RECOVERY

So, true to year 2017 to the Rosenberg fam....RECOVERY wasn't as smooth as we would have hoped. As previously mentioned it took a while for Lucas to come back from anesthesia land. We get home and took care of his wound with care and detail through out the day and night. On day 4 post op, he was still very fussy and we noticed that his nose and lip incision were swollen and angry looking. We took pictures and sent to surgeon. She wasn't too concerned but because he was so fussy she started him on antibiotics. We continued to wound care and give meds for the next week with no real progress. It was time for our follow up appointment with surgeon in Gainesville at SHANDS. She examined him and believed that his body was rejecting the superficial stitches, which is something she hadn't experienced yet....But not all that uncommon. She did prescribe stronger antibiotic just in case. So finally a few days later we have turned the corner. Now his lip is fully healed and his nose continues to improve as well. Other than the stress on us and Lucas with delayed healing....A few stitches in his nose dissolved sooner than desired so his nostril is flatter on one side. The rest of the surgery took so he may need a minor surgery and he's 4-5 years old to fix that nostril but we will just wait and see how it heals! Lucas starts daycare this week! I'm a little nervous about it of course, but we love our daycare and the infant teachers so we know he is in good hands.
Post op advice to those mom's reading this blog for info:

-Ask for IV antibiotics and post op antibiotics if at all possible. They say infection s don't happen that often...But the nose and mouth have bacteria that can easily cause infection no matter how careful you are.

- Make sure the nurses or MD actually clean the wound thoroughly before leaving hospital. I still feel that if we would have started out with less scabby blood in nostril before being left on our own, things may have gone differently. Our nurse seemed afraid to do too much and advised me to also be very careful. Although I agree we should be careful, that scan in nose is still hanging out and should have probably been taken care of earlier. Surgeon recommended now that we leave it until we see her again May 1st.

-Bringing zip or button up pj onesies are the best for hospital and after so you don't have to put clothes on over head and you don't have to worry about losing socks ;)

-No matter how tired you and baby are, let nurse do the bath before leaving hospital.
-Its recommended by our doc to use a peroxide and saline mix to clean wound. I think this was a little too harsh on Lucas so I would just stick to saline and soap/water.

Anyhow...He still looks great of course and finally healing on track! Check him out...

Lucas's big surgery day!

I am NOT going to sugar coat this...It wasn't fun, not one bit! It was life changing however to hand off our little guy to the doctors and get him back looking like a totally different person. I won't lie that I sobbed happy tears when I first saw him, then sad tears because this surgery hurts :(

Like any newborn who has to have surgery, the anesthesia is usually the scary part. They are just so little and vulnerable. It took him a solid two days to "come back to the other side." He was simply tired and not himself at all during that time. Since hours after waking he was eating pretty well though so we knew he would be ok! We had a scary moment in the middle of the first night when his blood pressure dropped pretty low during sleeping. He was hard to wake up and they were worried about fluid in his brain. This did not last long at all though because provacative tests and labs came back negative of any issue. He was just breathing really slow and still coming off the meds. The waiting area and recovery rooms were the worst. Lots of kids with much more serious issues headed into surgery, brain tumors, heart defects etc. Very scared parents and kiddos. It made us extremely thankful for our reason of being there.

Did I mention how amazing SHANDs is and our surgeon?! She did such a great job! Everyone we met was great. Thanks to close friends the Urbans for knowing a lot of the staff and watching out for us, the care would have been the same anyway I am sure but it was nice to feel looked after! Our surgeon was Dr Ching. We also were assigned to my dear friend Pam as our PICU nurse. But except for being disappointed in not having her as our nurse, we were happy we weren't severe enough for that floor. We ended up on the regular peds floor with a private room...Not tyoical. Again, big thanks to our friends and networking!

So, after a day of recovery from an extremely successful surgery, we head home. The hardest part of recovery is knowing by how fussy your typically happy baby is that he is in pain. He has a hard time eating and cannot nurse yet because of the power and pressure to suck, so pumping only and bottle it is for now. He must wear "no nos" which are arm splints to keep his hands from his face. This reduces chance of infection and also preserves the integrity of the surgery done. Being an OT and hand therapist, it is very hard for me to restrain his hands from all the touching and exploring he should be doing at this time of development...But I know that this is what's best so we continue to splint as directed for two weeks!

We are only 3 days post op and he's about 50% back to himself. We get glimpses of his personality after meds, feeding, and sleep. Some moments caught on the pics below! More to come about post op...But for now we will continue to recover and sleep, wound care, fuss, smile a little, and eat ;)
Doesn't he look amazing?!

Dang! If life wasn't already hard enough...

Sooo, we have been adjusting well to our NAM adventure and awaiting....Now counting down the days until surgery. Then BAM! Life decided we didn't have enough on our plate.
It was the day after valentines day and Jens and I had a great date night (first in a loooong time. Max and Jens had just gone downstairs to start the morning and Lucas had just finished his morning bottle. So I took him and his basket to head downstairs. First stair we are good, second and SLIP! My foot slipped and to prevent us from falling down the stairs I threw my body back landing on my butt with Lucas in my hands in the air like a Lion King moment, safe and sound. However, in the midst of the clean save of my sweet boy....CRACK! My right foot landed on the second stair and stayed put to break our fall, literally. I had just freaking broken my ankle! I looked down and thought (knowing exactly what may happen being a therapist) I won't be walking for months....And here comes my first surgery....So Jens came rushing to the stairs to assist and saw my leg. Yikes! It was all crooked and obviously I couldn't get up. He took Lucas and called 911. The paramedics were great getting me into the ambulance with the least amount of pain possible. Long story short we spent the day getting x days and cast. Jens by my side. We get home and it hits me.....WTF am I going to do?! Lucas's surgery was coming up and I would be only a week or so post op from my surgery, unable to walk or drive for months! Seriously WTF ;)

WELL, fast forward to today, two and a half weeks post injury and we have made it! Thrived even. Thanks to the incredible support of Jens, his mom, my parents, and all of my wonderful friends, my village. I knew I had a lot of sweet friends in my life, but something like this really highlights the blessing of all the sweet humans that love me and are there for me! I couldn't be more thankful for that.

So, surgery is this Friday March 3.... Just 11 days before Lucas's surgery. We will be OK though and the sooner the surgery the sooner I can walk again!!! Thank goodness for my speedy scooter or I'd really have a hard time. What keeps me going is getting up and getting dressed, make up and all. Makes me feel like I can do this! Also, getting out of the house enough for my sanity, but not so much that I danger my recovery.

For the next week I will be in intense recovery and relying heavily on Jens and family. Then it's Lucas's turn. I can't wait to show you all his new smile soon and educate/inform you on surgery and post op (for him and me!)

*Positive thoughts equal positive outcomes* My mantra right now!!

The NAM device and taping

OK...This one is long...I hope in documenting this part of our adventure we help other parents with problem solving through this period and also raise awareness for those of you, like me before all this, that have no idea what this is.

First, most surgeons prefer that children undergoing the lip and nose repair surgery for cleft lip do some sort of pre op tissue stretching to reduce the tension on the repair and reducing the likely hood of future surgeries. There are a number of ways to do this. First and most used secondary to cost and ease is taping. Literally using steri strip tape to bring together the lip. A brand called dynacleft also offers a nose elevator to shape nostril involved in unilateral clefts, with taping to the forehead...Look up that brand for more information. Then there is the Latham. This retainer like device is simlar to the NAM except that it is typically placed only 2 weeks before lip surgery and it is a surgical procedure for placement as it has screws that anchor into the roof of the mouth. The Latham also provides tension on palate to reduce the size of it as well, when needed. Finally there is the NAM (nasal aveoler molding device). This is what we chose because it is the least invasive and most effective in shaping the nose for surgical repair. The child wears this for about 2-3 months 24/7 before surgery, along with taping. Again, the purpose of this device is to stretch the tissues of the nose and skin above lip to achieve the most esthetic outcome of surgery. The Nam is really only offered at SHANDS in Florida. Since it is in Gainesville, we would need to travel there every week for adjustments for over 2 months! Luckily, a recent resident in the craniofacial department at SHANDS who performed many of these devices just opened up her practice literally down the street from our house in Tallahassee and has been able to fabricate and adjust Lucas's NAM so all we had to travel to Gainesville for was his mold! We are so thankful for her, Dr. Shawn Hanway of Tallahassee Pediatric Dentistry.

Now on to the process and the trials and accomplishments of our NAM. Getting the mold wasn't so bad. They did have to hold a big glob of material in his mouth for a few minutes, which wasn't comfortable but also not the worst thing we've gone through. Next was fitting the actual device. Taping a newborns face and sticking a pretty large foreign object in thier mouth is no easy task. We needed a few re-adjustments to get it just right. Also, Lucas got his brothers cold in our second week of taping/NAM so we took a week off. We are now in week four and have 5 left before surgery! Eek! He has already reduced the width of his lip by .5cm! His nose is starting to take shape, and we don't hate putting it in anymore! It's exciting to see the changes in his (and mine) hard work!

A few hints...The adhesive we use to put in the device is denture adhesive such as fixodent. It WILL NOT stay in for 24 hours unless you re-apply it 1-3 more times. Don't do like I did and clean it off Everytime he pops it out and use new adhesive! When it comes out, just add more adhesive and put it back in. This forms a stronger adhesive bond and it will stay in ALL day :). Of course it does need to be cleaned so we scrub it with a toothbrush once everyday. You will want to keep a small bottle of the gel adhesive such as fixodent or polygrip in the diaper bag while you are on the go so you can put it right back in if it falls out when you are out and about. Another tip is to keep a retainer case on you for a safe place to keep NAM until you can put it back in.

Also with taping, I wanted to find a better tape the white medical tape that was recommended. I felt it would be nice to have skin tone tape. Well, to be honest none of them work as well as the good old white medical tape your cleft team will give you. As far as taking it off, what I find works best is breast milk. If you are formula feeding then use milk of magnesia. That way the tape just almost falls off instead of ripping it off thier sweet, delicate skin. A great tip for compliance also is to keep a zip lock bag in diaper bag, bathroom, changing table, where ever of pre cut strips of tape! That way if it comes off you can just grab them and re-apply. Also helps with compliance :)

Overall, this process takes some getting used to on all parts, but it is worth the effort so you do it!! Below are some pictures of sweet smiles, the NAM with and with out tape. You will be amazed at the difference when I update before surgery pics vs initial vs after!

How precious?!

Birthday

Overall I was having a normal (not so comfortable) typical pregnancy. Of course all I could think about was our near future with this little one and how it would all pan out. Would he really be healthy otherwise? Would the palate be involved and to what extent? Would we have a hard time feeding, breathing, or hearing? Just so many questions! For weeks I was feeling the onset of labor and thought "today is the day" with nothing to show for it. Then finally two days before our due date I was having real contractions. We went into our scheduled OB visit with high hopes. Sure enough I was in early labor and ready to admitted! I get to my room and the beautiful, blonde nurse sets me up on monitors. We start talking about my pregnancy etc and I casually say, "his name is Lucas, it's a boy! And he has a cleft lip and probably palate." You know those times in your life where you are put in the presence of someone and it's meant to be?? Well, this was it for sure! She exclaimed, "I was born with a cleft lip! And my daughter too! The doctors thought for sure she had cleft palate as well, but she didn't!" This nurse was gorgeous and you would never know she was born with cleft lip until she said it. We bonded right away and exchanged information to keep in touch after he was born. She wanted to come visit him in the hospital the next day and I of course welcomed her! Unfortunately this was the end of her shift and I would be with another nurse during the next 12 hours. My labor and delivery were pretty much unremarkable. It went by quickly with a few expected discomforts. Lucas was born 12/31/16 at 2:43 am 8lbs 8 oz and 21 inches. He was perfect. Blue eyes and spiky blonde hair! The NICU nurses were there to evaluate him and determine if he could stay with us or needed further attention. Thankfully he was 100% healthy with an apgar score of 9. I was watching them and listening as they were checking him out and I heard one nurse say, "His palate is completely intact, just a cleft lip." That was music to my ears! I cannot tell you the relief I felt for him to not have to deal with cleft palate. Although, just like the lip, it is fixable and completely managable...But it is quite a few more surgeries, therapy, and feeding/hearing issues etc compared to lip/gum which is only 2 surgeries and no other treatments. I held him and we nursed...Something I had already put in my head we weren't going to be able to do. I was in LOVE. Our hospital stay was great with no complications. He passed hearing tests 100% among everything else. Now it was time to come home! Our sweet nurse did come visit and got emotional when I told her his palate was intact, she knew exactly how I felt and the implications had things gone the other way.  Enjoy the pictures below of after birth and sweet brother moments! Next on the agenda...SHANDS to schedule surgery and NAM device fitting (Much more to come on this subject)

Research and Answers

It was all I could do to feel productive regarding Lucas's future...I researched...Like everyday. I found other blogs, plain Google searches and images, and medical journals and websites. I looked into the best treatment options and surgeons near and far. When we finally did meet with our cleft team at SHANDS in Gainesville, Fl they were almost annoyed with how much I knew and questioned them...Especially the surgeon . She would look at me like "really? You are questioning my residency and before and after pictures?" Ha! Yes darling, this is my baby and I want THE best ;) Anyway, overall we are very pleased and in good hands with this team. Did you know there are only a handful of cleft teams in Florida despite its prevalence? And each of them offer different pre-surgical procedures. Jacksonville does taping only, Tampa does the Lathem device, and Gainesville does the NAM device. I looked up the pros and cons of all and medical journal research to make our decision. Convenience of Gainesville is obviously a perk, but what's even better is that thier practices are the best according to current evidence based information. So, how lucky were we? The best in Florida takes our insurance, is only 2 hours away, and a previous resident has just opened her practice down the street from our house Andrews capable and willing to make his device. The NAM device would need weekly adjustments so instead of driving to Gainesville each week or more, we get to drive down the street! More about his device later...For now, again we wait until birth to know the extent of his cleft and whether or not palate was involved. Below are some of the 4D US pictures.

The Anatomy scan at 20 weeks

We were so excited to find out boy or girl! In the back of our minds we were concerned for our baby's health during the scan, but honestly didn't worry too much since we had healthy Max and I had an unremarkable first trimester. The US tech smeared the cold gel on my growing belly and the first thing I saw was that we were having another boy! I looked at Jens and giggled "it's another boy!!" We were excited for Max to have a brother! When some time passed after she said healthy heart, stomach, spine, brain, etc I started to wonder what she was inspecting. Finally she said "I think he has a cleft lip." I went silent. I didn't really know what that meant for us but when I think of cleft lip, I picture those poor children on operation smile commercials from third world countries. How could this have happened to our child? I did everything you are supposed to do when pregnant yet we had a child with a birth defect?! I was silent until we got to my exam room. When the door closed and it was just us I looked at Jens and lost it. I just didn't understand and immediately started blaming myself. I didn't take enough vitamins I thought, those 2-4-1 margaritas I had two days before finding out I as pregnant. I just didn't get it! After much research and assurance from my doctors I learn that the cause of isolated cleft lipsare unknown. There are lots of theories...genetics, age, vitamin deficiencies, timing, diabetes, even medications and substance abuse/smoking. However the majority of the time, there is no reason. It just happens. Well...Fast forward to the nextday after many tears and fears we had an ultrasound with the specialist to confirm cleft and talk about other tests to assure this was an isolated cleft and not some sort of syndrome. Fun fact: over 200 genetic syndromes include cleft lip/palate as a symptom. The most concerning Trisomy 18. Thankfully that ultrasound and following blood work went well and he was perfectly healthy at this point except the cleft. "What now" I thought. While pregnant there really is nothing you can do except research all the trials you may or may not experience and think and worry...And forget it and be excited for your new little one. We did a little of both. So....Now we wait.