Wednesday, March 20, 2013

Unconditional Love

Our baby miracle is 5- 1/2 weeks old. I went to my 6 week check up and got to show off this perfect beautiful baby boy. Before my appointment I went upstairs to my maternal fetal doctors. I didn't have an appointment but both Dr. Nathalapaty and the genetic counselor were there. We discussed Auggie, his miraculous recovery, his hand, his heart...

It is a lot of fun talking with people who have never seen a living breathing hydrops see the awe in their eyes and see them experience for a second what I experience each time I look at him.

Dr. Nathalapaty asked sincerely what I would suggest as far as my experience and how they can improve. I was grateful he asked. I, of course, have thought through this a lot. He asked if they should be less grim. I don't know. I think being realistic is important and I know that Auggie is certainly NOT the norm. However, now that they have seen miraculous recovery, they could give statistics, but remind patients that there is indeed hope.

I thought about research. I think it is hard to advocate for research on hydrops, mainly due to hydrops being a symptom is many different diagnosis. However, I do think more research regarding interventions for hydrops is important.

I told Dr. Nathalapaty that if I could help with one change, it would be for appropriate referrals. I feel that we had to ask for referral, and even then, the referral was to Charlotte, and although Dr. Stephensen was a wonderful doctor, she was not in the position to do anything for our baby either.

As you may recall, the standard of care for a baby with hydrops is termination, or do nothing and wait for baby to die.

I advocated that they refer to facilities in the position to do something about fetal pleural effusions, or hydrops. Referral to fetal interventionalists that actually do shunts and consider them in hydropic babies. Dr. Nathalapaty asked if I knew of more facilities, and I have been compiling a list which I plan to get together for him.

The genetic counselor, Jennifer, asked if I would be open to speaking with other parents, and I of course eagerly said Yes. I may not know everything, but since being part of a great support group, I certainly can help find answers.

Some of the girls in our group are currently writing information regarding carrying a baby despite a fatal diagnosis. It is going to be amazing to see it put together. It is difficult carrying a baby with the knowledge that you will likely not be taking them home. I still get teary each time someone gets a new diagnosis or each time someone mentions the hour or day that their baby lived. The beautiful hour I imagined having with my Auguste. My entire pregnancy, preparing each day for meeting him and saying goodbye to him at the same time. But knowing that no matter what happened, that our love for him would not change, and that any amount of time, from the next kick to the first breath...would be worth having with him. Because in truth, we will all die...and witholding love due to the risk of heartbreak is a ridiculous notion and with only leave you with emptiness. Every moment spent loving is worthwhile and rich. We get no guarantees and just have to make a decision. Unconditional Love.

After my doctors appt., I went to our office located in the hospital, and then the office across the street, where I do most of my work. It was so lovely seeing all my co-workers and letting them finally meet Auguste face to face.

We reminisced a bit about when I took the nurses and medical assistants aside and let them know that I  had decided to carry this baby, but that likely we would not get to keep him, and how I needed their prayers, and I preferred no showers or preparation for bringing him home, but that I wanted them to treat me normal, and be happy for the happy moments with me and understand when I needed to cry. They were all so wonderful. For several weeks, before I took leave, we did just that. I pretty much went into the bathroom to cry between each patient appointment.

Cheryl reminded me of when she and Jennifer and I went into the pharmacy and cried and prayed for Auguste, and also for peace.

We cried again today. Cried as we held him and all of those emotions came flooding back and how we held this perfect little miracle. Markalena, a co-worker from upstairs, prayed with us again today, holding Auggie's little hand, and at the end of her prayer, she prayed for the wonderful man he will one day become.

It is a little stressful and beautiful at the same time to realize that I am raising a man. Another co-worker came by and said "Auggie, you are so know, you might marry my daughter some day?"...

it's true, he might. I reminded her that I have two sons...

Oliver said his prayers tonight. He spent so many months praying only for "Baby Auggie to get better", that he always feels he needs to add something about the baby. Tonight he ended his prayer with "Please let Baby Auggie have a warm heart".  So so sweet. Lots of prayers for longer for him to live, but for him to live a life full of love and integrity.


it all reminded me that I am raising two future husbands and two future wives....all the more reason to let them see us kiss, let them see us pray, let them hear us laugh, let them hear us sing, let them feel our love each moment.

Monday, March 18, 2013

Thought of the Day

‎"Motherhood is about raising and celebrating the child you have, not the child you thought you would have. It's about understanding that he is exactly the person he is supposed to be. And that, if you're lucky, he just might be the teacher who turns you into the person you are supposed to be." ~The Water Giver

Thursday, March 14, 2013

UBUNTU , Rainbow Fish and My Boy

An anthropologist proposed a game to the children of an African tribe. He put a basket of fruit near a tree and told them that whoever came first would win all the fruit. When given the signal to run, the children held hands and ran, sitting down together to enjoy the prize. When asked why they had run together, if only one could get all the fruit, they said, UBUNTU, how could one of us be happy if everyone else is sad? UBUNTU in Xhosa culture means: ”I am because we are"

So, I posted the above post a few days ago...its a beautiful image and a wonderful little story...I thought that for the post I plan to write today, that I would just expound on that since they sort of relate.

Boy has autism. I don't write about it much. Why? Not because I am ashamed. In fact, accepting autism was indeed difficult for me, until I realized that the diagnosis did not change who he was and what he was to me...he was still my Boy, my smart sweet beautiful Boy...instead, the diagnosis actually helped me to understand him more and I am a better mother to him with the knowledge. 

I don't write much about it because I want him to have memories of a happy childhood and I am worried that if he ever read something like I am posting now, he may start thinking his childhood was not as good as it really is. No child could be loved more and I want that to be what he carries with him through life.

Boy is extremely bright, high functioning and in normal classroom setting. His challenges pertain to relating to others. He is extremely affectionate and he loves his friends and he wants to play and have play dates just like all the others. He does tend to be more one sided in his play and he does not always know where play ends and real life begins. When kids hit and rough house, he tried to join, but sometimes gets too rough, or takes it personally when they hit him or say mean things. 
He remembers everything, to the point that we are often shocked by the span of his memory. He doesn't shrug things off the way many kids do, and he can be quite sensitive. In fact, what some may think of with autism as a lack of being in tune with things, he actually has a heightened sense to things. He is selective with those things and his selectiveness often causes him to perseverate on details, and this defintely makes him stand out from the group. 

He often tends to be on the outside looking in. 

This makes me sad. 

His doctor says "Its sad because he is so smart and yet, we have to teach him this part, and it doesn't come naturally and he has to work hard at the things that come naturally to others, just like some kids struggle with reading or math"

He uses echolalia to process information. I love this but it also makes him stand out. He speaks out of turn and gets excited and sometimes repeats things other kids say or do in an excited manner that is not in context. 

He loves to imitate bad behavior. This drives me crazy. If another kid says something off color or is rowdy and causing trouble...Boy LOVES it.

I am extremely sensitive to my Boy. He is my love and when I hear things that are not happy regarding him, I probably am more emotional.
I am also extremely protective of him. 

I am a social person and I want him to have friends and be happy. Mickey is more of an introvert and I know that there are many people who only have one or two friends and they are very happy...and if this makes Boy happy, then I am happy. BUT- if he is seeking interaction and getting turned away, then that makes me sad. 

Mickey feels that he will be fine because he has good looks and is smart and athletic, and that will carry him pretty far...I think he could be right. But smart doesn't constitute happiness and I want him happy.

At my grandfather's funeral I encouraged him to go play with some other, older boys in the family. I watched as they told him he wasn't fast and they didn't want to play with him. I burst into tears, luckily people just thought it was because of the event we had gathered for. 

I know that he has trouble with some of the boys in his class...they are boys and he is easy to get in trouble and he is easy to bully, and he doesn't always "get it" and will do almost anything foolish if he thinks it will include him. These are good boys, sweet boys and often they are extremely sweet to Boy. But other times they aren't. He never seems to play with the same kids and often plays with whoever happens to "like" him that day...sometimes they do like him...When I ask him who he plays with at school, every day it changes...because he doesn't have one steady friend who is always there.

Some days they apparently play a popular playground game called "run away from Oliver". 

I asked him if they actually said 'those words' and apparently, it is the name of a game they play. I asked him how it made him feel and he said "It makes me really angry and I kick the mulch". Mickey told him that when they play that game he needs to NOT CHASE them and then it won't be fun to play...

I don't think he gets it though and will probably continue to chase them and ask them to "please will you play with me". (yes, this is what he tells me about). I feel very blessed to have a boy who opens up and tells us things when we talk with him. I also know that much of what he tells us is his perception, and unfortunately, his disability is based a lot on how he perceives things and perception accounts for much of what we get out of this life.

I feel very sad that he ever has to feel sad on the playground.

I know that going through these things will make him a more empathetic person, as you can only learn empathy by experiencing pain...I also know that we all experience these things and overcoming them make us stronger...

I just wish things could be different. 

I remember being in the fourth grade and there was a paper passed around to sign up to be a member of the "I Hate ___ Club". I remember making a 9 year old decision not to sign my name. I know at that point that I knew it was a cruel thing to do. However, I also remember leaving friends out,and often hurt the friends closest to me. I think it is easiest to hurt those closest to you because you know where their soft spots are.

Unlike Oliver, I always had a few people in my corner...yes, we fought, but we always had each other. I never had to worry whether they'd like me the next day. 

Some of my best friends and I have known each other nearly all our lives...being friends when we were Boy's age. We are close because we overcame. We are friends because we had to learn to forgive and ask forgiveness. There are some things, deep things, that come to surface during our chats, that we have to ask forgiveness for still...some things 20 years old that we recall and have to say "hey, remember junior year when _____, that really hurt me."...

I feel so blessed to have friendships where forgiveness is unlimited and we can be open about our pain and our shortcomings.

I have failed many friendships and I have lost some that have never returned, and I don't believe in the "if it doesn't return it was never meant to be"...I don't believe that. I still grieve lost friendships...because I love people and if any of those people ever read this, I will go on record right now by saying "I am sorry and I miss your friendship".

Today I went on a field trip with Boy's class and we saw Rainbow Fish. It was really cute and had a hymn like song about sharing your gifts, and also had a song about seeing yourself through one another...I felt happy and sad because I want my Boy to have friendships that reflect the best in him.

I may not leave this post up long because of the sensitive things I said about Boy...

But I do ask for prayers for him, that he will find lasting friendship and lasting love, the way I have been so blessed to have...because those relationships are what makes this life so very beautiful.

So, how does this relate to the initial post above...UBUNTU...may we all remember that we will only be truly happy when we create happiness in those around us. Rainbow Fish learned this today and its a lesson we can always be getting better at.

Boy and brother Auggie (who we will start calling blog name 'Oak' very soon)...I love that my kids always have each other. It makes life so special.

Tuesday, March 12, 2013


He is perfect. He is babbling and chirping and growing so big...I feel so blessed. I broke into tears yesterday when I read a post by someone new to the hydrops page..she spoke of feeling him kick and knowing he was dying and how painful that was...her pain took me back to when we were diagnosed...and it cut just as deep as it did that day...I felt them again...

then I looked in my arms and felt so very very blessed that I didn't have to give him up yet...

Loving the miracle I've been entrusted with. Thank you Jesus for your many blessings and for this extremely precious gift.

As for me I will always have hope, I will praise you more and more- Psalm 71:14  (this is the verse that carried me through or pregnancy)

Thursday, March 7, 2013

Three Weeks Old

Auguste turned three weeks old on Tuesday. The weeks seemed to move so slowly leading to his birth and have flown by since then.

The weeks have been full of mixed emotions and concern....Hydrops is a very rare condition, approximately 1/1500 with only 10% being survivors. Survivors are usually diagnosed later in pregnancy and early detection is typically a poorer prognosis...of those survivors, many spend weeks and months in the NICU...

therefore, a baby like Auguste, with early onset hydrops, then spontaneous resolution, is very rare indeed.

I have read about a few, who are now healthy children and it is what I prayed for the entire pregnancy.

I also have met a few on the hydrops support pages, and two of those babies have since died of immune deficiencies. Yes, babies just like my Auguste, sent home, healthy...then dying later of infections, one at 5 months and one at 33 months.

This is heartbreaking and obviously, on my mind...after all he has been through, what if this, what if that?.

I discussed this with our pediatrician today. He basically said that Auguste is not a "normal baby" and as much as we hope he IS a "normal baby", there is no textbook for how to deal with things or what to expect.

He decided to put in a consult for infectious disease. It is likely things will be fine but better to have peace of mind, and let them do a work up and thus be more assured his immune system is functioning as it should. He also feels they may be able to give us more insight on his hand.

This will likely happen in the next few weeks and our cardiology visit is at the end of April, so hopefully by May we may have a clean bill of health.

He does still have a communicating hydrocele...this is given a year to clear up, but does increase risk of hernia and we have to watch that closely. This is a common finding in male babies, but I have found that it seems of the male hydrops survivors I have spoken to (well, their mothers)...they have almost all had it. Interesting. This seems to be the case with many little things, such as his pectus excavatum (thought to possibly be due to bone development while lungs were not inflated) and his nevus mark on his forehead. All newborn variants which seem to effect most of the hydrops is interesting to say the least, but still difficult to establish any normals with these children.

On a very positive note, he was 9 lbs 4 oz today which means he has gained a 1 1/4 lb since our visit two weeks ago...Mama's milk is amazing stuff!

I think what is important to gain from my current worries is that in truth, any of my children can still get sick and I can protect Auguste no more than I can my other is fragile, and these children are just on loan to us for a while. I had a friend describe having a child as being willing to let your heart run around outside your body...and that was the most accurate statement I had ever heard...I have four hearts running around and I can only do so much to protect them...and the rest I have to have faith and trust God to take care of...

He got us this far.....

Sunday, March 3, 2013

A Story to Shout From the Rooftops

It hard to blog lately...

for so many weeks I blogged about pain, about fear, about faith, about hope...and now...well, I still have all of those things, but the feelings are no longer as intense, and it is as if the end of the journey occurred and its a lot less climactic.

I prefer it that way. I prefer the boring life that doesn't have the constant fear and worry that my life was consumed with only a few weeks ago.

A sleeping baby lying across my body is a much better feeling. And I am so grateful...but I am not sure how often I must say it. How often must I shout that I give Him all the glory. If I don't say it, does it mean I don't feel it. No.

Its a weird goes on and I have this amazing blessing, and I am still at the point where I take almost every opportunity to tell Auggie's story...but at the same goes on...and how many times does a person tell it. Once a minute, a day, a week, a year.

If I were being truthful, I would say that I don't know what to do with this amazing story.

His life...does he owe more than the rest of us? That's a lot of pressure to put on a wee boy

I think back and say...if we had only had the 16 week ultrasound and never had the one at 19 weeks...we would have never known about the hydrops...and yet, it is likely it would have still resolved and we would never have even known what a miracle he is.

In truth...I wonder if I would have preferred it that way.

I know that this journey changed me and inspired many...I also learned a lot about myself and my faith and my was a journey worth taking, for sure...but one must admit that sometimes ignorance is bliss...a lot of pain and worry and financial security would have been spared had we never known...

I now just feel like I need to figure out what the reason for it all was?

I hope somehow his story can offer hope to the hopeless...but will his story change their the very least it may encourage people to being willing to face their fears and go on the journey...even when the outcome is unknown.

Was that why? 

Did God challenge my faith? Did He want me to meet new people, reconnect with old ones? Was it to remind us of the power of prayer? Was it to remind us all of the fragility of life? The blessings of a child?
Am I to write a book? Am I to March of Dimes? Advocate for research?

I don't know yet. I know that Auguste's story touched many and that I am not the only person who has been amazed by his life...

Maybe this story is his and not mine at all...

I guess the story continues ...and we all continue with it....

Vegetable Salad...Yummy Yummy

I have two picky eaters....

Buttercup, although she eats sparingly, will eat nearly anything...

However, my oldest two are extremely picky. I don't know what I did to contribute to this but it remains a fact and we deal with it every evening around 6pm.

Boy is the hardest and he seems to only get pickier and pickier as the days go on.

I have tried everything from forcefeeding to threatening etc...

I am no stranger to this, as my dad went through this with me as well...I was very picky, but as an adult I eat and enjoy just about everything.

My kids don't even eat what I consider to be reasonable foods hamburgers, no chili, no pot pie, no soups...they like pasta. They would eat pasta and sandwiches all the time. But pasta does not have the nutritional value for me to feed it to my kids on a daily basis. PB & J...well, that is certainly yummy as well...but I have been feeling like I am between a rock and a hard place.

Today I sat down, exacerbated at the thought of another difficult dinner as well as the idea of making him a separate meal...

I looked at Mickey and I said "how do we make sure he is healthy?"

So...we decided to make a deal with the kids....

IF they don't want to eat the meal we prepare for the family...then they can eat broccoly, carrots, cauliflower. Eat it til they are full. They will get no dessert on thos days, but at least I can know that they are eating something healthy for their bodies.

Boy thought this was a great idea and Bluebird joined him tonight. The both ate two full bowls full of what Boy endearingly called "Vegetable salad".

I suppose there are worse things in the world. do you get your kids to eat? What do other people do in this situation?

Friday, March 1, 2013

Snuggle Bug

Auguste turned two weeks old on Tuesday. Its been pretty incredible. We all adore him.
We feel incredibly blessed by this little guy. Emily and Eliot constantly give him kissed and I admit, so do I. He is just so very kissable. He is extremely cuddly and we all pretty much fight over who gets the next turn holding him. Here is a photo of Bluebird giving him some snuggles.