Updates Galore!

Yes people, as you can see from above, the three of us are still alive! I know people have been wanting me to update my blog, but last week has just been insane! Last Monday was the start of Drs appointments every day that week. Monday Tony had a tooth ache so he went to the dentist on Monday. Our dentist is also a friend of ours so of course I had to go to show off baby. Tony had to go back to the dentist again on Tuesday to get a temporary crown. Tuesday was also hard because I made the decision to stop pumping. I felt very guilty but I was not producing enough milk. I would pump for 45 minutes to an hour and would not get enough for a whole feeding. It was very disappointing and time consuming (which isn't working when we are driving to drs appointments everyday across town).

Wednesday was a big appointment. Wednesday we met with the orthodontist......never thought I would be taking my baby to an orthodontist but she is going to play a big role in Riley's life. The orthodonitist is really great which is a relief since she is the only one in the state of Arizona who can use the NAM device. She informed us that his premaxila (the piece that sticks out that is part of his lip and gum) is twisted so he'll need even more special taping to help bring it around to prepare it for surgery. Right now she wants us to continue the single piece of tape as you can see above in the picture. She wants to retract the premaxila more before we start additional taping. The taping is going well as far as it is doing our job but Riley's cheeks and premaxila keep getting sores and keeps breaking out. Luckily I have a husband who is a nurse and is very resourceful. The steristrip (the single piece of tape across his premaxila) is the major cause of the breakout. Tony has been using two pieces of tape used to secure ivs on both cheeks in which we stick the steristrip on to rather tha directly on its cheek. We also stick a little piece of bandaid to the steristrip where it would lay on the premaxila to help protect that area as well. His face is clearing up but we still have a bit of trouble. The taping is hard as I have to hold his head still and he DOES NOT like it one bit. He cries and cries and its never easy for a mommy to hear that. We see the orthodontist again on Nov 3 to check his progress and possibly start more taping. We also met with the feeding specialist there as well who said we were doing an excellent job with feeding and that she figured we didn't need her but she gave us her tips and will continue to meet with us to keep up on his progress.

Thursday was a 2 week post partum check up. My OB is so awesome that I really don't mind going. Tony came along and we brought Riley so he could see him. He said that I looked very tired and for me to take it easy. He says he usually advises his patients to stay in for the first few weeks after delivery but he knew that it was impossible for me. He still doesn't want me to "hit the gym" until he sees me in another 4 weeks which is hard as well. I've lost 19 lbs but now I'm kind of at a stand still and I am really worried about not being able to get rid of this baby weight as my weight has always been an issue for me.

Friday was Riley's pediatricians appointment. He had hit the 6 lb mark and doing well. Friday Riley's Uncle Timmy and Auntie Janine came to visit him for the first time. I could not for the life of me find the camera so I only got videos of this visit. It was relaxing. We didn't do much but I was happy they got to meet him.

Monday I had a dentist appointment. Not fun. Had to have a deep cleaning and have to go back again next Monday to have the other side deep cleaned. Tony and I noticed that Riley was starting to become fussy and appeared constipated.

Today Riley had an appointent with the urologist for his hypospadius. 1 in 300 boys get this and is kind of rare. He is just a rarity all the way around. He pretty much confirmed this diagnosis. It is not dangerous but it's just his "hole" is not in the right place and he is a curvature to his penis. The urologist will try and repair him at the same time we will do his lip. Riley is very constipated and fussy. We called the pediatrician who suggested we start a formula for fussiness and gassiness. The last few feedings he hardly wanted and he continuously bears down but does not have a bowel movement. Tony being a nurse reached up on in there and managed to get a hard piece of stool out. We've also given him a suppository to help him along because the poor thing is miserable. Again, thank God Tony is a nurse because he was able to disimpact him a bit. Also, Riley also has a hard time clearing his secreations so at least once a day he chokes. He lets out this shrill cry to let us know he has a build up of secreations in his throat. We were told this was fairly common with babies without a palate. It scared me the first few times it has happens and it still does but I am geting used to it and I know now how to hande this when it happens.

We are adjusting to being new parents and are enjoying it. Tony doesn't go back to work until Nov 7th so we still have some time before he heads back to work.

A few firsts

Riley's lip taped down

Not a good pic of me but that's what happens with little sleep!

His first stroller ride....yes I know his head is off to the side. It would not stay upright!

Chilling in his carseat

Well, I think Tony and I are now settling into the parent routine. I'm actually feeling like a mommy now that Riley is home from the hospital. We sure love the little guy and are enjoying our time off with him. It has been a busy week. Since, he's been home we have not had one day where we have stayed at home. Riley had his first pediatrician's appointment on Wednesday which went well. Riley is almost up to his birth weight which is good. Thursday Tony, grandma and grandpa Marchelli, and I went to In N Out, Baby's R Us, and Target with Riley for his first outing. We had to pick up some more baby supplies. Riley did awesome. He slept almost the whole entire time. He woke up right before we went into Target because it was time for a diaper change an a bottle. He was awake for a while in Target but it was to look around. He didn't fuss at all! Yesterday was his first plastic surgeon's appointment. We drove all the way to Mesa (about an hour away from our house) to have him seen. The plastic surgeon started the taping process which prepares him for the NAM device. It was a very short visit but we got the number to the orthodontist who will fit and put in the NAM device and the surgeon instructed Tony and I how to tape. We have called the orthodontist a few times an are waiting for a call back so we can get an appointment with her. Mommy also gave Riley his first bath. Tony and I bought a bathing tub for him. I thought I could just tear away the packaging and throw it in the bathtub but it needed some assembly. Seems how Riley peed all over himself and me, I wanted to get him bathed and back into some fresh clothes asap as he was getting cold so I bathed him by myself in the sink. Not a good idea. Babies are slipperly little suckers. I did fine but will not do it again. Not worth the risk of dropping him. And....Riley was read his first story which was 5 little monkeys jumping on the bed. Grandma Marchelli bought him this book along with a book with a bunch of disney stories in them. Enjoy the pics I posted above!

We are home....finally!!

I'm sorry I'm getting behind on my blog. I had no idea how tired I would be...even with the baby still in the hospital. Finally after a very long 10 days in the nursery, Riley was finally discharged yesterday. Riley had a hard time breathing, then became jaundiced, and then feeding had been an issue with him which is normal for bilateral cleft lip and palate babies. We are using a special bottle called a Haberman feeder or special needs feeder. I'm pumping breast milk and using these feeders to bottle feed Riley. I did try to breast feed but he was not able to latch on which I was not surprised about but I figured I would at least give it a shot. Tony and I each had to make sure we could feed him before he could be discharged home. He had a feeding tube in for the majority of the time but got that taken out a few days before discharge to make sure he could eat without it. Feeding continues to be a struggle.....he does good for the first half but the second half we have to help him out by squeezing the nipple to help get the milk out.

It was a very emotinoal experience not being able to take my baby home for the hospital. However, he needed to be there and he was getting very excellent care. It was exhausting going back and forth going to the hospital twice a day for feedings but I praised every minute I got to spend with him as we only got to see him about 2 hours a day. Not to mention trying to recover from childbirth and getting our last minute emergency supplies to get the house ready since we thought we had 3 more weeks. Thankfully, both sets of parents have made it down so now we have help which is good.

Riley did great his first night home. I got up with him at 230 but he did not want to go to sleep which is unusual. He likes to fall asleep while we are feeding him which also has been a challenge. Tony got up with him around 4 am and then he slept until about 8. He had his first pediatrician appointment today who will start the referral process for our team of experts who will be on board to fix Riley up including the plastic surgeon who wants to see Riley asap. I'm looking forward getting the process going but a little nervous. It is a lot of stuff to think about. I'm so thankful I married the man that I did as his support has kept me strong. We have kept our communication open as this is not an easy experience to go through. I will post pictures soon. I need to find the memory card to the camera so I can post some :)

Thanks to all of you for your support and prayers.

Riley is here

I apologize for this long awaited blog. As most of you have heard by now, Tony and I got a little surprise on Saturday, Oct 2. I woke up to go to the bathroom at around 4:30 and realized that there was too much fluid coming out just to be going pee. I immediately woke Tony up to tell him I thought my water had broken. He told me to get back to the toilet to make sure it wasn't urine. Afterall, I wasn't due for another 3 weeks and had just met with the ob a few days before that who was pretty sure I wouldn't be going into labor anytime soon. I was only 2 cm dialated and -3 and only having a few Braxton Hicks Contractions. So I went back and sat down but fluid kept coming out. I told Tony that my water had definitely broken and we needed to go to the hospital. I asked him to grab a bag but he said that he figured they would send me home and put me on bedrest.....he later admitted he was in denial and in shock. We got to the hospital and I was soaked. I was polite enough to bring my own towel to sit on. I did it mainly to not get my seat in the Jeep all wet but I was a polite patient and put it down on the wheelchair. We went through the ER entrance as this entrance was the only one unlocked and had a friend check us in. I was immediately wheeled up to labor and delivery and got checked in. We got settled in and I was started on petocin by 7 that morning as I wasn't having any contractions. Because Riley was going to be considered "premie" by a few days and I went into natural labor, I tried for a vaginal delivery. No, I did not chicken out of the c-section. I wanted to have a c-section only if I did not go into natural labor and I was 39 weeks.
Anways, I got my epidural an hour or so after the petocin started. I was not in a whole lot of pain, but I knew ahead of time that I was never going to try to give birth without pain meds and I knew that the contractions were just going to get worse. I looove epidurals. I labored for 19 hours without feeling any pain at all. I was dead wait and could not move at all from the waist down so it was entertaining watching the nurses try to move me around. Finally at around 11, the nurse informed me it was time to push. A half hour later, our beautiful baby boy was born at 11:32 pm weighing in at 5 lbs 13 oz and 19 inches long.Here are some pics:

A good view of his bilateral cleft lip and palatte

In the scale

My first few moments with my son
Our first family photo


Soon after Riley was born, he had to be taken to the nursary as he was having difficulties breathing. He was breathing very fast as he had a lot of fluid left in his lungs. He was first put on a nasal cannula but he didn't like it and it the nurses were worried about it hurting his cleft lip so they moved him to a hood. He was weaned off that about 2 days later.
After his breathing issues became under control, he became jaundice and was put on the bilirubin blanket and also put under lights.

Just yesterday he was discharged off of everything but is feeding tube. Feeding is a major issue with bilateral cleft lip and palatte babies. He is doing better and finally was able to use the haberman feeder the day before yesterday for the first time. We have met with a speech therapist yesterday who worked with Tony with feeding and will work with me as well just to make sure we are both picking up the pointers he is giving us. He's been seen everyday by a neonatologist as well as our pediatrician. We are getting such great care.

As for us, we have been scrambling to get our house ready. The nursary was just about done but there was still a lot of basics we needed. My shower was supposed to be the 5th of October but we cancelled it. We may have it at a later time or have a meet and greet when Riley is able to come home. It has been very hard for me to leave him at the hospital but Tony and I both know he is where he needs to be right now. He's getting excellent care and hoping that he won't have to be discharged with a feeding tube.

I am recovering nicely but it has been very draining. Its been both very physically and emotionally exhausting with Riley still being in the hospital and going back and forth. Tony and I are adjusting well to Riley's cleft lip and palatte and it really hasn't bothered us much at all. I think being prepared made a world of difference. We know that in 4 months he will have his first surgery and his lip will be fixed. We still think he is a beautiful baby and his cleft lip and palatte is just how Riley is. We love him more than I thought we could love anything.