Going, going...




Miss Ruby is up 9 ounces from last Friday! She is a much happier baby now that I'm actually feeding her enough. This photo was from last Tuesday when she was looking a little thinner.


I'm the mother of Ralph, born April 29, 2007 with meconium aspriation syndrome and an atrial septal defect. He developed pulmonary hypertension as a result. He also has Down Syndrome. Ralph has 7 brothers and 2 sisters. These are our stories...
Going, going...
Wow...it is quiet here for a moment. Feels odd.
Wesley is at work. Chipper is at a track meet. Richard, Jordan, Leroy and daddy went to watch the track meet. Thomas is at grandma's house. Rose is at the neighbor's house. Ralph and Ruby are sleeping! Quiet. Peaceful. Ahhhh.
I feel like the past month has been my "lost month." I have not been able to focus on anything but keeping Ruby fed. We had a rough start and it snowballed. I'm sure that the frantic crying from her colic contributed to her trouble gaining weight, also. There were times that I cried while changing her diaper because her little legs were so skinny. There were words offered in kindness that I took all wrong.
I guess it goes to show that even experienced mothers sometimes struggle at first. Maybe more so. It is much more difficult to ask for help when you have eight other babies under your belt. Maybe it is just harder to realize that you need help with eight other babies under your belt!
We are getting better. Ruby is growing, filling out a bit. No more baggy skin on her arms and legs. She still has crying spells, but they are happening less often. I'm getting a little more sleep. Hurting a little less.
I'm glad that our clouds are lifting because I'm ready to get to know Ruby. I'm ready to fall in love with her. In my experience, bonding with a baby after a c-section is different and more difficult. I was numb when she was born and in a way I still am. Dealing with a screaming, colicky baby doesn't help.
I didn't feel her leaving my body. I know she did. But, it feels unreal. I must reconcile my heart with my mind. Feelings follow action, heart follows mind. I'm good.
OK, now the dog wants to go out. Peace and quiet are over. I'll put up some pictures tonight.
Life is so stinkin' busy around here right now! I feel like I'm just hanging on tight so I don't fall off the ride. Ruby is snoozing for the moment so I'll have to make this fast!
Thomas did well on his state assessments last week. It was three days, two tests per day. Thankfully dad was in town last week and was able to help me get him there and picked up several times. He was signed up for morning testing, but he had to leave early and come back in the afternoon one day so that we could attend a memorial service. Phew.
Yes, a memorial service. James aunt passed away on April 1. She was young, too young. Cancer sucks and then it sucks some more.
Wesley passed his first CLEP test last week. Thomas, Leroy, Ralph, Ruby and I dropped him off on Thursday afternoon and then went to Eastborough Park to kill a couple of hours. Leroy likes to harass the ducks there!
Chipper had his first track meet last week and it got rained out. :( He had another one today and then an orchestra concert tonight! Richy is also running track this Spring.
Oh joy! Summer rec baseball practice starts this week. I've gotten a few emails from coaches about practice times. It's always funny because the emails usually say "I'm your child's coach this year" and so I have to do a little research to figure out which of the children they are coaching! Five children, five different teams. Next year I'm going to offer them $20 ($50 even!) NOT to play baseball. I think my sanity is worth a couple hundred dollars, don't you?
Wesley's graduation is coming up! WOW! He is so incredible...really a treasure to me. We ordered some announcements today because tomorrow it the deadline to turn in announcements for the graduation ceremony scrapbook. That's me...last minute scrambling. Oh, also turned in a graduate info sheet to church today...2 days late. I know people understand my being lame, because I've been preoccupied with Ruby, but it still feels bad to be so lame!
Ralph had his appointment with the cardiologist today. I brought along a Signing Time video for him to watch during the echo. I thought he would be so mesmerized by it (like he is at home) that he would be still and good. Well...no. Of course today he wanted to show off all his signs! I had another bright idea to slip his socks on his hands during the EKG! He still managed to pull some wires off with his toes!
Ralph's test results were pretty good. He has been off of oxygen for a little more than a month. And, he is staying off of oxygen!!! His pulmonary pressures were only slightly higher than last time when he was still on oxygen. He is running at 35-40 mmHg. Not terrible. Now we are working on taking him off of some of his medications. After some blood tests this week, I'll know more.
One thing the doc said that bothered me...he mentioned Bosentan in passing. I'm pretty comfortable with the medications that Ralph is taking right now. I've been under the impression that his PH would be improving over time, but maybe I'm wrong. Bosentan scares me. It would be something to consider is Ralph gets worse...a lot worse. He is such a yummy little piece of sunshine! So, I can't think about that right now. If I do, I'll go crazy.
I'll leave you with a little sample of my sunshine:
Posted by Stephanie @ Ralphcrew 0 comments
Labels: Cardiologist, Chipper, oxygen, pulmonary hypertension, Ralph, Richard, Ruby, Thomas, Wesley
If only Ruby would stop crying I would begin writing again! Typing with one hand makes me nuts.
Please remember Ralphie in your prayers! He goes to the cardiologist tomorrow morning. He will have an EKG and an echo. The doc will read the tests right away and we will be making decisions about whether to keep Ralphie off of oxygen permanently or... (gulp) not.
Gotta go...the princess needs me!
OK, something nice now...
It's so much more fun when daddy gives baths! Why do I have so many bathtub pictures? Why am I compelled to share them? Hmmm.
Ruby is up by 3 ounces today. Phew! She is still crabby and gassy though. I guess I'm due for a difficult child. I've had such easy babies for awhile.
If I don't get my act together, I'm going to lose all my readers! Sorry I haven't updated in a few days. I rarely have more than one hand free!
Ruby had her weight check on Friday afternoon and she gained almost 6 ounces from Wednesday! Good progress, huh? But, I'm having major mommy guilt. I can't believe that I'm giving her formula. :( She is very gassy and burpy and just all around unhappy. 90% of the time she starts screaming whenever I put her down. I can normally get her to settle down by about 3 am and then we are back up to feed at 6:30 or 7! Lack of sleep is starting to wear on me.
I'm taking Fenugreek, Blessed Thistle, and *gasp* drinking beer in the hopes that I can be nursing Ruby exclusively soon. She has another weight check on Monday. I'm praying that she well be up another 3 or 4 ounces so I can stop worrying and start enjoying her. But, we have a crazy week ahead of us. I'll do what I have to do, but it may not be fun.
Thomas has state assessments this week. I have to have him across town by 8:30 in the morning on Monday, Tuesday and Wednesday. I'll be able to drop him off if I leave a cell phone number in case of emergency. But, I don't have a cell phone and I don't think they want to listen to Ruby scream all morning. How did our parents ever survive without cell phones??
Jordan gets on the bus at 8:20. Oh yeah, Ruby has her weight check at 9:45 Monday. And we have a memorial service Tuesday morning. *sigh* I'm sure there's something that I'm forgetting.
More pictures soon. Promise.