Wednesday, October 10, 2012

The Happy Dance!

I don't think I ever imagined myself doing a happy dance in a doctors office because my child gained two and a quarter ounces.  However, this morning I did.  I wanted to scream.  I scooped Lydia up and just hugged her.  I was SO proud of her.  These are the moments that I took for granted before.  These are the moments that I let pass by me and never even knew how important they would become. 

Taking time to slow down and enjoy every little step has been one of the biggest lessons that I have learned so far.  Watching and learning what goes into raising your hand.  Understanding how important the basics are.  I really probably could have cared less with my other children.  If I was to have another, I think it would be a different story, I could embrace every little thing.  I think I do that with my friends children who are younger...just sitting in awe about them doing a simple task such as sucking and how much Lydia had to put in to doing that.  I am thankful for that blessing, I am thankful that God has showed me how important this is.

When I hear the phrase just slowing down, I know that it means so many different things to everyone.  I thought about what it meant for me.  Today it was a weight gain.  And it is funny to me...when she lost that much weight before, I would say oh just a wet diaper.  But today I am screaming from the mountain tops.  It means that we are doing something right to get her weight to go in the right direction.  She has been sick since at least Friday and has been throwing up with loose stools.  She has only eaten about half of her calories she normally would.  And to be gaining weight during!  I am blown away.  To celebrate each and every step, that's what it means to me to slow down.

Our GI doctor also called Eric today.  We finally found out that our appointment for tomorrow was made because Lydia is doing far better than they expected.  Our GI doctor is the one who said she would never come off the tube.  He never expected her to be on full feeds at this point.  So he wants to check her out to make sure that she is where they would expect her since she is on full oral feeds.  Sigh....would have been nice to have that information about four or five weeks ago. 

Eric said that he also started getting into the tube removal.  He said that he did not want to because what if this and what if that.  However, Eric told him that we would discuss that tomorrow.  I think that he needs to see her, he needs to start looking at her as Lydia and not just a case.  He needs to close his text books up and really look at her skills and what she is doing.  Obviously she is doing well, they never expected her to be where she is today.  I have to add a side note, as a mom I just want to say I TOLD YOU SO.  I want to just shake my fist and tell him that if he only gave her a chance he would realize too how capable she is.  I know that she may not excel at everything, but she needs to be given a chance before a label is slapped on her or some kind of prejudgement is made.  I can't help but secretly just be so proud.  It is probably so wrong....but YEAH LYDIA.  Mommy knew you could and I am sure you will continue to do that for the rest of your life.  End side note!  So I think before we have that discussion, we want to hear him out and have him look at her. 

I have been praying a lot for what will occur tomorrow.  I feel like we have a good "case" made for taking the tube out.  I also feel very strongly that I have been given this mommy feeling of making sure to stand my ground and get that thing out for a reason.  If he wants to keep it in because of what ifs....I have a bunch back for her.  Since he never thought she would be here, I think it is important to not underestimate her.  But I cannot live my life on what ifs.  I need to follow what I feel is logical information.  We could leave the tube in for the rest of her life because of what ifs.  From my understanding, there is no set way to get a tube out, it is all based on a feeling, calculated risks from a text book and basically your doctor.  I have heard all different kind of ranges.  I guess this bothers me.  But, I am praying that God has it covered, God gave us some great information some wonderful people to talk to, and God has it covered.  I am very confident in that.  God has given me great peace over this.  I just love that. 

If you would not mind praying for us around 2 until like 330, that would be wonderful.  That is about how long we are anticipating the appointment to take.  I just pray for open conversation, for open ears on both parties, for some kind of understanding and logic about what is happening.  I also pray that we are able to get some expectations set for future appointments or we are able to get a new doctor.  We have had many issues to this point, and I need the very best on Lydia's team.  I need to make sure that they have what is best for HER (not a diagnosis, not a case, not a text book, but for LYDIA), and most days I am not confident in this team.  I would also pray for me, I have that lack of trust, so if he does come back and say the tube needs to be kept, I just pray that I can hear what he is saying.  I don't believe that he has had Lydia's best interest in mind with many decisions he has made, I feel he takes the road that is best for him, that will cover him in case anything happens.  That is a hard balance for me to understand.

The big deal with getting the tube out or not is because it is causing significant developmental delays in Lydia.  She already has a lot to overcome, so if we are not using the tube, I would rather take a risk of another surgery than see her struggle.  She is not able to easily meet her next goals because of the tube.  In the past week or so we have seen her significantly struggle with her stomach as well.  It is clumsy and gets in the way and I am sure that it is not comfortable.  Also, the tube site has been irritated.  We have not had problems with that for a long time.  It seems like no matter what I do to get rid of it, it won't stay away.  This would be potential for possible infection and it is a hole in her body that infection can enter.  Because we are still working on her building up her immune system, an infection can be really serious to her.  I just want folks to understand the largeness of this decision.  It is not just about getting rid of her tubes.  There is so much that goes into this.  I also believe that if a foreign object is taken out of her body, she will be much better off.  But if there are feeding issues down the road, the risk of another surgery is there.  And because it goes into the small intestines, it is a bit riskier.  There would be scare tissue and stuff and getting it placed correctly.  However, something that would be manageable.  It is a large decision and deciding what is best for her is really hard to know.  I pray that God just continues to guide us and gives us the wisdom.  Obviously just relying on a GI opinion is hard too, because their main focus is growth and nutrition, not all of the other stuff like developmental. 

For now, however, I am just going to lavish in her HUGE success today.  I will just give glory to God for answered prayers and continued faithfulness to us.  God is so good.  Lydia is our miracle...and she just keeps proving everyone wrong!

On to making cookies for the Ronald McDonald's House.  I can't wait to make our house smell like pumpkin spice!!!

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