Friday, January 31, 2014

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.

The Pierce Family 

Wednesday, January 22, 2014

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.


The Pierce Family