Can't we get a break?

The first thing that was said about Sophie when she was born: "Wow...she has her daddy's nose" the second thing, "Wow...she has her daddy's full lips!"

We all thought that it was humorous, and when she formed a milk callous from bottle feeding...we thought nothing of it. When Sophie was 3 months old, I panicked because I found a spot on the back of her head that appeared so suddenly I thought i'd bruised her.

I immediately called the pediatrician. They weren't too concerned but said I could bring her in for an appointment if it would make me feel better. I went the next day. The doctor we saw was not our normal one and she wasn't too concerned but made a referral to the vascular specialists anyway. We went the following week and saw a team of doctors who poked and prodded her in a room that was way too hot and caused her to freak out over the amount of strangers present. They told us it was a rapidly disentegrating hemangioma and that it had probably formed inside the womb, receded while inside the womb, and was now reappearing as a bruise-like birthmark. We were sent home with promises to recheck her in a few months and then home we went, researching like bandits.

Fast forward to her 6 month visit. I went by myself because Luis had to work. When I left the office an hour later, I was in tears. The pediatrician was concerned because she had a large lump on the inside of her lip that went back to her gum-line and that wasn't normal. She was also overly concerned because Sophie's head measurements were (and I quote) "off the chart". We'd joked about her having a big head like daddy's side of the family but all of a sudden I felt like a horrible mother for joking when apparently it was a huge medical deal. I left not only in tears, but armed with referrals back to the vascular specialists for her lip and to the neurologist for her head size. I was terrified. I also felt 10,000 times worse because I knew something was wrong with her lip..I knew that it wasn't the normal milk callous but I listened to peer pressure and didn't force the issue because i'm new at this whole 'mama' thing. I thought if I listened to everyone else surely they had children so they were right to tell me I was over-reacting.


sophie-bear's hemangioma.

We went to the neurologist, who we fell in love with immediately. He was intent on helping us, immediately took all the necessary steps to figure out what was going on and he listened. He took one look at Luis and joked that his head size probably had something to do with Sophie's large noggin and that she was perfect in every possible way save for the weird positioning of the hemangiomas and such. He ordered a CT scan, but was overruled by his boss...who wanted to do an MRI to 'save us the trouble'. We hesitated, but were told it was the easiest way to do it so we went with the flow. Her MRI was scheduled for August 18 and we went home once again...so proud of Sophie and her flirtatious nature with the cute doctor. (well, I was proud of her for throwing the shy smiles out, not sure how Luis felt about the doctor being cute in my eyes)

August 18, and I'm a wreck. Sophie had to stop all solids at 8pm...all formula by 2am...and everything by 7am. Guess what, she hates pedialyte. Every flavor (i bought them all) and even the unflavored kind she refuses. I tasted them too, yeah...i'd turn my nose up at that as well baby girl. We pack into the car and start the loooong 45 minute car drive to the hospital. Sophie is tired, hungry, and straight up mad and the poor thing doesn't even fall asleep until we are literal minutes away from the hospital. We get checked in, take her to the back and my palms start to sweat. I'm not used to being the one <not> on the table...it was extremely hard for me to let them do anything to her. Let's talk about the IV process for a moment. The minute that they had me lay Sophie down, she knew something was wrong. Then they wrapped her in a cocoon with one arm out and she really knew something was wrong. If she could say mama...i'm sure at this point she'd be screaming it along with the pitiful wails. They turn out the lights and they start the process. I'll spare you the details, let me just say it was heart-wrenching and I never want to do that ever again. Luis had to leave the room, I stood by her head and held her hand and no amount of singing or soothing could calm her down. When they finally got everything in, they let me pick her up and she immediately calmed. Then, just when I thought things were ok...they started the IV drip of the sedation medication. Sophie flipped. I mean, flipped. She arched her back and fought sleep for all it was worth. They finally had me lay her down and she knocked out...they told us to kiss her and then they wheeled her away. We nervously went to the waiting room, where no amount of reassurement from the other waiting parents could do anything to help ease our sudden fears. Finally we agreed that we were hungry, so we headed down to the cafe and ordered some food. Right as we started to eat, the nurse from upstairs approached us and said the doctor needed to see us.

You know that feeling you get when something is wrong? Holy tingling, batman. We were led right back to the where we started, and found her in the recovery room where we would have gone after the MRI was done. The first thing the doctor said to me: "Hey! Everything is ok...but Sophie stopped breathing several times" 

Oh..but everything is ok. I started bawling. I couldn't stop...even when the alarmed doctor told me that everything was ok over and over again. I wanted to hit her...I know she was doing her job, but it was terrifying to hear that your baby stopped breathing!!! They were nonchalant about it and even though i'm sure they've seen dozens upon hundreds of cases like this...this mama hasn't, so she freaked a little bit. They went on to explain that she had a reaction to the sedation meds and when she calmed down enough for the MRI, she actually stopped breathing for 5-10 seconds at a time. They gave her puffs of air and her O2 levels never dropped..but she did stop breathing. They couldn't even put her in the MRI tube...so all of that torture was for absolutely nothing. She should have taken maybe 30 minutes tops to wake up from the sedation. It took her 3 hours. Luis and I sat by her side the whole time, and those first 3 hours were rough. She kept dropping her breathing and so we'd have to wake her up and piss her off in order to get her rhythms back up. She finally woke up, but the doctors were concerned that she was still hitching her breathing while she was napping. Because of this, they kept her overnight. Our first hospital stay with a baby. She hated it, I hated it, Luis hated it even more. The crib was like a cage...and she barely slept which meant that I barely slept and that Luis grumbled the whole time about barely sleeping. The following morning, her neurologist came by and I hugged him I was so happy to see him. He decided that they could fit in a quick CT scan (like he had originally wanted, but was overturned by the powers that be). I went to grab coffee and Luis & Sophie went to get a CT scan. 

We got good news from the scan. Sophie has extra fluid in between her brain and her skull. That sounds horrible, but it's actually the #1 leading cause of kids with big heads. She's going to be a little clumsy as she starts walking and until she grows into it...but it is 100% normal. We go back when she turns a year old just to remeasure and see where we stand, but after that we should no longer have to see the neurologist for follow-ups.

One problem down, one to go. After several visits and follow-ups with the vascular team, they have decided that the hemangioma on Sophie's lip will need to be removed. They gave us the option of coming back in 6 months and then going no further without surgery or doing the surgery now/when we choose before that 6 month limit. Tomorrow the nurse is calling me back to discuss scheduling it. I'm back to being terrified...she will need complete general anesthesia and the doctor assures me it is an outpatient procedure that will last no longer the 75 minutes and she'll have 1 week of needed recovery at home and then several weeks of swelling to watch over. Given her reaction to simple sedation, can you blame me for worrying?

I just want my baby to get past this, though. This is what she needs and although I think she's gorgeous the way she is, I don't want her to have problems with feeding/eating later on in life because mama was too chicken to let her baby have the surgery she needed early on. One day at a time, and I know we'll get there. This is just extra troubling to me given my open-heart surgeries and medical problems. I'm not used to seeing someone I care for being in that same position. Luis told me "Well, it's good this way, you know what they can expect" I told him that was the problem...I know how it hurts, and how waking up with a breathing tube is scary..and I was 17 and then 26 when it happened to me, so imagine what it's going to be like for my 9 month old!

I'm waiting for an email/phone call tomorrow..here's to hoping I can actually catch some sleep tonight.