Waiting to exhale

I remember the moment it happened.  I was just 27 weeks pregnant, admitted to Albany Medical Center's antepartum unit with polyhydramnosis and in pre-term labor.  One of the high-risk obstetrics doctors was performing a lengthy, in-depth ultrasound.  The room was filled with medical students, residents, nurses, the attending, and my husband and I .... yet you could hear a pin drop.  I watched the expression on his face and studied his eyes with intent, watching, waiting, needing him to say something.  I began to hold my breath, not knowing what the next moments of our lives would hold.  His expression continued to change, to intensify, as he studied the monitor in greater and greater detail.  The suspense was too much to bear.  It felt like hours went by.  Hours of silence.  Then finally, he spoke.

 

The doctor told us our baby girl had an intestinal obstruction in her duodenum, what they nickname a "double bubble."  She also had a large hole in her heart.  And he said she had Down's syndrome (which was later proven untrue).  We cried.  I cried.  And I continued to hold my breath, waiting for a miracle, a change, waiting for something to make it all okay.



She was born later that day after my water broke, via emergency C-section because she was in fetal distress.  She was only 27 weeks gestation, weighing just over 2lbs.  The next 100 days would be spent in the NICU.  Tests, surgery, diagnoses, specialists, beeping monitors, apneas, good days then terrible ones, the list goes on and on.  As each day passed I heard new medical terminology, I felt emotions I had never thought possible, I was confused and tired and an absolute wreck on this roller-coaster of prematurity and hospitalization.  I just wanted my baby to be okay.  And I continued to hold my breath, afraid to move, afraid to do anything, afraid that something else would go wrong.



Elizabeth went home on oxygen and an apnea monitor, and had great difficulty feeding and gaining weight.  Every day was a struggle.  Every hour was a struggle.  She wouldn't eat.  With her oral aversion she screamed at the mere sight of a bottle.  Her projectile reflux was non-stop.  She couldn't poop.  She couldn't be comforted or soothed.  We saw specialists for gastroentestinal issues, post-op surgery appointments for her duodenal stenosis correction, geneticists, pulmonologists, cardiologists, opthamologists, developmental pediatricians  ....  I felt like our lives were now ruled by doctor's appointments, diagnoses, and new things to try.  Early Intervention services began.  And through every minute, every second, I held my breath, waiting, too afraid that yet another thing would go wrong.  Some days I just cried.  I cried for the pain my baby was going through, I cried for the journey of parenthood that we expected but never got.  I cried and grieved the perfect baby I would never have.  Some days I didn't know how things would ever turn out right, some days felt more like nightmares than the beauty and treasure a newborn should bring.

 

But somewhere along the way, we turned a corner.  I can't tell you when that moment was.  But it happened.  So slowly I didn't even notice it.  But when I look at where we were, and where we are now, the differences are staggering.  Elizabeth just turned 3.  She graduated Physical Therapy but still receives Speech Therapy for feeding and Occupational Therapy for sensory issues.  The hole in her heart has closed on its own, which happens in less than 5% of kids with her type of ASD.  She takes 98% of her food by mouth (a complete turnaround from two years ago) and we rarely use her G-tube anymore, and she is gaining weight.  Albeit incredibly slowly, but she is gaining.  Her duodenal stenosis and anterior anus were surgically corrected and although she still has some GI issues, for the most part she is fine.  She also has ear tubes and had her adenoids removed.  The RSV shots helped her during her first two winters home.  She attends daycare 3 days a week.  My two pound miracle who's spent 116 days in the hospital, had 4 surgeries, has been on countess medications, who I watched turn blue and de-stat in front of my eyes multiple times .... is now a happy, healthy, thriving, witty, devious, silly, charming, giggling three year old.  There are days that the first two years of her life seem like a thousand years ago, just a distant memory, a blur in time.  To see how far she has come is nothing short of a true miracle.  It sometimes seems impossible that the fragile creature in the NICU 3 years ago now says to me "I love you so much Mommy."

 

Yet still, I hold my breath.  Instead of being able to let go of the past and be happy for where we are now, I cling to her diagnoses and specialists and problems, there is a desperation in the comfort and security I find there.  For so long that was the only life we knew, that's what I got used to, it was the new normal.  I am now faced with the challenge of accepting that my daughter is fairly "normal".  She still has issues and challenges, but it's a far cry from where we began on this journey.  For some reason I am not able to let go of her being a special needs child, of being a preemie with health issues, of counting MLs and ounces and calories, of worrying every second of the day if she was having an apnea or bradycardia and waiting to hear the beep of the monitor, hoping she wasn't aspirating on reflux yet again, of having this fragile child who can't survive without me.  But that's not our reality any longer.  I am so terrified and afraid that this beautiful ending will somehow go wrong.  I hold my breath and wait ... and wait ... and wait for the other shoe to drop.  Perhaps it never will.  Probably it never will.  But I live terrified each day that something's going to go wrong.  I still look at her and see the medically fragile preemie from 3 years ago, instead of the strong child she has grown into.  It's not fair to her for me to live like this.  When do I let go of this breath I have held since I saw the look on that doctor's face?  How long will I be waiting to exhale?  At what point do I come to terms with the fact that she's going to be okay, she's not going to die?  When do I accept the good that I have and stop focusing on the bad that is no longer?

 

The child I see in front of me today astonishes and amazes me.  She is my world.  She needs a mother who can live in the present and let go of the past.  Even though our reality is so much easier and more beautiful, the past is still my comfort zone, difficult as it was.  It's what I know, it's where I feel safe.  Change is monumentally hard for me.  I think that moving forward each day will be a continual fight for me to accept the amazing reality of the wonderful present, to let go of the complicated and difficult past .... to exhale this breath I have held for three long years ... and to watch the beauty of my child's existence unfold before my eyes.

Hearing Loss and Deafness: How Misconceptions Affect Those with Hearing Disorders

There are only a few things you can say to a new mom that will terrify her. One is that there is something medically wrong with their child. Whether it be an extra chromosome, a rare disorder, or even an unknown syndrome, the feeling is the same. Another is telling that mom that her child has failed his newborn hearing test. There are others to be certain, but those are the two that hit me the hardest when Jaxson came along. While he still has not been diagnosed with any known syndrome, that is not something that can be discussed in one blog. Instead, I want to talk about hearing loss and deafness.

The first thing I would tell any parent who has been told that their child failed the screening is this: Don't panic or freak out until you see an audiologist! Just because the screen comes out as a fail does not mean the child will be deaf. There are many reasons that a newborn fails the hearing test: fluid in the ears, a blockage in the ear canal, a nerve problem, etc. The test is designed to catch babies who DO have a hearing loss as early as possible. The same goes for the vision screening. A fail does not mean blind, it simply means there may be something that needs addressed. So the first thing you need to do is stay calm, and ask when you can have further testing done by an audiologist.

Once you get the answer to why the screen came out as a fail, you can then address the problem. Whether it be to put tubes in the ears, hearing aids, surgery to remove a blockage or even that the child is completely deaf, you know where you stand and what your child can and cannot hear. You will also know the next steps in the process, how often you'll have to follow up, and whether or not the condition has a chance of improving.



Technology has come a long way in assisting people who are deaf or hard of hearing. There's hearing aids and cochlear implants, there is a plethora of information on how to learn sign language and how to communicate with your child. The problem with such fantastic advances in technology is that, often, the social stigma that is attached to a certain group does not always go away at the same pace, or even at all. For the deaf community, this is a huge problem.

Growing up I did not encounter very many people who were deaf or hard of hearing, at least not in my own age group. Sure, everyone has a relative who lost the ability to hear due to age or (in my grandfather's case) war experience. But I never knew anyone my age who had to deal with it. I'm not sure how I would have handled it if I did. Many people assume (wrongly) that because someone is deaf that they must not be very smart. In fact, the opposite is true the vast majority of the time. Deafness can occur as a single defect or with other congenital defects, and most people have normal intelligence. Personally, I believe this stems from the inability to form words properly so that people can understand them. For example, the majority of people we come across think that Jaxson is blowing a kiss when he's really signing "Thank you," which is one of the most recognized and used signs by people who have no experience with the deaf community. Not only was this frustrating for me as a mom, but Jaxson was very confused because he has always been surrounded by people who understand him.

There is an extreme lack of education regarding hearing loss in today's society. With the advances in technology I described earlier, people born with (or who acquire) a hearing loss have many more opportunities now than they ever have before. If Jaxson had been born 20 years ago, we might never have known he had a hearing loss until he failed to speak properly at the right age. Because we knew about his problem, we expected the delay and have been able to put in extra work and therapy to get him up to where he needs to be. The issue is communication, and when people cannot communicate with what is the socially accepted "norm", they automatically assume that the other person is an idiot.

As a mom, this drives me batty. I know how smart my son is. He may be behind developmentally, but there is nothing wrong with his ability to think and reason out problems. He wears his hearing aids when I can make him, but at 2.5, it doesn't happen often. He still challenges himself and is now becoming more confident in his ability to try new words, which I believe is helping his confidence in other areas. Jax may be too young to understand everything that's going on around him, but he definitely knows when people treat him differently or don't understand him. He gets frustrated, sometimes he asks for mommy or daddy, sometimes he gets whatever it is he wants or tries to show you what it is, and sometimes it's too much for him and he just cries until you figure it out. It's not a very fun way to live, let me tell you. I'm quite sure Jax knows something is different about him, so when he cannot communicate, it impacts that thought process and makes things worse.

I'm not saying that everyone should go and learn sign language, although I think it would be really neat if more of the population took an interest in it, but I am saying that we need more education and awareness around the situation. Just because you can't hear something, or have a hard time hearing something, does not mean that you are not smart. It simply means that you need to communicate in a different manner, and others should be accepting and understanding of that. If Jaxson, at two years old, can communicate using American Sign Language, then others should be able to as well. Our entire family learned sign language so we can communicate with him. I do not expect the entire world to do that, but if we could get just a few more people out there who are willing to learn, and willing to try and understand what it's like to have a hearing problem, then we're moving in the right direction.

Here are some fun stats for you:

• According to the National Center for Health Statistics 48 million (20 percent) Americans have some degree of hearing loss making it a public health issue third in line after heart disease and arthritis.


• There are three types of hearing loss: Conductive (loss is due to problems with the ear canal, ear drum, or middle ear and its little bones (the malleus, incus, and stapes), Sensorineural (loss is due to problems of the inner ear, also known as nerve-related hearing loss), and mixed (a combination of conductive and sensorineural hearing loss. This means that there may be damage in the outer or middle ear and in the inner ear (cochlea) or auditory nerve).


• About 20 percent of adults in the United States, 48 million, report some degree of hearing loss.


• At age 65, one out of three people has a hearing loss.


• 60 percent of the people with hearing loss are either in the work force or in educational settings.


• While people in the workplace with the mildest hearing losses show little or no drop in income compared to their normal hearing peers, as the hearing loss increases, so does the reduction in compensation.


• About 2-3 of every 1,000 children are hard of hearing or deaf


• Estimated that 30 school children per 1,000 have a hearing loss


• Gradual hearing loss can affect people of all ages


• Hearing loss is an invisible condition; we cannot see hearing loss, only its effects. Because the presence of a hearing loss is not visible, these effects may be attributed to aloofness, confusion, or personality change


• Sudden, noise-induced hearing loss from gunfire and explosions is the number one disability caused by combat in current wars.


• More often than not severe tinnitus (or ringing in the ears) will accompany the hearing loss and may be just as debilitating as the hearing loss itself


• One in Five Adolescents Has Hearing Loss: Ear Buds May Be to Blame

Now here's a list of sounds and their decible levels:
Painful

• 150 dB = fireworks at 3 feet


• 140 dB = firearms, jet engine


• 130 dB = jackhammer


• 120 dB = jet plane takeoff, siren

Extremely Loud

• 110 dB = maximum output of some MP3 players, model airplane, chain saw


• 106 dB = gas lawn mower, snow blower


• 100 dB = hand drill, pneumatic drill


• 90 dB = subway, passing motorcycle

Very Loud

• 80–90 dB = blow-dryer, kitchen blender, food processor


• 70 dB = busy traffic, vacuum cleaner, alarm clock

Moderate

• 60 dB = typical conversation, dishwasher, clothes dryer


• 50 dB = moderate rainfall


• 40 dB = quiet room

Faint

• 30 dB = whisper, quiet library


• Decibel Loudness Comparison Chart source: From It’s a Noisy Plant: Protect Their Hearing

Remember this as well, a person can have a hearing loss at any, all or a few different tone levels. Of course this only makes it more difficult for the person with the loss to cope and figure out how sounds really work. But again, the advances in technology are amazing. There are even waterproof hearing aids now, which I find pretty amazing! And, just for kids, the molds that hold the aids in place can now be color customized in just about any way you like. Jaxson's are scarlet and gray, as any Ohio State Buckeye fan would have. For us, it becomes a talking point. A way for people to break the ice who want to ask us questions but don't know where to start. We use it to our advantage and talk to people about the benefits of sign language, and not just for those who have a hearing loss. It's proven that children who learn ASL at an early age have less tantrums and higher IQ scores.

I can attest to the lack of tantrums myself. Jaxson has an older brother, who we did baby sign language with when he was younger. Now, Jeffrey was an angel until about age 4. He never threw fits, did not act out, always listened and did not have a problem using his signs. When I say that, it doesn't mean he didn't have the occasional tantrum, every kid does. I just mean it was a rare occurrence. With Jax, it's been a little bit different. He has a fiercer personality with undeniable stubbornness and a need to push you to the next level. He does not throw fits. He only cries when he gets hurt, scared or sick. He uses his signs every single day and probably knows more words in sign language than toddlers his age can say. Both boys get rave reviews from their teachers at school, and both are smarter than they would have you think.

So, if we educate our children early on with sign language, not only will they benefit with a second language and higher IQs, but they will learn that those who have a hearing loss or are deaf are just as normal as they are. It's like any other disorder, the more awareness and education we give it, the better the results will be. Let's end discrimination altogether by teaching our children that "different" doesn't mean "bad" or "less", it just means different. And while different can sometimes be scary or uncomfortable, if we learn about it and understand it, we find that "different" isn't quite so scary or uncomfortable as we thought.

Statistics sources:
Johns Hopkins Medicine

Other sources:
National Information Center on Deafness and Other Communication Disorders,
National Institutes of Health,
National Council on Aging,
The MarkeTrak VIII Study by Sergei Kochkin, Ph.D.

Magic Mike, my grandson

I am the mother of three adopted daughters and one natural daughter. This blog is about Melissa, she is now 34, her mother drank as did her dad. She came to us at 8 years old bringing with her the scars from a life which weighed heavily on her. She suffers from Fetal Alcohol Syndrome which led to mental challenges, learning disabilities and a cleft palate. Her lower jaw was occluded, meaning it jutted out so that when she closed her mouth, her bottom teeth came over her upper teeth. She was also terribly needy when it came to attention and love.

Her struggles were unique and as time went by we found that our major concern for her was to acquire life skills. My husband and I went to all the IEPs and tried to communicate our fear that she wasn't being taught the fundamentals of life: reading and making food from a recipe, writing a check, budgeting, shopping for groceries. The school and teachers did not seem concerned about any of these skills. As time went by her face was becoming worse. Her jaw was occluding more each day! We found "Operation Smile" and they began an extensive bracing program to prepare her mouth for surgery. When she was 16 she had a massive surgery...27 screws, 3 plates and 9 hours of reconstructive surgery by an amazing plastic surgeon named Dr. Ruiz. He donated his time and talent to help kids with clefts and other facial deformities. Melissa was awesome when it was all completed and the swelling went down. Although, we still dealt with the other challenges, she felt so much better about herself. We saw many changes. She had confidence and the terrible headaches she experienced now came about every 3 months instead of 3 times a week!

Melissa graduated High School with a special diploma and at her final Transition Meeting a Vocational Rehabilitation counselor offered us VR's special help in trying to give her the everyday skills she needed. They also offered her a job coach, the ability to go to vocational school and more. She got a job in McDonald's and worked diligently. For the first time in her life she was making money, although she had no idea about it's concept, it was a beginning. Unfortunately, she met the wrong people and they got her to leave us and helped to put her on a road that was not terribly great for her or for us to deal with. All in all, she returned and left 4 times. I got a call that she wanted to see me, my fears had become reality, she was pregnant. Our family sprang into action, her older sister, my natural daughter offered her a place to stay upon the baby's birth. Tracy, her husband, family and friends built a room and furnished it with the crib, fridge, TV and bed. She was given use of the house kitchen, bath, living room, etc as well.

On June 29, 2012, Michael was born, he was a bit early and had some initial problems, but he went home in good health. He was a bit scattered in the beginning. We are not sure if the reason was his premature birth or something else. Melissa was given help through the county's Early Steps Program 0-3 services for at risk kids, WIC and she continued to work on a very part-time bases for McDonald's. While living at her oldest sister's she and Michael remained safe, as we tried to figure out how best to deal with the situation. Now we are that village that was so popular in the past. We, grandparents, Melissa's sisters and some really good friends, as well as, Volunteers of America have provided continuous help and support giving her the opportunity to live on her own with assistance and for Michael to get the support and help he needs to grow straight and strong.

Recently, we began to notice a shift in Michael's mouth. We realized that he was getting the occlusion which meant that it was from his heredity, not part of the FAS as we had thought until now. He has been seen by a pediatric dentist and will be monitored until he is 4. At that time he will be accessed for treatment and that care will begin in earnest.

This Christmas was the first year Michael has begun to understand presents, Santa's Ho Ho Ho, sparkling trees, special food, etc. There is nothing sweeter than seeing this through the eyes of a child.

Our road has been and will continue to be rough for them both but, I am so proud of the family that has stepped up...it has been so amazing to feel the warmth as we continue to work together with the objective being to make sure Michael grows up to be a fine person who is loving and caring. He sure has a large amount of good examples around him!
[caption id="attachment_6976" align="aligncenter" width="300"] Magic Mike with my daughter Laura putting together his first set of Legos[/caption]

[caption id="attachment_6977" align="aligncenter" width="200"] lovable 2 year old, with a bit of mischief in his eye[/caption]

[caption id="attachment_6978" align="aligncenter" width="300"] Michael and his mom[/caption]

A Survival Guide to Living in and out of the Hospital

As parents, my husband and I read all the books; the ones that told us exactly what to pack for the hospital and just what to expect when we got there.  Little did we know, our daughter’s birth, would be only the first of many hospital stays, and the last one that would come with a manual on how to make it run smoothly.  Little did we know, we would be writing our own manual as we went along, typing each page into our memories, as we lived out the unexpected set of circumstance, a virtual “How To” on living in and out of the hospital with your child or children which would end up being our case.

When the hospital setting became a revolving-door-home-away-from-home for our family, we realized we had to do our best to make the most of the cards we were dealt.  There was an underlying layer of resentment and bitterness, a grievance for the life we had had, for quite some time.  We knew only in pealing that layer away and releasing it would we be able to embrace the fact that this was our life and we had to learn how to live it.  It was the only way we would be able to adapt to the circumstances and thrive, not only for ourselves, but for our children.  They were not only suffering the physical consequences of their Mitochondrial Disease, but also the emotional effects of a family that was not suffering well.

Like the movie Ground Hogs Day we learned how to do things the right way, for us, after reliving the moment time and time again, changing things as we went, trying each time to make it operate more smoothly than the time before.  In hopes of saving someone else the time and torture of having to learn as we did, I have put together a list of things we have found works for us along the way.

1. Create a Frequent Flyer Packet

If you are like me there is nothing I find more tiring than answering intake questions; in the ambulance, in triage, for the charge nurse, for the med student (when we used to still see them), for the Resident, for the ER Attending, and then repeat again on the floor once you are admitted.  Yes, it is true that most of us parents of complex children could answer those questions in our sleep, and often are asked to, but you shouldn’t have to.    There will probably be plenty of opportunities in life for you to give a speech to someone about your child, but upon entering the Emergency Room or a direct admission you want to be able to focus on the medical concerns that brought you there, and most importantly the needs of your child. 

The best way I have found to avoid the exhausting repetition of your child’s entire medical history is to create a packet that best answers their intake questions.  I had nearly memorized the order of ours by the time I had taken a moment to do this for my own sanity, but you can request a copy of your hospital’s intake worksheet if you want to use it to help format your child’s packet.  Most importantly these are the things I have found from hospital to hospital a packet will be most helpful to contain; primary and secondary diagnosis, medications that are currently being taken (including PRN’s who prescribed them and what they are for), medications that have been trialed and why they are no longer used (this can sometimes help doctors who do not know your child from trying to reinvent the wheel), allergies and reactions (indicating if they are true allergies, intolerances, or neurological reactions), type of diet the child is on and how it is administered (what doctor or nutritionist in charge of their diet if there is one), medical equipment and services, a list of doctors, specialists, and service/DME providers, past hospitalizations and a brief summary of what happened, a summary of your child’s personality type and behavior, seizure types/descriptions if they have any, and other things they should look for or keep in mind (Does your child behave a certain way when they are in pain? Do they have any fears? Is your child sensory defensive or seeking? etc).  Some of these items can be placed into templates, or you can make your own.

We have found it best to keep this as short and sweet as possible.  Our daughter especially has a very long medical history, and we know that they could check out the A-Z encyclopedia that is her life if they were looking for it.  We just need something that we could keep on us, that we could quickly hand to them to help relieve the stress of all involved and keep the focus on our little girl as best as possible.  We have yet to meet a doctor or medical professional who is not just as happy as we are that we made an intake summary packet.  It truly does help keep what is often a stressful and disorganized process a little more put together.  Just be sure to have multiple copies as often times someone will forget to return it, or more than one person will need it at the same time.

Mommies of Miracles' has a great Quick Reference Template that is formatted in a way hospitals and clinics LOVE. Keep one of these up to date and on hand can really save a lot of time.

 

2. Keep a Small Overnight Bag Packed

It took me nearly twenty hospital stays to do this.  I often wonder if others are nearly as stubborn as I am.  I mean really, I knew with just her birth that we would need things packed prior to going to the hospital, but somehow after that it became not ok to be prepared for the hospital.  Somewhere deep down I think I thought I could stop it from happening if I ignored it, but clearly that did not work.  I guess we will just throw the overnight bag in the big pile of “things we need to accept,” that has become this life.

The first thing I would recommend putting in your overnight bag is copies of your Frequent Flyer Packet.  That way it is already good to go, right where you need it, and there is no last minute scrambling to find it.  Now, I should probably follow my own advice, so that I do not find myself hitting “print” every time we are ready to walk out the door.

Next, when you have some down time and are not in the middle of a medical crisis, I know I really just said that, but seriously buy an assortment of travel sized products.  Anything you know you use on a daily basis, that makes you feel good about being you.  You know; deodorant, toothpaste, razors, feminine products, things of that nature, buy an assortment in a small easy to carry size.  You can also purchase empty travel sized bottles to bring samples of your favorite shampoos and lotions if you would rather go that way.  I have gone days to weeks in the hospital with very minimal personal care.  While I was making sure my daughter was sponge bathed, had her hair done, nails painted, and generally felt as good as she could under the circumstances, I was looking and feeling less than human.  It wasn’t necessarily a personal choice I realized I was making, but it is one that is very easily forgotten about when your child needs you at their side and you are not within the comforts of your own home.

Lastly I would keep in your bag some socks and undies, some cash (the hospital seems to be the only place in the world that still requires cash for so many things), and an extra phone charger.  Of course we all have our own list of things we can’t live without or have walked out the door without too many times, but this is the bare bones of mine.

 

3.  Try to Avoid Eating Cafeteria Food

If you are like me eating in the hospital is a huge struggle.  Although our hospital has a parent meal discount plan, eating in the cafeteria meal after meal is not only financially draining, but also extremely unhealthy.  For just a single month long hospital stay of eating in the cafeteria it would have cost us $450 just to feed me.  That was nearly the entire grocery budget for our family of six on our one parent income, there was no way I could afford to continue eating that way.  Between two of our medically fragile children they were averaging at least fifteen to twenty-five admissions a year of varying lengths.  Unfortunately the alternative most days to cafeteria food, was not eating at all.  Our budget was drained, and my body was being seriously abused.

I try to keep nonperishable easily packable foods on hand that can be eaten in a pinch.  That way I can keep some items in the hospital room with me that can be easily prepared.  The best things that I have found are; tuna salad kits, granola bars, instant oatmeal, soup with the easy open tops, and trail mix.  Of course if you know you are going to be there for a long haul I have even gone as far as to have cereal and bread on hand to make sandwiches, but I usually reserve that level of moving in for stays longer than two weeks.

Do not be afraid to ask your hospital for help.  Most hospitals, especially children’s hospitals, have meal vouchers for parents in need.  In our hospital the social work team keeps them on hand.  Ours are good for a free meal under a certain amount of money.  No one will look at you crazy if you need to ask for one, if your hospital has them it is because they understand how difficult it is to financially provide for yourself and family when you have a child that it is ill.  There is no shame in it.

 

4. Utilize Your Hospitals Services

We were going through the motions for a very long time.  It was a constant duck our heads, half in shock, get in and get out way of handling the kid’s hospital stays.  It was not until I realized that we were not really gliding through as smoothly as I thought we were when I had my blinders up, that I realized there had to be an easier way of doing things.  I knew the hospital had great services for our kids, but they were a children’s hospital that is what they were there for.  It never really crossed my mind that they might have a few things that could help us as well.

First things first, don’t wait until your clothes are ready to walk off your body to ask if they have a washer and dryer you can use.  I don’t know why it took us so long to figure this little goody out, but it was amazing once we did. It was a long hospital stay, a really long hospital stay.  My husband had already made multiple trips back and forth with washed and dried outfits for me.  His gas was running low, and so was the amount of times I could wear the same yoga pants.  My daughter, who was quite ill at the time, had just gotten various bodily fluids on me again and I was about to have a very ugly, over tired, cry about it.  Just then it was like an angel came down from the Heavens, really it was just a nurse who was probably sick of smelling the both of us, told me she could get me some detergent and that I could wash our clothes.  It was a Hallelujah moment.  No hospital stay has quite been the same since.

Speaking of the gas my husband was running low on, sometimes the same people who hold the magic meal vouchers can also get you other things like fuel discounts.  Again we would have had no idea until we had to ask for some financial help.  Turns out sometimes asking is the best thing you can do.  I am sure this is not something all or even most hospitals have, but I am just as sure each hospital has their own hidden programs and services that are only a call for help away.

 

5. Ask Your “Village” for Help

Asking for help is a hard thing to do isn’t it? I don’t know why, it just seems like one of the toughest parts for us as parents of fragile kids.  It might be the fact that asking for help is opening for admission that we cannot do it on our own, but there has been nothing over these years like the sting of asking for and accepting help.

The thing is, it really does take a village.  Some just need their villages more than others.  Over the years we have naturally developed quite the amazing village of; family, friends, Church members, neighbors, etc. who have been there to surround and support us.  I know it is not always the case for everyone that they have such a large and supportive community, but whoever your village consists of be sure you accept help when it is offered, and don’t be afraid to ask.

We didn’t always have the support we needed, especially because we so often turned it down and didn’t know what to ask for.  We were so overwhelmed dealing with the day to day and the depths of the life we were being asked to live, we quite honestly didn’t even know where to start when someone would ask how they could help. We were drowning in despair as the stress and misfortune piled up; everything from the financial strains, to our child’s advancing disease were weighing us down. The bitter and angry part of me wanted to shout “does it look like we can be helped,” and maybe that was true to a certain degree, but only because we were so unwilling to accept it.

Here is what I would say to those like us, who need their villages a little more than most, make a mental note of things that people could help with if they asked.  Make an inventory of things you need to get done that are difficult for you given the circumstances.  Start enlisting your village.  Sometimes those family and friends that become quieter when our lives get tougher are more distant because they aren’t sure how to help, or where to start.  Open yourself up to accepting help and see what happens, you might just be pleasantly surprised.

 

Of course everyone’s Survival Guide to Living in and out of the Hospital will be a little different from each other’s.  In time like us, you will find what works for you and what does not, what has to be on your list of must do’s and what can be lived without.  My biggest suggestion would be to sit down in between hospital stays and write a list of things you would want to fix about your last stay before you go back again.  That will give you a pretty good indication of things you need to remedy for yourself and your family before you end up back outside the comforts of your own home.

Feeding Difficulties...Things I Wish I Had Known

Here she is.  My beautiful Sophie.  Feeding.  Looks all very normal doesn't it?  But the reality is that this was a rare moment in time.  I suppose we don't take pictures when we are busy dealing with a screaming infant.  And crying tears of our own. The truth is that feeding Sophie was fraught with difficulties.  Some of my earlier posts talk about the trials and tribulations.  Here are some things I wish I had known back in that dark and stormy time...

• That my daughter's difficulties with latching and feeding were in part due to low tone/hypotonia, and not my inadequacy as a mother.


• That my daughter's reluctance to feed was exacerbated by pain from reflux...the pain of feeding became an association..."drinking equals pain, therefore why should I drink?"


• That my milk supply was drying up as a RESULT of my daughter's inability (and reluctance) to feed well, not because I was somehow incapable of supplying the milk she needed. (That should have been a "no brainer"...I started with milk spurting from both breasts, breasts rock hard and leaking...my supply diminished over time as her reluctance to feed increased.)


• That (as a general rule) breastfeeding associations and lactation consultants are far more used to working with "neurotypical" children than children with "special needs", and that, unfortunately, much of the advice they had to give was not going to help my daughter.  Being aware of that could have saved me a lot of pain in wondering why, even when I followed every (sometimes conflicting) instruction I was given, we were still experiencing difficulties.


• That squeeze bottles designed for babies with cleft palates can also be amazingly helpful for children without cleft palates, but who are having trouble with sucking and swallowing.  That piece of information could have saved us a small fortune.  When I weaned Sophie off the breast (in desperation) at 6 months, I think we bought just about every bottle and teat on the market.  Except a cleft palate bottle.


• That breast pumping (particularly with an electric pump) is difficult.  And can feel humiliating.  But that it is okay to struggle with it.  It is not meant to be easy.  And it is worth it.  Sometimes.


• That once I was at the end of my tether with trying to pump, and finally had to introduce formula, I should have been offered the option of mixing some formula bottle feeds with some breast feeds rather than being bullied by hospital nurses to completely wean my daughter onto a bottle.


• That weaning your child off the breast is not the end of the world.  Sure, I would have LOVED to have breastfed Sophie until she was at least 12 months if not longer.  But in all honesty, it was better for my mental health (and therefore our whole family) for me to be able to share the feeds with my husband.


• That my daughter would drink FAR better from a sippy cup than any bottle (perhaps due to the nipple/teat feeding experience being associated with pain?).  When we introduced her to one, she couldn't hold the cup or tip it herself, so "technically" speaking, she wasn't "ready" for one...but it worked.


• That reflux medication is a temporary (and welcome) relief, but by no means the answer to "fixing" feeding issues.


• That children with gastrointestinal issues and/or food intolerances and /or allergies can react even to specialized hydrolyzed/hypo-allergenic formulas...even though some pediatricians will swear black and blue that it is "impossible" for a child to react to those formulas. As the formulas are “denatured", and the proteins are broken down, so there is "no way" that those formulas can cause issues.


• That there is currently no standardized, accepted test for detecting delayed food allergies (also known as food intolerances).  There are many methods of testing (skin prick tests, patch tests, blood tests), but none of them are completely accurate.  These tests can be excellent for showing anaphylactic (immediate and often life threatening) reactions.  But some foods can “creep up” on your child.  Small amounts over several days can trigger reactions such as eczema or sore tummies.  And there is no reliable testing available.  If a child tests positive for a particular food intolerance, it is almost certain they are intolerant of that food.  However, if they don't show a positive result, it doesn't necessarily mean they can tolerate that food.  They may still be intolerant or allergic. There is a lot of trial and error involved to determine which foods may be causing issues for your child.


• That changing my daughter's diet in an extremely radical way would change her life and ours forever..  For us, it was the GAPs diet that transformed  our lives.  Sophie went from multiple stinky diarrhea poos per day to normal gut function, and from waking every 45 minutes throughout the night to sleeping through.  I'm not suggesting that GAPs is the right approach for every child, I'm not a dietician, I'm just a regular mom.  I'm simply stating that dietary intervention made a huge difference to us. And GAPs doesn’t have to wait until your child is on solids –there are protocols available even for infants who would ordinarily still be fully breastfed or formula fed.


• That in the end, I already knew all this in my heart (except for the cleft palate bottle option, and the bit about the GAPs diet).  And that if I had my time again, I would not have allowed the medical profession to have so much power over me that I questioned myself at every step.


• And most importantly...I wish I had known that, one way or another, I would figure it out in the end, and things WOULD get easier.  Sure, other "special needs" moms told me that, repeatedly.  But at that time, I really couldn't believe it.  Our lives were consumed with trying to get nutrition into our daughter.  I was terrified.  I saw no end in sight.  But you know what...those moms were right!  At some point, you will figure out a way.  Whatever it takes. And it will get easier. I'm not saying that a child who can't eat will miraculously be able to eat.  But even if your child has to have a PEG...once you get there...once you finally figure out what needs to be done to get calories into your little one...the dark cloud will lift.

To all you Moms out there struggling with feeding. .. My heart goes out to you.  I wish you wisdom, peace and respite from the constant questioning and fear.  Listen to that inner guidance.  Trust that voice inside.  Do your research.  And then do whatever you think needs to be done. Whether that be persevering with breast feeding, bottle feeding, nasal gastric feeding or a PEG.  It is incredibly difficult to listen to your gut when you are on high alert, stressed, fearing for your baby’s life as they "fail to thrive", and being given advice by people who you believe to know better than you.  But as a loving mother, you have all the resources you need to figure out what is right for your child.  Research, join support groups for parents with special needs, and listen to your gut.  Don't be afraid of being judged.  Best wishes to all of you who are in the dark place.  Keep the faith. Blessings to all, Kath If you would like to find out more about my journey with my daughter, please feel free to take a look at my blog