Time is just flying by. Where did this year go? If I could stop time and hold on to Natalie's last month as baby I would. Of course I want her to catch up to her milestones, but I am quickly learning to stop wishing time would pass, and hold on to the moment. Her sweetness and precious giggles leave me speechless. I can't tell you how sweet her laugh is, or  how amazing it is to watch her play with Samuel. She loves her big brother more than anything. She is such a happy baby, and loves going out with the family. Being able to take her out more often has made such a difference for her and the whole family. Summer is here and we intend to live it up while it lasts.

So lately I have been asked a lot of questions about her delays. She is delayed, and is on her own clock and will achieve things as she can. She is determined and very smart. She takes in so much and nothing gets by her. I think her sensory impairments make her more in tune with her environment. She watches everything, and studies her environment intently. Natalie can sit unassisted for a minute, and she occasionally rolls to her tummy. Usually it's to see big brother or a favorite toy. She loves music, bath time, and going for walks.

Heart wise she is doing good. Our last echo showed the same results as the previous ones. Although it is still bad, she seems to be doing well. As she becomes more active, she will put more strain on her heart.  Her Surgeon and Cardiologist plan to wait until she shows signs of heart failure before surgery. Michael and I anticipate surgery before late fall, or next spring. Of course we could be wrong and it may be a lot longer or next week. It's really up to Natalie, but I don't see Dr. Reddy waiting much longer, and would prefer repairing her heart before Flu season kicks up again. Her last few monitor observations showed elevated QT levels (this could cause heart failure) so she is currently being weaned off her arrhythmia medication. The original plan was to keep Natalie on arrhythmia meds till she was two, but now the doctors are thinking it may be best to get her off them. Hopefully this works because there are just a few more drugs that she could go on.

It's confirmed that she has profound hearing loss in her left ear. Our doctor's don't believe a hearing aid will make that great of a difference for her left ear. The plan is to purchase a softband BAHA so she can get as much sound to her right ear. They are very expensive, so hopefully our insurance will cover most of it. Her right ear is still within the normal range. The plan is to do hearing tests every few months to track any changes. CHARGE kids experience various degrees of hearing loss, which can also change over time. Natalie's hearing loss is a combination of conductive and neurological, so the trick is going to be treating the conductive loss as much as we can.

Our Opthamologist confirmed that Natalie has a malformed optic nerve in her left eye. Although her MRI showed no optic nerve Coloboma, it is obvious that her eye definitely works harder to focus.  It's likely she will start wearing glasses in the Fall. Her right eye seems to be 100% normal. Patching seems to be impossible, as she always finds away to pull off the patch.

She still sees all the usual therapists. They all love her of course, and are amazed how much she is improving. Unfortunately, Early Intervention (EI) stops through the summer. Our Physical Therapist through EI is amazing, and has been instrumental in her growth and development. Natalie is so blessed to have experienced and caring therapists working with her. 

Her head shape is improving a lot. Yay!. So grateful the helmet is helping. It's not fun traveling to Portland every other week to get the helmet adjusted, but at least it's improving her plagiocephaly. She will wear the helmet for a few more months at least.

Now for the biggest change...She is being weaned off of her G-tube. At first I was so nervous, but after 5 weeks of weaning, she is eating all of her meals during the day orally. Drinking is still challenging, but she is improving day by day. Over the last two weeks she gained 5oz. Go Natalie Go. She is our little rock star. If I have learned anything this past year is to trust your instinct, and pray. Pray and believe that God is faithful, and through him all things are possible. Natalie is doing so much better in this area than anyone would have thought. Of course we know CHARGERs defy the odds. I am still hoping by her first birthday she be off her G-tube completely.

Life at the Pierce household is ever so exciting. Terrible 3s are at the height. Raising a busy three year old keeps us busy. Samuel just started preschool for some much needed time away from mommy and daddy. It's been really good for him to be around other kids,  and mommy and Natalie get to go to appointments by ourselves.

There are no words to describe how blessed we are. A year ago we had no idea what to expect with Natalie. We didn't know if she would even come home from the hospital. I wish that I could see into the future and know for sure that my baby girl is going to be fine. I guess this is why I have faith, to believe in what is not seen, and asking fervently for God to make Natalie whole. I don't see CHARGE syndrome and all the crazy medical issues that come all with diagnosis. I see a beautiful baby girl made in God's image. It's still hard to believe God gave her to us. What a gift, and privilege it is to be her mommy. 

Blessings,
The Pierce Family 



  

Joy beyond measure

My heart is full. My family is growing strong, and our little girl continues to defy the odds. I am hesitant to be excited, but I am rejoicing during the good times. Life is constantly crazy, and it never feels like it's going to end. I am not sure even sure what it was like before two children. All I know is I wouldn't trade our life for anything. Yes the future is unknown, but we put our hope in God. He is faithful, and so merciful. Michael and I are beyond ready to be involved in the church community. Samuel is thriving, and adores Natalie. 

We are still doing all the usual doctor and therapy visits. We are starting vision therapy this month. Natalie is extremely lucky to have a such a great team of doctors working with her. They fight for everything she needs and more. Last month we have a team of nurses who went out of their way to make sure Natalie got her RSV shot. Words do not describe how thankful we are. She is loved, and one of the nurses always says she is Natalie Peoples... (that is the last name of her doctor). It's great knowing that Michael and I can trust their advice and direction, and that they all truly care for her.

Our trip to Portland went well. We managed to coordinate a CT, MRI, ear tubes, lower airway scope, and a sedated echocardiogram.,..and they said it couldn't be done! Things do happen when you are persistent. I am glad that Natalie shouldn't need any other procedure in the near future, outside of heart surgery. We gathered a ton of information, most of which confirmed what we already expected and knew.

Her CT showed that she does not have semi circular canals in both ears. She has chonal atresia, which will be repaired this year.

Her MRI provided a lot of valuable information about her cranial nerve abnormalities. I am not not sure how accurate the scan was, but in a nut shell the results are great. Her brain is generally normal in morphology, and signal intensity...She basically has a normal range of white matter. There is no fluid collection, or masses, and she does not have hydrocephalus that was originally diagnosed. With CHARGE syndrome there are numerous cranial nerve abnormalities, and Natalie definitely has the vast majority of them. She does not have her olfactory bulbs, no left cochlear nerves, her facial nerves, and nerves 9, 10, and 11  are  hypoplastic. She is also missing her semicircular canals (her balance organ) in both ears. I am sure many of you are asking what all of this means. Like so many CHARGE kids they overcome so many difficulties. Things that we take for granted, like walking, eating and drinking, smiling, and talking are more challenging for CHARGE kids. The good news is that they find ways to compensate. Natalie is already showing us that she is willing, and wanting to experience life at its fullest.

We recently did another hearing test. According to the MRI Natalie shouldn't be able to hear out of her left ear, but she has had responses on her ABRs. Basically, we have no idea if she may actually have a small nerve that was not seen on the MRI. . Her hearing out of her right is normal. She will continue to wear her BAHA until we have more information about her left ear. She may not need a hearing device if there is she does not hear out of her left ear. Kids with CHARGE often experience varying degrees of hearing loss throughout life. It is a constant management of their conductive hearing loss. Knowing that she can hear us is such a joy. We will continue to do more hearing tests, and decide in a few months what Natalie will require long term. Michael, and I strongly believe that it is in Natalie's best interest to learn sign as a second language. We hope that she will use both spoken and sign language.

Did I mention she is so cute in her pink helmet. She is tolerating so well, although she has not slept in it yet.  We will get her up too 23 hours eventually!.

She loves yogurt, and is slowly improving on eating. She is showing anticipation for food, which is a huge difference than the previous months. She is showing us what she can tolerate. In time she will be a fully oral fed baby!

Spring is near

It's almost Spring time! I can smell it in the air. After an extremely long winter, we are all ready to spend time outdoors. We all have cabin fever, and can't wait to take the kids out to the parks, pool, and take a mini family vacation. That's right...VACATION. We so need some fun time. I got the o.k from the doctor as long as Natalie is healthy. We don't plan to go far, but I will take whatever we can get. Maybe a trip to the Oregon Coast is around the corner.

Where to begin....Natalie is getting so big, with a whopping 17lbs. I just love her chunky cheeks, belly, and legs. If she only realized how adorable she is. She is catching up to many milestones. Although her head bobbles, and she is not totally sturdy, she can sit unassisted for a bit. She reaches for almost everything, and just adores her big brother. She smiles mostly at him, and occasionally at Michael and I. She is definitely a Mommas girl. She reaches out for me to pick her up all the time, and cries if I leave the room. Yes I hope the phase doesn't last forever, but right now I am relishing in the baby love.

Can you believe she is 8 months old? She has been home for 6 months, and so far we haven't had any major hospitalizations. Just another month and the Flu and RSV season will be done. RSV is at the height right now in Bend, so we are taking extra precautions. We're currently fighting to get her last RSV shot. It seems that our Oregon Health Plan is more of  pain than a help. Providers are very reluctant to give Natalie service. It took over a month to finally get a helmet for her. We will have it fitted next week. It's pink, and I of course we will get some cute stickers for it. 

We are only doing an Echocardiogram every other month. Yay! We are watching her heart closely. She is not showing any signs of heart failure, and is thriving. For now we are rejoicing, and are so grateful that she is getting stronger.  Please know that it can be anytime. Heart failure usually occurs quickly. It can be weeks, months, or even a year. It's still very difficult to say.  As long as Natalie continues to grow and get stronger we are in better position for her next surgery. 

We leave for Portland next week. Natalie is getting tubes placed in both ears to elevate fluid build up. I am hoping that her hearing improves in both ears, and she will feel better. Her left ear has had a constant effusion since she was one month old. She has been treated twice for ear infections as well. We are also trying to schedule an MRI. It's challenging to due multiple procedures because Natalie requires a special Anesthesiologist. Please pray that her procedure goes well, and she comes off sedation fine.

We are attempting our first g-tube weaning trial. I have no idea how successful we are going to be, but I my gut feeling is that we must try. She is not nearly as interested in food, so I want to capitalize on any remaining interest that she has. Her stamina and coordination has improved greatly, so we are going to see what she can do. The most challenging part is going to be teaching Natalie to eat when she is hungry. She has never really experienced hunger. Our plan is to reduce her nightly feed so she wake up hungry. Of course we can only push her so much, but I am confident that she can do it. If she loses more than 10% of her weight we will stop and try again the following month. I am both nervous and excited. It's going to be hard to let her be hungry, but it's the best thing for her long-term.
We also are going to be doing even more therapies. We are going to begin vision therapy, and do outpatient physical therapy at the hospital. It's going to make us even more busy, but she really needs more care. We are wanting to focus on building her core muscle strength and improve her head control.  The extent of Natalie's vision loss is still not known. She is compensating to see to her left, but we are noticing her left eye is slower to focus. I am looking forward to working with a vision therapist to see how we can improve and strengthen her left eye. Good things take time...

We are going back to church next month! I have never gone this long without being in a church community. I am grateful that we God has kept us reasonably healthy but I sure do miss the fellowship of other believers.

Please pray that we remain healthy this month, and Natalie will get her RSV shot. Also that her tube surgery goes well next week. We will be gone from 17-20th.

Love The Pierce Family

Heart Healthy

Our little girl's heart is so complicated. I am so grateful for her repair, but it is making it difficult to read her echocardiograms. Typically, velocity is measured to calculate a gradient, which illustrates the severity of Pulmonary Stenosis. For whatever reason, Natalie's gradient calculations range greatly, making it difficult to get an accurate assessment. Dr. Reddy and our cardiologist decided it would be best to measure her right ventricle output, as these measurements are more consistent with her Cath. They are also watching to make sure her valves are not leaky. To say the least I am confused, and we are still waiting. We will do echo's monthly, and likely a sedated one in the coming months. It sounds as though we may be able to put off surgery for awhile, but you never know. Things change quickly. We're  also meeting with our electrophysiologist next week. We will be discussing her arrhythmia's medications, treatment, etc.

She is battling a cold right now. She is strong, and managing fine. It does seem like we are suctioning constantly! She started antibiotics today to clear up another ear infection. Hopefully she will be feeling better soon.

Did I mention she is a whopping 16lbs...My goodness. My little chunky girl. Although she doesn't go out much she still wears all of her adorable outfits, shoes, bows, and hats! She is dressed better than most.

I can already see sibling rivalry. She takes Samuel's toys, and Samuel thinks everything is his. Of course she can't fight back yet, but I know one of these days she will.

Michael and I are in full swing, and managing well. We found out that she didn't qualify for Developmental Disabilities. All I can say is they said no to the wrong family. I will apply, and reapply, and reapply until she gets it. She will really benefit from it, and I am determined for her to get it. There reasoning is terrible, and completely incorrect. They said that although she has CHARGE, it doesn't mean she is cognitively delayed. Ironically enough she qualified for OHP, the Oregon Health Plan. What a relief and answer to prayer. Many of our costs, like hearing aids, co pays, and prescriptions should be covered now. I am grateful that God continues to equip us with the skills and means to take of her.

We continue to move forward and are even starting to talk about future plans. Did I just say future plans. Yes I did! It feels good to plan, and dream. Although Natalie still needs to spend a lot of time indoors, we are excited to get Samuel involved in some activities. I am also planning on volunteering for the Red Cross again.

Today I got a package from the kids at Lava Ridge Elementary, where she is a Sparrow. All I can say is how sweet kids are. Raising a special needs child is frightening, especially knowing that her peers may not accept her. These kids have already accepted her as their friend. I am in awe, and look forward to her school days. And hey if kids do tease her she has her big brother to look at for her!

She had her first belly laugh. These moments are priceless, and I cherish each of them.Watching her develop, and make milestones is a big deal. She is persistent, and as sweet as sweet can be.

She loves sucking on mango and apple slices. We're still working on tasting foods. I realized that as long as we consistent and give her opportunities to try food in a fun manor she will eventually consume enough. I was imagining that she would consume her daily calorie intake via rice cereal, and purees...and than I remembered she is only 7 months old and it she will when she is ready. I have no doubt that she will be an oral eater.

We're planning on tubes, and another MRI in the next few months. As we know more I will keep you posted. For now enjoy these moments of celebration with us.

Blessings,
The Pierce Family 

Getting so big!

I might be the worst person to ever do a blog. I always plan on updating, but time escapes me these days. I often wonder how parents with 2+ kids can do it, or twins...yikes. Some weeks are more difficult than others. I can't imagine what Natalie feels like, going from one appointment to the next. Our new "normal" has become a routine now, and we seem to be getting the hang of everything. Most of the clinics know us by first name basis, and accommodate our needs. Natalie has seen a ton of doctors, and they have a really good idea of her symptoms and future interventions. I am so grateful for our doctors in Bend, Portland, and Palo Alto. It makes it so much easier knowing that Natalie is in good hands. I know many of them have a special interest in her, and watch her closely.

We are in holding pattern for now. It could be anytime when we go back to Palo Alto for her next open heart surgery. She is not in any obvious heart failure and growing strong. I'm hopeful that she will continue to grow and get strong before we go back. We are also waiting to hear back about getting Natalie a helmet. It seems intimidating to commit to it, but if our insurance will cover some of it we will likely move forward and get her one. She will have to wear it 23 hours a day for 3 to 4 months. Between wearing her BAHA, eye patch, and helmet she wont have any time without something attached to her.

I wish I could describe how cute she is. Her voice quality is improving so much. She isn't cooing as much as we would like, but each day she is vocalizing more and more. She loves to watch Samuel run around. He is becoming more and more interested in playing with her. He likes to show her all of his cars, trains and planes. He still has moments of jealousy, but it's obvious he adores her to pieces. He constantly says " I love my baby", and "my baby is alright".  She is rolling side to side, and is still working on her head control. She doesn't mind tummy time and reaches out for toys. Feeding is still a slow process, but we are making progress. She can handle a tablespoon per feed. We are hoping to get her to 2 tablespoons twice a day before her next swallow study, which will probably be late next month. I don't want to rush into a swallow study unless I know she is can pass it.

I am constantly reminded of how blessed we are. She is our little miracle baby. I laugh when therapists and doctors are so surprised to see her progressing as much as she is. I just say that is my girl, and you watch! There is nothing this little one can't accomplish!

The power of prayer and faith keeps us going. I don't know what the Lord plans for this little one, but I do know he has his hands are on her. I am excited to see God mightily at work with her, and our family. There are many moments where I question God, and the craziness of our lives, but after each day passes I reflect and have such peace and assurance that God is in control. He knows Natalie better than anyone else and is giving us the wisdom and skills to take of her. What a privilege it is to take care of her, and Samuel.

I know so many of you wonder how we are doing, and managing everything. To be honest we are tired, and overwhelmed, but keep on going knowing that we have so many supportive family and friends helping us. It's truly incredible, and I know we simply could not take care of Natalie without the support from you! Thank you a million times for your thoughts, prayers, encouragement.

Love,

The Pierce Family

Home Sweet Home

We are home, and cherishing every moment. It's truly a miracle that we have more time before her next surgery. It's been an emotional roller coaster, but God knows what is best for our little girl.

During her Catherization we received constant updates. They called saying they were going to try to open up her pulmonary valve by doing a balloon cath. It was unlikely that it was going to work, but it was worth the effort. Hours later Natalie came out of the procedure (already extubated), and the first thing the doctor said was she didn't need surgery. Michael and I just cried, hugged, and smiled. Samuel kept saying my baby is alright! I just love how Natalie continues to defy odds. This is nothing short of a miracle, and the best Christmas gift we could ask for.

I really struggled with this surgery. I didn't think Natalie was ready, or needed another surgery yet. Doctors know best though, so I tried to gather as much strength for her and Samuel. My heart ached and ached. It's never going to be easy taking her back for open heart surgery, but this was not the time. Natalie can grow a little more, and we can plan for our next trip.

The last day in Palo Alto we got a room in Ronald MacDonald House. My heart goes out to the families still there. We've been home for four months. There are several families still there, and will likely be there for a year or more. It's heart breaking knowing there are other kids hurting while Natalie is at home. Please take the time to pray and support these families. They need it more than you can imagine.

I don't about you, but I am so thrilled to be home with the family. We're are blessed with Lauren's company, and so grateful for her help. Samuel adores her, and of course is trying to butter her up.  Christmas is just around the corner, and we plan to make it extra special.

We need continued prayer for health. No flu, colds, etc.

Merry Christmas!

Love,

The Pierce Family

Back to California

Bags are packed! I can't tell you how anxious we are to get to California. I feel like it's been months since we found out about this surgery, yet it's only been a few weeks. Natalie had another echocardiogram last week which confirmed her pulmonary stenosis. Her gradient is actually worse than it was a month ago, so we are ready to get her little heart repaired.

The out pouring of love and support from our community, family and friends has left me speechless. My heart is full of gratitude, and appreciation. It's so reassuring knowing that we aren't going through this alone. Michael, Samuel, Natalie and I could not go through this without your encouragement, prayers, and help.

This week our family had the opportunity to take part in the Sparrow Club assembly for Natalie. The Sparrow Club encourages schools and donors to take part in adopting a medically fragile kid. I had no idea the enthusiasm of 500 elementary kids would move me the way they did. They cheered Natalie's name, sang songs, and pledged to raise $2500 to pay back the local donors. At the end of the assembly a young boy came running up to me and handed me some cash. He took every last dollar he had on him and gave it to Natalie. I don't know about you, but my heart aches with thankfulness.

This last year has changed me and my family. We don't take a moment for granted, as we know so well how precious our lives are. I savor the sweet moments with Natalie. Often it's just watching her play, or kissing her sweet chubby cheeks. I look at her with amazement and awe. I watch her with Samuel and wonder what their future holds. I wonder if she knows just how much she is loved.

Please continue to pray for our precious little girl.

Blessings,

The Pierce Family