To whom it may concern:

So I have this problem.  I don't know what to say when people ask if I got my tubes tied.  For one thing, I cannot imagine why my reproductive system is anyone else's business.  And secondly, why would anyone even ask that?  It has to be for two reasons.  A, that I have too many children already and I could not possibly afford more.  Three is considered a  lot I guess, but Melodee just informed me that she would like two more sisters and maybe one more brother.  Or it is B, people cannot imagine how I could chance having another baby that is like Mercy.  I can't think of any other options.  We aren't "too old."   It isn't against the law. 

So if it is A.  Its none of your business!  I think that children are a very special gift from God (that even I don't always appreciate and treasure like I should) and they are not a burden or some kind of problem you have to work through.  They are blessings and on loan to us from their Father who loves them.  I trust that God doesn't give us more than we can handle.  So if the number is what is making you ask me, it is not your problem.  If we have to take out loans to take care of our baby that is what we will do.  Having them is much much more important that the big house, the car and money.  Showing them love and raising them to be productive selfless people will be not only a challenge, but a huge blessing!

And if it is B, then that is also very sad for you.  Because I was in this camp before I had Mercy, I realize that it is ignorance that makes people feel this way.  I would think, why would you keep having kids when you had one with down syndrome, you must be crazy. But now that we have our "special" baby, there is no way that would ever stop us from having another baby just because they might turn out like her!  She amazes us everyday.  To say that we wouldnt want another baby like her is to say that there is something wrong with her.  As our child, there is nothing, absolutely nothing wrong with her.  She is my baby.  Sure, there are some phyiscal and probably some mental things we have to work on and work through, but she is a child just like you and me.  And though it is hard, and I wouldnt want to have the stress of this on anyone, I trust that God would provide us with the child He picked for us if we decided to get pregnant again.  Besides, we already have the experience!  I feel like we could take on anything!!! 

Below is some pictures I took of her holding herself up.  She is 2 and a half months old here.  We thought she was going to be just a shell of a baby, if she even lived.  The doctors said she would not be able to do anything.  And she is trying to scoot herself all over the place.  Such a small thing, I know.  But we were really happy to see her do this!  And although it is going to take more time we truly believe she will be able to do all of the things they said she could not.  She is still eating very well.  Especially for her Dad.  She is way more picky when I give her the bottle.  She even almost latched on to my breast for some recreational sucking, because giving her breastmilk from there and not the bottle would make everyone much more happy.  It seems like God is giving us good news every time we take a test or meet with a doctor.  He is the only one with all of the final answers for who she is going to be.  We are going to let Him work it out and just love on our little family.

The baby Doc

When we couldn't find a pediatrician for Mercy I was a little worried.  As you would expect, there were not a lot of doctors who were willing to try to take her on as a patient.  Which was disappointing at first because we thought they really only needed to do physicals and well baby stuff like shots, ect. because she see's so many other specialists.  However, now that we have a great doctor, I see why no one else wanted to do it. 

I loved our doctor from the first time we went to see him.  The day after we got home from the NICU we had an appointment.  We got to go back right away to keep her from the icky other kiddos.  It wasnt a long wait and the nurse's were very sweet and amazed at how tiny she was.  The doctor came in to talk to us and told about the clinic and his background.  He worked in the NICU at a San Diego hospital and we could tell that he was really about patient care.  He and his wife found this place because they were tired of all of the politics that went on at the bigger hospitals.  He told us he had looked into all the info he could find about this syndrome.  And that we were going to expect the best and be prepared for the worst. 

He told us we were going to treat Mercy just like any other little baby until she gave us a reason not to.  He said we could talk about options for what to do if she has a seizure, ect.  But that we not no reason to assume that her life was going to be awful and were going to treat her just like our other kids.  I didnt realize how worried I was about that until I heard him say that.  I thought the doctors would either, not care to look up anything about her, or assume she was just "damaged goods"  So it was such a great day! 

Not only that but he knew most of the other doctors we had to follow up with and suggested other, closer options.  It was very nice because the Children's hospital is an hour away and in our big car, at least 25 dollars in gas.  His staff has been amazing at getting us appointments (and cancelling some we did not need.)  He introduced us to the other doctors in the practice in case we needed help on days he was not there.  All in all it was a great experience and if he had his own private practice, I would take my other children to him too.  He helped us realize that we dont need to go to every referral that we get or do every test.  Some stuff can wait and some can't.

He had faith in her and her kidney's ability.  When we left the hospital they had put her on a special formula, but when we explained the situation, he thought it had more to do with the additive they added to my breastmilk than her kidneys failing.  To give high doses of the electrolytes to a kid with itty bitty kidneys was sure to make her numbers go up.  Especially since, the actual kidney tests werent too elevated, just the calcium and potassium.  He made sure with some follow up tests and we were back on track for giving her breastmilk, something that I really wanted to do.

He said that we would be able to remove the NG tube when we were confident that she was ready to have it out!  The Home supply company reprimanded for not getting more for her.  They said that I should have a doctor check her out before I did anything.  It was nice that someone had some confidence in her and us as her parents.  :)  All in all we are so pleased with the doctor that we have found, and we wish that ALL doctors had his sense of patient care (even those who are administrators!)  Of course we needed a special doc for a very special baby!

Those doctors!

We were only in the NICU for about three weeks.  It felt like forever, as we had to stay overnight because it was an hour's drive to the hospital.  We got to where we were feeding her every 3 hours (the doctors were so hesitant in upping her feeding, although she did really well)  And although she still had the NG tube, we were going to go home very soon.  We took the CPR class, the discharge class (which was like taking a temp and bathing your baby....come on, really?)  and we bought the car seat and were ready to go.  We were all packed up and the nurse came in to give me all of my left over breast milk. 

But then, as we were celebrating how lucky we were that she was eating and going home healthy with no scares, the doctor came in and said that we couldn't go home because she needed more tests.  She had some high numbers come back from some blood work and the kidney specialist wanted to check her out some more.  So we thought, ok a few extra hours and then we can go home.  However, this was not the case. 

The doctor came in and told us that her numbers were reading high levels of potassium and calcium.  So they did a test to see if she had reflux in her kidneys, which she did.  The doctor said that her kidneys were failing and the we had to think about maybe dialysis or a kidney transplant.  This was a huge shock to us.  We went from being happy to go home to our daughter is dying.  We could no longer give her my breast milk, but a special, very expensive formula for babies with kidney failure.  It was an awful day for me.  I felt like the one thing I could do, give her breastmilk, was killing her.  I couldn't even breastfeed to comfort her or walk around and hold her.  We had to sleep another night in the rooms that they had given us.  The nurse that night was pretty mad because they waiting until we were about to be discharged to do anything about the numbers that were sitting there for a week.  What a way to take a great day and smash it all to pieces!

We went home the next day, but we were feeling pretty low.  The good news was that we got to meet our pediatrician that day.  He was pretty awesome.  When he looked at the numbers, he was almost sure that her numbers were high because of the additive they were adding into the milk in the hospital.  He put her back on breast milk, much to my liking and ordered tests.  The next few weeks we had test that came back more and more regular.  However when we went to the kidney doctor again she freaked out on us.  It wasnt until she saw the tests herself that she agreed to keep her on the breastmilk, as if she was the final choice on that!

Another of the things we were shocked in a bad way about was her heart.  She was born with the bypass coming out of her heart in the wrong place.  The fetal echocardiogram saw this, along with leaky valves and the usual openings in her heart.   The doctors, both the cardiologist and the paranatal doctors said this was totally ok and did not mess with the function of her heart.  When we saw the cardiologist, she said she wasnt worried about the valves or the openings, these would resolve for themselves, but the bypass came out of her left cusp instead of the right and was in the heart muscle and between the valves.  So in the event of very elevated prolonged heart rate, the valves would be open and essentially cut off supply from the bypass and cause an infarction. 

Or in other words, a heart attack.  In a normal baby this would be silly to even think about because the most they do is be pissed off because they are hungry.  However with this syndrome, seizures are a big possibility and that would do enough to give my little baby a heart attack.  This was also something that felt like a sucker punch.  We cannot do further testing because of her small, low functioning kidneys.  The doc said this problem is 50/50 among doctors at doing a surgery because of the dangers of going into the heart, they don't necessarily outweigh the threat of a heart attack.  So we wait for something to develop in that area.  Obviously the bypass is not "ok" and we have to worry about that.  Whenever we take her to the hospital for something big, we will have to have them test for a heart attack.  It just doesnt seem fair!

I am sure this is just the beginning of my woe's with doctors and getting it wrong.  We are trying to keep in mind all of the great things that she can do.  She can eat all on her own, no tube.  She can pick up her little head to look around.  She can hear really loud noises, but we are not really sure how good she hears.  She thinks it is funny to look at the fan.  She is almost closing her eye all the way now!  And she is still here giving us a blessed life.  It just would be more convenient if we knew everything right now and there were not any more surprises.  I used to love them, but now, not so much!

The things we say

I have been thinking today about all of the things we say to people. I am trying to figure out how to train myself to only speak words that matter and are true.  Sometimes I feel myself talking and talking and I am not really saying anything of substance.  What a waste of every ones time.

 For instance, "How are you?"  Most of the time it is in a greeting and we don't really want to know how someone is doing.  We just say it out of habit.  We just want them to say "good" or "fine" and then move on to the next part of the conversation.  I also think about when we answer.  Most of the time I am NOT good or fine, but I say I am anyway.  That has got to be lying right?  What kind of example is that?  Mom is freaking out because the cookies are burning and the baby is screaming, but when she answers the phone she says everything is fine?  I like Dave Ramsey's saying when he is asked how he is: "Better than I deserve!"  Although to be honest, I  just always say tired when people ask now.  Because that is what I feel the most!

And what about when we are talking to someone who is going though something painful.  "Let us/me know if I/we can do anything"  And I say it too!  It is really a cop out.  Because most of the time you would KNOW what to do if you really cared to think about it.  When my friend is going through a time where both of her babies are sick and she can't stop throwing up herself, telling her to ask me to help her is crazy.  Why wouldn't I just stop by the store, get her some clear soda and soup and send up some prayers as I drop them off at her door?  Most people are not going to ask you for the things that they really need.  Which sometimes is just a card, or a visit or a hug.  I am not saying it isn't nice to say it, but it doesn't help anyone out.  "I love you and I am here for you."  That is better.  And then follow it up with an action that is not asked for.  I am going to try to change that when I feel like saying "let me know..." 

I am trying to teach my kids to say "I forgive you" when they tell each other sorry.  Because the first thing that I say is "It's OK."  And really, most of the time, it is not OK.  If someone punches me in the face and then apologizes to me it is really NOT OK.  But of course I can forgive them. 

The other big thing I have been thinking about is when we see a new baby.  It seems to be that we always want to assure the mother that the baby they have is just beautiful.  I KNOW that my baby is beautiful.  She may look funny to you because of her birth defects, but she is perfect to me.  I don't need someone to tell me that she is just beautiful.  I am so guilty of this too.  I am curious to know if this is an American problem.  I want to change what I say to: "What a perfect blessing from God!"  Because the quality of our children does not come from the way that they look!

The last thing I am thinking of tonight...(maybe I shouldn't save blogging for late night as I wait for Mark to get home)...is when we tell people we will pray for them.  That is something that I have done.  Someone drops some big news and I say wow, I will be sure to pray for you.  Of course there is nothing wrong with saying it, but most of the time we just say it and then forget.  At least that is my problem.  So now, I am going to try to pray right then and there for that person whenever I feel like saying 'I will pray for you"

I am going to stop typing now, before I say things that are just fluff.  And I dont want anyone to think I am judging anyone else, this is stuff in my head applying to me.  But I want to make a commitment to being sure that the words I say have meaning and are true!  At least it is something to think about.  Whether or not I can train my mind and mouth is yet to be seen.

I walk the line.

I am having a hard time walking the line between being hopeful and facing reality.  I am not exactly an optimistic person to begin with.  If we start something all of the potentially awful things that could happen are what come to me first.  For example: Mark says, lets go camping.  I think, what if there is a river or a bear, and we lose Malachi for one second, he's bear meat or drowned.  What if the they are too cold.  I couldn't bear to have someone wet the sleeping bag.  See what I mean?  That is what comes to me first.  As an after thought I will think of some good fun things.  Pictures will be nice and it always smells pretty good up there.  We would have fun. I am working on this.

However, with Mercy, it is hard for me.  We obviously have many bad things already staring us in the face.  Her kidneys don't work very well.  Her heart has a bypass that is intravalvular and in an event of elevated heart rate could cause a heart attack.  We can't do further testing because of the kidneys.  We cant test her eye for that reason.  We are still working on fixing her hip dysplatia.  Her foot is still in it's cast. We are trying to fatten her up (which is reasonably working, she is just over 7 pounds) to get her in for her cleft surgery.  These are not the things that worry me though.  I think I can handle her body not working.  I worry about what her mind will let her do. 

This is where my dilemma starts.  There is no clear line of where I should hope and where I should accept.  I know that we will know in good time what she can and can't do, but I want to dream big dreams for her.  I want to believe that she will walk and talk.  I want to believe that she will write her name.  But I don't want to be devastated if that does not happen.  That looks so selfish when it is on the page like that.  But it is a reality I face everyday. 

Do I trust God?  Yes.  But I still worry.  I still can't bear to think about my baby not "being there"  Do I regret not listening to the doctors and terminating the pregnancy?  Never, not for a second.  I know she can feel.  She can hear me.  I make her cry if I am there and not holding her.  She loves to have her little fanny in the air when I take off her diaper and it is like she almost smiles.  Can I expect her to be "normal?"  No.  That I have accepted.  She won't be like her brother or sister.  And that is great.  Who wants to be just like someone else anyway. 

But I want her to be here.  I want her to be able to talk to me.  I want her to be able to walk and play.  I want to know she can enjoy things.  When the diagnosis is "moderate to severe/profound" retardation of course I want to be on that moderate side.  But honestly, she is missing over 300 genes.  There are others with this with a lot less deletion that cannot even eat.  My heart is heavy.  I pray and hope and dream for "moderate" retardation.  But in my heart I am preparing for "profound"  And I cannot reconcile the two.  As she picks up her head on my chest I wonder how much of that is just muscles moving and how much is her thinking about doing it.  I feel like I fail her when I don't believe that she will walk or talk.  But I can't lie and say I don't think it. 

I feel like I am torn in two.  Hope and Despair.  Of course I want to choose hope for her and I am working on it.  It just seems to be that despair is much easier.  It is easier to expect bad things.  Trust and Hope are much harder.  Everyday I am walking down this thin thin line between promise of hope and the threat of failure.  The dance between the two sides is exhausting.  Sometimes I do a crab walk backward with half of me on each side.   My goal is to just jump to one side.  Hopefully the hope side. 

But for now I walk between the two, waiting and watching.  Everyday is a gift that I am trying to enjoy.  I am trying to live only for that day.  To enjoy what each of my beautiful children have to offer.  To enjoy the great responsibility of raising them to be selfless and loving people.  And to accept the Mercy that God gives me new every morning.

In the NICU

I almost got out of the hospital the day after my surgery but I fainted in the bathroom.  I thought that was a pretty good sign to stick it out another day.  We were finally out of there 2 days after she was born and I headed home to shower and change and then we were going to make the hour drive to see Mercy.  I was so happy because I stood in the shower all by myself for the entire time.  It is funny how much we take for granted.  I even washed my hair, which took a little squatting action since the shower head is at about my shoulders.  Once I was dressed, I loaded up all of the stuff (pump kit, antibiotics, water) and we were out the door.  I felt really good on the way over physically , we did stop to get the wheelchair from our church since I could only walk a little while before it felt like my guts were going to fall out. 

I still can't really describe how it felt on the way to see my baby.  I was worried that I wouldn't feel the way I felt about her like I did Mel and Malachi.  I was worried I wouldn't want to see her or I would think that she looked funny or bad.  I was also afraid of how the tubes and monitors would look and if I would be too stressed out.  I was worried I wouldn't know her.  The hour drive went by pretty quick.

If you have never been in a NICU it's interesting.  There are security desks, a little intercom that you have to talk through and give your own personal security code and loads of hallways.  Mark pushed me all around in that wheelchair.  We came up to her room.  The noises are crazy.  Buzzes, alarms, ringing.  It was like a little symphony of machines.  There were tiny tiny babies in the isolettes.  I remember a nurse saying "these aren't eggs, they ARE NOT incubator's."  And when I got out of the wheel chair and scrubbed up, 30 seconds continuously and all the way up to the elbows, I hobbled over to where she was on a warming table.  And I just felt relief.

She was beautiful.  I felt just like I did with the other babies; proud, excited, worried.  Just the same.  She held onto my finger and I know she looked over at me.  We couldn't hold her because she had the umbilical cord catheter.  We had to wait for the PICC line.  She was doing so well.  No breathing tube.  So we just got to hang out with her for a while. 

After that we commuted a few days and then we got my husbands parent's trailer so we stayed up there with her.  We got to change her diaper and check her temp.  Eventually we got to try a bottle with her and dress her.  Days kind of blurred together.  It was frustrating to not be able to hold her or nurse her.  It was weird having to ask permission from some nurse to do things you would normally just do at home.  She took the bottle pretty well and it was only a little while before they let us give it to her every feeding.  She moved out of the ICU a few days after being there and into a family care unit.  This meant she was doing so well and we would be coming home soon!

Delivery

On the morning that our baby was born, we got up early at ate breakfast together.  Well, at least everyone else did, I was fasting for surgery.  Melodee went to school that day because her class got out at noon and my mom was bringing her to the hospital so she could see Mercy if the worst came.  We took pictures with the kids in their "big brother" "big sister" shirts.  They kissed Mercy goodbye and said they would see her soon. 

The drive to the hospital was short, but it felt like it was all day.  We didn't say much, just held hands as we drove, promising to each other we could get through whatever the day brought us.  Of course, there was no parking, so we had to park on the very top floor of the parking structure across the street.  I was so nervous all morning.  I think I had to use the restroom at least 10 times before I was loaded up on the gurney. 

Check in was normal as always.  Third time is the charm right?  I always hate the IV part.  But she got it the first try and I was all hooked up to the monitor and we just waited for the time to pass until we went to the operating room.  Since we were a special case, our parents and our daughter would be allowed in the waiting room outside the operating room. 

We met the nurse who would be in the operating room with us.  And the neonatal doctor and nurse who would be there as well.  When I explained what was "wrong" with Mercy he was impressed.  He said most of the nursing staff doesn't know about what you just explained to me.  Believe me, I would much rather not have to know this stuff, I thought to myself.  That conversation went well.  Until he got to the hard question.  "Are we doing everything we can to save this baby?"  Meaning, if she is dying do we let her die?  What kind of question is that.  He too, thought that we werent going to be bringing home a baby. 

My mom came in before surgery and walked with me to the operating room.  She said a prayer over us before I headed in to get situated.  The room had quite a few people in it.  The anaesthesiologist, my nurse, the surgical nurse, the neonatal doctor, the neonatal nurse, a respiratory therapist and of course me.  The main man missing, the doctor!  We obviously couldn't start with out him, so we waited.  It was over a half of an hour that I sat on the table, waiting for her to stab me in the back (OK it's really not THAT bad)  When the doctor finally showed up and we got started I felt relieved.  Although I did tell him we almost broke out the scrabble game because he was taking so long. 

After they gave me my first cut my husband came in.  He took pictures of me.  He held my hand and we waited together.  It was my secret hope that she could come out crying.  Crying was breathing.  So eight minutes later, when I heard a tiny little cry, I was so happy.  Relieved.  Amazed.  She was crying pretty good, even if it was very very quiet.  They took her over to the table where they assessed her.  And she got an APGAR test of 9.  That was higher than my other two.  They wrapped her and brought her over to dad to hold.  Of course I was not able to hold her but I could see her little face.  And I know she saw me too.  I couldn't believe she was out and breathing and her heart was working.  It was unreal to me.

As I got put back together my husband followed the whole crew into the other room.  They checked her out.  She needed no oxygen and was on room air.  She was four pounds thirteen ounces and 17 and a half inches long.  The cleft was only her lip and a little of the ridge line of her gum and not her palette.  Although she still was going to be transferred, she was doing everything on her own. 

In the recovery room I waited.  My husband came back and told me all of the answered prayers about our baby.  She needed to be transferred to the NICU so that they could run tests, but things looked really good!
Our daughter was waiting for us as we got back to my room.  We waited for hours for the transport team to come and when they finally showed up, we got to see her before she left.  Melodee got to touch her hand, and even though she was intimidated by the isolette she was in, she was more afraid for me.  Both of my kids wanted me to come home.  And I wanted everyone to be home.