My PB + J

{a cleft journey} happy tears

on monday after baking away with child #1 i whisked up child #2 as he awoke from his morning nap. i placed the bottle in his mouth, my brain registered something different, i removed the bottle looking upon his sweet face and happy tears were flowing uncontrollably down my cheek. i remember the first moment i saw his face the day he was born, i cried and cried. he was perfect. i fell in love with his cleft and on february first it was bittersweet to say goodbye. that was until i met him again on that rainy monday morning. his stitches and derma bond had been swept away leaving behind a gorgeous view of a perfect lip. i sat that there bawling. payton asked why i was sad and i told her i wasn’t. just overjoyed at how perfect he is and always was. i just kept staring at him for over an hour, crying, smiling, shouting thanking God for this miracle and our plastic surgeon who i cannot wait to hug on the 24th. his sister exclaiming, i love you buddy, you’re cute. brayden was happy too, he couldn’t stop smiling which was saying a lot after the past few days and the rough patch we had hit. i find myself staring at him as he lay tightly wrapped in my arms, watching his lips quiver, how he pushes his tongue along the inside of his lips. i met my son for the second time this day.

12-days post surgery 

{a cleft journey} surgery day!

okay, let me first start off that this post has an extreme picture/story overload. i need to update the grandparents and of course document how my sweet little boy’s cleft lip and nose repair went yesterday. the day started off great, jim brought me a bottle at 4:45 am brady ate and then fell back asleep. we woke-up around 6 am while daddy was in the shower and got ready for our day. we made a pit stop at starbucks for a protein box and a green tea and made our way down the 15 freeway to zion hospital. as we were exiting admitting called us at 8:07 to see if we had forgotten, um no! there is a thing called morning traffic so we arrived fifteen minutes late. the sweet boy had fallen asleep and slept for a few minutes while we waited for admitting to call us in. 
he must have been excited for the day because he popped those pretty blues open wide and kept smiling. his whole demeanour over all was perfect, a smiley happy baby.
we went into the admitting office and did all the necessary paperwork and then a nurse soon escorted us back to the OR waiting room. we were given a cute teal gown and over sized peach MC Hammer style pants.
he just kinda hung out while we dotted all those necessary i’s and crossed those t’s with the nurse. 
and then he got to wear the over sized baby pajamas. he told me that they didn’t fit like baby gap and that pastels are not his color. because he is our son, he wore the pastels and took it for what it is. 
we took as many pictures as we could of his “first” face. the nurse probably thought we were coo-coo but hey, his face was changing forever. i never want to forget the first face i fell in love with. so mommy and daddy were the paparazzi found in room number seven. 
sigh. my two boys, the two twins. i love this picture. 
he got all linked up as did i. what is he here for? over and over. 
about 9:15 he finally got a little impatient and hungry. so what else could mommy do but shove the pacifier in his mouth. this is the last time he can use it, we’re hoping it’s a permanent thing. 
love him.
our plastic surgeon, dr. david sinow, came on in and marked his face for hospital protocol. brayden wasn’t having it. he finally knew what was happening. he heard us talking, the nursing talking and knew this happy moment was soon about to change. so he cried. wouldn’t you?
dr. christine briefly told us about her tour with operation smile to over twenty different countries since the 80’s. she was on the first tour to vietnam, amazing! i knew he was in great hands. dr. sinow finished his last notes in the computer and then it was game time. christine asked to take him, i of course, paparazzi mommy, asked to take a picture and this is the face he leaves me with. i would keep turning on my camera to look at this picture and then just cry. why the boo-boo lip, kid? don’t you know your mommy is a sucker for sappy faces, especially when she knows you will be away from her for hours? geesh. a wreck i tell you. 
as they walked away from us towards the OR. check this guy out! christine is saying, look how cute this baby is, the blonde is ooh’ing and ahh’ing and dude takes a photo op. i have a word for this type of guy. 
we soon found our spot in the surgery waiting corridor. we skipped sitting in the waiting room because there was a snoring man. we made a brief trip down to the great outdoors to consume my protein box and tea. jim decided to run over to vons for a crudite platter and trashy gossip mag for me and a bag of rice cakes and smoothie for himself. we made our way back up to the third floor and made best friends with the bench. 
i read, i laid down, i paced, i kept checking the screen to see if his status from blue (still in OR) would ever change. it didn’t. we waited for almost four hours. we decided to go into the actual waiting room to charge our phones. the room was empty for a split second until obnoxious tevas with sock wearing woman and her sick three-year-old who was clearly a lonely woman and befriended the other poway woman to her left. oh, and the kid threw herself all over us…did you catch she was sick? annoying. jim decided to run over to vons again. we were bored. of course, after ten minutes dr. sinow came in, just as that kid was climbing my leg. i had to reassure him that wasn’t our payton. he told me that the surgery went ahh-mazingly well and that our little dude was a champ. jim came back, the doc wrote the prescription and then the phone rang. atkinson? one of you can go back to recovery. first, why do hospitals do this? one parent? i jumped, i didn’t even give jim a chance. i walked back with my phone and camera. i saw the nurse and my groggy boy laying in the crib. the nurse immediately handed him to me. i started balling. it was just like meeting him for the first time. he was whiny but as soon as i started talking to him he calmed right down. he had his mama. i sat in the rocker i spoke quietly to him, taking in his new face and how well he was handling the trauma he just endured. they soon moved us over to the PACU and jim could finally come back. 
he was so calm. he didn’t need any pain meds yet, he was still calm from the anesthesia. the possibility of having to stay overnight was ruled out because he was doing so well. the nurse removed his IV. i then took his clothes off and got him ready to head home. he didn’t like being out of my arms too much. 
so he was attempting to cry it was so soft and groggy. as sad as it was to watch and hear him freak-out i knew he would be fine soon. 
once he had his monkey jammies and his too-cool for school magic school bus “welcome” bands on we walked out of the hospital. brayden slept and made some silent moans. we met my mom, payton, sister and niece at chilis for an early dinner and then headed home. we gave him a bath, 1.5 ounces of formula and his first dose of codeine. he slept like a champ. i woke him up around 10:30 pm for another feeding and more medicine. around 12:45 am i took him into bed with me and held him, he woke-up again at 2:30 crying a little out of pain so we repeated formula/meds again. he was a little more awake this time. a few coo’s and a smile for me. when we all woke-up this morning he was his normal happy self. coo’ing, kicking his legs like crazy, smiling and basically melting my heart. 
i know kids bounce back really fast and for that i am grateful. this son of mine truly is my angel baby, he shows me everyday how to be a stronger person. he has already experienced so much in his short three months then most experience in a lifetime. brayden, you truly are a calm soul. i love you and thank you for choosing me as your mom. all the fears that set in on June 23, 2011 are over. the page has been turned and our new journey can begin. 
and like the new jersey folks are sayin’, you really are a true californian now, plastic surgery before your first birthday. 😉 

35 weeks {an update}

This morning we headed down to the hospital for my 35-week checkup with Dr. Pacquadio. As she started up the ultrasound we quickly noticed Mr. Brayden had his arm in front of his face yet again. He has pretty much been in this position every time we have seen him which is pretty funny. I like to think he is already trying to cover up his lip and he isn’t even out of the womb yet! The other thing we noticed when I laid down was that he has dropped and she confirmed this with the ultrasound. His head is already descending which doesn’t really matter in the grand scheme of things but it’s reassuring that nature is taking it’s course. We couldn’t get a good look at the cleft side of his face because it was buried deep into my pelvis but we did get to see the left side of the face which showed us that he has chubby cheeks and a cute button nose like his sister. She also pointed out that he has quite a bit of hair on his head so we all instantly commented that he is going to take on Jim’s coloring. She also thought it was interesting how fair Payton came out gaining both sets of our recessive genes. But we shall see what we get in a few short weeks! Towards the end of the visit I ask her about what we had talked about at our last meeting in regards to changing the birth date from the second to the first and she gave me a huge, “no problem!” She must have been in a better mood today! So for now we have an amnio and pre-op scheduled on Halloween at 8:30 am and then my c-section is scheduled for 12:30 on the first. The c-section was an add-on appointment so it is very likely that if someone who was scheduled that morning goes into labor early that I would be placed into that slot. The downside to all of this is that if they have someone who needs an emergency c-section that I would get completely bumped from the first and given whatever day/time was available next. Fingers crossed! But now that I have my date scheduled he will come early even though the doc thinks I will make it. I sure hope she’s right! I have an appointment with my midwife on Friday so we will see what she has to say!! 
Some other things she noted today:
* measuring 6.6 pounds, this is obviously a guesstimate but she is thinking we will have another eight pounder like Miss P. 
* body measurements are measuring two weeks ahead of 35 weeks, this isn’t anything new. I think his left femur measured in at 37 weeks 3 days. Can we say long legs? 
* Kidney’s are still okay and even so we jumped that major hurdle. 
The pictures are all of his squished face in my pelvis but you can clearly see his chubby cheeks, perfect nose and his arm going across his face. He looks like he is all balled up keeping himself warm or something. Unlike his feet which were trying to escape through my upper stomach. 🙂 

Hi Everybody! I will see you all in 28 days! 

{a cleft journey} Meeting with the cleft doctor

I have slipped back into that black abyss that took over my soul just two short months ago. I would like to admit that having the 4D ultrasounds done has lifted my spirits but after this morning I have been shot back down to ground zero looking for hope, somewhere. The phrases filling my head of people telling me, “it’s not that bad”, “I can barely tell” and “it’s just a surgery. . .everything will be fine” are like a stab in the heart because the true reality after our meeting this morning is wanting to believe it isn’t that bad, but it is. A lifetime of surgeries are ahead for our little boy, we will be with our doctor, granted we stay in San Diego this long but until Brayden in seventeen years old. The line up of surgeries and therapy is mind boggling and when Dr. Nelson turned to me after his thirty minute explanation of my son’s future and said, “you know, I just have to remind you that there’s nothing you two did to prevent this”. Thanks. Another shot to my heart and honestly I just wanted to bawl my f-ing eyes out because I was so overwhelmed and to top it off Payton was seconds away from sticking her finger in the electrical outlet while noming on my chapstick lid. Parent of the year here folks. Hearing all of the information we heard today wasn’t anything that we had not already read while doing research but instead it was a reality check. I think I was in la-la land telling myself, it’s only a 2 mm  tear (as of now) and as long as we make it to January when the first surgery should happen I will be okay. But today we learned the first surgery to fix the lip will not happen until four, five or six months old. The palate, which now I am praying on my lucky stars we are blessed with something minor (trying to think positively here) because that surgery will not happen until nine or ten months old. My major question was, what happens after he’s born? Here’s the run down I got:

I will still have my scheduled c-section and at some point after his arrival when we have bonded we are supposed to ask our nurse to page Dr. Nelson because he likes to come visit while in the hospital. The good thing with this news is that I was under the impression from our genetic counselor that he would be whisked off and evaluated by the cleft team shortly after birth. This will now come at some point during the first month when we have a scheduled visit with the eight doctor team.

I will be staying in the hospital an extra one to two days for extra feeding/therapy care. While the c-section already lands me in the hospital for three to four days I can now expect to be there just shy of a week. They will bring in a lactation specialist and occupational therapist who will work with me to see if he will be able to suck. Most cleft babies have a hard time because the negative energy cannot suck the milk to the back of the mouth resulting in the use of the Haberman Special Needs Bottle which has an elongated nipple that sits further back in the mouth versus a tradition nipple. The bottle has a softer body which allows the parent to squeeze the milk into the babies mouth as they are attempting to suck. He described this as watching the baby attempt to take a breath and that’s when we would squeeze, reality check for mommy and daddy was rough again forcing me to want to curl into a ball and cry. Then, they pretty much send us on our way with our happy, healthy, feeding well baby like they would any new parent and pray for great growth and fat supply for his upcoming surgeries. We will have normal visits with our Pediatrician, Dr. Martinez, and in that first month just a visit with the cleft team. Then we wait for time to pass…

The overall timeline of events we were given on our handy dandy educational printout, A Parent’s Guide. Not that you necessarily care, but knowing me I will lose it so this will serve as a nice friendly reminder. After we leave the hospital we will:

  • See Dr. Martinez in 2 to 3 days and 2 weeks. 
  • See a Plastic Surgeon in 2 to 4 weeks. 
  • See Genetics Pediatrician in 2 to 4 weeks. 
  • See Head & Neck Surgeon in 2 to 4 weeks for hearing test and decide whether or not to put in middle ear ventilation tubes when the cleft lip or palate is repaired. 
  • Cleft lip repair done anywhere from 3 to 6 months. 
  • Cleft palate repair done between 9 and 12 months. 
  • Speech therapy starts around 18 months. 
  • Regular appointment with cleft team every 6 to 8 months for the first 4 to 6 years. 
  • Meet with Orthodontist around age six to discuss braces. 
  • Minor surgical revisions of the lip/palate/nose are sometimes needed before school starts since the face is growing and they are just fixing the areas. 
  • Alveolar cleft/bone graft surgery is done to repair the cleft defect in the upper jaw and gums between ages 6 and 8. 
  • Corrective jaw surgery after adolescents facial and jaw bones are done growing. An upper jaw surgery is often done to correct for the overbite associated with initial cleft defect, from what Dr. Nelson said, it gives a more full look to the face basically bringing the jaw forward. This happens around 16 to 18 years of age.
And as the appointment was ending after an hour Dr. Nelson invited us to the SD Kaiser Craniofacial Cleft family picnic in Liberty Station on September 10th. He said it would be good for us to see families in our situation and to hear their stories. As he sent us on our way he welcomed us as his newest patients into  the cleft family, aren’t we so lucky?
We left the appointment and honestly I would have been better driving off alone but instead I sat in the almost silent car except for a few meltdowns from the P’ster as she flung her entire bag of goldfish everywhere and squeezed her apple juice all over herself wanting to just break the F down. I couldn’t and kept my composure and quietly Jim would ask if I was okay as I swept tears from under my sunglasses and I said yes. The reality of all of this is sinking in because we are 10 weeks away from this life changing reality. I wish I could just be pregnant forever and never let him out to experience everything he is going to have to for the rest of his life. I want to protect him. I also want to run away with Payton and escape from this reality. I don’t want it to happen. I am so afraid of my future that it scares the crap out of me. I love my little family the way it is, I don’t want it to change. I sit here with tears flowing and Payton comes over to me looking at me to make sure everything is okay and I just ask her for a hug, a hug which lasted for three minutes of me grabbing her and holding onto her. Dampening her blonde locks with my salty tears looking for some hope, she just laid in my arms as if she knew what I was going through offering me her silent solace. I know we will be okay, because we have enough love to make it work but I have to say that I am going to enjoy my last two months of what I know as “normal”. 

{a cleft journey} Ultrasound

This morning the fam and I headed down to the hospital to have our monthly look at little B’s face. We decided to take Payton with us since it was with the doctor and it was so funny to watch her reaction to what happens during an ultrasound. Needless to say we got plenty of “oohhhhs”, “eewwws” for the belly jelly, a “wow” when she saw him and plenty of repetitive “baby” statements. She is hilarious and I think she is going to be such a great helper when her little brother arrives in twelve weeks. This ultrasound was so much better and honestly way more assuring. I was a stress case but seeing his sweet face today made me fall in love with him. Many of you might think I should have already been in love with him but I didn’t have a connection yet, I know I am pregnant and feeling him kick me all.day.long  should be enough but it wasn’t. Well, until today. Seeing his face, with actual chub on it and not all translucent made it more real. We can see his features a lot better and it’s so funny to see how much he looks like P. The tech and doctor’s were right at my amnio though, he definitely has his mama’s chin! The cleft doesn’t look that bad, still at about a 2 mm tear so it isn’t that big. We are meeting with the actual cleft doctor on the 22nd so we will know more of what we shall expect at his delivery which is fast approaching and then another 4D ultrasound in a month to check on him again. I guess it’s kind of nice getting all of these 4D’s to see my little lamb. On another note, his kidneys look like they have evened out so we can stop worrying about that! yippee! 
  • He weighs 2 pounds 4 ounces 
  • He is measuring spot on to 26 weeks 6 days 
  • Nasal structure looks 100% so it should be even and no “drooping”. 
  • Amniotic fluid level was a little lower than the average so I need to get chugging on some water. 
  • Consumed the ever so lovely Glucose drink today and took it like a champ!