I Can’t Fix Everything

I Can’t Fix Everything

The biggest lesson that I have learned as a mom is that there are things that I can’t fix. Sometimes, I can’t “make it better.”  All I can do is comfort my child and hope for the best. I am sure every mom, regardless of their situation, has felt this way. Mommy can’t undo a skinned knee. Mommy can’t make the cold go away. Mommy can’t stop the reflux or throw up. Mommy can’t undo the nasty thing the middle school girl said. All we can is hold our babies and let them know we are there for them.

Last night I had a bit of a break down over this. For almost a month now Lyra has had trouble tolerating her continuous feeds at night. These feeds are CRITICAL because she simply can’t take in enough volume during the rest of the day, and she has to sleep. It is my understanding that almost all tube fed kids have continuous feeds overnight. I have tried many things including:

  1. Slowing down the rate of her feeds
  2. Doing a faster rate with long breaks
  3. Adding medication to help her stomach expand
  4. Adjusting her sleeping position (she just rolls back on her back)
  5. Venting
  6. Asking other tubie moms if they any ideas
  7. Calling her doctor

Things will work for a few days and then we will have another bad night where she pukes. Now, if she only pukes once every four or five nights, no big deal. But she has puked the last 5 nights in a row. Last night was a bad one. She puked at 2:20ish AM. The first puke was formula. Mark and I rushed in, one grabbed the baby, the other cleaned and re-prepped the bed (we have this down to an art, but I have no idea who did what last night). I then spent the next 45 min with a screaming baby who is puking, not formula, but mucus. This is when I started crying. I couldn’t make it better. I would happily to throw up 10 times a day for a month rather than have my daughter go through this. It breaks my heart, and I can’t fix it.

5 burp cloths, 1 sleeper, 1 blanket, and a new tee shirt (mine) later, I finally got her to calm down. However, I could hear the deep congestion and her breath rattled like a kid with a really bad cold. I couldn’t lay her down. She was so congested she would just puke again. So, I sat and rocked her until her next feed was due to start (4 AM).  I didn’t sleep much after that. Every little sound sent me to the video monitor to make sure she was okay.

I am working with doctors (being that every squeaky wheel) to try to find a solution, but I can’t fix this on my own. Mommy does not have a magic wand. All I can do is pray tonight will be better, even if I am oh so anxious that it won’t be.

(P.S. Lyra is doing well in general: gaining weight and growing. This is just a small (annoying) piece in a big puzzle)

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Lyra and Nico (Cousins)

Finding A Community

Finding A Community

I have been thinking about finding a community of people for support outside of the hospital. Don’t get me wrong, my family is AMAZING. The outpouring of support from my family is overwhelming at times. If Mark or I need a break during a feeding (they take at least an hour every three hours), there is almost always someone there to hold her. Also, family members have taken the time to learn how to use her pump and what medications she needs. However, it would be nice to have friends out here who understand what it is like to have a kid with a feeding tube. It would also be nice to have another mom that I can ask . So, I have been searching.  So far I don’t know anyone where I live, but I have found http://www.feedingtubeawareness.org/.

On this site, I found one very key page: For Friends and Family

I wanted to cry reading it because it hit the nail on the head for some of the things I experience and things I wish people knew. It showed me that it’s not just me. So, I have copied what it says below:

Dear Friends and Family,

We want you to understand a little more about what it is like to have a tube fed child. Because often, it means so much more than our child eats differently than other children. Nearly all tube fed children have sensory issues from multiple hospitalizations, invasive testing, far too many doctor appointments and generally not being able to interact with their environment like other children do.

Moreover, children with feeding tubes often have them because of having complex medical issues. The irony is that many children with feeding tubes do not look sick. Many conditions that can require tube feeding aren’t things you can see. See our condition list. However, because they do have underlying medical issues, they may be at increased risk when exposed to germs. Please understand it may take a lot to keep our kids looking and feeling healthy.

Here are some things we would like you to know:

Getting child care for a tube fed child is very difficult
It is not an option to get a babysitter off the street. Many of us spent time in the hospital learning how to care for our tube fed child at home. There is medical equipment that needs to be learned. Feeding schedules hold little flexibility, so start times are often important. Moreover, a number of our children have added equipment for respiratory issues (or other conditions) that require additional training. Even those of us with family nearby may not have family members who are willing or able to learn. We would welcome the support because we all need a break. It might be hard to believe, but quite a few tubie daddies do not even know how to do everything.

If we are going out we need to plan in advance
We need to arrange childcare or for the other parent to be home so that someone can take care of our tubie. Moreover, we need to make sure that whatever is needed (clean medical supplies, formula, medications) are all set up. All that said, we do like to see friends and go out. We appreciate being asked. Don’t assume we will not go. Like any parent, we might have things that come up that require us to change plans.

Some environments can be very challenging for our children
Birthday parties with lots of kids can be loud and boisterous. Many tubie kids are overwhelmed because of their sensory issues. This may lead to crying and vomiting. Tubie parents may want to know a lot more about the environment, the number of people, noise levels so they can vet the environment and weigh how their children will do. Moreover, tubie parents are concerned about exposing their kids to germs. A simple cold for a healthy child may land a tubie child in the hospital. Unfortunately, this is true.

Tubie kids may also get overwhelmed at holiday gatherings where eager relatives rush over to hug or kiss them. It may take them time to adjust to a new environment (and realize nothing bad like a medical test is going happen there). Moreover, holiday gatherings have a lot of food. Some of our kids want to eat, so it can be hard to limit food to what is safe for them. We would appreciate that food be kept out of reach of our kids and that a parent’s permission is received before any food or drink is served to our kids. For ex. Some tubies can’t have thin liquids because it will go directly into their lungs when they swallow, but if offered water or juice they may accept it.

Restaurants are not easy for tubie kids. Any child in a restaurant can be difficult, but tubie kids typically can’t be distracted by food. Moreover, people tend to stare when you bring a child to a restaurant and do not feed them. Wait staff may even take it upon themselves to bring your child food (this has happened to a number of parents who are then left to explain why their child is unable to eat).

We are tired
There are a lot of things that keep tubie parents up at night. There really isn’t such a thing as letting a tubie cry it out. The vast majority of our kids have reflux and crying quickly can lead to vomiting. Kids with reflux aren’t always the best sleepers. Some vomit in the middle of the night. Parents may have to investigate every noise. It could mean our child is in distress, it could mean they are caught up in their tubing, it could mean that their bed is soaked because the feeding tube med port popped open and formula has been flowing into the bed. Moreover, monitors or feeding pumps can and do beep. Add on other respiratory or sleep apnea issues and you are looking at a mom who is wondering when the last time she had enough consecutive sleep to dream.

We can also be emotionally drained
It is hard to see tubes coming out of your child day in and day out. It is a constant reminder they are not like other kids. Some tubie kids are undiagnosed. They have a list of conditions, but docs are still looking for the overarching diagnosis. This is very hard on parents. Moreover, kids may be going through a lot of testing, including testing for things that are life threatening. Families may not realize how stressed tubie parents are. Even with a diagnosis, there can be worry about what the future holds. Moreover, after having child where a new condition appears every few months, you can feel like you have post traumatic stress…you are just waiting for something else to go wrong.

Our level of empathy may have changed
We understand that it is difficult to for you to have a kid who has an ear infection or an infant who needs shots. But, we may not feel the same level of empathy as other parents. We have seen things parents shouldn’t have to see. Many of us shouldn’t have seen our kids intubated and connected to so many wires you aren’t sure how to pick them up (if you are allowed to pick them up). We have exposed our kids to anesthesia, barium, x-rays and prescription medications, often from very early ages. We have had to hand our kids over to surgeons.

We don’t expect sympathy or necessarily want sympathy from you
We love when when people get that this is hard and acknowledge what we do for our kids. The vast majority of us feel like any parent would step up and do the same thing if their child had medical issues. We don’t particularly feel that we were chosen for this based on super special abilities. Everyone can do this, but thankfully most people do not have to. Rather than telling us how bad you feel for our child or for us, try to focus on an accomplishment or acknowledge the challenge. It is great that [Child] is handling this so well. Or I know it must be hard on you [Parent], but you are doing a good job.

It may seem silly to you, but it might be cause for celebration for us if our kids eat even a small amount
A tablespoon can be a reason to jump for joy. A successful new food may prompt a facebook post. We celebrate these little victories because it gives us hope that one day our child might be able to eat and not have to rely on the tube.

A lot of tube fed children eat and drink some, but not enough to grow and develop
Just because you see my child have a bite or two of something, doesn’t mean they can eat or drink enough to sustain themselves and grow. And, a tubie child may turn his head away from the cookie you think he is going to eat. “All kids like cookies!” may not exactly apply here. It takes a lot of work to overcome feeding issues. It isn’t that we haven’t stumbled upon that favorite food our kids want to eat. Believe me, we have tried everything. Also, there are a lot of medical reasons why kiddos can’t eat. Those don’t often go away overnight.

Some of our kids are on SSI, Medicaid or Medicaid Waivers. Many children on feeding tubes are entitled to certain services. Please don’t think we are milking the system or are lazy.
Some tubie parents qualify for WIC, too. Specialized formulas can be incredibly expensive. Moreover, some insurance plans do not cover them and current legislation does not require it in many states. Medical formula can cost upwards of $1000 a month or more to feed a preschooler. On top of that there are copays for doctors, ER visits/hospital stays and other medical supplies. Some medical supplies aren’t covered by insurance at all. Moreover, many tubie families have to have at least one parent home. There are few jobs that have the needed flexibility that is often needed when a child has feeding issues or other medical complexities. So, money can be tight.

Many of us have encountered negativity, inappropriate comments and a lot of staring from strangers. Understand, we may be sensitive. Please think about what you say to us.
People always think kids are cruel, but often children are the most understanding. They ask questions and we are very often happy to explain. Children accept and move on. It is adults that are usually cruel. We have been told to feed our kids in bathrooms or not feed them at all, because it may make others uncomfortable. We may have asked what is wrong with them or shouldn’t they be in the hospital in unkind ways. People think we cruel for making small children wear backpacks or that we have them on a leash if we carry their backpack for them. We could go on and on. Just remember we are talking about how our kids get their nutrition and hydration.

And most importantly, to keep our kids nourished, it is all worth it.

So, I haven’t found anyone in person to talk to, but at least I now have a Facebook group and a website. As always, if you ever have questions about Lyra, her various conditions, and what how she is doing, I am an open book. Just ask.

Never Underestimate a Qualitative Analyst

Never Underestimate a Qualitative Analyst

Before I get going, let me just state that Lyra is finally home and doing great.  Not to toot my own horn, but it had everything to do with my strategy to feed her and persistence to get GI involved in the hospital. This is directly relevant to my title.

By trade, I am a Qualitative Analyst. Don’t get it confused with a Quantitative Analyst, those are the number crunchers. I deal with words, not just numbers. Now, data analysis is important and often plays a role in qualitative analysis. The difference is, I work with things that can’t be quantified. I take information from various sources and tell a cohesive story. I answer the questions, “So what?”, “Why is this relevant to me?”. I also use that information to propose solutions to complex problems. Many people (including my sister) have been baffled about how to apply this skill set in and out of the work place. So, let me put it in context of caring for Lyra.

Lyra has many people who are on her team. Her care (outside of family) involves an occupational therapist, dietician, gastroenterologist, cardiologist, surgeon, pediatrician, geneticist, and we will be adding physical therapist in the near future.  All of these people orbit Lyra and have opinions and insights to her care. However, they do not all communicate directly and the only common denominators are Lyra and myself. I am at EVERY appointment. Part of my job as her mom is to take the information that each of these caregivers, along with my own observations, and present it in a way that makes sense to everyone. My job is to tell the story that is “Lyra” that goes beyond test results and numbers on a paper.

According to test results, Lyra should not have been throwing up while getting NJ feeds. Also, according to test results, she should have been able to handle the volume/hr of formula the surgeons were prescribing. However, Lyra WAS puking and Lyra was NOT tolerating the volume/hr of formula she was being fed. Looking at the problem a few things came to mind:

  1. I know Lyra has trouble adjusting to rapid changes in volume. I have been puked on enough times to have solid evidence of this
  2. Her dietician had mentioned that, with cases like hers, you often can only increase feedings by 1 mL at a time
  3. Genetics has told us that most rules probably won’t apply to her since we have no idea how she will be physically/mentally impacted by her genetic abnormalities
  4. GI had previously told me that we will likely have to go by trial and error with her. If something doesn’t work, we just have to try something new

Using this information (mostly 1&2), I was able to come up with a solution for feeding her and present to the surgical team in a rational way. Was I sure that it would succeed, hell no. In fact, I anticipated it would fail. However, it has been about 6 days, Lyra is HOME, she is tolerating the total volume she needs every day, and she has only thrown up 3 times since we started using my method. What we had been doing wasn’t working, and we needed to try something new. Even the “wait and see” method had been tried and failed. With my professional skill set I was able to take the information from multiple sources, put it in context, and solve a problem. I didn’t spread sheets, or complicated equations. I took words from many sources, told a story that was relevant to audience, and proposed an information based solution. Because of my qualitative analytical skills, my daughter is home.

So what is a Qualitative Analyst? It is someone who using words, not just numbers, to tell a story and come up with solutions. In today’s world of big data, never underestimate the power of a Qualitative Analyst.

A light at the end of the tunnel

A light at the end of the tunnel

We finally feel like we can see a light at the end of the tunnel. This has, by far, been our toughest hospital stay emotionally. The surgery went great and Lyra healed really well. The surgeons did what they do very well. The problems came when we started to try to put formula back into her system. At first Lyra was fed through a NJ tube (tube that went through the nose, past her stomach, and past where they performed surgery). By the time we got up to “full feeds”, Lyra was throwing up stomach acid and bile every 5-30 minutes and becoming very dehydrated. The only way to stop it was to stop the NJ feeds. It was awful and didn’t make and sense. There wasn’t anything actually going into her stomach. Mid week we felt like we would never be able to bring her home. The only thing that kept Mark and I sane was our nurses who backed us up and argued with the surgeons about needing to change our approach and get GI involved. At the end of the week they did another test and discovered that everything was moving through her system just fine (meaning no need for additional surgery).

So, I proposed a new approach and surgery let me run with it.

We stopped using the NJ tube all together and moved on to using her G-tube. My thought was, if she was producing so much bile, we should give it a job. The worse that could happen is that she would throw up…. she was already doing plenty of that….Also, I remembered a dietician saying that with babies like her you can only increase feeds 1mL at a time. Before we increased the feeds my 5mls and we saw how well that worked. So, we started at 10mL/hour and increased by 1mL every 2 hours. Sounds crazy, I know. BUT IT WORKED. By 2 am last night we got up to the goal rate of 36 mL/hr (just over an ounce).

We also finally got surgery to call in GI to consult (it took 3-4 days of me pestering them). GI thought we did well and gave us a game plan for getting back to bulous feeds. They also gave us the total number of mL’s she needs per day, so we know if she is getting enough calories. When GI followed up with us this morning, they basically said that we were capable enough to do things from home with the information we have. Plus, it isn’t like we don’t have support. We have a nurse that stops by the house as frequently as once a week, plus an occupational therapist to help with feeding, my dietician is always available via email, and my GI doctor has an office 15 min. away from our home. Oh, and we have done this whole feeding tube thing for the last 3 months.

So now we just need to convince surgery to discharge us. They did an AMAZING job with her surgery (she has healed beautifully and they fixed the problem with her duodenum) We are hoping we get to go home tomorrow, but it might not be until Wednesday. The good news is, Mark and I see a light at the end of the tunnel. Our little one is quite the fighter.

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Yes, I know this is for breast cancer support, but she is a little fighter

AND

it’s nice to support breast cancer research at the same time

A Love Letter to Nurses

A Love Letter to Nurses

This is for the 30ish (give or take a few) nurses who have helped take care of Lra up to this point.

Dear Nurses,

I love you and thank you. Now, don’t get me wrong, the doctors are great. But you were the one who rocked my two-day-old for hours in the middle of the night when I couldn’t be there. You are the one who stood vigil by her side after a scary day at another hospital. You were the one who showed me how to change her diaper without making a total mess. You were the people to show my husband and I 10 ways to feed and burp her. You were the ones who hugged me when I melted down by her bedside. You were the ones who made sure I ate and drank…. and sometimes slept. You were the ones who helped me at 2 am clean her off…. and me off….. after she puked for the 20th time that day. You were the one who stood up for me when doctors didn’t believe me. You were the one who allowed to me sleep peacefully when I couldn’t be there. You were the one who fed her patiently when I felt so discouraged. You were the one who made sure I knew how to do CPR and how to feed my baby with a tube. You were the one who listened to me when I knew something wasn’t right. You were the one up all night with her while I slept a few feet away. You were the one to put hearts on her cheeks after she had surgery. You were the one to change her diaper when I couldn’t due to tubes. You were the one who diligently checked her vital signs around the clock. You have done all of this, and a thousand other things I can not name. I have watched you take tender loving care of daughter. For that, I love you.

Love,

Jaime and Mark

Nine Days and Counting

Nine Days and Counting

I am sure some people wonder how I can go home every other night to sleep (Mark and I trade off), but the reality is we have to. This is a distance race, not a sprint. We have been in here for nine days now and progress is slow. Mark and I need to have nights where we sleep through the night because sleeping at the hospital is brutal. If she isn’t waking us up, nurses coming in to do vitals are. They try their best to be quiet, but we sleep so lightly. The “beds” are far from comfortable and we are always worried about her puking. She pukes a lot. Those nights at home are key for our health.

However, those nights are hard in their own way. Right now we are living in a 450 sq. ft. house. Our main room contains a small couch, the glider we rock Lyra to sleep in, her changing table, her crib, and her swing. Some of her cloths are in our bedroom and her shampoo is in the shower. The thing missing is her, and there is no way to escape it. Most of the time I deal with it okay, but this morning was tough. I just want my baby home. I know she needs to be in the hospital. I know it is the best place for her. And I KNOW we made the right decision for her to have surgery. But frankly, the whole situation just sucks.

I miss laying down and playing on her play mat with her. I miss rocking her to sleep at night. I miss seeing her little face light up with awe whenever we would go outside (she is hooked up to too much for me to take her out here). I miss watching my family play with her. I miss swimming with her, or even just watching her wiggle and squirm in the bath tub. I miss putting her in her jumper and watching her talk to the lion. I miss carrying her around in her moby wrap.

I miss getting her dressed.

Right now she has so many things hooked to her that it is almost impossible to dress her. We have tried a few times and modified a few items of clothing, but she just ends up puking on them within minutes. I can’t even count the number of towels, burp cloths, and blankets we went through yesterday.

This morning was just tough. I just want my baby to come home. She is getting better, but it is painfully slow. Not only does her digestive system have to re-learn how to work, but it has to learn how to work correctly (something it has never done before). Her intestines have figured it out; now we are just waiting for her stomach to get with the program. It’s a long slow process and we are looking at at least another week here. Other days will be easier. At least today she has mostly sleep and have only puked 2-3 times. It is a better day for her, Mama will find tomorrow easier.

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Lyra and her new apple hat. Thanks Dawn for making her such a cute hat!

More Answers…. More Surgery

More Answers…. More Surgery

The results are in from the Upper GI test we had done yesterday and the provide us with some important answers as to why Lyra has so much trouble keeping food down. Unfortunately, it also means that she is going to need more surgery. We knew that she needed surgery to have the G-tube placed. However, the Upper GI has revealed that she also has a narrowing of her upper small intestine (duodenum). The condition is called duodenal stenosis and hers requires surgery to fix. At this stage, I don’t have an exact date for when surgery will happen. We are hoping for September 14th. I don’t have more information to give, but I have provided some links below with additional information about the condition:

Home Sweet Holy $h!t We Are Exhausted

Home Sweet Holy $h!t We Are Exhausted

Don’t get my wrong, being home is great! I love not having to drive 45 min. to see my baby. I love being able to take a nap without a doctor or nurse coming into the room. I love not having an alarm go off because managed to a lead off her chest. I love not eating cafeteria food all of the time. But just because I am home does NOT mean that I get anymore sleep. Her feeding schedule is tough and very involved. Here is what my/our days look like:

  • 12-1 AM: Mark feeds her (yes, feeding takes an hour)
  • 2:20 – 3 AM: My annoying alarm goes off. I pump while I blog, then I get ready for the 3 AM feeding
  • 3-4 AM: I feed Lyra
  • 5:40 AM: My annoying alarm goes off. I start to warm up a bottle from milk I pumped at 3 AM. Then I re-set the alarm for 6 AM and pass back out.
  • 6-7 AM: My alarm goes off and I used to pretend that I was going to do this feeding because Mark has to get ready for work…. I don’t pretend anymore. Mark does this feeding.
  • 8:20 – 9 AM: My alarm goes off and I debate if I REALLY need to get out of bed yet. The answer is always “yes”. So, I get up and pump and get ready for the next next feeding. Sometimes I even eat breakfast while I am pumping during this round.
  • 9 AM – 10 AM: Feed Lyra and give her the multivitamin (that causes her to spit up half of the time) and her inhaler (this is just for a few more days post opp)
  • 10 – 11 AM: This is when Lyra normally likes to be awake and play. If I have not had breakfast by this point, it is a lost cause until after the noon feeding.
  • 11 AM: Yet another alarm goes off.  Time for Lyra to take her Prevacid!
  • 12 – 1 PM: Feed Lyra
  • 1 – 2 PM: This is my best chance to get something done. If she is still awake, we play for a bit, but normally she falls asleep. I also normally try to eat something at this stage.
  • 2 – 3 PM: Pump and get ready for the next feed.
  • 2:50 PM: Normally Mark walks in the door from work. The angles sing, the baby smiles to her daddy, and I throw a little party in my head.
  • 3 – 4 PM: If Mark is home, he feeds her and I pass out in the bedroom. If he isn’t, I feed her and try not to fall asleep while doing so.
  • 4 – 5:30 ish PM: Lyra and I pass out together in the bedroom. If Mark is home, he finishes up his work in the living room.
  • 6 ish – 7 PM: *Sometimes Lyra is hungry a little early for this feeding*. If Mark doesn’t have training her does the whole feeding while “cook” dinner. “Cooking” is a term I use very loosely. Sometimes it means order food for delivery. Sometimes it means I throw something small in the oven. Rarely does it mean using pots and pans. If Mark is training, I quickly eat dinner (read “throw something in a bowl and hope it is filling enough”)
  • 7 PM – 8 PM: Play with Lyra if she is awake
  • 8 PM – 9 PM: Pump and get ready for the next feeding
  • 9 PM – 10 PM: One of us feeds Lyra. It really depends on the day and what we have going on. However, I always go to bed after this feeding and Mark often lays with her on the couch to catch a few Z’s.
  • 11 PM: Lyra gets her meds again and we start the whole thing from the top.

There is no “weekend” schedule. There is no easier way to do it. This is what our daughter needs, so this is what we do. It is just….. exhausting. In three weeks we will re-evaluate with the doctor and see if she has gained enough weight at that point. If she has, we might be able to modify things a little. Until then, this is what we will do!

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Lyra had rolled onto her side while I was pumping. Tyke was making sure she didn’t roll any more.

****Why it takes an hour to feed Lyra: First we change her. Every time. This helps wake her up if she was sleeping. Next, she takes what she can by mouth from the bottle. She has 20-30 min to do this, but she honestly is normally done after 10-15. Eating is hard and exhausting for her. She normally only takes about an ounce (30 mL- 40 mL) and than she is done. If we try to push it (and we have), she pukes. After that, we have to prepare the tools we need to feed her via the NG tube. We then check its placement, flush it, and feed her. She gets about 2mL/min. So, if she only takes 30 mL, we have to give 55 mL via the NG tube. This takes us close to 30 min. After that we have to clean the bottle and all of the tools used in the NG feed. All in all, it takes about an hour.****

More Questions than Answers

More Questions than Answers

This is a post that I have been waiting to write for almost a week. I waited, in part, because my husband and I needed to digest the information. Because of her challenges and a few physical anomalies, my husband and I decided to do some genetic testing on Lyra when she was admitted into the hospital this last time. Before getting discharged last week we received the results. Lyra has, not one, but two very rare genetic disorders.

Lyra has been diagnosed with trisomy 9p syndrome and 16p deletion syndrome. Not only are both very rare on their own, but there are no documented cases of a child having both. That doesn’t mean it hasn’t happened. After all, genetics is a new science. This leaves my husband and I in a tough situation. There is little information out there about either syndrome (and nothing about her specific diagnosis for 16p that I have found). For both syndromes, severe intellectual challenges have been documented. Physical challenges are also a likely possibility. However, in the case of 16p deletion syndrome, there has been at least one case of a child have an IQ of 130ish.

Basically, we now have more questions than answers. We have absolutely no idea what expect. We could have a child with mental retardation and extreme physical challenges, or a child with some physical challenges and/or intellectual challenges (such as a dyslexia). Or we could have anything in between. We literally have no idea. This is why my husband and I have needed time digest everything.

So, where do we go from here….. Honestly, we don’t really know. At this point our plan is to celebrate the accomplishments she archives (like smiling, cooing and making eye contact), and seeking out help when she struggles with something. We recognize that she will have major challenges, but if we play the “what if” game too much, we won’t be able to handle day-to-day life or enjoy our little girl.

So here we are.

 Resources: