My special needs child

I thought I'd post a little bit about Nova, my special needs baby. I know I've posted bits and pieces about him here and there, but thought I'd post here.

Nova was born 8 weeks premature at 32 weeks gestation back in November '08. He spent 5 weeks in NICU with respiratory and feeding issues. When he came home, he was having these 'blue spells' several times a day, mostly with feedings but sometimes at rest. It was the most terrifying experience of my life to watch my helpless baby repeatedly turn blue in my arms and not be able to do anything about it. Finally after 3 weeks of dealing with these spells he was readmitted on the peds unit under the care of the neonatologist from NICU.. at this point he was 2 months old.

He spent a week in the hospital and thats when we found out he has reflux. We started thickening his feeds and that made a HUGE difference with the feeding related blue spells. He was sent home with an apnea monitor and he still sleeps with it. We got him into the local early intervention program for his feeding issues and he started speech therapy soon after this.

At four months he went for his first NICU follow up clinic and thats when I was alerted about his developmental delays. At that appointment he was measuring at a newborn to 1 month level in all developmental areas. At that point he was referred for physical and occupational therapy and we got those services started through early intervention.

Meanwhile, he was having some other issues and we started taking him to Children's to see an ENT specialist, a Urologist, and a GI Dr. Urology diagnosed him with an enlarging bilateral hydrocele (fluid on the scrotum) and scheduled surgery. GI switched him to an amino acid based infant formula (for supplements.. I'm pretty much exclusively pumping because of his feeding issues) and diagnosed him with a dairy allergy.. this stuff is incredibly expensive- $58 for a little 14 oz can, thank goodness wic covers it! The first ENT appointment was awful.. the Dr pretty much said I was imagining things and he was fine.. well turns out I was RIGHT in being concerned.

On April 21st Nova was having trouble breathing. I took him to the pediatrician and he was admitted to the local peds unit. He spent 3 days there and basically they put us in a room, ignored me and him and let him get sicker. Finally, he went into respiratory distress, had O2 sats in the low 80s, ended up on oxygen and earned himself a 90 mile ambulance transfer to Children's Hospital of WI. He spent 5 days there on oxygen and breathing treatments, ended up with an IV becasue the previous hospital ignored the fact that he could barely eat and let him become extremely dehydrated. He was dignosed with parainfluenza.. the virus that causes croup.

Two weeks later, I took him in for his 6 month check up and he was having breathing trouble again. This time his pediatrician arranged for an ambulance transfer and sent him straight to Children's Hospital. He spent 2 days there and was thoroughly evaluated by ENT. They did a scope of his airways and an xray study and we found out he has laryngotracheomalacia. Basically, his voicebox and windpipe are floppy rather than firm and it contributes to his stridor (noisy breathing) and breathing issues.

He's currently 6 months old, 4 months corrected and at about a 1-2 mo developmental level in all areas.

Oh, and he also has to see a pediatric eye specialist because he has stabismus. Basically, the muscles in his right eye dont work right and its always turned in so he looks crosseyed. He's beginning to not use that eye, so we are patching for now but that isnt working too well because he reacts to the adhesive on the patch. He'll likely get glasses around 10 months, and will likely need surgery to correct the muscle issue round 12 months.

Its incredibly stressful having a child with so many special needs, especially with a 2 and 3 year old that also need my love and attention. He's an extremely fussy baby which makes things stressfull. Feel free to ask questions.. I'm happy to answer :)