Tuesday, September 17, 2019

September 17th: Surgery Day

The night before, the surgery got pushed back to an 8am arrival/9:30am start. Surprisingly, I was able to fall asleep and get a solid 4 hours and another few with some tossing and turning.  My exhaustion was greater than my anxiety I guess. Of course, even though 

Little A didn't know what was going on, he woke up at 5:00am. Normally he would take some milk and go back to sleep, but all he was allowed at that point was water or juice. I swear as all the adults got dressed we also took turns using the bathroom due to anxiety. We left the house at 6am because surgery being pushed back meant we were going to hit traffic going to the hospital in the city.  It took us about an hour and a half--but as the anxiety was building it felt even longer. After we signed in, we went to the waiting room that had toys for Little A and shortly after a nurse came to get my husband and I first. We went into an exam room and went over some medical history. Although my stomach was still churning, she was definitely a calming factor. She brought in a mat and let Little A pick what toys he wanted to bring with him when he joined us in the room. The nurse played with Little A in between checking his weight and vitals. While we waited for the anesthesiologist and surgeon, Little A just wandered around the room and the hallway.  All the nurses who passed him commented on how cute he was, and one even gave him a sticker. He was wearing the cutest little hospital gown that was a little too big and toddler sized slipper socks. His cuteness helped lighten the mood. Little A--so innocent, happy and smiling--didn’t even know what was coming his way. The anesthesiologist came into the room and explained things and got consent. Something about his presence and voice was just so calming and I was not feeling as anxious as I had on the way there. Then the surgeon came in, explained the procedure again and said it should be about an hour and then he’ll come talk to us about how it went. Again, I was feeling a little calmer at this point still just because everyone around you at the children’s hospital seemed so comforting and safe.  Thank G-d grandma came with us and stepped up to the plate when neither my husband nor I felt like we could handle bringing Little A to the OR while they put him to sleep (although I think somehow if I had I would have been able to muster up the mommy strength for Little A). I gave Little A a big kiss and said see you soon. When mom came back from the OR, all three of us settled into the waiting room. My father in law made it to the hospital too and joined us in conversation to pass the time. A few candy crush boards later and an hour had passed already. The surgeon came out to talk to us and told us everything went well and about the aftercare. Ten minutes after that we were able to go to the recovery room where Little A was still asleep in a crib. The nurse was amazing and told us to let him sleep.  It is better for them to wake up on their own so they won’t be as cranky. As soon as we heard a peep and he started to stir I was standing right next to the crib so when he opened his eyes he saw me. Little A did not like the leads or blood pressure cuff and was getting upset. The nurse helped me pick him up while they switched out the crib for a big comfy chair for me to hold Little A in. When he was ready he drank some apple juice from his bottle and when that stayed down we switched him to his milk. Then we saw the Little A we know. He was not happy when his blood pressure was taken again and again and he did not like the heart monitor leads or the pulse ox on his foot. He cried and tried to take it all off. We kept telling the nurse, that is his angry cry because he isn’t getting his way, not a cry of pain.  After about an hour in recovery, since he stomach was handling food, we were able to get ready to go. All the wires and stuff were taken off and we got him back into his clothes, but he was still a little weary. He cried/whined all the way to the elevator, which is when he realized that momma and grandma were just as happy to be leaving the hospital. Once we were back at the car and he was buckled into his carseat, you could tell he felt safe and relaxed again; even most of the way home, which this time was only a 45 minute trip. He was cranky at times which was expected, but he was also hungry enough to eat some light snacks. After a nice 2 hour nap, Little A was almost himself and signing to go outside on the swing. Since Little A was such a trooper, we of course brought him outside. Kids are so resilient and by bedtime he seemed to be his goofy self again.  As for mom, grandma and dad, we can let out a sigh of relief that this chapter of Little A’s journey is officially over and behind us. We will have a few more years before we have to worry about visiting an OR again. I still can’t believe sometimes how far he has come in such a short period of time...I am definitely proud of him! Little A will be able to do anything and conquer the world!.

Tubie removal: didn't go as we thought

We thought the whole feeding tube removal process was going to go differently.  When you are first getting ready to remove the tube, you are told it should close up all by itself within 2 weeks.  Key word there is should. We were also told if it doesn't, Little A may need a few stitches. I thought "ok just a couple of stitches on the outside wouldn't be terrible"...clearly not thinking stitches on the inside may be needed. Well 3 weeks go by and there is still some leakage, but you keep telling yourself that it can't be his food or milk because the stomach lining has to have closed up...it's just healing juices.  You start to Google "feeding tube removal sites" and the few images and stories you get don't match your situation, so you think it must be healing. We decided we better go back to the surgeon's office who put it in and have them take a look to ease our minds. A few days before I panicked because while changing the gauze on little A's tummy it is purplish just like the yogurt he ate a few minutes ago. My stomach starts to ache and I think to myself this is not good and my worst case scenario is going to come true.  A few days later we drive all the way to the city to see the nurse practitioner. She looks at Little A's g-tube hole and tells us it looks like it's almost healed up and that some granulated tissue is in the way. I tried to explain to her about the yogurt a few days before, but she still felt it looked fine. She put on some silver nitrate to help with the granulated tissue and 15 minutes later we were on our way...only told to come back if it got worse or didn't improve. We thought this was it and we were worried for nothing.  We went on a family vacation to the beach for a few days which was still a high anxiety situation since the hole was not completely closed. While there we ended up using an antibacterial waterproof bandaid to keep the site somewhat dry on the beach. That band aid really backfired on me because I did not realize it was antibacterial and not to be used on sensitive skin. Little A literally had a square shaped rash around the tubie site and he was leaking. I was so panicked and felt so guilty. Using cortisone cream and then just a skin protectant we were able to clear up the rash from the band aid, but unfortunately the tubie site still wasn't cooperating.  For a few days straight after breakfast, Little A was leaking through his gauze. I couldn't deny it, it looked like the milk he just drank. Only thing was, this doesn't happen every time he eats or drinks and it's not an excessive amount. It only happens in the morning, then the rest of the day the tubie site looks like it is trying to heal and close. This causes us to make excuses, but now it's almost 2 months since the tube has been removed. We either need to buy stock in a company that makes gauze or see the doctor. We do the rational thing and see the nurse practitioner again. All morning and the way there I have in the back of my head that I know what the answer to all of this is going to be, and I try to keep it at the back so I don't make myself crazy. At first she looks at it and thinks the same thing she did last time, that the granulation tissue is keeping it from closing completely, but then we made sure to explain the leakage and how it looks like milk.  In hopes her answer to the problem will be different we also explain how it's weirdly only in the morning. Inevitably her answer is that Little A is going to need stitches that are done in the OR (a nice way of saying surgery to close up the stomach). None of the surgeons are around in the office of course to confirm that, so next week we have to go all the way to the city for another 15 minute appointment with the surgeon in order for him to come to the same conclusion and schedule a date with the OR. The positive note is that she did not feel it was an emergency because although he is leaking a bit it is not enough to cause Little A to be dehydrated or lose weight. In fact, he gained a few ounces in the 3 weeks between appointments with the nurse practitioner. I am trying not to freak out and cause myself too much anxiety every day leading up to a surgery not even scheduled yet, but it is really hard to think about your baby going through that. My mom keeps reminding me, if at 2 weeks old this 5lb something ounces baby was able to make it through surgery to get the tube in the first place without any problems then he is going to be absolutely fine for the next one.  Little A is one strong kid! The hardest part is going to be dealing with a hangry baby that day. I just wish that I could make all of this go away already. 

Update: the surgeon had said that more often than not the stomach does not close on it's own and surgery is needed.  It is a routine surgery and Little A will be going home the same day as long as there are no complications. The surgery date is September 17th at 6am.  Little A is a strong little boy and will be fine! This momma can't wait for it all to be over.  

Monday, July 1, 2019

And Little A is off the tube!

It has been exactly 10 weeks since we last pumped any milk through Little A’s tube and it was only about 3 oz.  He has been drinking all of his bottles and eating all kinds of foods (Bamba is his absolute favorite snack). We have increased his food intake to about 4 oz 3x a day and of course snacks along the way and he determines the amount of milk he will drink daily (we try between 18-24 oz).  On June 27th, we went to the Swallow therapist and she was so pleased with him. Little A not only showed her how he can eat strawberries and blueberries, but he showed her how he takes bits of his veggie straws with his front teeth and moves the pieces over (sometimes with the help of his finger) to the side of his mouth for chewing.  She gave us a rubbermaid straw cup to start practicing with him. Well after two tries with the therapist he did not need her help at all to get water to come up the straw. He did exactly what he was supposed to. He continues to work on it with different straws, but if he sees any kind of straw you bet Little A is coming over to try to take a drink.  This weekend Little A also mastered drinking his milk from the sippy cup lid on his bottle, but when he is sleepy he prefers his bottle nipple (and yes he knows the difference just by looking at the bottle)! Today, July 1 we took Little A to see a G.I. in hopes that we could finally get the g-tube that we have not used in 2.5 months taken out. After explaining why Little A had the tube put in in the first place, how we haven’t used it in months and how his swallow therapist gave us her OK, the G.I told us there is no reason to keep it in.  It was taken out and we were told how to take care of it the spot. Think of it as the hole in your ears if you have your ears pierced. If you never wear earrings the hole closes up. The same thing for the spot where the g-tube was. It should heal itself and close up completely within 2 weeks. We just need to use a mixture of butt cream and mylanta on it , so Little A’s skin doesn’t get irritated from any stomach discharge. At this point, changing some gauze for a couple more weeks will be a piece of cake. Fingers crossed it closes by itself, so we don’t have to go back for a couple of stitches. I can’t even begin to describe all of the emotions I felt by the time we got back to the front of the office.  I was excited that this was finally happening; I was in disbelief that we really made it this far in literally 12 months; I was feeling like one proud mama bear for all of the hard work Little A did; and feeling grateful to my husband and mom who helped get Little A here! I had tears of happiness rolling down my cheeks by the time we got to the car and didn’t know who to text first. Thank you to all of our friends and family who showed us so much love and support….It helped us keeping going and keeping pushing ourselves and Little A whenever we were able to celebrate the small stuff with all of you! Only thing left to say is: Little A did it! He is off the G-tube! I am grateful that he was able to get nourishment from the g-tube as long as he needed it, but I am even more grateful that he no longer needs that support!

Sunday, April 28, 2019

New Trial: Little A in charge

After the last visit with the swallow therapist my mom and I decided that we would give Little A a few weeks of getting used to his new schedule before a new “trial” idea of just on demand feeding.  As in a previous post Little A was doing well with his new schedule of bottles every 4 hours--giving him some more time to eat a meal, play and longer naps. With traveling down to Little A's other grandparents house for passover, his schedule was off and Little A decided he was going to make the rules.  He let us know when he wanted to drink his bottle and when he wanted to nap. I’ll admit it made me a bit anxious to relinquish all of the control to Little A...but that anxiety eased with every ounce he drank. By the end of the day I was just one excited mama because he drank 27 oz out of a total of 30oz! For the rest of the week, Little A only had 3 or 4 ounces go through his tube during his morning bottle time.  The rest of the day he drank 26 or 27 ounces total by bottle. He took a morning nap of about 2 hours and in the afternoon sometimes he took a 30 minute catnap followed by a 1.5 hour nap later on. We kind of still set a limit on when we wanted each bottle done, just so that we did not get overwhelmed at the end of the day. For example, his “11 o’ clock” bottle had to be done before his 1 o’clock nap. That being said, we didn’t expect Little A to sit down and drink the 7.5 ounces in the bottle before he was allowed to do anything else.  We tried to get him to drink 2-3 ounces before he could go play with his toys for a little while. Sometimes Little A even wanted to eat some purees and puffs before he drank. In just seven days he really proved that he can tell us when he is hungry and when he is tired. There are times of the day that were a little bit of struggle to get him to finish the bottle when all he wanted to do was play with his toys. We are finding ways to get him to calm down and finish first. One way is to go to a dark extra room with less distractions and another if we put his wearable blanket on he thinks he is getting ready for a nap.  These two strategies have been working so far. Also when we are out and about and Little A is bored in the car seat or stroller he does some great bottle drinking! The best part of this one week trial….on the 8th day we decided to give Little A the chance to try not using his tube at all and he did great!! He drank 31 ounces all out of his bottle for the first time ever! There are no words to describe this feeling...and how my dream and goal to have him off of his feeding tube by his first birthday is actually real! It was the greatest feeling in the world to not fight with Little A to sit or stand close to the feeding pump pole.It was the greatest feeling in the world to not think about that tube at all today. It was the greatest feeling in the world for Little A to just eat, drink, nap, and play like every other kid his age! It was the greatest feeling in the world to not worry about his outfit being accessible to his tube! [People take for granted being able to just put their kid in a bodysuit onesie and some pants.  After 11.5 months, I am so used to making sure Little A’s shirts/clothing have snaps or buttons down the front or cutting a hole and making a patch in a body suit...all for easy access to his tube. For the first week in about 11 months I walked into a store and didn’t have to make sure the outfit would work for Little A. Although I realized at this point my brain is so trained in that, that I do it when looking for gifts for other babies too. I put a sleep and play back on the rack because it is a zipper not snaps only to remember not everyone has that problem. The other day in Carters I almost screamed with excitement at my mom because Little A needed a pack of short sleeved bodysuits to wear with some pants he has…”He can wear the same clothes as everyone else!” ] As I have happy tears rolling down my cheeks, it is really hard to put into words how I truly feel. I am so thankful for my mom who helped every step of the way of this drinking and eating journey. Together we have used our common sense, asked some questions, and figured out the next steps.  We would rejoice together when Little A reached the goal we set for him and discuss what to do next and if we thought he was ready. She was the first to say after 7 days of only one tube feeding that Little A is ready to show us what we can do without that tube. When I was feeling a little bit anxious about the amount left in the bottle at the end of the day (and Little A fighting because he was tired), she was the first to say there is no turning back now. She is right...no going back! If he can do it once he can do it everyday...he just might need some encouragement or time but he will do it! I am starting to feel relieved and giddy that the end of this feeding tube is really in sight. I also feel if this little boy can overcome this, he will be able to do anything he puts his mind to in life! He is only going to be a year old, but he has accomplished so much already! He is one strong little guy and there is no stopping him. After his 1 year doctor’s appointment, when we get to tell our favorite Pediatrician how amazing Little A has been doing since we have last seen her, we will reach out to the swallow therapist again to tell her as well and see what the next step is.  We are positive that by the summer, everyone involved will agree that Little A’s tube can be taken out and the physical healing will begin. Until then, we will keep on smiling and celebrating each day that Little A continues to drink all his bottles and not use his tube at all! If you are someone who has a child on a feeding tube...don’t give up or become complacent. With therapy, practice, time and some faith they may be able to get off their tube one day too. Little A is where he is today because we put in the work and time to get him here.

Little A: "I did not use this pump today!"

Thursday, April 4, 2019

Little A update: April 2019

Little A is 10 1/2 months old already! Where has the time gone? He has come so incredibly far in these months. Little A does his own variation of crawling because now that he realizes he can stand up and take steps he doesn't want to stay on his knees.  He cruises around the ottoman and takes steps with his baby walker. Little A makes sounds and giggles. He has found his hearing aids and thinks pulling them down is a fun game (I can tell you it's not fun, but the audiologist laughed and said good luck for another year - it's just what they do). Little A has finally gotten teeth! Currently we can see the two front bottom teeth, but we think the top two are on their way. He often holds his own bottles while drinking and lounging on the couch as only a couple of ounces of milk run through his tube.  Little A loves to eat yogurt, baby oatmeal and any of the Gerber purees as long as they have a sweet taste. He loves to eat bananas in a mesh teether-feeder, so we don’t have to worry about him swallowing too big of a bite (we hope to brave letting him try a whole banana piece soon). Little A has started eating Gerber puffs and has even surprised us by picking it up off the tray himself and bringing it to his mouth. We are just so happy and proud of this little boy!
On Thursday, March 28th, Little A, both grandmas and I went to two appointments in the city.  The first was with a nutritionist who was semi-helpful. We thought that a swallow therapist who set up the appointment with the nutritionist for us (after seeing her in January) had passed along information. We were wrong as when she came into the room she asked us what brought us to her.  Basically, we started from the beginning of Little A’s feeding story and ended with we really hope to get him off his tube this summer. So we left that appointment with just the idea to see how it goes with feeding him 7.5oz of milk every four hours and continue our three meals of solids a day in between.  Nothing that we couldn’t have figured out on our own or with the help of our local, amazing pediatrician. My mom (Grandma JoJo) and I decided we will give LIttle A a few weeks on this new schedule to help him better understand his own hunger cues before experimenting on our own. I can tell you though our future idea is to be brave and let go of this schedule.  We will make 30 oz of formula in our Dr. Brown’s pitcher and just make sure it is gone by the end of the day by reading Little A’s cues and just offering him the bottle. He has already shown in smaller opportunities--like when we are out shopping--that he can drink a whole bottle at his own leisure. We will also discuss more of the milk/solids ratio with the pediatrician in May at his 12 month appointment.  The second appointment of the day was with a swallow therapist. She was so happy with how he drank his bottle as well as how well he ate the puree mixed with baby cereal. We also showed her how Little A eats the Gerber puffs and she was pleased for the most part with how he moves it around his mouth so it melts down enough to swallow. She told us we could even try veggie sticks since they also melt. Little A does need to strengthen his chewing a bit, so of course she gave us a tool to help set us up for success.  It is called a chewy stick - they come in different resistances (we got yellow the easiest and red which is a level up). We dip it in his food or crunch the puffs and put the crumbs on it. Then we put it on the side of his mouth and he chews on it (alternating sides to help strengthen both). Little A likes to chew on it--teething probably helps with this aspect. We will make another appointment with the swallow therapist either in May or over the summer to hopefully determine that Little A is ready to have his feeding tube removed.  It literally brings happy tears to my eyes to think about how this little boy went from only getting a taste of milk off of a pacifier to drinking whole bottles (at times) within a year. He is already one amazing dude! I hope this shows other parents who are in similar situations to have hope, set a reasonable goal and practice with your child as much as you can (don’t only rely on the therapists or specialists, but do the homework). When you believe in your child, there is no limiting what they can accomplish!


Little A lounging on the couch while drinking his bottle and his tube is running
mesh teether-feeder (makers: munchkin) 
chewy sticks
             


Saturday, February 16, 2019

BAHA: Bone-anchored what?

 I never realized or even really thought about different technologies that are out there these days that are changing people’s lives.  So when Little A was born with tiny ears (microtia) and no opening to his ear canals, I just thought we were going down the road with a child who is deaf and I was ready to learn ASL.  Within hours, though, a member of the hospital’s craniofacial team was using the acronym BAHA and telling us Little A will have a chance to hear within a couple of months. At first I had no idea what they were talking about—what is a BAHA? What do they look like? How do they work? I quickly started to research on google and Pinterest. BAHA stands for bone-anchored hearing aids.  As young children the processor part of the hearing aid snaps onto a special headband. The headband holds the BAHAs tight against the bone. When they are older if BAHAs are their only option to hear it can be implanted onto their head. My simple understanding of how BAHAs work is that they vibrate the sounds against the bones (process of bone conduction) which then sends signals to the inner ear, nerves and ultimately the brain. These days the processors are pretty small rectangles compared to what they have been.  The sound processors and soft bands come in a variety of colors. For girls, I have seen on Pinterest people add flowers or bows to the soft bands and it just looks like a regular headband. For boys, I guess they could wear a hat. The light brown I picked out for Little A without even seeing it first, happens to blend with his hair so well. I have bought a couple of baseball hats and made a winter hat for Little A, but I rarely use the hats to hide his BAHA softband. I don’t want him to think he HAS to cover it up when he’s old enough to make that decision—just want him to know that he has the option. I am not embarrassed and if someone stares or asks, I’d gladly tell them that thanks to these devices sticking out of the side of his head, he can hear! Isn’t technology amazing!?! Another cool thing about technology is these hearing aids come with a wireless microphone.  We use it, especially in crowded places like restaurants, so Little A can hear 1 person clearly over everything else that might just sound like noise. When he is older he won’t need other headphones because his BAHAs will connect to his phone with Bluetooth.
       Little A first received his BAHAs (thanks to the help of E.I) in October when he was 5 months old.  That audiology appointment was exciting and nerve wracking. We couldn’t wait to see his reaction to hearing for the first time.  We were quiet when the audiologist first put them on (after showing and telling us about them). Then with Little A on my lap and my husband’s phone camera ready to record, I said “Hi baby, it’s mama.”  At first, Little A sat quiet, probably not sure about what was happening. I spoke some more and then his eyes welled up and tears came rolling down his cheeks. It was very overwhelming for our little guy.  We finished up with the audiologist and took Little A home, with him listening to his dada narrate the drive home. We gave Little A a break, since it was time for a nap anyway. The 2nd time we put them on he cried as well.  It was a bit heart breaking, but I just kept in mind he will get used to them. One thing that was tough was balancing the amount of time he wore the BAHAs with everything else ( feeding, sleeping, tummy time). Slowly we figured it all out and it helped as he got older.  As Little A was awake e and sitting up more , he wears the BAHAs more. Also, if he is in his high chair or car seat where more feedback is likely, we just center one BAHA processor on his head. One is better than one. Only recently, has Little A tried to pull the soft and off and more out of curiosity.  He also likes to touch the sound processor with his hand or lean it against the side of his high chair—we think he likes the sound of the feedback. At least then we know he isn’t bothered by the sound when we are inter mood for a quick snuggle and can’t help but hold him tight while his BAHAs buzz with feedback.

         In just a few months the BAHAs have made a big difference for Little A. He loves looking at and listening to people talk.  He really loves playing and hearing the instruments he got for Hanukkah or hearing a squeak other toys make. Little A is even starting to make his own sounds and babblings. I am so thankful for this technology and how much it has helped my little boy!

Litte A wearing his BAHAs while standing

The bluetooth mini mircophone. Connects to the BAHAs to amplifly the speech from person wearing it

The BAHA up close.  The little door that is open is where the battery goes.  The tan Circle is that part that vibrates and connects into the softband. 

Thursday, January 31, 2019

Failure: what I wish I didn’t feel

Little A has a cold; slight fever; and teething...meaning it was a pretty sleepless night. Now unlucky for me, I am a light sleeper these days and my husband is a very deep sleeper. Like four alarms or a kick from me to get up kind of sleeper.  In other words, I am the night shift for Little A pretty much by myself on the few occasions he is up. We are lucky to currently be living with Little A’s grandparents—so it is grandma to the rescue when I am at my breaking point. In the beginning, I felt a little better about asking for help in the middle of the night as a brand new mom. Today though I am feeling a bit like a failure. Yeah, I get it even though he is 8.5 months old, I am still a new mom learning things along the way. I just can’t shake this feeling today.  I have experience with babies and kids. I am an Aunt to 7; I was a toddler teacher; I am a special education teacher. I guess all of those experiences are during day time hours and I was able to get child-free rest. Still, Little A has been so good and really only has trouble in the night when he doesn’t feel well; I should be able to handle it on my own. At first I went in to just see if he needed the pacifier, but he only got more hysterical. I picked him up and he was feeling warm still, but it was another hour before I could give him more tylenol.  I thought if I held him we could doze a bit and then I could give him tylenol. We got comfortable, all snuggled up and well at least Little A wasn’t crying anymore--as for sleep, that wasn’t happening. I tried to close my eyes for a bit, but he was starting to wiggle. Finally, it was time to give him tylenol--luckily he likes the grape flavor and took it with ease. I rocked him a bit and put him back in the crib and thought “ok, it should start working soon and we’ll be good for the rest of the night.” Boy, was I wrong. He slept for about 30 minutes. I went back in his room and went down the mommy checklist:  cleanish diaper? Check. Medicine? Check. Clean nose? Check. Hungry? Maybe...should I get milk? He rarely wakes up in the middle of the night due to hunger, but yup! He wanted the milk and seemed satisfied after a few ounces. Maybe he also just wanted to snuggle. He cried in the crib, but then he cried when I was holding him too! “Aahh...I am so tired...I’ve tried everything on my mommy checklist.” I can’t wake the hubby--he will just be groggy and confused. I am afraid I am getting closer to hitting my breaking point--I have to call in grandma. Not only was it the edge of my breaking point--It is my point of failure.  It’s ok to let him cry a bit because if the grandparents could hear him then grandma would come to help anyway. If she doesn’t step in, then she isn’t bothered by Little A in the middle of the night and Grandma thinks/believes I have it under control. I feel like a failure because I asked her to step in. I hate doing that, especially in the middle of the night because she does so much for Little A already (caring for him all day while I work). FAILURE because if we lived in our own house I wouldn’t have a “bail out.” FAILURE because I felt I wasn’t helping Little A. FAILURE because I didn’t imagine mommyhood to be so hard at times.  

I know being a mom is going to have its challenges.  I need to start believing in my own ability more. Even though my start to mommyhood wasn’t what I thought it would be and I have some extra challenges, I still strive to be as close to perfect as you can be.  I am hard on myself when things are difficult or I am tired/frustrated. I have to remember its ok to feel knocked down by these challenges, but especially as a mom, I need to get back up quickly. It is even ok, to ask for help back up if you are lucky enough (like me) to have the support.  When I feel like a failure, I need to remember I am not the first mom to be going through challenges, and I won’t be the last. As long as you are loving, caring and trying your best than you are succeeding at this mommy thing!