Aiden is making progress
Aiden is making some great progress! He was moved to the Critical Care Nursery on Wednesday which is a step in the right direction as it means he is not as critical as the babies still in the NICU. He is no longer on oxygen and is doing everything on his own as he is supposed to (eating well, gaining weight, breathing). We were told that he would be coming home on Saturday (tomorrow).However - he had a breathing episode where he needed some additional help on Wednesday am, which has now pushed his coming home date to Monday at the earliest. They wanted to monitor him for another 5 days - and if he has no more episodes, he will come home with us Monday.
They will be sending an apnea monitor home with us in order to carefully watch his breathing, especially because babies with Aperts tend to have sleep apnea (forgetting to breath when they are sleeping). We are sooo excited he will be coming home soon - but nervous as well, so please continue to pray for little Aiden as we know it has helped us get this far.
Aiden's birth story
Ricky and I welcomed our 2nd baby boy on Monday, February 11. He was born at 11:54 pm and weighed 6lb. 4oz. He was 18" long. Most of you already know the complications we've faced in the past few weeks, however some of you don't so I will start with the events of last week and explain Aiden's progress up to this point.Just as when I was pregnant with Ethan, I began having preterm contractions at around 25 weeks. I was put on ProCardia at about 32 weeks to hopefully keep the contractions from becoming productive (causing change/dilation). The contractions never stopped even with the medicine.
On Super Bowl Sunday I felt a few strong ones so I decided that we should make a trip in to triage (despite the fact that Ricky had just finished making his queso dip that I was soooo looking forward to eating). When we went in, they found that I was 1-2 cm dilated. They admitted me, hooked me up to the monitors, an IV and started giving me magnesium sulfate to stop the labor contractions. So rather than watching the game on our own 50" plasma, we were stuck in the hospital watching it on a 13" box...I have to admit I was a little disappointed. :) The mag sulfate didn't do much to calm things down, so we stayed another 2 nights until Wednesday when they finally sent me home on strict bedrest.
I had an appt. that Friday, and I had not changed (still 1-2 cm). On Monday the 11th, it was supposed to snow really bad and I had been having some strong contractions - so even though I wanted to just wait it out until my next appt., something told me to go ahead and go in to get checked out just in case. Ricky left work around 2pm and we headed to the hospital which is about 25 minutes from where we live. When we got there, I was having contractions every 3-4 minutes but was still 1-2 cm. They typically watch things for an hour then recheck you.
After an hour, I had progressed to 2-3 cm, and the nurse said okay, this is it. I was 34 weeks and 5 days which was far enough along that they decided not to try to stop the labor. I had already received the steroids shots the previous week to help develop his lungs so they said Aiden just wanted to make an early debut and they were okay with it. The NICU doctor came in to talk to us about possible complications for a baby this early. My OB came in and broke my water (weirdest thing ever!) and then they started me on Pitocin to get things moving along. I got the epidural and waited to have this baby! We were nervous and excited. Around 11:45, I was 10 cm and ready to go. I pushed for 10 minutes - 3 big pushes - and Aiden was here!
Now on to the complications... When they layed him on my chest, Ricky noticed something didn't look quite right with his hands and feet. The NICU doctor immediately came to my bedside and said that Aiden had something called Aperts Syndrome. She said she would explain everything to us once they got his breathing under control, but that in a nutshell it caused some deformities in babies limbs, some potential problems with the way the brain grows and how the head looks and some other things.
Basically, Aiden's hands look as is if they are in little fists. His fingers and toes are fused together, however the bone structure for each and every finger and toe are there, just underneath some skin. The sutures of the brain and skull of babies with Aperts close too early making their foreheads protrude a little bit. He is going to need several surgeries in the coming years, most likely starting with surgery to open the sutures in his head - probably in the first year of his life. They will also try to shape his head a little better during that surgery. Next will come the more cosmetic surgeries to his hands and feet. The good thing is, with all the bones there, it should not be too difficult to get him looking close to normal and to allow him to have functional hands and fingers. His feet may or may not even need surgery as the balls of his feet and his heels are there which should allow him to walk normally.
We've also recieved a lot of other good news: a head ultrasound showed that all sections of the brain are there, the right size and look good; a stomach ultrasound showed that his internal organs are all in perfect condition (some babies with Aperts have significant problems with their internal organs); a pediatric cardiologist evaluated Aiden and did an ultrasound on his heart - he has an innocent heart murmur (nothing to worry about, Ethan has one as well) but aside from that, no other problems that could potentially be related to Apert's were found.
Apert's was not a result of him being early, rather it was a spontaneous mutation of a chromosome during the early stages of my pregnancy. This is not caused by anything that either Ricky or I did. It happens to 1 in 160,ooo to 200,000 pregnancies.
Believe it or not, the Apert's is not the reason he stayed two weeks in the NICU. He had to be intubated to help his breathing and was given extra oxygen through a nasal canula. They found that Aiden was not producing enough Serfactant on his own, and finally decided to put him on a ventilator to assist his breathing even more and to give him the Serfactant that he wasn't producing on his own. This helps open their air passages in the lungs. He developed Jaundice and was put under the special billirubin lights to help with that.
Ricky and I were discharged from the hospital three days later and split our time between the hospital with Aiden and home with Ethan. There is a Ronald McDonald house located at the hospital where we were able to spend the night free of charge so that we could visit Aiden any time we like.
Ricky and I really appreciated everyone's prayers, phone calls and emails letting us know you were thinking of us. We have a long journey ahead of us, but our friends and family have been such a support system and we couldn't have made it through the first few weeks without you! We'll be sure to keep you aprised of Aiden's progress and will continue to share pictures of both of our amazing boys along the way.
Please continue to keep Aiden, Ethan and our family in your prayers. We truly believe God works in mysterious ways, and we know we have been chosen as Aiden's parents to give him the best life that we can.
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