Tuesday, April 19, 2011

Life Is a Roller Coaster

David is having his second heart catherization today.  I am so hopeful that this will result in a date for his open heart surgery.  If you have the time say a little prayer for a healthy procedure and mommy getting the answers that she wants now would be a great time.

It is the middle of the night and I am getting that feeling that you get before you go on vacation: a little excitment, nervous, anxious, stressed, etc.  I have been through this before so I know he will be fine.  I just want them to say he has responded to the Viagra and his pulmonary hypertension is under control and we are confident that he will be a good candidate for open heart surgery and he is going to be okay.  That is the bottome line, I want to know he is going to be okay.

They did throw another wrench into my plan yesterday.  The hospital that we go to is merging with another well known children's hospital, one that I don't like.  Originally we were told it would happen in September.  Yesterday I got the news that the last day to have surgery at our current hospital is May 16th which gives two weeks recovery before they would need to transfer patients to the other hospital.  So he has to be deemed ready for surgery and have a good possibility of recovery prior to the end of May.  I won't set up the surgery until after big brother's birthday and party so our window of surgery is May 9 to May 16. 

Otherwise we will have to wait until after the move.  Has your work place ever moved or changed upper management?  There is usually some tension associated with that change it is usually uncomfortable and awkward and there is a transition time involved.  Not the ideal time to ask for surgery in my opinion.  Then throw in that it is at the hospital that I don't like and it makes it even more uncomfortable for me.  I am an engineer.......I don't like change.  They are trying to reassure me that it is the same surgeons, doctors, nurses, etc but I know that there will be some effects from the move (I have too much life experience to be convinced otherwise, and I am a realist/pessimist which is not really helping).

So we take one step forward with today's procedure.  And we will have to see where our next steps will lead us.  I must keep my eye on the prize, my son being healthy and strong.

Saturday, April 16, 2011

Happy Birthday Gift to Mommy

In the last two weeks David has been healthy, the first time since Thanksgiving that he has been healthy for so long.  It has helped everyone's sanity, OK my sanity.

Him being healthy makes such a huge difference in these past two weeks he has learned to clap and wave, thanks to Daddy and David's hard work.  And yesterday he got into sit all by himself.  Now he is doing it all the time so I can't really leave him alone for long because he doesn't know how to get back down to the floor except by falling over.

Happy Birthday David, you have come a long way.

Friday, April 15, 2011

David's Arrival

David was due to arrive on May 17, 2010.  We found out that he had down syndrome when I had an amnio 16 weeks into my pregnancy.  Based on my past history of delivering my other son early (my water broke at 36.5 weeks) and the assumption  that babies with down syndrome have a higher chance of an early arrival; we were anticipating a baby sometime before that date.  We could never have anticipated the actual events of that day.  Let's just say it's a good thing that I have never had a birth plan.

Week 35 of my pregnancy, April 16th, I went to the specialist for a non-stress test and ultrasound.  Within about a minute of starting the ultrasound the doctor was called into the room and the discussion went kind of like this. 
Doc: The baby has developed fluid around the heart and the lungs within the last week and he has an enlarged liver, we are going to do some more imaging but this doesn't usually develop in one weeks time.  Have you been sick, has anyone in your family been sick.
Me: I feel great, I worked out this morning.  Am I going to have to deliver the baby soon.
Doc: Yes, very soon.
Me: Are you thinking in a few days or today (I am thinking oh it will be a few days so they can give steroids for the lungs, etc.)
Doc: After more imaging, I am thinking the baby could have developed leukemia in utereo which is very rare, I am calling the hospital and telling them you are on your way.  And I am calling your OB. 
Me: Can I go home first and pack my hospital bag.  And by the way, my OB is out of town.
Doc: Yes, you may pack your bag but then go to the hospital and one of the OB's from your practice will be delivering you today. 
Me: Do you think I need a c-section, can he survive the birth.
Doc: I will recommend a c-section to the doctor but it will be their decision. (And he would not address survival rates).

So by 10 am I am at the hospital and they don't know who or why I am there.  The peri didn't call the hospital, he only called the OB.  The OB's office was scrambling because my doc was on vacation and the on-call OB was in the middle of surgery at the hospital already.  So the L&D nurses hooked me up to the monitors.  They said did you know you were having contractions.  I said no I can't feel anything (maybe this was just because I was reeling from the information I received an hour ago). Well, as they hook up the oxygen mask for me, they say he isn't tolerating the contractions well at all his heart rate is decreasing with each  contraction so put on this mask and lay on your side.  I said I am having a c-section aren't I.  They said that will be up to the doctor but yes you will be.  So I called Steve and said you probably want to come to the hospital as I will probably have the baby as soon as the doctor is available.

The neonatologist came in to discuss the delivery.  They said a doctor and nurse would be in the room for the baby.  They would be bagging him as most likely he would not be breathing and he would be taken straight to the NICU.  My substitute OB was suppose to be to my room soon but was still in surgery.  The time crept by.

The doctor finally comes to introduce himself, Steve gets on his scrubs and then we take another twist.  My lab work shows my platelets are low so they cannot do an epidural I will be having the c-section under general anesthesia and Steve cannot be in the room.  I burst into tears.  Our baby is going to arrive into this world without his mommy and daddy.  I kept thinking what if he takes his only breath and doesn't make it and we aren't even there to hold him.

So now I am having a baby 5 weeks early by c-section under general anesthesia and no one is in the room but a crap load of doctors and nurses.  Then they ask if I am a Jehovah Witness (what the heck)....because I may need a blood transfusion and so may the baby.  So we sign consent for blood transfusion forms.  But wait there's more.  They need to insert my catheter without sedation because when they put you under a general for a c-section they want the baby delivered within 3 minutes so he does not go under the sedation and inserting the catheter would waste time that they could be removing the baby.  So more tears from me.  It was really quite unpleasant, but not the worst thing that could happen.

So I go alone to the operating room with the people in scrubs.  They put me, the prego lady with the big butt (yeah not one of those cutsie prego ladies here) on the narrowest operating table ever.  They then tell me I am going to feel some pressure on my windpipe, did they mention it would feel like someone stepping on my neck with all of their weight?  Luckily it only lasts 10, 9, 8, 7........

So I wake up with my husband standing next to me, and my only question "is the baby okay".  Steve showed me pictures of David.  And then I proceeded to ask to see the pics over and over again as I was groggy and confused.  David arrived at 2:37 pm weighing 7 lb 7 oz and 19.5 inches long (pretty good for a preemie, although we know some of the weight was fluid building up in his body) And so began our medical journey with David.

Friday, April 1, 2011

What's In A Milestone

What is the definition of a milestone.  One of the many that I found on the Internet (my best source of information on every topic) milestone is a significant event or stage in the life, progress, development, or the like of a person, nation, etc. 

Why do I bring this up, well David is turning 1 in a couple of weeks and the first questions most people ask "is he walking".  Then I say no and they ask about pulling up, no; crawling, no; getting into sit by himself, no; teeth, no; self feeding, no (he is 100% fed through his g-tube).  I know people feel bad when this conversation goes down.  They were being curious and making conversation and I was being my normal blunt self.  I don't feel bad about David's developmental milestones, I do feel bad that the real world doesn't know that a baby with down syndrome most likely will not reach milestones at the same time as another child with a typical number of chromosomes.

First let's address the milestones in David's life that I remember:
First time I held him - 13 days old
First time he came home from the hospital - 44 days old
First time he breathed room air (i.e. came off of oxygen) - 5 months old
First time his face was tape free (that is when his feeding tube moved from nose to stomach) - 7.5 months old

If you start to read the list you see that the things that have really mattered for me are about far more than David's development.  We have real medical issues that are far more critical to our lives.  David's health has really rocked my world and changed my perspective, this is a whole different topic that you will see frequently.  David has more health issues than a typical child with down syndrome (and sometimes that is really hard for me, insert pity party here).

If we move on to developmental milestones:
First smile : 2.5 months old
First laugh: 4 months old
Rolled over consistently : 8 months old
Started sitting for a few seconds: 7.5 months
Sitting for more than 10 minutes: 11 months
Says one word (Dada) : 10 months

In the world of Down Syndrome he is doing fine.  Down Syndrome milestones have there own charts (how cool is that).  So if he continues to meet the averages on the down syndrome chart than he should be crawling around 14 months and he should be pulling to stand at 15 months and he might even be walking by 2 years old.  He may not do it at these times, the ranges of development are quite large.  We don't look at the chart to estimate his progress, we just appreciate when he figures something out. 

When David was in the NICU I would ask every day when can I hold him.  Then after that milestone was reached I would ask when will he come home.  What I was told and finally understood that has made this whole milestone thing easy to understand, David will do things on his own time when he is ready.  There isn't really any magic number or date or straight line to follow.  David's body will respond when it is strong enough and when he is ready to figure it out.  We do know that whatever it is be it medical or developmental, David is driven and strong and determined.  David is a real fighter and will always be a miracle in his mommy's eyes.

Side note: when do I find time to blog, on the weekend (includes Friday as I only work Mon to Thurs) while my angel sleeps.  And about that sleeping milestone of sleeping through the night, I think it was about the time he came home from the hospital at 6 weeks old (shameless brag).  But I get up two times every night to feed him (he sleeps through the whole thing, plug him in and let the food flow, love the g-tube).