Showing posts with label Anna. Show all posts
Showing posts with label Anna. Show all posts

November 13, 2014

Anna's ABM Journey

One of the most difficult parts of being a special needs mom, especially a CP mom, is making decisions on services. Although I count my family extremely fortunate to have choices, there are so many types of therapy that it can be overwhelming. All I want is for Anna to have the best and most effective therapy - the therapy that will help her grow and develop to her maximum potential. Ultimately, no one knows what that is as every child and every brain is different.

Anna has received physical therapy since she was in the NICU. Once we came home, we acted immediately to continue therapy with Early Childhood Intervention Services. We had consultations with physical, occupational, and speech therapists but ultimately decided Anna only needed physical therapy (PT) and occupational therapy (OT). We had in-home PT three times per month and in-home OT twice per month. Anna enjoyed "playing" with her therapists and we were happy with the services we were receiving. However, as parents (and grandparents) will do, we continued researching to see if anything else might be helpful for Anna.

Anna doing tummy time in her NICU crib
When Anna was 9 months old, we discovered the Anat Baniel Method. My mom came across Anat's book, Kid's Beyond Limits and had everyone in the family read it. As alternative therapies go, this one offers a great deal of hope. It is based in the science of neuroplasticity and the idea that the brain can change and heal itself. The book contains stories of incredible results and of course we wanted to believe Anna could be among these! Soon after we read the book, we learned that Anat would be giving a seminar a few hours drive from us so we loaded up Anna and took her on her first mini-road trip. During the seminar, Anat actually did a demonstration on Anna and showed how disorganized her brain's connection to her back was. According to Anat, Anna hadn't mapped the left side of her body in her brain after those areas were damaged by her brain bleeds.

Anat Baniel demonstrating a movement lesson with Anna
When we returned from our trip, we began seeing a local ABM practitioner, Tracy Roybal, who is about an hour's drive from our house. With the help of my parents, we began taking her to see Tracy 3 days a week every 3rd or 4th week. While we didn't see any immediate changes, we did notice that Anna seemed to initiate more movement than she did during her traditional PT and OT sessions.

Fast forward a few months - we added aquatic therapy to the mix and some additional  PT and OT so Anna was receiving 5-9 therapy sessions a week!! We had a packed schedule, but a major change was on the horizon for us. After another consult with Anat, we have made the difficult decision to discontinue traditional PT and OT and focus on ABM for the time being (though we will continue aquatic therapy). We have made this decision based on our faith in Anna and her practitioners and our belief that this will help Anna reach her maximum potential. As ABM is expensive and not covered by insurance, we have created a website for anyone who might like to support Anna on her journey: www.youcaring.com/standupforanna.

January 6, 2014

I Wish It Were 2013

On January 8th, Anna will turn one year old. I would be lying if I said I am excited for her birthday. Honestly, it is the 4th worst day of my life. She was not supposed to be born in January, she was supposed to be born in April. She was not supposed to have brain bleeds. She is supposed to be able to roll, sit up, hold a sippy cup with both hands, and maybe even crawl. But she cannot do these things, and it is all because of January 8th.

We had a nice Christmas with our family and Anna was spoiled with gifts and attention. But I wish we just celebrated Christmas 2012. I wish today were January 6, 2013 and I was 26 weeks pregnant with our perfect little Anna. I wish most of 2013 had not happened. No ventilators, IVs, feeding tubes, MRIs, surgeries, therapies, etc. etc. etc. I hate what she and we have had to endure.

Of course I am thankful. I am SO thankful for her beautiful smile and laugh, and for the amazing progress she has made given what we were told in the early days after her bleeds were discovered when were offered the possibility of taking her off of the ventilator. I am thankful for the support of my family and friends and the entirety of Anna's care team. However, being thankful does not mean I have to embrace every part of our journey. I certainly don't spend every minute feeling sadness and regret, but on days leading up to major milestones, I am flooded with these feelings.

We will honor Anna's first birthday with a small family gathering. I am not ready to celebrate, but we will honor the day we met Anna just as we do the day we met Patricia. I hope someday I will be able to celebrate.

No doubt Anna will enjoy her cake as she did her Christmas muffin!

November 19, 2013

Seeking Sleep

Where does the time go? I haven't written in a while. Like anything, my inspiration comes in stages. The October Capture Your Grief event gave me reason to write so much about our Patricia, and I really enjoyed spending time with her. Meanwhile, our lives with Anna push forward.

On November 8th, Anna turned 10 months old. On the 13th, she was 7 months adjusted for prematurity. Like any typical parents, our lives revolve around her schedule. No doubt about it, Anna is spoiled. She has been through so much that we usually give her whatever she wants, whenever she wants it. That worked for a while. Unfortunately, A few weeks ago, we came to the realization we had a sleep monster! Anna would only fall asleep when she was nursing or taking a bottle, and if she woke up without a nipple in her mouth, she screamed bloody murder! We had become so used to her eating and sleeping whenever she needed to that we failed to consider this might not last forever and that eventually mommy might need more than 4-5 hours of sleep a night. When she started waking up every hour and refusing to go back down, we knew we had to make a change.

Thus began the Googling. Sleep training this, gentle parenting that; I am practically a professional Googler. Like any parent, I wanted a quick fix and for Anna to all of a sudden start sleeping 12 hours with 1-2 wake ups to eat after which she would settle right back down to sleep. But which way is best? It is hard enough to see her cry during the medical procedures and shots she has to endure and articles like this piled on the guilt when we considered traditional "sleep training." I became increasingly frustrated. What is this magical thing where babies are put down awake and just fall asleep?

While things like sleep training and ultimately balancing our needs with Anna's make me feel like a "normal" parent, I can't help but feel our history makes it harder. How can we think about letting Anna cry when I would give anything to be able to cuddle and comfort Patricia? Not to mention the preemie mommy guilt that creeps in from the early days in Anna's life in the NICU when all we wanted to do was pick her up and comfort her but we could not. Hasn't she been through enough? I find myself wishing for and thinking we deserve, an easier baby. I love her, sometimes I resent her, and even though I know it's no one's fault because hey, she's a baby and we're doing the best we can, the guilt can be crushing. I feel guilt when I wonder if there was something we could have done differently to make this all easier. If I let Anna cry even a few minutes while I wallow and struggle to get up for the umpteenth time, I am ashamed to face her and I dread the morning when I wonder if she will resent me for letting her cry.

I admit a large part of my problem was/is impatience. Every day at work I would read about a new step we should implement, and every night when it didn't work I wanted to abandon it and start over. It seemed like all the books and blogs gave great advice on how to get baby to sleep, but no advice for what to do if baby refuses and starts screaming her little head off! Ultimately, we did implement some of the strategies I read about but like all else with parenting, we just had to make a solution that worked for us and we'll do it until it doesn't work any more.

Some nights are good. She goes right down, wakes up twice to eat and goes back down easily in her Rock n Play next to our bed. Some nights, like last night, are bad. She wakes up multiple times screaming and refuses to be anywhere other than our arms or on the boob. (I blame gas and/or teething). The key is to stay the course and support each other as parents. No blame or judgement on middle of the night decisions, but don't be afraid to offer a different solution if you feel strongly enough about it.

This is the goal, and oh what a beautiful sight it is!




October 16, 2013

Anna's First ER Visit

On Monday, our little Anna gave us quite a scare. At 4pm she vomited an entire bottle of milk onto Cliff. (I remember back when she came home from the NICU and she would spit up and I worried she was vomiting. NOPE! This was way worse.) When I got home at 5pm he had calmed her down and gotten her to sleep in our bed. I took her temperature in her ear and it was a little low, between 96.7 and 96.9 degrees over several tries. I let her sleep a bit longer and when she started stirring, I slipped in beside her to see if she would nurse a little bit to get some fluid back in. She did, and we were relieved. She went back to sleep and we grabbed some dinner. She napped longer than usual, so this time when she stirred I decided to give her a bath. What I had read online regarding a low temperature offered similar instruction for if she had a high temperature - a warm bath and warm towels. Plus, she stank!

When I got her in the bath, she was very weak and lethargic, reminiscent of her sleepy newborn days or the hours after her surgery when she was coming out of anesthesia. I also noticed how pale she was. I was then convinced that something was really wrong. After quickly soaping her up and rinsing her off, I picked her up and she vomited all over me. I decided to call the after hours triage for her children's hospital network.

The woman who answered took my information and said a nurse would call within the hour, but probably sooner. However, we had already decided to take her to the ER since were concerned she had contracted a virus that would affect her lungs. We packed overnight bags and headed to the car when the nurse called me back. She didn't seem too concerned since it had only been 3 hours since the first incident, but I realized I forgot to tell the triage woman about Anna's hydrocephalus and VP shunt and when I mentioned this to the nurse, she said to go ahead to the ER at the children's hospital.

If there's one thing we now know about having a VP shunt, it's that vomiting = red tag in triage at the ER. Our minds weren't really considering the possibility of a shunt malfunction because we feared she picked up something over the weekend during her first road trip (more on that later!) but it is true that with infants, vomiting is a telltale sign of a malfunction and we can never be too careful. 

Relieved to see 100% oxygen saturation
At the hospital, Anna vomited again but we were relieved to see she was breathing fine and had a normal temperature. The doctor decided to go ahead with a head CT scan and x-ray to check the shunt placement and ventricle size. At this time Anna was a little alert awake but still very drowsy. She made it through both procedures without making a sound. The CT scan was tough for me and Cliff since we were draped in heavy vests to protect ourselves all the way up to our throats but there we were scanning our precious little baby's head, again, but we know the necessity outweighs the risks.  

Waiting for our next procedure
The scans showed that not only is the shunt in the right place, but her ventricles are even more decompressed than they were at her last MRI in September! We were relieved to rule out a malfunction, but still no answer on the vomiting. The scans showed some fluid behind her left eardrum, which is actually a relief since she had some trouble in that ear during her checkup with the audiologist last week, but it wasn't dark or indicative of an infection. They decided to do a urine culture (by far the worst procedure of the night!) to rule out a UTI. This also came back clear. By that time, Anna had begun to perk up and was demanding to nurse. We did, and she held it down!

Around 10pm we were told we could go home and to follow up with our pediatrician in a week and come back if her symptoms resurfaced. By the time we got her home, Anna was back to her normal self. You'd never know she spent the last few hours in the ER! We are incredibly relieved that this was a false alarm and as sad as we are that Anna had to endure more testing, we know we did what we had to. It is a little daunting to know that we will have to go through that every time she shows sign of illness whether it ends up being a quick stomach virus, a cold, or a bad bottle of milk. However, Anna is a survivor and totally worth the effort!

September 6, 2013

Who Wore It Best?

Last fall, after we found out we were having a girl, we went to my parents' house for dinner and afterwards my mom said she had something for Anna and brought out a big box. I opened it up and inside was at least a dozen outfits from my infanthood! I had never really thought about her keeping them, and they were so well preserved. Mostly it was just my frilly little dresses, not everyday stuff, but she'd cleaned and pressed them all and they are beautiful. Even my coming home outfit was there!

About halfway through opening them I just burst into tears. This was something completely unexpected, but since we were team green before Patricia was born I didn't dream of her wearing my clothes nor had I mourned that. I am happy Anna has the chance to wear them but it hurts so much that Patricia cannot. That moment showed me how many difficult things are ahead. So many moments that will be so happy but also so painful. 

I meant to post this yesterday because of the #throwbackthursday trend, but I forgot. Last week my mom and grandma did a photo shoot with Anna and put her in some of the clothes I wore as a baby. The photos are adorable but they also make my heart ache for Patricia.

So, we are missing Anna's big sister but I am sure she would wear this dress better than me just as Anna does!

August 30, 2013

Kangaroo Care

When Anna was born, I was aware of the concept of kangaroo care and I knew it was something I wanted to do with her as soon as possible. When she was one week old, her umbilical lines were removed and I was able to hold her for the first time! It was one of the most emotional experiences of my life. I was so happy to finally be holding my own living child, but just two days prior we had received the devastating news of her brain bleeds and the weight of all of my experiences as a mother were heavy. I felt happy, sad, relieved, and afraid. I didn't know if it would the the first and only time I would hold her and I grieved for what I never experienced with Patricia.  

I also had unrealistic expectations. After all of the research we had done about the benefits of kangaroo care, I expected Anna to just melt into my chest and immediately relax and develop normal heart and breathing rates and for it to be this amazing bonding experience. I expected to finally feel like a mother. However, Anna was barley 27 weeks old,still under two pounds, and on a ventilator. It took a team of people to get her on my chest and she tolerated being held for a little while but eventually she got upset and her oxygen level began to drop so we had to put her back in the incubator. 


First time being held by Mommy
Totally worth it!
When we tried again a couple of days later, we both did a little better but unfortunately the vent tubes gave us trouble which resulted in a traumatic experience when Anna's oxygen and heart rates dropped very low and the room exploded with alarms and people. I ended up crying in the corner while Anna was bagged and the respiratory therapists worked to stabilize her. The sadness, anger, guilt, and fear I felt was powerful.

Thankfully, Cliff and I supported and encouraged each other to keep trying. We waited to hold her again until she was on CPAP which meant she was breathing on her own and even if the tubes got a little messy in transition, she could still breathe. Sometimes she liked it for just a few minutes, sometimes much longer. Sometimes it calmed her down, sometimes it made her restless and upset. With more encouragement from her care team, we charged on. She was just over two weeks old when her daddy got to hold her.


First time being held by Daddy
As our time in the NICU continued, we became champions of kangaroo care, literally! The hospital physical therapy team was in the process of rolling out a program to encourage kangaroo care and we did an on-camera interview regarding the benefits of kangaroo care for parents. We became celebrities as the video was shown to all staff and Cliff and Anna's photo was put on a flyer hung in all the NICU rooms! Cliff was named the Kangaroo Care King by the physical therapy team.

Cliff and Anna's picture on the flyer
First time holding Anna without tubes!
As Anna grew and became more comfortable with our touch, kangaroo care became the biggest part of our day. Cliff and I would trade off holding her, sometimes up to 12 hours a day. We were lucky to be in a NICU with all-private rooms and the ability to room in so we could shut the door, pull up the computer, and watch movies and TV shows on Netflix while we held her. It was the next best thing to being at home in our living room! We (and her care team) truly believe that the hours and hours of kangaroo care we did with Anna have greatly contributed to the progress she has made in her development. It also made a difference in our confidence as parents and our overall NICU experience.

I plan to do kangaroo care with all our future babies and may even get my kangaroo on with Anna tonight. It's never too late!

August 16, 2013

Our Little Mermaid

We live in Texas where the pool heats to near 90 degrees in the summer so as soon as Anna was cleared after her shunt surgery in June, we were ready to get her in the water! We wanted to give her a new sensory experience as well as give her the chance to exercise her muscles without fighting gravity. We guessed she might enjoy it because she LOVES her baths, but we didn't want to overwhelm her. We started out slowly, just taking her in for a few minutes at a time. She tolerated her first swim very well! I say tolerated because she wasn't smiling, but she certainly did a lot of kicking! She had a very focused expression. Kicking is hard work!

Anna's First Swim
One of the many (sometimes strange) things Anna's grandma has purchased for her is a swim collar. The first time I saw it, I said NO WAY would that thing be around Anna's neck! But after researching aquatherapy for cerebral palsy and seeing the collar in use, I relented. Despite the fact that we had it on backwards the first couple of times, Anna seemed to enjoy it. I like that she can move both her arms and her legs and because she is fully immersed she can swim longer before getting chilly. We have to watch her though, because she learned she can push off our stomachs and swim away! She likes swimming with her collar more each week.

Working it out!

July 31, 2013

Summer Adventures

We were lucky to bring Anna home just as RSV season was ending. (For those unfamiliar with RSV, this link provides a good overview). While it is important we keep Anna away from anyone exhibiting symptoms of illness, it is also important that we do as much as we can to provide stimulation for her brain! Here are some of the adventures we have been on this summer:

First outing at the Botanical Gardens

Picking out plants at the garden center

First encounter with Texas longhorns on a walk around the neighborhood

Sleeping at the Museum of Science and History

Woke up in time to marvel at the wall of bubbles!

Learning about some amazing women at the National Cowgirl Museum

Keeping an eye out for sharks at the Sea Life Aquarium

Staring down a freshwater fish

Keep checking back to see Anna's August adventures!