Chris Farley and Pulling Up (almost)

Rachel pulled up by herself once before we got the camera out. Of course, she didn't do it again but I'm guessing in a couple days I'll have a video of her doing it all the time.

Heavier Things

Day to day, I constantly try to keep a good attitude and not let things get to me. I try to take things in stride and hang on to the motto "things happen for a reason" during tough times. When Rachel was born and with everything that happened those first months, it was hard to see the light at the end of the tunnel. But after a year, we have hit a smooth patch and I'm proud of our girl. I'm happy with her progress and I'm not stressing about her therapy or her being behind. I know she will do it whatever it is when she is ready and I'm not going to worry over it. We are all in a good place.

Last night I went to another Ds Mom's Night Out. We get together about once a month and I try to get to as many as I can. It's such a good place to talk about issues that you may have or hear about issues you may face. One of the moms has a son who has started pre-K and, on top of that, has had car issues, battles with medicaid and the health care system. She was one of the calm ports in my storm during Rachel's birth and seeing her like that made me sad because I know I was seeing into my future. In a couple years, the battles will really begin. I will have to fight for Rachel and it's going to be tiring and it's never going to end. People are not going to want her in their classrooms. They are not going to want to offer her a job. They are not going to make life easy for her. I am going to have to research, plan, argue and push to get the best opportunities for Rachel to learn and grow. There are going to be hurdles so large I'm going to doubt if I can get over them. But I will. I have to. And I know I have their support, these other moms, these super moms who I know in person and online. Just like they had my friends back tonight, I know I will be able to go to them and cry and they will tell me the words I need to hear to keep me going. Right now though, I am going to breath and just enjoy our baby. I'm not going to waste today worrying about what tomorrow may bring.

Goulash

GI Doctor Visit - Our visit went really well. I told Dr. GI that Rachel does well on the double dose of Prevacid but she spits up a lot more but if we take her down a little bit on her dosage she gets really cranky even if she doesn't spit up as much. He suggested we use something called "Thick It" to thicken her formula. She is on a rice added formula but because she is on such a high dosage of the Prevacid, the formula can't get enough acid to thicken. He wants us to use the Thick It and see how it goes for 2 weeks and then try to wean Rachel down on her meds again. The only problem is that 2 weeks worth of this stuff is $90 and not covered by insurance. So, I'm going to call him on Monday and see if there isn't something else similar that insurance would pay for. If anyone else out there has any ideas, please let me know.

Chris Farley - Ok, this is random but Rachel has been doing something we've called Chris Farley arms. Do you remember when he used to swing his arms side to side and say "in a van down by the river?" Well, she looks like that. It's so funny! I have to get it on video to post on here. She's always just shook her toys up and down so side to side is a new deal.

Celery - A while back one of our blog friends posted about how their daughter was encouraged by their PT to practice chewing on celery sticks. I stored that info in my brain and actually used it today. Rachel had a celery stick to chomp on during her dinner and she did great. I think she liked it because it helps with her teeth and she can hold it easily. Again, a video of that will come later.

Pulling up - She isn't doing it yet but she is getting darn close. Her upper body is getting stronger every day and she is grabbing on to us, if we are laying on the floor, and trying to yank herself up. She is a little uncoordinated but I know she'll get it. If she is laying on the ground, on her back, she will grab on to our fingers and do her own little pull up and sit up. I don't have to help her at all. This is a huge improvement that has happened over the last week and a half, since her PT was here last. Before she would grab on, but make no attempt to pull herself up. She is getting it, that girl. Those wheels are turning and I am so proud.

Rachel and her preemie outfit. Such a big girl now!

Fun at the Pediatricians!

(had to show off her new shirt)

Really. It was Rachel's one year check-up this past Tuesday. She was so excited to be there because she LOVES the paper on the exam table. And I tell you, I cannot get enough of her playing with it. I wish I found joy as easily in the simplest things as she and all babies do. She checked out great, got her shots, cried for a couple seconds and then we went home. An uneventful doctors visit. THAT I like. Tomorrow we follow-up with her GI doc to talk about her reflux. At our last visit, he wanted us to take her meds down and see how she did. Every time I reduced just one dose down to half, her reflux flared. Soooooo....we'll see what ideas he has. He seems like a great doctor so I have no doubts we'll be trying something new. I'll update tomorrow and I'm sure I'll have more cute pics of Rachel playing with exam paper.

"here daddy, try some!"

First Birthday Bonanza!

not my best work but still cute

Rachel's first birthday has came and went. Wow! What a nice weekend it was too. The weather was beautiful and we celebrated with plenty of friends and family. Here are a few pictures from that day along with a video of Rachel digging in to her first cake. I also did a little time line in pics as well. :)

ice cream dress!

rachel and grandma c

 

rachel and mama

enjoying the tissue paper

dexter and lynn

catrina and kingston

what was left of her smash cake...yummy!

You Were Meant To Be Here

An except from Rachel's hospital discharges papers...

Pregnancy Complications: Abruptio placentae, fetal bradycardia, polyhydramnios, duodenal atresia diagnosed on ultrasound, premature rupture of membranes and preterm labor.

Labor & Delivery Complications: Placental abruption and variable FHR decelerations. Emergent C/S for abruption with large amount of blood noted at delivery.

Condition at Delivery (for Rachel): Bradycardic, floppy and apneic.

Treatment at Delivery (to Rachel): Stimulation, oxygen, oral suctioning, gastric suctioning, tracheal suctioning, endotracheal  tube ventilation, epinephrine x 2 and cardiac compression.

Infant had no tone at delivery and unresponsive to bag/mask ventilation.

Infant was intubated and given chest compressions. There was no improvement and epinephrine was given via ETT. No improvement was noted and infant was prepped for insertion of an umbilical venous catheter. Upon insertion of the catheter another dose of epinephrine was given as well as 2 normal saline boluses. 

APGAR scores: 1 at 1 minute, 2 at 5 minutes, 3 at 10 minutes (the lowest score is 0, the highest is 10)

Thank you so much for fighting.

We love you fiercely.

Happy First Birthday,
Rachel girl!

Appointment Round-Up!

Doesn't she look like such a big girl now?

Since we are closing out Rachel's first year, she has a lot of doctors appointments. This week we went back in to Brenner Children's Hospital for another hearing test, a visit with the ENT and her surgeon. The hearing test went great. As far as they can tell, she has normal hearing. Her ENT also said her ears look great and we reported that we think her sleep apnea has gotten much better since she started sleeping on her tummy. We won't need to see him again for another 6 months unless something comes up. We saw her surgeon too. He basically took one look at her and told us we were done with his follow-ups. Woohooo! After a year of seeing that guy, it's weird to think we will never have to see him again. I think I'll have to put him on our Christmas card list. He was such a wonderful surgeon and doctor. Next week we have Rachel's one year appointment with her pediatrician, her one year EI appointment and a follow up with her GI doc. Wow. So happy we still have medicaid. (Shhhh! Don't tell them!) Anyhoo. I have to say things with Rachel have been pretty fantastic lately. She's sleeping through the night again and her reflux seems to be in check. During the day, she is happy as a clam most of the time and such a joy to be around. I can't wait for all her family and friends to see her on her birthday and celebrate her first year of life. What a crazy year it has been but, wow, has it been worth it.

Big Yawn!

Trying really hard to get to me

Feeling her new teeth with her tongue

Only being the cutest girl on the planet!

A Year Ago Today

A year ago today, on a beautiful day quite like the one we are having now, I drove myself to the hospital knowing something was going wrong with my pregnancy. I had no idea the surprises and heartache the week ahead had in store for me. Nor did I know the joy I would feel in the following months.

She Doesn't Want to Eat...

if I'm trying to feed her with a spoon. Example: Yesterday, I was trying to feed her some spaghetti from a jar. She wanted no part of it until I plopped down a big blob on her tray. Only then did she dig her chubby little hands into it and bring it to her mouth to eat. I added some shredded cheddar cheese and she was in heaven.

Mommy doesn't care if I'm messy :)

Today, I tried again to feed her with the spoon. Once again, I was denied. So I tried letting her "feed" herself with it. I let her grab the spoon and I put my hands over hers to guide her. First I said "we dip it in the bowl" then "we put it in our mouth!" After she did it (with my help) I cheered like crazy and she thought she was the smartest girl alive. We practiced a couple more times and each time she got more of a handle on where the spoon was going to go. I am going to have to do this with her every day now. Maybe she'll be using it all by herself by November!

Looking at the pictures above you can see Rachel still tilts her head to the left. We went to the ophthalmologist on Tuesday to make sure it wasn't an issues with her eyes. Thankfully, the doctor saw nothing with her eyes. We will really need to get some good tips on how to get rid of it from her PT next week when she comes to the house.

Also, it's been almost a year since Rachel was born and since I started this blog. The music I originally put on here reflected those first couple of months and how I was feeling. I do not think they accurately reflect how I am feeling now: happy. So the music will be changed in the days ahead as we find our way back into the Fall season. The best season of all!

She is a Rock Star!

Watch for it around second 43...

When Language Isn't a Barrier

It seems most of the time the world is talking about how different we all are. How we are all different looking, acting and speaking. There is a ton of time spent on keeping different people out of the country. There is a hard line to get over sometimes when you meet someone new, someone different than you.

There are some things though, that cross that line. Some things leap over the language barrier. Like motherhood. I can not tell you the number of times I have been with Rachel and I have seen another mother in a store and her child won't stop crying. We connect eyes for a second and these thoughts are said without words "It's ok. I completely understand." Today, at the park, I was walking down the path with Rachel and in the distance I heard Spanish being spoken and a child crying. I could see the mom carrying her son and the dad pushing the boy's bike. I didn't have to understand Spanish to know what was going on. Mother to mother we saw each other and smiled. "I completely understand." It's amazing to me how childbirth can connect women on so many different levels. How that one act can, in most cases, overcome the differences between us because we lived through it and the only other person out there who understands is another mother. If only there were most experiences like that in the world that everyone could go through together and connect. I think we would have more compassion for one another.

Sleep Deprived

Our Rachel used to be a little sleepy angel. I could count on her to go to bed at 6pm (even when awake) and stay asleep until her 4am feeding and back to bed until 7am. Night time was wonderful and peaceful. I would put her in her PJ's and  feed her formula and we'd rock together. Then I'd just hold her and rock her before putting her down for the night. It was the best time of my day. We don't have that snuggle time during the day anymore so this was the last little snuggle Rachel I had left.

Well, somewhere between the double ear infections, horrible antibiotics and the tooth coming in something switched. I loath night. I am stressed about it every day. I can still rock my baby to sleep but after I put her down, that is another matter. She will sleep anywhere from 4 to 6 hours and then starting moaning and yelling. It's not really a cry but it can go on for hours until it becomes one. We've tried rocking her. We've tried the musical seahorse. We've tried ignoring her. But nothing puts her back to sleep except a feeding. Nothing. Even then, she wakes up 3 hours later doing the exact same thing. We thought maybe she was hungry because she wasn't getting enough during the day but we stuffed her full of formula and solids during the day to no avail. We got the same results.

So we only have two options left: her reflux is still an issue or she picked up some bad sleep habits. To fight the reflux, she's started taking Mylanta and probiotics. I've also upped her dose of Prevacid up to the full amount again. To fight bad sleep habits, I had to change my night time routine with her and that is what hurts the most. I have to feed her downstairs a half hour before she goes to bed so she doesn't fall asleep while feeding and associate being able to go to sleep with eating. No more sleepy little baby in my arms as we rock in the chair. Before I put her down, I read her a story. That is it and I hate it. I want my happy night time ritual back. So for any of my followers who are or have gone though this, please tell me it gets better. Or, if you have another option for me, please let me know. I hate losing this time with her but I guess it happens sooner or later. I just want it to be later.