my birthday. I also made a resolution to put more pictures up of family and friends. I have so many pictures I want to display! It just seems to become a major project, printing the pics, getting the frames..etc. But I have to get on all of this!

 I know there must be many of you out there feeling like you are barely making it, too. So if you are one of them...let me I really don't feel alone! Ha.

Friday, January 18, 2013

Sicks and Stones...

Yes, "sicks" and stones instead of "sticks" and stones :) Why you ask?

Because the sickies are still floating around our house. I think this cold is moving to my chest which is not a good thing. Samantha seems to be doing okay but she is coughing a lot only in her sleep and sneezes quite a bit during the day. Still nervous about what is going to happen next week with the surgery. We have a final appt with ped on Tues to see if she is cleared to go.

You know that phrase "when it rains, it pours"? So true for us always! My poor husband left work early today with excruciating pain in his stomach. Ended up in the ER. He has two kidney stones! Poor guy. I just feel like it's one thing after the other!

So far, I am not a big fan of this month. All this sickness stress has me craving a cupcake.

Thursday, January 17, 2013

Full circle

I got a random email the other day from someone. I will call her "A." She wrote me because she had stumbled upon my blog and she said that she just wanted to let me know it was an inspiration to her. How sweet, right? :) She also saw that we live in the same area! "A" does not have a blog but she is going through infertility treatments right now. And it turns out she is going to the same clinic that I went to! Craziness! It really is a small world. It got me thinking about how things have come full circle for me. At one time, I was the one reading up on blogs and looking to other people for inspiration to help me get through it all. And now I sit here typing this while watching my sweet baby girl on the monitor. I am finally here. I am finally at the place I wanted to be. The place my heart hurt and longed for year after year. It's so nice to hear that this open space where I write my thoughts and all things Sam, is an inspiration to someone. Especially, since lately I feel like I haven't been much support to the girls who are still fighting the fight. "A" seems super nice and we are hoping to get together soon.

It really does make me feel happy to try and help those who are still struggling. This is one of the rare times where I can say "I know exactly how you feel."

It feels good to pass the Hope on to someone...:)

Tuesday, January 15, 2013

I've taught her to share...

COLDS! :-/

My poor little girl was fighting some type of cold this weekend. Started with a low grade fever, occasional dry cough, sneezing and just super clingy to me. I felt so bad for her. We gave her Tylenol, but the fever seemed to go up a little and by Saturday it was gone. But then Saturday night started again and on and off on Sunday. We thought it could be teeth, but she never got a fever with the other 5 teeth so I really thought this was some sort of cold. Her temp never went over 101.4 but it still was scary. Especially, because I am super  nervous about her getting RSV :( By Sunday she seemed back to her old self, but then I started feeling crappy! And by later on Monday I was a mess. Awful head cold. I guess I should be grateful that this is our first real sickness since the "sickness season" started. When I was working I was sick all the time! I'm just praying this stays a head cold and doesn't go to my chest. Since I have asthma, when a cold goes to my chest it's all over! Bronchitis, antibiotics and neb treatments for me usually. I remember around this time last year when I was pregnant I was SO sick the whole month of January.

It is so hard being sick when you are a Mom. I mean it's hard in general, but it's been brutal since Sam doesn't sleep much. So the sleep deprivation combined with having a bad cold makes for one not too pretty picture. Especially, like just now for instance, she was crying in her crib and I went to go pat her back to sleep and it was so tough because I had to sneeze so bad and there was all kinds of stuff dripping from my nose. So I had to make the executive decision to either keep patting her and get her back to sleep or quick run and sneeze in the other room and get myself a tissue! The patting won out.

I am worried that Sam will catch this cold back. I mean I am around her 24/7 so the odds are not good. And what's REALLY not good, is that we are supposed to leave next Wednesday for Boston. Her surgery is scheduled for Thursday. My husband spoke with the doctor out there and he's worried that she was sick over the weekend and wants her to have another check up with her ped a few days before the surgery just to make sure she is okay. Because if she is in any way sick, they won't do the surgery. Being under and being sick..don't mix..and could cause major or even fatal complications. So of course we are terrified about this! And if she is sick at all, we do not want to risk it. I am worried about sharing this cold I now I have with her! I'm praying she is still healthy by next week, because we really just want to get this over with. But at the same time, we don't want to take any risks. So we will see what happens. And of course we are going to be driving into Boston, which is like the flu capitol of the world right now. Ugh.

So, if you pray, please say a prayer for Sam that she stays healthy and doesn't catch my cold! Thank you!

Today is also my Nana's 91st birthday! AMAZING! Happy Birthday Nana! We love you!

Monday, January 14, 2013

Cheerio Lover

My girl loves her Cheerios! You think I could send this pic into General Mills in the hopes that they will use it for a campaign, in turn paying for Samantha's college tuition?? A Mom can dream, right? :)

Thursday, January 10, 2013


Check out this month's issue of Glamour Magazine! A fellow IF blogger (and her sis) are in it! Pretty cool...

Tuesday, January 8, 2013

10 Months!

Sweet Baby Jesus, how is it that my princess is 10 months old!!?? Someone, please explain it to me....

Samantha's likes...

-Food (Pureed peas, blueberries, pears, yogurt and sweet potatoes. Those Mum-mum rice husks, yogurt melts and her new favorite cheerios!
-Any toy that lights up and sings. She's a big fan of her ball popper and this stroller flower toy that she has.
-She loves to jump/bounce.
-She's going to crawl any day now! She's been scooting herself everywhere (backwards)  and we can tell she just wants to get MOVING. Uh oh...bring on the baby proofing...
-She loves being outside! Even the cold air she likes! I think I have a future "outdoors" girl on my hands! Which is great :)
-She really is a very happy smiley baby, except sometimes she'll get shy and quiet around new people or large groups. Usually takes her a little bit to warm up. She can definitely break out the "diva" expressions wants to!
-Loves bath time! Which I really need to up the experience for her with some new bath toys and such!
-Still loves her Elmo! But the love isn't as intense as it once was!
-She enjoys Mommy singing silly songs to her and dancing! And being up on Daddy's shoulders!
-No real words yet. But A LOT of babbling/"talking" going on! She was SO loud in church the other day :)
-Still just the 5 teeth!
-Takes 6-7 oz bottles about 5 times a day. Twice a day she eats solids.
-She weighs 15.8 pounds and is 25 3/4 inches short long! Still our little peanut!

Samantha's dislikes:


Still a work in progress. We started a new routine a few days ago so hopefully in a few weeks we might see a difference. Basically I am not rocking her with her nighttime bottle, only patting her back to sleep when she wakes in the night (which is tough because it doesn't always work!) and we are trying to get her attached to a lovie. Light music instead of Sleep Sheep. We also our trying a little bit later bedtime. She still takes a middle of the night bottle. In a nutshell, Mommy is VERY tired! But I know this too shall pass and someday we will all sleep. Maybe...

What's coming up:

-Her surgery on the 24th :( I'm in denial about I think...
-Planning her 1st Birthday party!! Also, in denial about it...
-Might start "swimming lessons" in March! Am I going to have to get into a bathing suit? Uh, yikes.

Here are her 10 month photos! I did a theme using the "Ten in a bed" nursery rhyme...

Tuesday, January 1, 2013

"CIO" is a bastard.

Oh, blog friends. I have been meaning to post about this issue for weeks now and I just finally seem to have a few minutes to post more than just a picture. Let me start off by saying that CIO is a bastard. Yes, a bastard. I actually had a nastier word for this (it rhymes with brother lucker) but I couldn't bring myself to type that on here. I'm trying to keep it somewhat classy on here. ha.

So, it has been no secret since we brought our sweet Samantha home from the NICU back in April that she is not a good sleeper. She was SUPER colicky her first three months and then it got better. But still she doesn't nap or sleep very well at night. We've tried EVERYTHING. Changing up schedules, food, bottles, binkies (she hates them!), and I even tried a lovie in her crib with her the other night. Is that a gasp I heard? Yes, I put something in my daughter's crib with her. Yes, I know it's not so safe and we were really nervous about it. However, we have noticed over the last month or so when she is tired and wants to nap or is about to go to sleep she likes to rub a bib or blanket on her face. Almost covering her face a bit. Which freaks us out because of the obvious we do not want her to suffocate herself!! But the other night I decided to put one in her crib and watch her like a hawk on the monitor.

Let me back up and say. She does sleep in her crib, usually all night, occassionally if things get bad we have to come out to the living room for her swing. But she goes down okay at night, the problem is that she wakes up frequently through the night. Usually she wakes up every hour crying until midnight or so and then will usually go a few hour stretch, but then sometimes will up between 3-5 for the day. Sometimes she will shock us and go 7-7 with only waking up once. I feel like it's always changing! And yes we have tried to push her bedtime back, but it doesn't seem to make a difference.

So, back to the lovie the other night. She woke up crying and I watched her as she grabbed the lovie, rubbed on her face and went back to sleep! I was SHOCKED! And then it happened again. She woke up crying, rubbed lovie on face and went back to sleep! I was so excited! But then the rest of the night didn't go as well. She had no interest in the lovie after that :(

We have tried the CIO method. But probably a half-assed version of it. The longest we've let her cry is about 25 minutes. I know, that's probably not long enough in the CIO world. But this is not a little whiney cry. It's a full blown tears, screaming, practically hyperventilating cry!!! It is SO awful. And of course every minute letting her cry like this feels like an eternity. I guess I don't understand CIO so much, because it says to go in every few minutes and just pat them etc. And then to stay away for longer periods. However, this is just worse for my girl. If I go in to pat her, she's gets happy and relieved and thinks I am going to pick her up and then when I don't and walk out, she's just back to freaking out! I've read some articles saying your child should be at least 9 months before trying this. Well Sam will be 10 months in a few days, but she is only 8 months adjusted age. Like tonight for instance, she was super tired, it wasn't like she was raring to go, we did our normal routine, she went down fine. But then about 45 min later she was screaming like a banshee. Tears and everything. I went in, rocked her, put her back down. She woke up ten min later screaming again. I went in rocked her, put her down, she was back out. Ten min later the same, but I tried to let her cry it out for a awhile which did NOT work out!

I will be honest. I used to be the person that would roll their eyes at parents who couldn't let their kid cry it out. I used to think "Just DO it!" But now, that is biting me in the ass. I totally understand how hard it is and how it does not work for everyone. I have had many people tell me " CIO worked for our first kid, but not the second." At this point, we would even be open to co sleeping but she's not really a fan of our bed, I think she likes her own space! So I know the one good thing is that she sleeps in her crib. We have that going for us. But the sleep is sooo sporadic! It's horrible. I don't judge the parents who have let their kid CIO because if it's works then that is awesome!! My sleep is definitely suffering big time and there are times where part of me thinks I should just let her cry for hours. But I can't and I won't. I guess I just see it as I've waited for years for this precious girl and if she needs me...she needs me....I want her to know I will come to her if she needs me! And I know that makes me sound like my kid's b****. Honestly, I think it's because she's a baby and I can't reason with her. Trust me, if she were four I would have NO problem with letting the her "tantrum it out" and not giving in to something. But just seeing my sweet baby's face soaked with tears on the monitor has me running to her!!! I know, I know. Many of you are probably saying I am screwing myself. That it's my own fault that I don't sleep. But for now, this CIO is not for us. Maybe when she's a bit older? I don't know.

She has slept through the night just once since bringing her home. I can't tell you how many times people have said to me "My kids 3 and she doesn't sleep through the night!" That's not helping people ;) I keep telling myself "this too shall pass." I actually daydream about the day she will sleep in and I can get up and have coffee and start my day not in a zombie mode. Even her getting up just once a night is something I can manage, it's just the every hour thing that takes a toll!

I think her main issue is that she has a hard time self-soothing. I wish she would take a binky! I know, what parent wishes for that habit to start?? ME :)

Ok, my CIO vent session is over. And just to be clear I do not think one parent is better than another if they do or don't let their child CIO. What works for some...doesn't work for others...

All I know is that I miss sleep :) My parents got us a new mattress set for Christmas and I don't see much of it...