To breastfeed or not to breastfeed? That is a question?

Ok… this one is personal for me. Breastfeeding. I absolutely love the idea of breastfeeding. The actual actions and process is a whole other story. Because of many different issues, I was never able to breastfeed either of my children. It’s one thing I’m still sad about. But why?

DISCLAIMER: There are many ways to feed your baby – I completely support all types of feeding! Some are due to medical issues, some are because of personal choice. I am just sharing my personal story. You do you, mama! Your baby is fed, well cared for and growing, so you are doing it right! The type of food that goes in them doesn’t have to come directly from your body and doesn’t necessarily go in to their mouths. I have always supported women’s rights to take care of their child how they see best. So please do not take this as me disavowing anything other than breastfeeding. It is far from it. This is just my personal story and hopes with my children.

So, why did I get sad when I couldn’t breastfeed my children…. Disappointment. In the hospital with my first, the pediatrician made it very clear his stance on breastfeeding to me. We had to formula feed her in the hospital because my supply was being stubborn and she was crying incessantly. He was so adamant that I do not continue bottle feeding my girl or I would never be able to breastfeed. This stuck with me. And in my vulnerable state, it really made me feel like a failure. I remember the second he left just sobbing, full on sobbing because I was failing my child already. Thankfully we had great nurses and they comforted me and let me know I was doing everything right.

My babes both had tongue ties and lip ties. My first wasn’t diagnosed until 6 weeks. It was corrected at 10 weeks and by then she loved her bottle. We tried for four months to breastfeed. By the end of our attempts she had such a strong nipple aversion that anytime she even got close she screamed! I was devastated! I was already suffering from postpartum depression and this just sent me in to a downward spiral of self-loathing and self-hatred. I would regularly think: How could I screw this up? It’s supposed to be completely natural. How am I such a failure at something that’s supposed to be easy? And the even more unreasonable… Why does my baby hate me? She won’t even come near me without screaming.

It was hard! I had started pumping early on and had a decent supply by this point. I decided to pump from then on out. There were early mornings I would be pumping alone in the dark and just crying. Just crying at the connection I was missing out on with my little girl. Eventually, with some time and support from my husband, I was able to accept our circumstances. I wasn’t going to be able to breastfeed her, but I was at least providing her with my breastmilk.

20180916_074331Pumping is hard! I typically had to pump longer since I wasn’t breastfeeding. I would usually pump for about 30 mins. As I wanted more sleep, I cut back how many times I pumped in a day and increased my time to 45 mins per pump. The “let-down” wouldn’t happen until about the 10 min mark (sometimes later) and because of my infrequent pumps, I had to make sure it was all out to avoid blockages. It was an involved process. Don’t think that women who pump just sit there. If this is their only form of extraction, it was a lot of mental preparation, physical massage and warmth. We couldn’t just lay back, because the liquid would be working against gravity to get in the bottles, so we have to lean forward – not comfortable.

The bonus to pumping, especially when I was able to sleep 8 hours between pumps, is that my husband could do night feeds while I slept! Or he could feed her during the day, or whenever I was too tired, or just needed some me-time. It was good for him too. He was able to connect with her while feeding her. I pumped for 11 months and with my oversupply, she was fed breastmilk exclusively for one year. After that she had formula, but was mainly eating solids and other drinks.

Cry Breastmilk Meme

Then my son came. I thought, this is it! This is my chance to finally breastfeed. He latched ok, but after the first feed, he would start unlatching within a minute of latching on. He would not stay on for longer. Noticing this, and with my previous experience, I brought my pump with me to the hospital and started pumping. I still tried to breastfeed him, worked with the specialist at the hospital, and just couldn’t do anything. He lost a lot of weight for a newborn. The pediatrician almost didn’t let us leave the hospital, but since he knew we were going to our provider the next day, he let us go. He had a much more prominent tongue tie and with his major weight loss, we got him in for a revision right away. It didn’t seem to help his latching on and off. We saw a few IBCLCs and they noted that he wasn’t sucking as hard as he should.

20181002_142832If you have read any of my other posts, you would know that we discovered he had hypotonia (low tone). This affects every aspect of his body, including his mouth, jaw and neck muscles. After about 2 months of attempting, and failing for different reasons, we resorted to the bottle and me pumping again. Another disappointment. I wasn’t devastated like the first time, but I was still saddened to know that this wasn’t going to happen. We also knew he was my last (due to my age and health). It was bittersweet. This time around, I didn’t pump nearly as long, stopping at 8 months. After my over supply wore out, we used formula.

When you set it up in your mind how you want something to go and then it doesn’t go that way at all, you can be heart-broken. And I was! This was a personal goal I had and failed. But looking back, I’m so happy I was able to pump. This gave family members and close people in our life a chance to also feed our babes from a young age.

I salute all those mama’s out there who are able to breastfeed. I salute all the mama’s out there are are not breastfeeding, for whatever reason! Having a child and caring for that child is difficult. There’s so much information out there and it contradicts itself over and over again. Us mamas have to do the best we can with the information we’re given. This includes how to handle breastfeeding or not breastfeeding our child. DO NOT let anyone tell you that the way you’re choosing to feed your child is wrong!

AzEIP – Advocating for your child! (for families who live in Arizona & my personal story)

If you live in Arizona and have a little one with special needs, you need to know about AzEIP and Raising Special Kids. If you have a good pediatrician, they should have already directed you to these programs. If you have not been directed, you may want to at least inform your pediatrician of these programs.  These are critical components to helping your child become the best person they can be from an early age.

secrets-to-raising-a-happy-babyAzEIP:

So, what is AzEIP? AzEIP stands for Arizona Early Intervention Program. From their website: AzEIP is a “statewide interagency system of services and supports for families of infants and toddlers, birth to three years of age, with disabilities or delays.” There are so many great things about this program, but the most prominent is that it’s FREE to families if your child qualifies.

So, what is considered a disability or delay? Well, areas of Fine Motor, Gross Motor, Speech, Feeding and Cognitive Development are just a few main ones. If you suspect or your child’s pediatrician suspects your little one has a delay in any of these areas, you can file for an evaluation.  You do NOT need your pediatrician to do this. This is important. You, as the parent or guardian, can request the evaluation, even if your pediatrician does not. You can advocate for your child! I love this.

The referral:

A pediatrician only sees your little one for a very short snip of time. You see and know that baby much more intimately. You’ve spent sleepless nights, been through exploding diapers, and spit-ups galore with your little one. You fill out an “Ages and Stages” form at the doctor’s starting around 9 months. This doesn’t encapsulate the whole picture. Depending on your working status and general care, you may not even be able to fill out the form as completely as you’d like. This is OKAY. This is just to give your pediatrician a snapshot in to your child’s development. But, if you feel that this is not catching the things you’re seeing, you need to do a couple things.  First, talk to the pediatrician. DO NOT wait for them to notice these things – more likely they will not. Let them know what you observe on a daily basis with your babe. It helps him or her get a better picture when you’re communicating (and advocating) for your child. Second, fill out the AzEIP referral form. Though your pediatrician may not be terribly concerned, if you still are, fill out this referral. The pediatrician should not be offended that you did this and should support your decision as a parent or guardian.

My kids have a great pediatrician. She has the mindset of “better safe than sorry”. She recommended I refer my daughter at 9 months and my son around when he was about the same age. She explained the process to me and the likely outcomes for both. She helped me find the website and start the application process (we did my daughter’s referral right in the exam room).

hi-doctor-baby-852-cp-is-8colThe outcomes:

  • My daughter did not qualify for AzEIP care. Though she wasn’t crawling well, she was moving. Because AzEIP has a threshold requirement, she did not meet that threshold. And, with a little more time and patience, she learned to walk (16 months old). She’s almost three and no one would even know that she was a little behind the curve in this area.
  • My son did qualify, in multiple areas. When he was evaluated, he was not sitting up on his own, he was doing this “inch worm” type crawl to move and they noticed – as his pediatrician did – the hypotonia. He qualified in his gross motor skills (PT/OT), fine motor skills (OT) and feeding (Feeding therapy).

What to expect at the evaluation:

Well, the best thing is that they come to you! They will come to your house to do the evaluation. They like to observe your little one in their own environment, but also try to make it as convenient as possible for the parent or guardian. Typically, there’s 2 rounds. The first round, the service coordinator will come and do a general evaluation of your child. They will also just talk to you about your observations and get your insurance information. The program is free to families, but they still do charge your insurance for their part. This means that AzEIP will absorb anything insurance does not pay so you pay nothing. If the service coordinator determines that a more in-depth evaluation should be performed, they will schedule a second visit with you.  This visit will usually include a therapist (or two) to evaluate your child more closely. Depending on what you tell the service coordinator, she’ll do her best to match you with the proper therapist so the evaluation is as efficient as possible. Due to their busy schedules, plan on a waiting period of about 2-3 weeks between evaluations. This is mainly due to linking all the correct people on the same day to meet with you and your child. At the second evaluation, the therapists will work with your child directly while you talk to them about your child’s overall development. This usually lasts anywhere from 30 mins to an hour, depending on what they need to check.  The have a chart they use to identify the markers of delayed development. There are 2 ways to qualify: below a certain threshold in one specific category (threshold depends on the category), or a combined score of 70 pts or less.

(Between the time that it took from the first eval to the second eval, my daughter began to crawl. This was the main reason she did not qualify at the second eval. So sometimes it just takes patience for your child to develop at their own pace.)

What to expect after the evaluation:

If your child was declined services, it may still be prudent to follow up with therapies elsewhere. The only difference now is that you will have to pay your co-pay/deductible out of pocket.

If your child was offered services, the therapists and service coordinator will go over the services for your child. They will also set-up a plan of action for the next 3 to 6 months depending on need. At the end of the allotted time, they will most likely set-up a time to do a re-evaluation to determine new goals and services.

(A good example of this is with my son. He initially qualified for physical therapy only. After his first re-eval 6 months later, he qualified for physical therapy, occupational therapy and speech therapy.)

babiesonthemove-57Being present:

These in-home sessions require a parent or guardian to be there for the initial meeting. Depending on the actual service provider, they may allow you to sign off on another family member or sitter/nanny. Mine did not – they required me there each time. These sessions can work around your schedule, as needed. Because I worked part-time in the mornings, I could schedule my meetings in the afternoons. Once I became a SAHM, I had the freedom to schedule when therapy best suited my son.

It’s important you’re paying attention to what the therapist is doing, saying and coaching. They only see your child once a week, or possibly less.  You are the one that will need to do these therapies each day. It’s tedious and sometimes difficult, especially if you have a second (or third) child in the midst. It’s critical to their development to listen to these therapists. They have special training and coaching techniques to help you best help your child.

Your child will likely resist the therapy. He or she is used to doing things a certain way, and let’s face it: Therapy is hard! It’s building muscles and developing connections that weren’t there already. Your little one is used to the way they currently do things – it’s easy. Now he or she is being introduced to something that isn’t easy, possibly hurts a little and definitely is not comfortable. If your little one is not vocal or does not use speech, your baby will likely show you distress through: Crying, screaming, resisting, trying to get away, seeking comfort – either from you or a favorite binky. You need to know that this is normal and okay.

The best way to prepare your child is to make sure he or she is well rested.  The worst thing you can do is schedule an appointment right when you know it’s nap time! If you are not doing feeding therapy, then make sure your babe has eaten enough to not be hungry. Also, you should make sure he or she has a fresh, clean diaper before the therapist begins working. Eliminate your child’s excuses to cry – this way if little one does cry, it’s specifically due to the training. sad-baby-si-770x513Though he or she cries a little due to discomfort, it’s okay! It takes a lot to retrain poor habits: just imagine if that cannot be communicated well. Imagine the confusion, distress and down right frustration. Now imagine you couldn’t communicate back! Your only way to say you didn’t like what was happening was to cry. It does get better! After regular therapies, your child will begin to be used to what’s going on around him or her and not be so distressed.

Know our goals:

You will set goals with your service coordinator and therapists about what improvements you would “reasonably” like to see in the next few months. These items may not be huge milestones. I remember one for my son was just to, while standing, side-step along the couch. That was it! It seems so easy and little, but depending on your child’s need, it could be life-changing.

Baby crawling indoors smilingAlso, you need to set and know your own personal goals. Not with your child’s development, but your expectations as your child’s caregiver. You will not be perfect about following up on therapy every day. You will not be perfect about providing the perfect environment for your child to develop new skills. It’s not feasible to think you can do it all. And best part – NO ONE is expecting you to! You need to be the BEST caregiver you can be for your little one. You do not need to be the PERFECT caregiver – they don’t exist! Note the difference – do your best, not what’s considered perfect.

At the end of all of this, there is no gold star, participation ribbon or trophy to be won. There’s no crowd of people applauding at the accomplishments (well, maybe grandma and grandpa). There is just you, your child, and your family. Remember that this is why you started this whole process. You wanted to be the best advocate for your child! Don’t lose heart, don’t let set-backs be disappointments, and just do the best you can each day. You are rockin’ this parenting thing!

 

Couch time makes my heart smile

My precious angel girl. She’s so perfect to me in every way. Though I know she’s hardly perfect, she just lights up my face with her personality. She’s feisty, independent yet also very empathetic and thoughtful.20190118_152408

One thing she is not is an early riser. Can I get an Amen?! This was absolutely wonderful for my night-owl husband and me. She would go to bed around 7 pm, and be in bed until at least 7 am. Yes! Twelve plus solid hours of sleeping.  No middle of the night wake-ups, no early morning “are you up yet”, our lives were golden.

Then we got the sledgehammer with my son. He thinks, “The sun might start coming up, so I’m just going to get up now.  Don’t want to waste that daylight!” He’s usually up by 5:30 am.

Our morning routine usually looks like this (note, I am NOT a morning person, so this is just how I interpret the morning while wishing I was still asleep):

  • Get the hell-creature of early morning perkiness up and feed him before he wails his banshee cry of hunger.
  • Oops! Didn’t change that pee-faucet catcher early enough, so now it’s leaked on his freshly worn onesie. Guess he’s going topless.
  • *hears the start of the banshee wail* Oh yeah, chair, food! *makes coffee*
  • Shovels 10 tons of food in to this miniature daddy creature (I don’t know where he packs it all). *takes a sip of coffee – still too hot*
  • The creature is now starting to resemble a baby boy, though he’s not too cute yet.
  • He gets a wipe-down, and is now free to roam.
  • OH CRAP! Forgot to close the baby gate to the kitchen, this baby has now knocked over the dog’s water and is trying to eat the dog food. Eww!
  • Get the dog food out of baby’s mouth. Clean the baby, clean the floor. Change the diaper – yeah! that’s what it’s called – again.
  • He now smiles his wide mouth, ear-to-ear smile.  He’s starting to look like my cute baby boy now! I smile back.
  • Allow him to roam again, this time with the kitchen gated off.
  • Go to the kitchen and make my breakfast – oh no! where did I sit that coffee down?!
  • *gets coffee and takes sip – too cold* I dump the cold coffee and start over.
  • *takes sip of new coffee – too hot, but still chug it* I shovel my breakfast as my sweet-sweet boy stands up and tries to grab it from me. I literally have to eat with my plate above my head or in another room.
  • Thank the heavens! He’s almost ready for his morning nap. Oh crap – forgot about that toddler of mine.
  • I look on the viewer, and sure enough, she’s awake, just laying on her bed.
  • Get toddler up, change her diaper ASAP and get her breakfast ready.
  • Now it’s definitely time for baby to go down for morning nap (about 8:30 am).
  • Toddler pushes her food around, maybe takes 2 bites and insists she’s done.  She then sits in her chair another 30 mins, because I am busy getting baby ready for bed (and let’s just face it, she needs to eat more than 2 bites!).
  • Baby goes down! He’s out for at least 2 hours.
  • Go back down stairs and force feed my toddler. I bargain with this child, because her will is much stronger than mine this early in the morning.
  • She’s finally “finished”!
  • I set her free to roam and she heads straight to the couch. Gets a pillow and blanket and asks to watch something on the TV.

I give this all to you to get to this point in my day. This is my joy moment. I love when she just wants to lay on the couch, many times lay on me as well, and “wake up”. We usually watch some show on our Roku, or a movie, but it’s our time. It’s just her and me sitting together, cuddling, talking, and eventually playing.

It’s almost as if she knows I need a break. Our little guy, I love him so much, is such an early riser. He’s so energetic when he wakes, and I just can’t keep up in the morning. It’s as though she feels this and knows – or so I’d like to think that.

I really believe she’s just like her daddy. They take a while to really get revving in the morning. Usually, they like to lay in bed for a good 30 minutes. Then they’ll have a small breakfast and just do something relaxing for another 30 minutes.20190613_083807

I know these moments won’t last forever, though there is a part of me that wishes they would. I know it’s fleeting, and I soak it up. There will be a day she will hide in her room, listening to her music with ear buds and not want to be around us any more than humanly possible. So I hold on to this time. This is our calm time, our quiet time, our cuddle time. It’s my joy time!

One year of hypotonia. Learning and loving through it all.

Every mother loves to hold and snuggle with their new baby.  What a treat when that baby is easy-going, loves to sleep and eats as expected.

We had our first sweet bundle of joy and none of the above applied.  She was colic-y (is that a word, if not, it is now!).  She didn’t sleep, eat and certainly wasn’t easy going.  If she wasn’t crying, she was fussing.  If she wasn’t fussing, she was whimpering.  You get the picture.  She was (and still is) our “tough” baby.  I wouldn’t have her any other way.  She’s almost three and loves to talk to us, tell us her opinion and make demands.  Typical almost-three year old.

When she was about 19 months, I had my son.  This was a night and day difference between her and my son.  His first night in the hospital and he slept almost eight hours!  Of course, when the nurse realized he slept so long, she immediately woke him up and we tried feeding. Sigh… so much for sleeping through the night!  With our other experience being quite the opposite, we were happy to have a little sleep!

We noticed early on though, he wasn’t feeding well.  He would constantly latch on and off, then on and off again.  He was struggling to suck and had a very noticeable tongue tie.  So, like our daughter, we had the tongue tie revised.  No improvement.  You could imagine our frustration and doubt.  We couldn’t figure out why he struggled so much.  He wanted to feed, he just couldn’t.  We went through IBCLC’s and even had a feeding consult.  He was not just struggling with me, he was struggling with bottles too.  We were lost and desperate.

At three months old, our pediatrician noticed it… hypotonia.  She was hesitant to diagnose this, since it is typically a condition of something else, not the cause.  She told us what to watch for, suggested therapy (physical and feeding) and gave us some resources.  We got him in to physical therapy, feeding was more of a challenge to work with.  He went to PT once a week and mainly worked on strengthening his core.  The therapist would give me things I could do to work with him at home.  Then the new year hit.  And the much higher bills of therapy hit.  We continued to go, knowing this was best, but at a much higher price.  Then the therapist that was working at this company (a contracted therapist) was not renewing her contract, thus we had no PT.  We were discouraged to say the least.

Fast forward to his 9 month appointment.  Doc comes in, evaluates him as usual and tells us he definitely has hypotonia.  She wants to continue on the PT route and start looking in to neurology.  Neurology!?  Seriously?!  I was overwhelmed with the “what ifs” and couldn’t believe my adorable, sweet-smiling, easy-going boy was going to need more evaluations.

We worked through the state run early intervention program to continue his physical therapy and feeding therapy.  This was extremely nice as it was free to us and the PT was in our house – no running to an appointment!20190424_181852

He made strides! At nine months he could sit up and eleven months he was crawling!  He wasn’t just doing his “inch worm” crawl (we called it this because he would push up on his hands and knees, then lunge forward, flopping his chest on the ground and doing it all over again).

We worked on getting him in to neurology asap.  His pediatrician wanted to run the standard one year tests, but also a chromosomal micro array work-up.  This was something she knew neurology would want anyway, and since he had to get blood work done, why not?!  I thought it logical, as did she.  Apparently our insurance did not!  With any chromosomal test, it has to be approved prior to the appointment.  I didn’t know this!  I had my first crash course in learning the insurance company nuances… it wouldn’t be my last.  They declined the test, saying there’s no medical need at this time.  What?!  Did they have a doctor magically evaluate my son to determine need?  I explained to our case worker that we were going to neurology in a month and knew they would also be requesting this test.  We were trying to avoid the delay and provide neurology with a better picture of my son’s health so they can make a more informed decision on what to do next.  She seemed genuinely sorry (my hands are tied kind of thing) and gave us some suggestions.

After talking with the pediatrician, we decided to just wait until the neurology appointment.

Here we are, on the precipice of knowing, but not knowing all at once.  As a fairly logical minded person, this is a struggle for me.  I struggle wanting to know what’s specifically wrong, so we know how to best treat it.  I also know that we may never know what is the cause of his hypotonia and will only be able to do our best to treat this.  Leg braces, 20190604_171527which I have learned are called SMO or AFO, are a high probability. Back and hip braces as well.  More fights with insurance about their rules and procedures are expected for all of this.

In the mean-time, I have an adorable little boy.  A boy who knows nothing different than what he currently has.  He does his best with what he’s been given and always with a smile on his face.  He’s our easy-going, loving kid.  He loves to be held and snuggled.  He loves to laugh.  And seeing this in him, seeing all his love of these simple things, helps me stay joyful through it all.