Monday, February 15, 2010

What Else Could Go Wrong?

Since my eighth month of pregnancy all I’ve had were a string of disaapointments.

First they tell me something was wrong with my baby’s heart…. And I freaked out.
Only to find out that there was something bigger that I needed to worry about…

When they checked on my baby’s heart, the doctor’s said that they found cysts in her head… only to find out that there was something much worse than that…

When we has the secondary ultrasound, not only did my baby have cysts in her brain, she also had an underdeveloped brain structure (corpus callosum), some fluid in her brain, and an enlarged cisterna magna… but it didn’t really end there…

When we had the fetal MRI, all the brain things were confirmed, and they added that they found a cyst by her gall bladder…

When they decided to take the baby out to check what’s really going on, they found she has a cleft palate…

When she was in the NICU she was jaundiced and they suspected that she had an infection because the numbers in her bloodwork were off… yes on top of everything else… but it was not really an infection…

When they keep testing her blood to figure out why the numbers were off, they found out that the reason it was off was because she has underdeveloped kidneys… so they set up a renal doctor appointment a week after she was home…. So we were excited that they set up an appointment with the renal doctor on the first week of January, which meant that we were going to bring her home last week of December, but…

When we went to the hospital to bring her home we found out that she failed her hearing test for both her ears… a follow up appointment with an audiologist suggested that although she may not be completely deaf, she has hearing loss…

When we brought her home, and she was gaining weight steadily, yes inspite of all the issues already… the rate of her weight gain started to slow down a bit because she kept on throwing up her feeds…

When we told the doctor about her feeding issues, we found out she has acid reflux… which of course made feeding all the more challenging… then...

When things started going steady, in spite of everything, and mommy is starting to feel positive about things and focused on feeds and giving her breastmilk that she makes sure she has a lot of stored in the freezer, before she goes back to work and before she started on her meds… she finds out that

When she was about to replenish the frozen breast milk stashed in the freezer inside the house, somebody switched off the freezer that was full of breast milk (as in really full of frozen breast milk) in the garage…. And all the breastmilk was spoiled.

But mommy is dry already because she has stopped pumping for two weeks ‘cause she needed to start on her meds…. So there is no more breastmilk that is supposed to help her daughter’s immune system and contribute to her overall health…

When breastmilk was the only thing that mommy feels good about being able to give her daughter… yes, even if she cannot nurse, mommy is able to give her some breastmilk… but now ALL of the breastmilk is gone…. Not just a bottle, mind you, but a freezer full of breastmilk is gone!

So what else could go wrong from here?

I’m just so done thinking that things are going to start looking up from here… i've been disappointed many times in the last 3 months... been disappointed way to much...

I’m just going to start thinking about worst case scenarios so I won’t be disappointed anymore... its tiring when HOPING seems such a futile attempt.

Seizures? Bring it on.

Orthopedic problems? Yeah sure.

Frequent ear infections? yes that too.

Immune issues? why not?

Failure to thrive as a fulfilled propechy? Of course.

Mortality? Been expecting that too.

What else could possibly go wrong?

6 comments:

Melissa and Luke Young said...

I can understand your frustrations, but it all isnt that bad.. you will be surprised... Isabella will start to do things that you didnt expect, and you will celebrate them in the biggest possible way. I hope it starts to look up soon for you...

Hannah said...

I am so sorry things are just not going well right now. Riley ended up allergic to breastmilk so I had to throw all of mine away. I broke my heart. But I can't imagine Isabella wanting it but not having any, how frustrating. As for all the other things going on, the beginning was so overwhelming for us also. Riley failed her hearing tests, but over the first 3 months, the fluid from being in utero cleared out and her hearing is normal now. Most kids with WHS that have a hearing loss have it due to fluid and if needed, tubes usually solve that problem. Riley also has reflux and we still struggle with her vomiting every day. Hopefully you will find something that works for Isabella so she will keep gaining weight. Hang in there, things will get better.

isdadoinks said...

My son got curious about the knob on the freezer and thus turned it. Apparently it has been off for days already because everything was completely thawed out and there was no hint of "cool" in the freezer. I cannot of course scold my 5 year old... he's 5? he didn;t really do it on purpose, he has no idea what he just did. No wonder the garage smelled.. all the while i though it was the garbage and i just kept taking it out.

I sure hope that things will get better from here... you guys are right, it is just too overwheleming. It is that one thing that i thought was going great you know... that Isabella will be getting BM even if i cannot nurse her. But, oh well...

i hope that from this point onwards, there is no other direction for things to go but up.

Thank you for sharing my sentiments.

Kristy said...

I feel your pain. I also had a lot of breastmilk that somehow got freezer burned and spoiled - I don't know how that happened, it was stored in the proper bags. Anyways, it was very upsetting for me. I remember in the first few months it seemed that every appointment brought on bad news. I know it's hard but it will get better. Try to just enjoy every minute you have with Isabella. I believe she was brought into your life for a reason and will bring you great joy and love. :)

isdadoinks said...

i hope that when you guys say it will get better... it does. It seems like lately the light at the end of the tunnel was light coming from a feight train coming towards me.

I anticipate that day. I'm tired being angry and disappointed.

I want to feel better... there is a "want", so that in itself is good thing to have.

Kisses4Kaylee said...

I can only say that I am here for you and sending positive thoughts and prayers your way...and lots and lots of hugs. xo