October 22, 2013

Therapy for the babies but may as well be for mom too!

As soon as the babies came home from the hospital I contacted our county's therapy program because children up to the age of three are eligible for services if they meet certain criteria. I wanted the quads assessed as soon as possible, not because I had specific concerns but because I did not want to miss anything if an issue arose with any of the kids. We qualified for occupational therapy based on the kids real age. They have always been on track for their corrected age so to get them to qualify we have based it on what they should be doing if they should be doing if they would have been born on their due date.The babies were only a couple of months old when Trish and Sue first started coming twice a month. When the babies were teeny tiny the hour was spent watching for the babies to track a toy or reach for an item with first one hand and then with two at the same time. The babies then started learning to hold two toys at once. Each developmental milestone the quads got praised by both the therapist and by mommy. I was probably the one that was so excited to see each new task they they were doing; where Trish and Sue were probably thinking they should have done that weeks ago. Different angles seen by all. Two very different professions, one a mommy and the other a therapist.
Playing with toys left by the therapist in between visits.


Notice Isabella's clenched fists...I mention this down below.
Toy holding then lead to holding their head up when laying on their belly. Then it was rolling from tummy to belly and then back and we wanted to see that they could make this flip from both the left and right. Next came sitting and then going from the floor to that learned sitting position. Crawling came after that and now at age 1 they are learning to take their first steps. Rylan will be walking first among the babies. In the past I have never put much thought into these developmental milestones with my full term kids. I just knew they would do them when they were ready. You throw in a preemie baby or four and you scrutinize every single thing your preemie does. You know it will take them longer to hit each milestone but in the back of your head you are always asking yourself if it is taking them longer than it should. The preemie world is a scary one and I finally feel we are starting to get out of it a little bit.



The babies were not always thrilled with the stretches but oh what I would have given them to stretch me out!
I am sure I enjoyed the twice monthly therapy sessions more than the babies. For them it was work and they were usually very ready for naps after the hour was up. For me it was an hour that I had entertainment for the babies and someone my own age to talk to. When the babies were little I would use the first part of the hour to pump and eat. I actually would get to eat lunch at a normal lunch time twice a month! The last part of the hour I would sit on the couch and have adult conversation. Now as the babies are getting older I get an hour of running around and completing as many tasks as possible before Trish and Sue start packing up their bags. The mom (or dad) are suppose to be interacting with the therapist and the client(s) but we are going through a stage right now of if mommy is around we all must sit in mommy's lap. This does not work so well when they are suppose to be playing and being evaluated. So I stay out of their line of vision and you should see how much I get done. I still tend to prepare a quick lunch that I can eat while making passes through the kitchen. Drew also loves therapy time as much as mommy because he gets to play with all the new toys that come in the therapist bags. He tends to not want to share with the real clients!
A Halloween therapy project. Of course Drew wanted to go first!


Having a second set of eyes on the babies has been huge. I was always concerned with Rylan and he went through a period of being very stiff. It was even hard to hold him. I thought we were for sure seeing the beginning signs of CP. After discussing it with Trish and Sue I was given techniques on how to carry him, lift him from his crib to stretch certain muscles and even how to hold him in my lap. They were able to calm my fears and reassure me that what he was going through was normal and his stiffness would improve. After a couple of months I started realizing I wasn't hitting his head into his door as often because he wouldn't stiffen up as much when I carried him. The techniques we had been given were helping and I could relax on some of my concerns for Rylan. Isabella is my sensory child and has been from very early on. She does not like new situations and even today still holds her hands in very tight fists when something just isn't right for her. The funny thing is she is a sensory seeker. She loves swinging, being pushed around in a bin, or spinning in circles. These are things we have learned during our every other week visits.

We weren't sure what Isabella would think of the wet paint on her foot but she surprised us by liking it.


Before the beginning of summer break when the therapist take almost two months off we had discussed that starting in the fall they would probably be able to see the kids every week. I knew that this meant they were not seeing all the developmental milestones being met at the appropriate times. This honestly did not concern me. I was just so thankful that if they were not hitting these milestones we were able to get them the therapy they needed to help them reach them. I did not ask what they were seeing to suggest increasing the amount of time because I did not want to spend the next two months watching every little thing. I just wanted to be mom. When September came around and we had the first session for the new school year it was music to my years to be told that they would not be able to increase therapy hours because they had excelled during the summer and were caught up to their peers. I was so proud of my quadlings and how far they have come since being my 2 and 3lb babies. So for now we are sticking to two hours each month. I do try really hard to not compare to the other 12 quads who were born 3 weeks before ours. I will tell you that many of them have been walking for quite a few weeks and we still have no walkers. The internet is awesome to turn to for advice from other quad moms but sometimes it can add increased concern that your babies are behind. So Becky, Amber and Gina can you just push your babies down before taking anymore pictures until we figure out the walking thing over here!!
A little break in between painting to take a spin.

Bootiful work by the littlest 5.
This week on Thursday from 12:30-1:30 you will find me trying to get 101 things done in 60 minutes while Drew tries out all the toys that are hidden in the bags and the babies will be showing off all their latest tricks. Oh and there will be some adult conversation and probably a kid song or two thrown in since the hour is suppose to be focused on 4 one year olds. Therapy has been a huge blessing in our family and both Paul and I feel very fortunate that we are able to receive this service until the babies are 3.
And this is why I run around like a bad woman when I have someone else playing with the babies. They get points for being cute and being in the way but no points for being good helpers.

October 12, 2013

Dr. Google Is Not Always Helpful

I have thought about doing this post for a long time but never got around to doing it but I recently meet a beautiful little girl in the nicu who was born with a cleft lip just like Drew Bear. After talking to her mom recently about her daughter's upcoming surgery it brought back many of the emotions of finding out Drew had a cleft lip during his 19 week ultrasound. I remember the night we received the phone call from our ob telling us what the radiologist had found I googled "cleft lip". The pictures that came up scared me more than hearing the news because everything that came up on Dr. Google was from corrective surgeries done in 3rd world countries. The results of these surgeries are so different than the results from surgeries performed in the states. We are blessed with amazing medical doctors, clean hospitals with sterile equipment and surgery is completed at a very young age compared to poorer countries where surgeries often take place when the children are school age. I am writing this post in hopes that when parents learn that their child will be born or has been born with a cleft lip that when they turn to the internet they will be able to see Drew's before and afters and gain some reassurance that everything will be okay.

Before our baby was diagnosed with a cleft lip I can only remember seeing one other baby who had one. It had been a couple months prior in the nicu I work at. This little girl only spent a couple of days on earth before she was called home to heaven. Not only had she been born with a large cleft but also chromosomal abnormalities that were not compatible with life. So when the call came the evening of our ultrasound and my doctor stated that there was concern that our baby had a cleft I kept seeing this little girls image. She was absolutely beautiful but her bilateral cleft was what one saw when looking at her. I was so scared for my unborn child and what his/her future would be like.  After telling Paul it was totally fixable and trying to pull off the "this is no big deal and things could be so much worse" attitude I called my mom and the upbeat outlook I had quickly dissolved as she and I talked about the increased chance of chromosomal abnormalities and other deformities that come along with a baby born with a cleft due to everything that is going on when the face is developing during the seventh week of gestation. I then turned to the internet to start searching for pictures of before and afters of babies who had corrective surgery done on cleft lips. The pictures did not help. Most of the pictures were from Smile Train, 'an international charity that provides cleft palate surgery to those in need'. Now this is an amazing organization but many of these children would have benefited greatly from having surgery earlier in life due to the way that the skin toughens on the face as a child gets older. The website also shows some of the largest cleft lips and no one wants to think about their beautiful child being anything but "perfect". I quickly learned that a high school friend of Paul's had recently had a daughter who was born with both a cleft lip and palate so I quickly emailed him needing any reassurance I could get in regards of what to expect. Other than Baby Aubrey I did not know a single person who had a cleft. There was not an adult I knew besides a tv actor that my mom told me about who had surgery many years ago. It was hard to imagine what our baby would look like as he got older after having his/her lip repaired. Here is part of the journal entry I did on the night after getting the call and searching the internet for pictures of babies born with cleft lips; 


"This evening we got a call from Dr. Murphy with some sad news. It appears you may have a cleft lip. Your palate looked okay and your other organs looked perfect. We are leaving on vacation in the morning for 10 days but when we get home we will have a follow-up ultrasound to learn more. This news saddens mommy. I know that a cleft lip can be fixed and there is little problems afterwards but I hate knowing you will be in pain with surgery, you may not be able to nurse when you are first born, and I don't want people to stare at my beautiful baby. I know God has made you perfect in everyway and He will give me strength over the next couple of weeks. I love you so much and I can't wait to hold and cuddle you in my arms. I want to smoother you in kisses and sing to you. I love you my sweet & beautiful child."

Two weeks later, after we got home from a fabulous vacation in the Bahamas with the girls, we met with our ob. I was shocked when we started to discuss the plan of care for our baby and our ob said he had to give us the option to terminate our unborn baby but we only had a couple of days before it would no longer be an option due to the gestation we were at. I think my jaw literally hit the floor. I was just amazed that someone would choose to kill their child because of something that was purely cosmetic. No other markers had come up on the ultrasound that showed any kind of chromosomal abnormality and we choose not to risk an amniocentesis because no matter what anyone told us there was no way we would not give our child a chance at life. Our doctor knew that this was not an option for us but he is mandated to inform parents of their choices. I don't think I will ever be able to forget the two times in my life I have been given the choice to end my child's life; Drew's cleft and our quadruplet pregnancy. It makes me hurt to think that I was given the option of not ever witnessing the smiles or feeling the arms of some of my children wrapped around me in the most amazing hugs that only a child can give. 

We continued our pregnancy and 10 days after our baby was due it was time to meet our son or daughter. A quick labor and after 2 pushes we had our little boy. He was quickly taken to the warmer to be checked over and I remember my son being brought over to me and after a couple minutes of being totally smitten over my newborn son I finally saw his cleft. I remember thinking how when I first saw him and held him I did not even see his cleft lip. I noticed it during the time that I was taking in each part of my little boys face as only a mother does; his amazing curly hair that already needed a trim, his big blue eyes, his perfect smile that had a cleft in the top lip. He was totally perfect and he was mine. My biggest concern from week 19 til the day he was born was whether he would be able to breastfeed or not. Everyone I spoke with from doctors to speech therapist told me we would have to wait until he was born to see how large his cleft was before we would know if he would be a successful breast feeder. I cried tears of complete joy when he was less than 10 minutes old and latched on as if he had been doing it for months.

The next couple of days were spent adjusting to life as a family of 5. The girls were so in love with their baby brother. Paul and I were amazed at how easy life with one baby was after having twins. Drew's cleft was just part of him. When he was about two weeks old I ran to Home Depot for something and when I got back into my car I got an email saying that the sneak peek for Drew's newborn photo session was ready. My internet connection was not great so it took forever to load but the first picture I saw had me sobbing in the Home Depot parking lot. I was seeing what my son would look like without his cleft lip for the first time. I accepted his cleft but I knew he would someday have it repaired and that one picture allowed me to see what he would look like after his surgery.

On October 7th Drew was scheduled to have his lip repaired and also have his circumcision. The poor boy had no clue what hit him. The night before I sat and journaled to my little man; 

"Tomorrow is the day of your surgery. I feel I have the same emotions I had the night before I was induced with you. I am nervous for the surgery because it is my baby going in for surgery but I know God will be with you and you will do great. I am nervous that you will be in pain and I won't be able to do anything for you. But I think the thing that I am most nervous for is seeing you for the first time after surgery. I have fallen deeply in love with my little boy who happens to have a cleft lip. I can't imagine now what you will look like without it. Tonight when I was giving you your bath I started crying because I can't imagine not seeing your same smile again after tomorrow. I know you will be handsome after it is fixed but I just can't picture your new smile yet! I love you Drew David and you are completely perfect by God and I wouldn't trade you not having the cleft for anything. You have already taught me an amazing lesson in your short life - God does indeed make everything perfect in His eyes. Love you Drew Bear".

The morning of his surgery he was the happiest boy in the pre-op area. He charmed over everyone who stopped by his crib. I think the hardest part of your child having surgery is handing them over to the anesthesiologist. At that moment in time you are entrusting your child to someone you have only just met. You then go sit in the waiting room and every time someone walks in from the side door you are just praying that they are going to say your name and tell you that your child's surgery is complete and you can come on back. When the door finally opened and I heard "Drew Lesnau" I couldn't stand up fast enough. In recovery he was not a happy camper. His face was swollen and crusty. His cry was not one we normally heard from him. He was as pale as the white blanket that he was wrapped in. I knew his surgeon did a great job but at that moment I just wanted my son back, cleft lip and all. I tried nursing him right away more for my comfort than his but it took about 12 hours before he was ready to eat. We ended up spending the night at the hospital for pain control but by 7am I was begging for them to discharge us. I wanted to snatch up Drew's roommate on our way out and bring him home because the so called parents of this sick little boy were sure to let everyone know how much of an inconvenience their blind, deaf son was. Oh how my heart still aches for that little boy. 

Drew came home with no-no's on which were arm splits that did not allow Drew to bring his hands to his face. He did not like these one bit but his sister's sure had fun with them. Luckily for us Drew was not a thumb or pacifier sucker which would have been discouraged following his surgery. He was kept on Tylenol with codeine and I was so happy when about day 7 he went to just plain Tylenol. We were finally getting our little boy back once he was off the narcotics. It wasn't that he was in pain during those first 7 days; he just was not the smiley, happy little boy he always was.  

His scar healed quickly. At first his lip did not line up correctly but his surgeon had told us that it would take 9-12 months for it to fully heal. A little longer than normal because he is such a little white boy! The scar also stayed red until he was about 9 months too and then slowly faded to white. Today many people who meet Drew never know he once had a cleft lip. We do always know when he is getting a cold though because one of the first signs is the top of his scar near his nose gets red. Around the time he enters Kindergarten he will need a revision and this is just due to the way the facial skin stretches as a persons face gets larger. He then may also have to have a revision in his mid-teens. 

Occasionally I wonder what he would look like without the scar that runs from his nare to his lip but 99% of the time I forget that my son was born with a split in the top of his lip. Being a boy I am totally fine if someday he wants to come up with some cool story of how he got his scar because you have to remember he is Spiderman! 


Happy Birthday Little Man

His hair was awesome. We got so use to his cleft that it took us a moment to remember why every time people saw him in his car seat or being held they would always pause before saying anything about our baby. People were so kind and his hair gave him a total out because everyone commented on that! Kids were always the one that would come right out and ask about his funny looking lip.


Even as a mom I can say that sometimes his cleft was not attractive. When looking back through his pictures this morning this one still makes me teary eyed.
This was the first picture that I was able to see what my Drew Bear would look like once his lip was repaired.

The morning of surgery.


My baby right out of surgery. I wonder if dad's ever are the ones to hold their babies after surgery? That job is 100% mine in our family and I don't think I will ever give it up.

In his room on the peds floor after getting some morphine.

Drew and his no-no's on the way home.

6 day after surgery

8 days after surgery. Still on codeine which gave him such sad eyes. The upper part of his incision got very crusty for about a week which the surgeon said was normal due to secretions from the nose.

3 weeks after surgery

6 months post surgery. Happy Easter Drew-Drew

The 1 year mark after surgery to repair his cleft.

Happy Halloween...2 years post repair
Almost 3 years to the exact day he had his repair. Oh how I love this little man!!

October 10, 2013

Fall

I love fall. There is not a season I like more and each year I wish it would stay around longer when it's time to say good-bye as winter blows in. I love the warmth that fall brings and I am not talking about the temperature. It's the colors of red, yellow and orange. It's the comfort of long pants and cozy clothes. It's the snuggles in bed as you enjoy just a couple more minutes of a warm bed. It's the scent of pumpkin candles (I go through more candles in October and November than I do any other time of the year). And there is something to be said about the meals that one begins to prepare as the days get shorter. They shout comfort as they cook all day long in the crock pot filling the kitchen with the yummiest of smells.








Fall also means the annual trips to the pumpkin patches and to Apple Hill. The girls are now at an age where they remember doing these things the previous year. I love listening to them tell us what they remember and for some reason I am not surprised that the memories my girls have are of food! This year when we told them we were going to Apple Hill they couldn't wait for the apple cider, the apple pie and the apple donuts. I was right there with them in regards to the donuts. Oh my when it comes to warm, just out of the fryer apple donuts it is bound to be a slip on the good old diet. May as well enjoy 2 or 3 of them while your at it!






As Paul and I were driving the 38 miles, which took an hour and a half on back roads, we talked about our time last year at Apple Hill. The babies had only been home a month. We were sleep deprived. We were on a strict three hour feeding and pumping schedule. The babies took forever to finish their measly 2 ounces. I ran out of diapers for Drew and had to borrow one from another family in the parking lot. But the thing is we did make it to Apple Hill last year so my kids could make memories. Sometimes it isn't always easy to do things and you wonder if it really is worth it. Our kids don't remember that we weren't use to all the stares and questions we got last year on our first big family outing. They don't remember that at a couple stops only one parent got out because it was easier for one parent to stay in the car then unload all the babies. Instead they remember all the apples daddy got to make applesauce and of course all the junk food they got to eat that day.




Each year as the kids get a little older adventures get easier. There is less stuff to pack and the whole day just seems to have less stress. I wonder what age the kids will be when they no longer want to hang out with us for the day? I am all for bribing with bringing friends along when that day comes!
And a couple of the little ones after bath because I didn't get many of them at the hill!

This girl is teething bad. All she wants to be is held all. day. long.


I am the funniest little boy ever.
A little video of the boys before bed.
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