The Pain

Things have been hard. It is hard to look at Kayleigh and James as they look so much like Kaden. We are in the process of becoming Foster Parents and will soon be trying for a baby. I will not nor ever use the word "again" when I say we are trying. You see Kaden was his own person, there is no again. Nothing will ever replace him. We fixed up our home and are somewhat excited for Christmas. It is hard to be. I think everyday of what we should be doing if Kaden had not had CDH. I hate CDH, with every being of my body and soul. Hate is a strong word, but CDH deserves it. I should be holding Kaden, playing with him, Kayleigh should be playing with him and doing all the things big sisters do. This should be his first christmas, I should be buying him fun toys and teaching him how to sit up and crawl, not visiting his grave. I had a rough life and always thought things could get or be worse, but never, never did I imagine this. I would never wish this on anyone, not even my worst enemy. I should be updating this blog with happy news or any news of his accomplishments, not with montages in his memory or how we bought a blue christmas tree to place at his grave. I should be saying how lucky we are he survived not how lucky we are to have had 29 days with him. I should me saying Kaden is our miracle baby, not our miracle Angel. I should not be crying everytime I see a baby boy or a pregnant women and thinking "They have no clue how lucky they are". I hate people who have children and treat them like trash, who pay no attention to their miracle and have no business having children. It hurts. I just think "God why do they get to be blessed for a lifetime and me only 29 days, am I not deserving?" I know I am handling this well, but I should not be handling this at all, I hate CDH. Everything happens for a reason, but I cannot find a good, or hell o.k. reason for taking Kaden. Kaden's autopsy showed that he bled to death from his repair site. He bled internally and had DIC. He had clots all over him internally. He bled from the Ecmo, because he was heparinized. The same drug that saved his life while he was in me, killed him while he was alive. My son bled to death, he slowly drifted into a coma while his organs and whole body was shutting down. He was slipping away right in front of me and I could do nothing. I failed him, I know it was not my fault but as a mother it was my job to protect him. I wish I would have researched the in-utero surgery more and not trusted the doctors, I wish we would have went to Dr. Kays in Florida or UCSF, or Boston, or Phili. I know there are no do over's and life must go on. It is still not fair though, life is not either, I know this. I just pray that there truly is a heaven and that someday I will see Kaden. I miss him so much words cannot explain.

Kaden's Montage

I made this a while ago but finally got around to adding this here.

Make an on-line slideshow at www.OneTrueMedia.com

My Sweet Warrior Angel

Daddy, please don't look so sad, Mama please don't cry~
'Cause I am in the arms of Jesus and He sings me lullabies.
' Please, try not to question God, Don't think he is unkind
Don't think He sent me to you, and then He changed his mind.
You see, I am a special child, and I'm needed up above
I'm the special gift you gave Him, the product of your love.
I'll always be there with you and watch the sky at night,
Find the brightest star that's gleaming, That's my halo's brilliant light.
You'll see me in the morning frost, that mists your window pane.
That's me in the summer showers, I'll be dancing in the rain.
When you feel a little breeze, from a gentle wind that blows
That's me, I'll be there, planting a kiss on your nose.
When you see a child playing, and your heart feels a little tug,
That's me, I'll be there, giving your heart a hug.
So Daddy, please don't look so sad, Mama don't you cry.
I'm in the arms of Jesus and He sings me lullabies.

Kaden Got His Wings

I am very upset and sad to let you all know the unfortunate news. Kaden passed away in our arms and comfort at 8:15am this morning. We are grieving the loss of our little warrior who will forever be missed but never forgotten. He fought for a very hard 29 days. He is my hero and changed many a lives. All of our doctors & nurses love to tell us that they have never seen such a fighter how how he changed their hearts and minds. My favorite nurse even told me that she is a better nurse because of Kaden. I do not think she will ever know the joy that she brought to my heart by telling me that. Kaden was a sweet little angel that God graced our lives with, even if only for a short while. I am heart broken and shook, but not shattered. I know that Kaden has a purpose, and that he is with God and all his cdh friends and they are playing and laughing in their perfect healthy bodies and hoping that we will all understand that God has a plan. I can speculate on why God and Kaden chose wings instead of feet, but we may never know. All I do know is that God is lucky to have such a blessed soul to keep his company. My son was nothing short of a warrior and will forever be etched in my heart and memory.I appreciate all of the support and prayers and lung function chants. They bought us 6 more days. Dr. Stork said that it is nothing short of a miracle that Kaden did not pass away last Wednesday (6 days ago). She said that there is no medical explanation and probably will never be for him holding on so strong and surviving those six more days. All of his gases said he was in distress but my champion warrior defied the odds and kept his oxygen and pulse and BP stable until this early morning. Kaden's service will probably be on Saturday at 11 am. James and I again want to thank you all for your support, we are handling this as good as we are because of all of you. Kadens journey is not over, there are many things I plan on doing in his honor and memory.

Still Defying The Odds

Kaden is holding on for dear life. They were finally able to turn his head to the right (a little) and move the oscillator to the right side as well. His neck muscles are very stiff from being to left for over 3 weeks. His oxygen saturation is fluctuating between 78-86. His echo also showed that the blood is getting to both sides of his heart which means the medicine is helping his pulmonary hypertension. We are very happy to still have our little warrior. One more day, thats all we can ask for. We are taking Kaden's Journey one day at a time. Kaden will be 1 month old in 6 days!!!! I cannot believe how much time has gone by. I love every day with my little hero. Kayleigh was in the Nicu waiting area today, and she cried when we left saying "I wanna see my baby brother mommy, I wanna see him" It was so hard to hold back the tears. I pray God allows the days to come when we can all be together at home.

Kaden Is Hanging On!!!!

That medicine I mentioned earlier, the very dangerous, lowers BP,
doctors to not expect to work medicine is helping. Kaden's drainage
tube for his tummy got clogged and yellow regurgitation started
pouring from his mouth and nose. I just kept saying "nurse, nurse" She
sucked so much from his mouth and nose it was unbelievable. His
saturation went from 63 to 73 in a matter of minutes after that.
Kaden's saturation went down to the low 40's briefly and thats when we
discussed taking him off if the meds did not work. Well (another
miracle) the med actually upped his BP a little (never happened before
for anyone) and it is holding him steady at about 68 for saturation.
Kaden is more then a miracle, he is my son. We were even getting ready
to sign partial autopsy forms, and call life bank and do his final
prayer. Dr. Stork said it is not over until the fat lady sings. lol.
His gases actually remained stable, so it gave her some hope which did
for us to. I read that prayer and it was beautiful. Thank you so much.
I am overwhelmed at the responses and my heart is warmed by them.
Thank you. All of the doctors and surgeons just keep telling us they
have never seen a baby fight so hard. Kadens cyanosis has even
improved a little. His whole face is longer blue, and his fingers
really only show blue now. He is so swollen he looks like a bull dog
with both eyes swelled shut. God has humbled the whole NICU staff as
well as myself and family. He is a stubborn little man and I know he
just loves proving Dr. Stork wrong. lol. Kaden does well through the
night, so we will get some sleep to be ready for another rough day.
Please continue to pray for my warrior, my life, my son.

Kaden's Prayer

Lord, We lift Kaden up to you, and we ask that you be
with him and his family as he continues to fight.
Lord, we know that you know what is best, and that
your will be done. We pray that Kaden will fight
through this most recent fight and will come out
victorious! We know that you can heal him, we just ask
that you heal him here on earth. Be with the doctors
and nurses and give them the wisdom to treat this
little one. We thank you for everything that you have
given us.
In Jesus' name, Amen.

Jennette
mommy to Gabriella Marie
1/14/2008-1/22/2008
our little angel

Kaden Is Losing His Battle

I am very upset, so please bear with me. Kaden has been stating
horrible all morning. His oxygen is in the 50-60's. His pulmonary
hypertension has taken over. They are going to try flolan, but do not
expect it to work. If it does not we will take Kaden off the machines.
He his severly cyanotic and has severe swelling from his organs and
lungs not getting the blood and oxygen they so desperatley need. Kaden
has fought long and hard and we all love him.

So Far So Good

Well at 3pm they called me to say that Kaden was successfully clamped & they were going to remove him off of Ecmo. I told them to wait until we got there to do the surgery. I told Kaden this is it, this is his true test, and the largest hurdle of all. I promised everything else would seem small compared to this. I couldn't help but cry, I mean this is it, I could lose him now. No more Ecmo to keep him stable. During the decanulization, Kaden's breathing tubes self extubated. Kaden was so sedated he couldn't breathe and his stats dropped and he had to be resuscitated, again with no chest compressions. They already had the cannulas out and were tying off the vein and artery. One more miracle to add to Kaden's list. He is stable and doing ok. Please Lord let it stay this way. Kaden's strength is amazing and he is my hero. I'm ok as long as he is ok. My little man, he's a warrior. He's defying all odds and If it is God's will, he will continue to do so.

Please God........

Oh Lord Please oh Please let Kaden live. I know he will do something great with his life, just please let him have the chance. Kaden has done so much in just 3 weeks and 1 day, imagine what he can do with a lifetime!!! They tried to take Kaden off Ecmo at 10am & they didn't even have him clamped for 5 min when his stats plummeted. They said as of today Kaden has about 50% of his right lung and a nickel sized left lung (that is major progress from yesterday) They switched him to lying on his left side, and put him on the oscillator. We are pressed for time b/c of the bleeding in his abdomen. He must come off soon, so that they can stop the heparin. They are scared the oscillator will worsen the bleeding b/c it is shaking the sutures. I asked Dr. Stork if she ever saw a baby come off Ecmo with this much lung and live, she said no. I was expecting a yes, you know a confidence boost that things will be ok. So I will no longer ask questions looking for a confidence boost. They will try to clamp him again for 15 min in about 20 min, this time before calling the surgeon in. The only thing I know to hope for is for Kaden to live. His left eye is swollen shut again. His swelling is bad and he is eating blood products. Kaden has to come off. I am not ready for this but I know we have no choice. Oh Lord please, I cannot lose him. We really need those Lung Function Chants Now, more then before!!!!

Surgery day went ok

He made it through surgery, my little warrior!!!! Surgery went ok,
they lowered his ecmo flow down to 150 and it stayed that way until a
couple of hours ago b/c we wanted to make sure that the blood flowed
fast enough as to not clot (now at 200). He had a minute amount of
diaphragm on his ribs and that made the surgery go a little better,
and he has a bud for a collapsed left lung. They said sense his
bleeding is doing good that he might be able to stay on ecmo through
the weekend!! Kaden looks really sick right now, but we know this is
what to expect. Hopefully the best is yet to come. I'm still in awww
that he pulled through, I like elation as a surprise rather then a
crushing sad feeling. My little man just might make it through this
bumpy journey!! I have definitely had hope but I know I must be
practical. I cannot explain the joy he brings to my heart. I never
knew such love until Kayleigh and Kaden. They said his x-ray did not
look promising. The place where his left lung should be looks
completely empty. Kaden is a champion warrior and I truly believe that
God has a divine plan for my sweet angel. He has a massive pile of
gauze over his abdomen b/c of the patch and the need to not let it get
infected. Kaden is completely sedated and probably won't wake till
morning. I was glad to hear this b/c now I can get some sleep. I'm
exhausted and emotionally drained. Kayleigh is with our family friend
and doing good too. James and I are glad we cleared this mountain but
we know we still have the biggest mountain to make it over now. Kaden
is amazing and someday you all will get to meet my little man and he
will get to meet all of his amazing cdh friends. I truly believe baby
Will and every cdh angel is cheering Kaden on. Thanks for all your
support and prayers and Lung Function chants.

Never been So Scared!!

Well a lot has happened in the last few days. Kaden had a horrible
saturday and we really started to believe surgery would not happen So
we had Kaden baptized Sunday night. Well monday morning he self
extubated, but more importantly his very severe heart murmur was
gone!!! Even crazier is the fact that Kaden's Ecmo flow was past maxed
out at 320 (his max is 300) and they weaned him that day to 260 and
then to 200. Kadens Echo with and with out No2 (he had 2 done) did not
come back good. But b/c we could wean the ecmo they said surgery is
tomorrow morning. They actually let me hold Kaden from 2-3:30 today,
yes on ecmo. They promised I could hold him alive at least once, I
asked that of them. I said if there is a chance he wont make it,
please let me. Dr. Stork said Kaden must come off ecmo after 24hrs of
surgery. If Kaden makes it through surgery. Even scarier they told us
that they do not think Kaden will make it without the ecmo. They said
unless the surgery stops the pulmonary hypertension and there is some
left lung then Kaden won't make it. We are praying so hard. I'm sure
all of you who have been through this know how serious this time is.
We have a lot to be worried about. First there is getting him to
surgery on ecmo. Then there is the surgery and building him a new
diaphragm, while trying to not let him bleed to death or have bleeding
on the brain. Then there is the patch or bag for his abdomen sense it
all won't fit. After that they will have to take him back to his room,
and try to start weaning him off ecmo and we have to pray that he wont
bleed to death or have bleeding on the brain still and pray he can
make it without ecmo. Please pray for Kaden through surgery (it's at
8am this Friday) and then lots of lung function chants afterwards. I
am a mess. I have never been so scared. I don't know what I will do if
I lose him. I am having the Rev. come tonight and tomorrow to see him
off to surgery. We told Kaden why he must come home, how much we love
him and everything he has to look forward to. I hope he liked the
sound of all that b/c we want to see him enjoy it all. Everyone on the
Nicu floor is praying and they are all scared to. The staff is so
wonderful. I must go and spend more time with him now.

It's been awhile

Well Kaden arrived on August 18th, 2008 and was 6lbs 10.5 oz and 19.5 in long!!! He had the cord wrapped around his neck and needed to be resuscitated immediately. By some miracle Kaden was, easily. They managed this without doing chest compressions, which is a miracle in itself. Kaden was placed on Ecmo on the 20th and has been holding steady so far. He has had his endotracheal tubes replaced (the 27th) and his Ecmo circuit was replaced today as well (very scary). Kaden does not have any signs of bleeding on the brain but did have severe edema which has come down a lot. His left eye was swollen shut but he can open it now to. Dr.Stork (director of Ecmo & our info giver) Took pictures of Kaden while changing his tubes so we finally got to see what he looks like with out them across his face. Kaden has less then 17% of his right lung and no left lung to date. They say this is not enough to sustain life. His chances where less then 10% and yet my warrior is still here, fighting for his life. I wish I could take this all away, I wish I could trade places with him. Kaden is fighting Severe pulmonary hypertension as well. This must get better by next wednesday or they won't do the repair surgery and we may lose our little boy. Kaden also had a throat infection but he fought that too, and now it's gone. My little man has so many battles. I wish I knew how to fix this. Our family and friends have been wonderful. Some more then others. We will have a benefit for Kaden soon. I trust in God that Kaden will pull through.

A Bumpy Start

Since I was just a few weeks pregnant with Kaden we had a very bumpy road. Kaden was first diagnosed with a nuchal fold increase of 7mm, and then during a routine amnio was then diagnosed with c.d.h. which is a congenital diaphragmatic hernia. During more testing we also found out he had cysts on his brain. Luckily the nuchal fold and the cysts have disappeared, but the c.d.h has not. Many family and friends are praying for our little boy, and we hope you will do the same!!

Just a little angry

About 10 weeks ago we went to the Cincinnati fetal care center in hopes of being approved for the utero fetal surgery. Our hopes were crushed when they said it is no longer done except over seas. Then I was reading posts in my support group, Breath of Hope and I kept seeing others talk of fetal surgery. I was confused and asked and then I looked it up for myself and it seems that UCSF is still doing the surgery, boy was I shocked and angered. We wanted the surgery and we were told that we would be candidates (by cincinnati) if they still did the surgery. Well they do the surgery between 26-28 weeks and now it is to late because I am 30 weeks. This surgery could have saved his life, and all I know is that Cincinnati better pray my baby boy will be ok. I know everything happens for a reason, but I think this is just a little ridiculous. Had those doctors told me about UCSF we would have gone in a heartbeat. I feel very angry and hurt right now, and I guess I just need time to cool off.

Those two little lines

I will never forget how I felt the day I took the pregnancy test. I was so depressed from my last miscarriage and it was actually the day that I was due to have that baby. I waited a few days before I told anyone. I wanted to be sure and take another test. My husband was at work and my daughter was napping. I didn't want to take the test for fear of getting my hopes up. I took the cheap test first, and two lines immediately showed up. I was excited but wanted to be sure, I took the digital read out and, pregnant!! I called my friends right away and devised a plan to surprise my husband. I got Kay ready and we drove half an hour to his work. I brought him lunch. In one of the bags I gave him was the test. His face was priceless as he laughingly said "are you kidding"?!? when he opened that bag. I smiled and said no, and he smiled. It was priceless. It's crazy the thoughts you think when you see those lines. What they will look like, whether they are a boy or girl, and what day will I be due. I knew Kaden was a boy the moment I knew I was pregnant. James reminded me not to tell everyone, immediate friends and family only. He made me remember having to tell everyone we miscarried and how hard it was. By the time we thought we were ready to tell everyone we also had to tell them about Kaden's disorder and his outlook. I know it's hard for people to think of what to say when they hear that news. But trust me I'm just as uncomfortable. I'm so sorry to hear that normally works well.