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Friday, January 23, 2009

I guess it's about time for an update!

Madi seems to be doing well.  She is a very happy little girl and is smiling all the time.  She's starting to learn to coo and makes the cutest little noises.  We took her in the the neurosurgeon for a check-up yesterday and he said everything looks great.  I am always afraid to say anything because I'm afraid I will jinx it.  It's hard because she could have an infection brewing and we may not know for a while.  I watch her very carefully (probably to carefully) but have not seen any indication of infection as of yet.  We go to the pediatrician today and will be able to check her weight and height to see how she is growing.  We met with DDD the other day and are getting her started with an early interventionist and a physical therapist.  We are also having her checked out by a speech therapist.  When we took her to the neurologist she also thought we could benefit from an occupational therapist and is getting us a referral for that.  I think it's awesome that Madi is going to be able to get so much help so quickly!  We are praying that we find great Christian people to work with.  

Madi was getting terrible diaper rashes that I was having a hard time getting rid of.  I put her back in disposable diapers while I tried to clear it and realized it was the diaper cream I was putting on her.  I made my own concoction with vitamin E and some other cream and it cleared right up!  She gets to go back in her cloth diapers now, which look so adorable on her.  None of her pants fit her though because her little butt is so fluffy!

Conner is a great big brother and is making sure his little sister is well taken care of.  He helps wash her in the bath, hugs her, and gives her lots of kisses!  

Sunday, January 11, 2009

We love her, but she's not an easy baby!

Conner was not the easiest baby.  His reflux made him miserable until we got it under control.  I wore him in a sling most of the day, kept him upright, co-slept with him, and just did anything I could to make him comfortable.  No matter what we did, he was still in pain for quite a while.  We took him to a Gonstead Chiropractor who adjusted his little back, which helped immensely.  We also took him to a naturopathic doctor who desensitized him to foods he was allergic to and getting through my breastmilk.  Between the two, his reflux cleared up and he was a happy little guy but it took a while.  David and I were convinced that our next baby would be an easy baby.  It seems, though, that poor Madi also has reflux like her brother.  She doesn't nap well during the day, has "wet burps", is constantly choking on her spit-up, and is just having a hard time.  Even in my arms, on my chest, or in a carrier upright, she still does not nap well.  She wants to be asleep and is unhappy when she wakes.  I've tried Mylicon and have Gripe Water on the way.   I want her to be comfortable and it is really hard knowing that no matter what I do, she is still in pain.  We took her to the chiropractor once already and have plans to go again.  She's also seen the naturopathic doctor for NEAT (natural elimination of allergy treatment) testing twice.  I am praying that these two things will help her, just like they did Conner.  Madi's little life is hard enough without these added problems.  I am praying that God will take away her discomfort so she can get the rest she needs.  

Sunday, January 4, 2009

We are going home!

We just talked to Dr. Shaffron and he is discharging us!  Yeah!  I cannot wait to get home to see Conner, shower, and eat some real food!  Being home again is always a bit tough.  Conner is not used to sharing time with Madi again, Madi is not used to Conner's noises, and everyone's routine is thrown out of whack.  It is very very worth it, though!  I am so thankful that it wasn't an infection and that our time here was brief.  God really took care of my little Madi!  She is feeling much better and did great with recovery.  Yeah!!

And it lit up my day

Today Madilynn smiled her first real smile...

and it lit up my day!

Being stuck in a hospital room for an extended period of time is hard.  Anyone who has been there knows that no matter what color they paint the walls, no matter how cheery the nurses are, and even having a window in the room cannot really make the hospital look any more cheery.  When Madi smiled, though, the whole room glowed!  Of course the second I grabbed the camera she stopped.  I am praying we get to go home today.  I'm getting quite homesick and because of RSV season I haven't seen Conner since Thursday, which is really hard.  I miss my favorite little man!  No matter what happens, though, I know God has a plan.  I'll have the memory of my little Madi's first smile to brighten my day regardless.  

Saturday, January 3, 2009

But tomorrow is looking better :(

Madi's fontinel is fuller than this morning so they want to keep us another day to watch it.  I am  praying that her shunt is working correctly se we can go home!!

Today is looking good!

(I have Madi in a big bed so we can snuggle and co-sleep :))

Our cultures are still negative, the cat-scan shows the shunt is in place correctly, and her fontinel is soft, so...

As long as Dr. Shaffron things everything looks good when he gets here to check her out, we get to go home today!!

We had a few clowns from the fiesta bowl visit us today.  The woman clown kind of lingered around a bit like she wanted to tell me something but was hesitant.  She finally got the courage to talk to me and told me not to worry, 2009 would be a great year for us.  I am praying that she is right!  Madi and I have spent over 50% of her life time in the hospital so far and I am ready to enjoy my beautiful baby in the comfort of my own home.  I am so thankful that we do not have any signs of infection.  God is good, all the time!

Friday, January 2, 2009

She's off to surgery

So far the culture has not grown, so the chances of infection are slim.  The plan right now is to go in and try to clear this shunt.  They are not sure where it is clogged or malfunctioning so they will go back in and take each part apart to diagnose and correct the problem.  The entire procedure takes about 1-2 hours.  She has been NPO (nothing by mouth) since 4 am, so my poor baby is starving!  The fluid in her brain is also quite built up, so I'm sure she has a headache.  They will let her eat again after the procedure and the fluid will be able to drain correctly, so I am sure she will be a much happier little gal!  If the cultures continue to stay negative and the shunt clears correctly, we will be able to go home tomorrow, which would be awesome!  We are praying that the procedure goes smoothly and she comes through it ok, that no new infection is introduced during the procedure, and that the new parts function correctly so that we do not need any more shunt revisions for a very, very long time, if at all.  Dr. Moss, Madi's neurosurgeon, is on vacation, so Dr. Shaffron, his associate, will be doing the surgery.  He is also very well known so I know she is in good hands.  This will be her 5th brain surgery in her 7 weeks of life.  She had the initial shunt placement, two external shunts, her new internal shunt, and then this revision.  I'd say she deserves a break from all these surgeries.  She is one tough little girl!

(This is a picture of Madi sleeping on a pillow in my lap while she waits for surgery) 

Thursday, January 1, 2009

Well, here we are again

Just as I feared, we are back in the hospital. At some point, Madi's shunt had stopped functioning correctly.  It started about 4 or 5 days ago.  Madi wanted to eat constantly and would only take a small 45 minute nap before wanting to eat again.  Considering that she is exclusively breastfed, let's just say I was hurting a bit!  I took her in to the pediatrician who said it was most likely a growth spurt and not to worry.  I also called the neurosurgeon who said it was normal for babies to act like that after surgery because they are trying to heal, which takes a lot of calories.  She continued to want to eat constantly, but her fontinel (soft spot) felt great, she had no fever, and she was reletively happy so I continued to monitor her but thought everything was ok.  Last night I started noticing her fontinel felt firmer.  She slept well and still had a great appetite but throughout the course of the night it started feeling more and more full.  This morning I knew that something was off.  I tried to call her neurosurgeon but the office was closed for the holiday.  After that I called her pediatrician and left a message for the nurse on call.  The nurse talked to me, the doctor on call, and then instructed me to take Madi in to the Children's Hospital.  As soon as we got here we were brought back to a room in the ER.  They ordered a cat-scan and some x-rays but couldn't find anything wrong.  Next they decided to tap her shunt to see if she has an infection.  The initial gram stain came back negative but we have to wait 24 hours to make sure that nothing grows in the culture.  If it comes back that she has an infection they will take out her internal shunt, put in an external shunt, start antibiotics, and we will be here for another 2- 2 1/2 weeks.  If there is no infection then they will go in and see what is clogging up the shunt.  That would mean we are here for about two or three days.  Either way, Madi will need yet another surgery and goes NPO (nothing by mouth) at 4 am.  I am praying that her shunt is not infected again.  As of right now, Madi and I have spent 50% of her life in the hospital and it's just not much fun.  I know that God has a plan and there is a reason why we are here, but today is just a depressing day.  We should know more tomorrow and I will keep everyone updated.  We would greatly appreciate your prayers!

Living in a constant state of worry

One of the hardest things about having a child with special needs is living in a constant state of worry.  There are so many "extra" things to watch out for and be concerned about.  I am constantly checking things out and any time she seems just a bit off I worry, questioning what might be.  I know the best approach is to take one day at a time and not think about the future, but it is very hard not to wonder and worry about what might be.  

Right now her fontinel feels full and firm.  Of course it's a holiday so I am unable to get ahold of the pediatrician or neurosurgeon.  We are waiting for a nurse from the pediatrician's office to call us back, but I feel like we need to just go in to the office.  It is so hard to think that we may be stuck in the hospital again, but I am not willing to wait and take a chance.  I thought we would have a day off, but today will be another day of worry.  I am praying that my little Madi is alright and I am just being overprotective, but I just have a feeling in my gut that something is wrong.  Please pray for my little Madi!

(This is a picture of Madi and my dad (her papa) when we were discharged from the hospital last week)