10 MONTHS AND DOING GREAT!!!!MY OLDER DAUGHTER WAS ASSKED TO DO A RESEARCH REPORT AND SHE TOLD THE TEACHER SHE WANTED CDH. SHE SAID THE TEACHER'S EYES WATERD AND THEN SHE SAID HER NEPHEW HAD CDH AND LIVED 16 PRECIOUS DAYS. I THINK AT THAT MOMENT MY DAUGHTER REALIZED HOW LUCKY WE ARE.

7 months, but seems like 4 years. so after the worlds longest colds both of my sons were diagnosed with asthma and put on a nebulizer, that seeemed to really help. he is doing great now trying to walk, he has two new teeth, full of energy and the determination to not let anything get in his way. He gets what he want or he keeps trying, he is my little hero.

so we had our 5 month check up and everything is fine, then we had a pulmonary visit at Childrens and the doctor asked if there was any choking, faster breathing etc and I said none of that. so since she couldnt find anything to report she lookes at me and says, well you know your son most likely has smaller lungs than normal babies and he breathes faster, and he will probably have troube running in sports. DUH!! I hate going to these appts because it seems like just when I have my head wrapped around the idea that he has survived and is doing good, I am told well you know this could happen that could happen and we need to do all these tests just in case, but dont worry your son is fine. I think I will send my husband alone next time for my sanity

Mekhaai is 3 1/2 months now, he is rolling everywhere and army crawling on his belly!!! I was tickling him and he was just cracking up and blowing bubbles and it dawned on me, he is not this exotic,delicate little bird made of glass, he is a normal baby. I know it sounds bad, but I didn't even know I was treating him like that. I would always hold him gently and quietly, kiss him gently and talk gently and love on him from sun up to sun down and my routine was to check his tummy for I dont know what, but I checked it, and I would listen to his breathing and make sure his chest didnt go in to far, I think I was making sure my little glass bird wasnt cracked anywhere. So, as I am sitting there on this particular day, He rolls over to me and looks up with his big eyes and he smiles at me and I touch the back of his neck and he cracks up like it tickled him, so I did it agian and he laughed again, and I cried. Poor littl guy is gonna think I am weird but it was so normal, and I realized that I had been treating him like that little exotic glass bird. I read many blogs but I never read about this, or maybe I didnt remember that part, but what great feeling. I think the more stories I read the more protective I get, there have been alot of sad stories lately and each time I read one, I hold him a little tighter.

I love to lay my face next Mekhaai's face at night while he is asleep and I can feel his sweet little breaths hitting me. It helps me sleep better knowing that he is right there alive and well. I think of all the parents that have lost their babies to CDH and I just feel this awe like im in the presence of something magical, my son, who i was told to have an abortion with to save myself the pain of losing him at or before birth is laying here next to me. How am I so lucky, why me and not them, its so amazing I cannot describe it to my friends and family, they would tune me out. The awesomeness of him surviving does not register in their minds. They have all moved on and I am still prengnant fighting for him to live in my mind but looking at him as he has survived.

mekhaii had his first virus and did well for his age and condition, his big brother needed antibiotics for the same bug, but both lasted about 3 weeks.

well, Mekhaai is 3 months old now, he had an Echocardiogram and everything is normal now, yeahhh!!! He is 16 lbs and the happiest baby I have ever seen, really. when he wakes up, his eyes get big and he smiles so hard, it looks like he is trying to wag his imaginary tail, or like he knows how lucky he is to be here. There is no better feeling in the world, than to see him smiling. My other kids are so great with him. I can cry at the drop of a hat when I see a sick baby or if i here about the loss of a child. I work in a hospital and I have to try really hard to blink my tears back whenever a child comes in, it hits my soft spot. It doesnt feel like 3 months, it feels more like 8 or 9 months have passed. I pray every day for all the other families dealing with cdh.

My life is almost back to normal, I love my son, he is so sweet and he is a very easy baby considering the tough road we took to get to this point. I feel stronger and more relaxed than ever before, things that used to matter or upset me before slide right off my back now. Mekhaai is 2 months old now and still on a little oxygen, he has a little pulmonary hypertension that I am hoping will be gone at his next visit. He eats with not problems (knock on wood) he is trying to roll over and he talks to his daddy, sometimes he will make this funny little hollering noise when someone isnt paying attention to him, so cute. He smiles and coos and is otherwise a normal baby. I am relaxing more and not watching him breathe every 2 minutes. He weighs 13lbs at 7 weeks and his skinny little legs are now chubby. I love it. I have to pinch myself sometimes to make sure its not a dream. I have seen hell and I escaped it, I feel as though I won the lottery. I am still praying and thinking about all the babies that didnt make it or are about to start there battle with CDH.

I cannot believe it, were are going home tomorrow day 16!!! we did finally hit a few road bumps, FEEDING, what a pain, he is supposed to take so many cc's by mouth and whatever he doesnt take by mouth goes in his feeding tube. well, he has been tolerating his goal amount but hasnt been taking it all by mouth. Last night I had the nurse do two of his feedings so i could get some sleep and something didnt seem right, she said the 12 feeding he spit up 20 cc's which he never did before and she had to stop, then at 3:10 I woke up to him crying and she was supposed to feed him at 3:00, I noticed all his milk was in the pump and I asked her again what happened and she said he only took 20 by mouth and so the rest went into the pump, I think she just didnt want to feed him, because at 6am I fed him and he took 71 cc's and left 4 cc's to go into the tube which is nothing. and then just an hour ago I fed him and he took all 77cc's by mouth and he has never thrown up for me. The Nicu nurses were the best I have seen, but as we move up floors the quality goes down, which is too bad, but that is why I am here, I noticed a few times that they were upset with me, I told the nurse who didnt feed him right that he is always hungry 30 minutes before his meal becuase she was coming in late and he would be screaming and there was nothing I could do but wait, so then I buzzed her nad said hes hungry at 10 minutes past and then it took her another 20 minutes to get set up, I was not impressed at all with her. Maybe she was just an CNA I dont know, but another aide came in and changed his diaper then tried to feed him with the same gloves and I told her, there is one nurse who is on top of things maybe she is the RN, but I just wanted to vent, we really have to watch out for our kids. His pulmonary hypertension has improved 50% since birth and hopefully keeps getting better, I dont know what it was at birth but they said not bad at all, whatever that means, there is so much to remember and learn. But, we are going home and that is all that matters.

yesterday mekhaai's surgeon said to turn the feeding tube off and up his oral feeds but the nurse wasnt comfortable so we are doing 25 ml every 3 hours and up that every 6 hours by 5ml more and whatever he doesnt take in 10 minutes will go into his tube, but he sucked it all down in 5 minutes and passed out to sleep, mamma's little piggy. I went to the ER last night because my head hurt really bad on one side and my pulse was 48 and I just felt funny, but the doctor said my iron levels were low and of course im anemic and have forgotten to take my pills for two weeks and she said stress, what a shock and lack of sleep because of breast feeding. So I am going to sleep at night and pump during the day. I am very tired right now but I cannot help but sit and watch those monitors like I am getting paid for it. I cannot get my head around the idea of him doing well, Im still nervous and panicky over many different things that can go wrong. All in all its been a good two days and lots of things are happening and changing, we get closer and closer to discharge and Im not sure if I am ready, I feel safe with him here at the hospital.

day 9 was great, extubated!!! day 10 chest tube is taken out, ng tube out and feeding tube in, mekhaai has his first meal of breast milk, lets hope he tolerates it well, they will be doing by tube and by mouth just to see how he does. I get to hold him all day If I want now, the nurses he has are great, he has had the same nurse for a while now and she was here 12 hours yesterday and then had to stay another five due to a staffing mix up, then she back 7 hours later to do her next regular shift, she always has a smile and love for my son which I love,love,love and he loves her to, you can see it in his eyes when she talks to him or he hears her voice, it makes me feel good, It takes a special person to work in the NICU, I would not be able to do it, my emotions would get the best of me. So little Mekhaai will be upgrading out of nicu and onto the surgery floor this weekend, he continues to do well and I pray things stay this way, but we all know that CDH is a roller coaster ride. I almost didnt want to post today because I saw a few very sad stories of babies who lost their fight with CDH and I didnt want to be all happy when they were hurting, but then I remembered how I felt when I was still pregnant and I need to hear the survivor stories and the stories of a baby doing good and progressing. My heart goes out to the grieving moms and I think about them every day several times and I pray for them, all of you will always have a place in my heart because you have been there through my journey and helped me alot. I am going to cuddle my little miracle now, oh yeah, I remember saying a while ago that mom had a vision of my son, she described him and so far she has been right on the money, thanks mom

Yesterday and today were good days, the baby recovered well from his surgery and the scare we had with the lung, I guess they nicked it during surgery and then he was on high pressures after surgery and that is what caused the air to leak out into his chest area. It seems to be healing nicely and they have turned the drain tube off that is in his chest and are just watching it, the xray showed no signs of air building back up, so that is good news. He is now on 24% oxygen and we breathe 21%, they turned all his pressures down last night to a very low setting and he is still doing great, I got to hold him for an hour yesterday and it felt so good. He is passing gas, stools and they are hearing bowel sounds, so tonight they said they might extubate him, im not in a hurry though, I like stable and I like knowing he is still here and doing good, I am learning to take it one day at a time. After surgery, he was heavily sedated and he stared jerking and his arms flopped in the air and I ran out telling the nurse he was having seizures, but when she came in she said they were hiccups and since his muscles were relaxed everything would fly in the air, everyone laughed and I was relieved. I am just starting to climb out of my constant state of panic and relaxing just a little. I came into thinking the worst and now that he is doing better than expected, I am learning to accept that. they keep telling me that he wont be here as long as other babies and soon I will be home with him and this will all be forgotten, I said, i will not believe anything until it happens, and I don't think I will ever forget this, I can't, it has changed my life forever. It's kinda like a soldier going to war and coming home to a family and friends that say, oh yeah, he was at war and I bet it was scarey, the poor guy, but in reality, they have know freakin idea just what he has been through, and if they did have even a small inkling of an idea, they would probably need therapy for the rest of their lives. I am a mess, a basket case and I put on my war face every time i go down there. I tried to prepare my mom for what to expect from what I had read and then found out that I wasn't prepared. If I had to give advice to the people who are due very soon, i would say, maybe call your doctor for something to calm and relax you through the tougher times and set backs, find something to distract a good part of your day (i have been pumping milk, it makes me feel like I am doing something at least, because you will feel helpless and when your baby has a tube down his throat and he turns purple with anger and cries but no sound comes out, you are going to feel horrible, sad, sick and helpless and he will just look at you with the most pathetic expression that says help me,take this thing out and pick me up) so I pump, eat,see the baby and sleep, it feels like its been a month or two when its really only day 8!! Also, everyone here is in the same boat as me, they have very sick babies and they are worried too. My first night the girl in the room next to mine was crying, and mean howling and I thought what is going on over there, then it hit me, this is the nicu, she has a sick baby, oh no. I guess I was so caught up in my situation that I assumed I was the only one here going through it. Also, for those of you that are given a bad prognosis, don't listen to them, wait until your little one is born and let them tell their story, I was told my son had a little less than a full right lung, about 1/4 of a left lung and only his small intestine sliding up and down. I even asked the u/s tech if she could see the spleen and stomach and every time they that they were all where they should be, even the MRI showed that, but when they got in there, it was stomach up, small and large bowel up, spleen up. The nurse told me that per the operative report they had a difficult time getting them all back down into the abdomen but they did it and the left lung was actually half of the right lung and the right lung was full size and the left lung got in the way and that is how it got nicked. they said they always want to try and do thorascopic because its better but if they get in there and cannot do it, they will go the other way. Hange in there ladies if you are expecting, no one knows what will happen when they are born, no one, except God. I am glad my mom was here, she held me up when I needed her the most in all of my 33 years, she put her feelings aside and took care of her baby who was falling apart, and then when she knew the baby was stable, then she cried, then she let her feelings out, I was in awe of her courages ability to be there for me and how motherly instinct works. I am about to go see if my little man is awake and hold him for a while, I love watching him act like a newborn now, he scrunches his face up and yawns and pulls his feel to his chest and throws his arms above his head, Maybe I shouldn't have read all the survivor stories or any stories before giving birth, it just made me worry that all those things were going to happen to my son during recovery, but then again maybe if I didnt read them I would not have anything to compare my sons progress with to know how good he is doing.

I GUESS I HAVE BEEN FEELING A LITTLE TO HAPPY AND BRAGGING A LITTLE TOO MUCH. THE BABY WAS DOING AWESOME FROM BIRTH, THEN LAST NIGHT HE WENT IN FOR SURGERY AND THEY CALLED TO TELL ME THEY WERE ON THE LAST STITCH OF HIS DIAPHRAGM WHICH WAS THORASCOPIC SURGERY, THEY SAID, IT WAS SMALLER THAN THEY THOUGHT AND HE HAD STOMACH,SPLEEN,SMALL AND LARGE INTESTINES UP IN HIS CHEST AND THERE WAS MORE LUNG THAN EXPECTED AND IT ACTUALLY GOT IN THE WAY, SO WE WENT IN TO SEE HIM AND WE WERE HAPPY AND ON TOP OF THE WORLD CALLING FAMILY AND FRIENDS, TELLING THEM HE DID GREAT THROUGH SURGERY, THEN WE GOT A PAGE IN THE MIDDLE OF THE NIGHT AND THE SURGEON WANTED TO TALK TO US, I WAS SHAKING BAD WHEN I WALKED INTO HIS LITTLE ROOM AND THEY SAID THEY THINK THEY NICKED HIS LITTLE LEFT LUNG DURING SURGERY AND AIR WAS FILLING IN HIS CHEST AND IF THEY DIDNT PUT A TUBE IN SOON HE WOULD BE VERY SICK. SO I IMMEDIATELY STARTED CRYING AND PANICKED AND WAITED FOR THEM TO PLACE THE TUBE IN HIS SIDE. TODAY THEY SAID HE IS STABLE AND DOING GOOD, I SAT IN WITH THE DOCTORS WHILE THEY DID THEIR ROUNDS AND THEY SAID HE WAS A ROCKSTAR AND DOING WELL, I SAID I CANNOT CHEER UNTIL HE IS OFF THE VENTS AND COMING HOME WITH ME. THIS IS TOO MUCH FOR ANYONE TOO TAKE, BUT I SOMEHOW HAVE TO FIND A WAY TO GET THROUGH IT. I GOT TO HOLD HIM BEFORE SURGERY AND IT WAS SO SPECIAL, THEY SAID I CAN HOLD HIM MORE AS SOON AS HE STARTS WAKING UP. I AM TRYING TO STAY STRONG BUT I DONT THINK I AM DOING A GOOD JOB. IF THEY SAY MY SON IS DOING SO GREAT AND I AM SO LUCKY, THEN I CANNOT IMAGINE WHAT THE NOT SO LUCKY ARE DOING. I THINK I HAVE AGED 20 YEARS AND I AM SICK TO MY STOMACH. THERE IS ANOTHER LADY HERE WHO'S OLDER DAUGHTER HAS CDH AND SHE IS NOT DOING GOOD, I PRAY THINGS GET BETTER FOR THEM. SHE HEARD ME CRYING AND TRIED TO COMFORT ME IN HER OWN TIME OF NEED, WHAT A STRONG, BEAUTIFUL PERSON.

mekhaai was born 3/17/10 at 3:12 pm by c-section. He was 8lb 12.1 oz. I will never ever forget the moment he was born, they walked past me with him, he was dripping wet and they paused for second to show him to me and then the started working on him. He was breathing on his own but I didnt know it at the time. I didnt hear him make a sound and they were working on him right in front of me so I could see everything and I was trying hard to listen to them talk, it seemed like forever, I heard someone say, geet massaging him, hes trying to breathe, but I didnt know they were saying that he was trying to breathe over the tubes, so I asked the doctor if he was alive and he said oh yeah and hes fiesty, and he fought them every step of the way and then I heard someone say he's trying to cry. I layed there and prayed like I have never prayed before in my life and I cried, I cried for myself and everyone else going through this. My c-section was not half as bad as the last one, I had a great anesthesiologist who gave me something for anxiety and It made a world of difference, I went back to my room and sent Mekhaai's daddy with the baby, he was shaking and scared and I am proud of him because he doesnt handle blood well but he did it and he didnt know if he should go with the baby or stay with me and I said go with your son, please, so away they went and I was left not knowing and scared. About 40 minutes after I was in recovery the team from Seattles childrens hospital showed up and brought baby by to see me before they left, I was given a picture of me holding his little hand and they said he was doing really good and all he required was a low vent setting and no blood pressure meds. They called me a few times through the night to let me know that nothing had changed and baby was doing good. Every hour that passed without a phone call was a relief, I checked in often and each time he was still doing good. Now its Saturday and I am just waiting for Monday afternoon to get here and I pray surgery goes well. I have been spending every second with my son, He is awake most of the time and I get to kiss and talk to him, Hes so beautiful I love him so much. He has quite the little temper too. One thing that is really hard, is watching him get upset with the tube in his mouth and he cant make a sound when he cries and it looks painful, he looks like he wants me to cuddle him and take out the tube, I tell him soon, baby, soon, after surgery, just a little longer and things will feel so much better. I love being a mom and each child still feels like the first, I forget each time how amazing and beautiful new life is. I am praying for a safe surgery and speedy recovery, fight little Mekhaai, fight.

:? its almost time to have little Mekhaai, any day now, we will be starting our battle with the CDH monster. I am excited to meet my little man and get this first battle over and then on to home with him so we can start the next battle, toddlerhood and then teenage years. March is a good month and full of new beginnings. Thanks again to all of the support that I have gotten from this site, you all have really helped me through this journey. I can't wait to log back on after Mekhaai has come home and tell everyone that he made it. I will be praying for all of you who are still expecting and those of you who are now fighting.