Wednesday, March 31, 2010

Ethan's Hospital Stay

Sorry it's been awhile since I've posted. We have had a whirlwind life in the last few weeks.
Ethan ended up in the hospital for 8 days a couple weeks ago. He was 25 days old! It ended up that he had Brochialitis. We are still unsure whether the Brochialitis effected Ethan's Cystic Fibrosis. It could be that he just caught a virus that turned into Brochialitis and the Cystic Fibrosis wasn't an added problem. We both had staph infections from breastfeeding and he had thrush. He recovered quickly and after 8 days in the hospital he was sent home with nebulizer treatments and antibiotics. Thankfully, 4 days after coming home he was able to stop the nebulizer treatments. The doctor had us giving him nebulizer treatments 4x during the day. Each treatment would take 30-40 minutes with chest percussion on his back and front to loosen up whatever mucus was left in his lungs. Since Ken went back to work 2 days after Ethan came home from the hospital, I was on my own. It was really overwhelming when added to his normal feedings, medication and the lack of sleep that I have come to find normal.
We were really lucky to have my mom, sister and Ken's mom each take a night at the hospital so we could get a full nights sleep. Ken and I each stayed 2 nights. We learned a lot in the hospital about what to expect in the future. We should expect to have a hospital stay once a year with Ethan. We learned how to do chest percussion, which is done with a plastic circular instrument by thumping on his chest and back. It sounds like it would hurt him, but he loves it! We also heard stories about families that become noncompliant with doing treatments at home. We are going to have to make a routine and hopefully Ethan will never know any different and will cooperate.
Ethan is still a bit congested at night, but he is pretty much 100% and back to himself. He's been smiling a lot and even laughing. He loves it when we talk in low and high pitches. He also loves fans and clocks. When he sees either one he beams.
He will be 6 weeks old tomorrow and last time he was at the doctors office he weighed in at 9 lbs 12 oz and 21 1/4 inches. He's growing so fast!
Here are some current pictures, including a pic from his hospital stay.

Friday, March 12, 2010

Life Changing News

On Monday, Ken and I found out that Ethan has Cystic Fibrosis. We both are carriers of Cystic Fibrosis so Ethan had a 1 in 4 chance of having the disease. We didn't know that Ken was a carrier before I got pregnant and didn't have him tested because we knew it wouldn't change anything. We've had a full week of doctor's appointments. It's been very stressful and scary. For those of you that aren't on our list to receive updates here is what we just sent out today.

We met with Ethan's pediatrician, a nurse practitioner and his pediatric pulmonologist earlier in the week and all say that he has so symptoms of Cystic Fibrosis at this point. In fact, they wouldn't have known he had CF if it wasn't for the newborn screening which lead to the genetic testing. Ethan has the classic type. 50% of all CF patients have this type and it usually involves digestive problems. We had hoped that we would go in for the sweat test next Tuesday and that it would show that he had a mild case, but unfortunately, the test doesn't show the severity. Severity is determined over time. This disease is a "wait and see" disease. All we can do is keep him as healthy as possible and try to limit his exposure to sickness. The doctors have told us that we should keep him out of public places until he's at least 2 months old and that we should try to limit his exposure for the first 2-3 years, but that we can't keep him in a bubble. He will eventually get sick either from us or from something that he comes in contact with. We can't keep him at home forever. Basically, if he gets a cold or any other kind of sickness he may be fine. It may run it's course and he may have no problem, but there's always the possibility that the sickness will linger and if it lingers he may need antibiotics to fight the infection. If that doesn't work he'd most likely be admitted to the hospital with complications. Again, for now he's perfectly healthy and shows no symptoms of CF.

For now as a preventative measure, we are giving Ethan enzymes to help digest his food

We are trying to take in all the information and take it day by day, but it's very overwhelming. We wonder how all of this will effect his life in general, but have to force ourselves to just think about today.

The median life expectancy is 38 years old right now, but that isn't an accurate gauge for him because with each generation of new patients there has been more research and treatments found to improve quality of life and life expectancy. We've been told that we need to remember that life expectancy of 38 yrs old is based on people born 38 years ago, when they hadn't even found the CF gene. He most likely could live into his 50's or 60's or there might even be a cure before that.

Basically, CF involves the pancreas, digestive system and the lungs and also any places in the body that has secretions. The mucus from sickness will gum up his lungs and any other areas of his body when a sickness lingers. He is being fitted for a special vest that will loosen the mucus up so he can work it out by coughing it up or breaking it down so he can get it out of his system. The doctor said that he will be able to work it out of his system. We need to remember that he won't one day wake up with an infection. He has to actually get a cold or something and have it linger before an infection can take place. I have to keep reminding myself of that because any time he coughs or has any kind of congestion I worry that we're on our way to an infection.
We left the pediatric pulmonologist office feeling broken. We had hoped for a mild case or a mistake. We left feeling like we needed to accept this diagnosis and move onto what we could do to take care of Ethan. We are both anxious, nervous and scared of what the future will bring, but know that as time goes on we most likely will return to feeling normal again and when Ethan has problems we'll need to deal with those. He won't always be sick. We are learning to enjoy his healthy times and trying not to think about the times that he will be sick.

Forgive us if we seem overprotective or extremely nervous, we never wanted to be the type of parents that worried about every little thing or that limited people. In fact, we had hoped to be the type of parents who would hand him around. That will take some getting used to. We have complete faith in his pulmonary team and prayer that God will give us the strength, determination and the ability to make the best decisions for Ethan.

If you want to know more about Cystic Fibrosis the website to check out is the Cystic Fibrosis Foundation. We have been told to stay away from other websites because of all the horror stories from way back when. There is a significant amount of hope for Cystic Fibrosis patients now and with more research and treatments constantly coming out we have no reason to think that they won't find a cure and that Ethan won't live a normal life for the most part.
Thank you for your prayers and support! We can feel them!
Erin, Ken & Ethan

Thursday, March 4, 2010

Ethan's 1st Bath

I've posted a lot lately, so this one will be short.
We gave Ethan is very first bath when he was 12 days old. He liked it for the most part, but as you can see from the pictures there were parts he wasn't a fan of. Here are a few of the pictures.

My favorite picture of the wonderful sleeping baby!

We gave Ethan his very first bath when he was 12 days old. Here are a few of the pictures from his bath. He seemed to like it partly, but as you can see he had his moments when he wasn't a fan.

2 weeks old!!!!

Sleeping on Daddy
Ethan finds his fingers to soothe!

A little Daddy/ Son bonding
1st time in his bouncer. It lasted about 2 minutes before he started crying.

He's already two weeks old! I can't believe how fast he has been growing and how fast times has flown by. I guess when you live in segments of time (eat, poop, sleep) with a baby the days start to go fast. Ethan is doing really well! He can hold his head up better. We need to start doing tummy time with him very soon. He's generally very happy and content especially if he has a pacifier to suck on.
We are sleeping as well as can be expected. Although, I do think that we have a good sleeper and are lucky that at night we can put him down drowsy and he usually goes right to sleep. He has his days and nights figured out. When the sun comes out he is much more alert and tends to stay awake for longer periods of time just staring at his daddy. He loves to look at our faces.
Lately, the funniest part of being a parent has been that it seems that whenever Ethan goes to Ken he poops. A few days ago Ken was holding him and Ethan let one rip, well he pooped, it just sounded really nasty. Ken kept saying "Take him, take him!", but I couldn't stop laughing and it was kinda funny to let him sit there with the stinky baby. Here's a picture:

A week ago, Ethan met his cousins. Ella fell in love with him almost immediately. We weren't sure how she would react, but she is a little mommy. She really wanted him to have his binkie in his mouth and would gently place it there and then say, "Eatan meh mehs (sleeping)!" then she would put her finger to her face and say "Shhhh!"

I love this picture! My friend, Lauren, came to take newborn photos when Ethan was 9 days old and he was not a happy camper that day.

Ethan cried and kept looking like he wanted more food earlier today so I gave him one more ounce of breastmilk in a bottle. A few minutes later this is what came back up. All because he just wanted to suck on something. Needless to say, he needed a small bath.

Breastfeeding & a Good Sucker!

We've been having breastfeeding drama lately. I never knew there was so much to breastfeeding that needed to be worked out to make it completely successful. Ethan latched on right after he was born no problem and was born with a really good suck. So strong in fact that he sucks a little too hard.
This may seem a little too personal, but I'll try to keep it light. We headed into see the nurse practioner and lactation consultant on Monday for his 4 day appointment only to learn that he had lost 12% of his body weight since birth. We were told that we would have to supplement with 1 oz pumped breastmilk or formula after each feeding. Meanwhile, Ethan had already gone to town destroying my nipples because of his powerful suck and because he wasn't latched on properly. I was a little concerned, but hopeful that we would fix everything and he would gain weight.
We came back the next day for a weigh in and another appointment with the lactation consultant. He had gained 6 oz in the last 24 hours. We were really happy and figured he would continue to gain really well and be at his birth weight soon. He was doing so well that we then were told to supplement every other feeding and come back on Friday when he was 8 days old.
On Friday, he had only gained another 1/2 oz in 3 days. I was discouraged and getting a little more concerned. The lactation consultant reassured me that he was gaining weight just slower than we had hoped for. He looked very healthy and we had nothing to worry about. I had been feeding him with a nipple shield to let my nipples heal for the 3 days prior and they were finally healed so I could go ahead and nurse without it.
Unfortunately, by this last Monday he had completely destroyed my nipples again and they were worse. We waited for an appointment on Wednesday and when he was weighed it showed he had only gained 3/4 oz in 5 days. I started crying in the doctor's office because I felt so responsible and guilty. Again, I was reassured that we could still fix this and that he was still gaining weight, just not as fast as we had hoped.
I was advised to stop nursing to give my nipples a chance to heal again, pump every 3 hours and feed him with formula and the pumped milk. It was very sad to think that I wouldn't be nursing him for 5 whole days. I was told that he wouldn't have a problem going back to the breast. It appears that my son does not care where he gets his food...he just wants it. He evidently doesn't suck correctly and this is common with many newborn boys. We were told it's not to late to train him and that boys just take longer to figure it out. We'll start suck training early next week and hopefully be back to the breast soon. We are 24 hours into this new arrangement and I do like that Ken can do more feedings and Ethan eats faster with a bottle than from the breast so I sleep more. Ken does not sleep better because he actually has to get up now to feed him while I pump. Luckily, I have a ton of milk and pump what Ethan needs to eat at each meal.
I have no doubt that we will go back to weigh him in the morning and he will have gained a few ounces and by Monday he'll have gained much more. It's nice to be able to see how much he's getting from the bottle.
I have to keep reminding myself that even if breastfeeding doesn't work out, that my son is happy and healthy. We have a very good baby who sleeps at least one 4 hour block during the night and who sleeps in his own bed. Even when he wasn't getting enough to eat, he was still happy (as long as he could suck on something).

Tuesday, March 2, 2010

He's finally here!

Ethan Alan Dean was born on February 18th at 1159PM weighing 8 lbs, 9 oz and measuring 20 3/4 inches long. We are both doing fine. He is 12 days old today! I can't believe how fast time as flown by already. He looks different every day. Sometimes I just stare at him sleeping and start crying because I just can't believe that he's finally here and I'm lucky enough to be his mom. I'm sure that's part hormones out of whack and part real emotion. People told me that I would fall in love with my baby the moment he was born. I felt attached to him when he was born but I don't think I truly fell in love with him until he was a couple days old. I love being a mom! It's especially been more enjoyable now that we have gotten to know each other better and gotten into somewhat of a routine.
We had an interesting 48 hours before Ethan came. Here's the short story (sort of) because it's really easy to make it into a really really long one. I started seeing signs that labor was going to start soon about 72 hours before I gave me birth. 48 hours before my contractions were 8-10 minutes apart, but I could sleep through them for the most part. By about 36 hours before, they were 6-7 minutes apart and we walked every few hours to keep them going. We were both getting excited and anxious to get to the hospital, but knew we had to wait until they were 3-5 minutes apart for 2 hours. After having dinner with my parents on Wednesday night (a little more than 24 hours before his arrival), we headed home and the contractions became more painful and 5-6 minutes apart. I wanted to stay up and keep walking around the house to get them closer together so we could go to the hospital. At 11pm we gave up and tried to go to sleep. Even while lying down the contractions were 7 minutes apart and so painful I couldn't sleep. After an hour, crying and freaking myself out, I got home and they immediately went to 4 minutes apart. We waited the two hours to make sure they were consistent and headed to the hospital.
When we arrived at Labor & Delivery they said I was 3cm dilated, but that the contractions had begun to space out. They decided to admit me and have me walk. At this point, I had not slept in 24 hours and while walking was falling asleep. The nurse told me to get into bed and sleep. 2 hours later they had started the Pitocin and gradually we made more and more progress. Then it was time for the epidural at 5cm.
The first epidural didn't completely take. I could still move my toes and legs, but had some numbness. They pushed it over and it worked a little better, but finally they had to replace it. The first one was very uncomfortable and painful to have put in, so I was afraid of the second one. Thank God, after praying with my mom I felt nothing. This epidural finally took and I passed out and slept for a couple hours. When I woke up I was 8 1/2 to 9cm dilated, but Ethan was still high up, so we waited. At 10pm the midwife came in and they said it was time to push.
After 2 hours of pushing and only getting his little cone out, I guess I turned to my sister and said, "I'm done!" and gave a huge push and all of him came out just in time to be born on the 18th. Unfortunately, I tore really badly (3rd degree). I was completely out of it and scared to hold him on my own, for fear of dropping him. My eyes were rolling into the back of my head because I was so tired.
Thankfully, he was perfect and healthy and even scored a 9/10 on his APGAR test. I'll post more about the last week later.
My recovery has been difficult. I couldn't get out of bed for 24 hours after he was born and had a hard time walking for 2-3 days and it started getting easier after that. Ken has been so wonderful! He took such good care of Ethan and me. We joke that I was probably more work than Ethan those first few days. I'm still on pain meds and hopefully will be off of them soon. Life is good!

Belly Shots - 39 weeks and 4 days

I've been just a little busy lately, but wanted to post the pictures that my friend, Lauren took a week before Ethan came. I'm really glad that we took the time to take pictures of my belly as big as it was because it's hard to believe that it was ever that big now. Thank goodness it goes down fairly fast after birth. But, more about all that in my next post. Enjoy the pictures! Thanks, Lauren!