Second Play Date

Rachel had her second play date with Dexter yesterday.

All in all, it was a good time for both babies and moms!

Mr. Dexter

Rachel was trying to sneak a kiss...

"Hey, it's not that hard!"

First Smile!

Ok, Ok, we weren't lucky enough to actually catch her first smile on camera but we did get one this morning. I had her first smile yesterday. She gave me a big ole open mouth grin. SO cute! I couldn't believe my eyes. Of course, ever since then I've been trying my hardest to make her do it again...and she hasn't. But, she has blessed us with a bunch of the same smiles as the one in the picture above. I'm so happy. I can't wait until they happen all the time!

P.S. - in case you didn't know, you can click on the picture and it will blow it up bigger for you.

Early Intervention - First Visit

Tuesday, Lisa from EI came to work with Rachel for the first time. She put down a blanket on our floor and proceeded to see how she was doing. She was really impressed with her head control and how high she can raise it. Rachel also rolled over again from tummy to back. So exciting! Lisa put Rachel on her sides to see how she reacted and she did fine. Even though Rachel is still battling a stomach virus, she did very well and only got tired at the very end of the 45 minutes she was working. We were given a number of exercises to do with Rachel too. We were taught how to roll her over from front to back and back to front to teach Rachel how to do it herself. Lisa gave us ideas on mouth noises to make to get Rachel to start imitating by using her mouth although I am really horrible at making the sounds myself! She told me not to use the play mat we have and instead use a plain blanket with one interesting toy. I guess the play mat has too much stuff going on and it can overload Rachel and keep her from focusing. She showed us how to put Rachel on her side with a toy directly in front of her to encourage her to roll over and to reach for the toy. Lisa had this handy jingle bell rattle that Rachel loved. I need to get one of those. She also told us to try and find toys with light since babies as young as Rachel react more to light than color. I really wish I had recorded the session. It would have been nice to have to remember all her pointers and to be able to post on here so everyone could see her progress. Oh well, maybe next time. Right now we are just trying to get her feeling better. She caught some kind of stomach bug and has had diarrhea since Sunday and has also thrown up twice. I'm worried about her losing weight and getting dehydrated. What a crappy way to spend the week.

*** On a side note, my neighbor, Catrina, just gave birth on Tuesday to her first born, a new baby boy, Kendrix Kingston. He was 6 pounds, 10 ounces. I can't wait to see him when they bring him home and I know he will be great pals with Rachel. Congrats to Ken and Catrina!

Monday Pictures

Just some pics of our girl looking extra cute!

10 Random Things About Me

Ok, so my friend, Lynn, tagged me to do this so I guess I will. ;)

1. I love coffee - even more so now after giving birth. I used to hate it up until 2 years ago.

2. I am lazy when it comes to cleaning the house, but I hate when it is cluttered. As long as stuff is put away and the counters and chairs don't have things on them, I'm ok with the dust and dog hair.

3. I love sleeping in a pitch black room. Not even light from a clock is allowed.

4. Going to the dog park used to be the most relaxing ritual I ever had. Now if I can get a bagel before Rachel needs to be fed I'm thankful.

5. I love to give presents. I don't care if I get them.

6. Put me on a beach with a book and you can leave me there all day. I don't have to do anything to have a great vacation.

7. I watch too much TV but having a young baby in the middle of winter doesn't help that habit.

8. I am a loner but I have been making myself reach out more. Friends are important and I can't let them slip away because I'm Ok being by myself.

9. I love being a Mom. Never thought that I would but somehow...it happened!

10. I used to be a gym rat but now I could go a year not seeing the gym and it wouldn't bother me.

A Rainy Sunday Confession

Already, I am having a hard time not comparing Rachel to other children. Baby pictures of large smiles and hands grasping at toys abound on Facebook, but Rachel is only barely smiling. My HEAD knows she won't be the same as my friend's babies but my HEART yearns for it. I am already scared because I know it will be hard for me to see my friends and their children and have Rachel right next to them. The diagnosis of Down syndrome right there, open for all to see, in my baby girl. Keeping Rachel here, at home, gives me a cocoon of false comfort. Alone, here in my house, she isn't slower, she isn't faulted and I don't have to face my fears. And let's be honest, they are my fears. She doesn't have any fear. She confronts everything head on and has since she was born. I guess I have a lot to learn from her. I also do not want my fear to keep those friends and their children away. I am so very lucky to have them in my life. It would break my heart, if my inability (at this moment) to accept Rachel's slower progress makes them feel like they cannot be around me.

I know there will always be days like this one where I battle myself over my feelings and my pride. I am sure there will be many posts in the future going over these same issues. But, I will not let myself beat me. If Rachel can face this world, a world that is going to be tougher on her than it ever was on me, then I can stand here beside her and support her and love her like she deserves from me. I cannot let my own issues affect her life when all she ever brings to mine is joy.

**** For developmental milestones for babies with Down syndrome click on the link to the left under Down syndrome information.

Reflux Sucks

I had to take Rachel back to the pediatrician today. Since Monday, she has been doing this weird cough/gag thing at night. Last night, she actually threw up twice after doing it. It really sounds like she can't breath and that she is choking. The pediatrician said there is a medicine, called Reglan, that may help her reflux but she wasn't comfortable giving it to Rachel because of her intestinal surgery and liver issues. She told me I needed to go see the gastroentologist to see what he wanted to do. I now have to wait until Monday to try and finagle an appointment. They told me the first time they could see her was the end of February. Yeah, that isn't going to work, sorry. She did give us the go ahead to increase her Prevacid dosage to twice a day.

That drug is a pain in the butt to give her. You have to dissolve it in water in a syringe and then squirt it in to her mouth a half hour before she is to eat. Most of the time she spits the meds out or chokes on it and then wants to eat right away. It worked well for a month and a half and now it doesn't seem to be working any more. I can only hope MORE of the drug helps even though I don't like the idea of giving her more. She is on thickened formula, sleeps on a 30 degree angle, and sits up for a half hour before we can even get her close to lying flat. I am out of ideas and it seems like the pediatrician is too. I can't even do tummy time, let her play flat on the floor or put her in her swing. What is the next step? I have no idea but whatever it is, it better work because hearing your child choke at night is a horrible sound.

4 Months Old (7 weeks adjusted) !

4 months ago tomorrow, Rachel came into our lives. What a joy she has been so far. She has gotten so big it just kills me. We removed the head support in her car seat since she no longer needs it because she is so big! We also moved up the straps around her shoulders. She babbles up a storm, is interested in everything around her and we are seeing little shy smiles.

We went to the pediatricians today for her "2 month" check-up. She weighs 9 pounds, 1.5 ounces and is 20 1/4 inches long. The doctor said she looked great. While we were waiting for the nurse to come in and give her 4 (!) shots, I put Rachel on her tummy on the exam table. The doctor walked back in to tell us something and saw Rachel raising her head and then all of a sudden...ta da, she rolled over from front to back for the first time. It was the coolest thing!

Over the weekend though, her reflux came back. Rachel was arching her back, sticking out her tongue like her throat was on fire and coughing at night and while she was eating. The last straw was when she started to refuse to eat again. I ended up getting a new formula to try. It is Enfamil AR Lipil. It has rice in it to thicken the formula and keep it from coming back up so easily. So far, it really has helped. All her symptoms are basically gone and she is sleeping much better. Last night she went 5.5 hours between feedings. I was so surprised when I heard her fuss for food and I looked at the clock and most of the night was already over. I'm happy that we have found something to help her feel better. She is still on Prevacid. I'm pretty sure it wouldn't be good if we took her off of it. The good thing about reflux though is that it peaks at 4 months and should be gone by the time she is a year old.

Neurology and OT

Rachel had an appointment with a neurologist and a follow up with her OT from the NICU on Tuesday at NC Baptist Hospital. She shocked her OT with how alert she was and how chubby she looked but also with how much she moves, moves, moves! The neurologist, on the other hand, was had to read. She was very serious through the whole appointment so I was thinking Rachel didn't look as good as we thought. But as we were leaving the appointment, the OT came out and told us the Dr. was very impressed with Rachel after all that she has been through. I guess the Dr. doesn't smile much but she found herself smiling after seeing Rachel. That was so nice to hear. Since she is our first baby, we really don't know what is normal and to know that she is developing great, even with Down syndrome and her rough start, is a welcomed relief. Plus, she doesn't want to see us again for another 7 or so months!

Scared to Death

Sometimes, at night, when I'm laying in bed, these horrible visions go through my mind. I find myself picturing every possible thing that could go wrong with Rachel. I could fall going down the stairs while carrying her and she would tumble down them. I wake up and go to her crib and she has died during the night. She chokes on her formula and I can't get her to breath again. I am so afraid sometimes that after all that we've been through, there is something more terrible that could happen and probably because of all that has happened, I sometimes expect it will. I wonder if maybe these things pop in my head as a way to prepare myself. How would I handle it? How would I wake up each day without her cooing at me and ready to be held? Right now tears come to my eyes thinking about that possibility. During the day, in the sunlight, those images are far from my mind, thankfully.

I do know a couple of people who have lost their babies at or during birth. I think of them each day as I look at Rachel and my heart breaks for them. Yet, they are stronger than I am. I would not be able to get up each day the way they do and face the world. I do not think I would want to have another baby and here they are doing just that. To me, that is the bravest thing anyone can do. To have a life, to lose that life but to want to try again takes a strength that most people simple do not have. I am happy to know them and I am proud to call them my friends.

God Chooses A Mom for A Disabled Child

There are many poems and stories out there about and for special children and their caretakers....many of them I do not care for, but this one makes me smile.

God Chooses A Mom for A Disabled Child
by Erma Bombeck

Most women become mothers by accident, some by choice, a few by social pressures, and a couple by habit. This year, nearly 100,000 women will become mothers of handicapped children. Did you ever wonder how mothers of handicapped children are chosen? Somehow I visualize God hovering over Earth selecting his instruments for propagation with great care and deliberation. As he observes, he instructs his angels to make notes in a giant ledger.

"Armstrong, Beth; son; patron saint, Matthew.

"Forrest, Marjorie; daughter; patron saint, Cecelia.

"Rudledge, Carrie; twins; patron saint.... give her Gerard. He's used to profanity."

Finally, he passes a name to an angel and smiles, "Give her a handicapped child."

The angel is curious. "Why this one, God? She's so happy."

"Exactly," smiles God. "Could I give a handicapped child a mother who does not know laughter? That would be cruel."

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of self-pity and despair. Once the shock and resentment wears off, she'll handle it. I watched her today. She has that feeling of self and Independence. She'll have to teach the child to live in her world and that's not going to be easy."

"But, Lord, I don't think she even believes in you."

God smiles. "No matter. I can fix that. This one is perfect. She has just enough selfishness."

The angel gasps, "Selfishness? Is that a virtue?"

God nods. "If she can't separate herself from the child occasionally, she'll never survive. Yes, there is a woman I will bless with a child less then perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word.' She will never consider a 'step' ordinary. When her child says 'Momma' for the first time, she will be present at a miracle and know it! When she describes a tree or a sunset to her blind child, she will see it as few people ever see my creations.

"I will permit her to see clearly the things I see --- ignorance, cruelty, prejudice --- and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as she is here by my side."

"And what about her patron saint?" asks the angel, his pen poised in midair.

God smiles. "A mirror will suffice."

Family Plan and the Nap Nanny

Jane, from Early Intervention, came to our home today to set our plan for Rachel. She was really impressed with how well she was doing so far as far as how active she is and how well she holds her head up while she is on her tummy. We have arranged to have an OT (occupational therapist) come to the house twice a month to help us with Rachel's feeding issues. She doesn't have too much to work on for feeding but as far as her mouth muscles go, every helpful exercise we get will benefit her down the line when she begins to talk.

Jane will check in on us twice a month to update Rachel's progress and to see if there are any other services that are needed. She is also going to see about getting us help with affording her formula. The formula is a special kind for preemies and babies who had a low birth weight. Rachel's pediatrician wants to keep her on it and I've found that, on average, it costs about $10 more for half as much of the amount of normal formula. Not cool. I guess it used to be that if you had a child who qualified for Medicaid you automatically qualified for WIC (women, infants, children), a program that helps families afford food, but Jane seems to think that it may have changed. I don't know how much we would use it but I know it would come in handy for the formula cost at least.

Overall, it was a nice meeting. Jane was very friendly and I'm happy she is our coordinator. She seems like she knows what she is doing and will give us all the information that we need to make good decisions for Rachel.

On a different topic, my mom bought Rachel a Nap Nanny (www.napnanny.com). I have been waiting for this thing to arrive and it came today. I read the testimonials on the website and it sounded like a miracle working seat. I'll start putting Rachel in it during the day tomorrow to get her used to it and hopefully by the end of the week she'll be ready to use it at night and maybe, maybe, we'll all sleep a little longer and better! So, here's to hoping!

First Time in a Dress

Rachel is finally big enough to wear some new clothes...the 0-3 month sizes! She hit 8 pounds today too. We had a follow up doctors appointment this morning with the gastroentologist and I wanted her to wear something nice for a change. I put her in a dress that our friends, Priscilla and Rich, got for her and gave to us while I was in the hospital after her birth. She is so cute in her little dress! Jewel tones really look great on her like they do on me. We at least have the same skin coloring since she seems to look like Stephen in most of her other features. So, that is nice. LOL!

Tomorrow, we meet with Jane, the early intervention coordinator assigned to Rachel. She will come to our house and we will sit down and devise a plan for Rachel to follow and what services she needs, if any, right now. It should be an interesting meeting and I'm sure I'll be posting about it tomorrow.

Just Some Pics....

Merry Christmas!

Merry Christmas from Rachel and us!

***my friend, Suzanne, designed the card. She does excellent work and makes birthday invites, wedding invites, announcements and any other celebration card needed. Let me know if you would like her information.

Kidney Doctor News

We took Rachel to see the kidney doctor today. When she was at Brenner's, the doctors were worried that she may have been refluxing urine. She has been on antibiotics since she was discharged from the hospital in case she was refluxing. They did a test on her today that involved strapping her arms up by her head, body and legs to a table and inserting a catheter and injecting blue die into her bladder. WHAT A HORRIBLE NIGHTMARE!! I am so happy we never have to do that again. Rachel was so upset and screaming like I've never heard her before. It was the saddest thing I have ever seen. The good news out of that is they found nothing wrong with her kidneys and she is now able to get off the antibiotics! Yay, that's one less thing to squirt down her throat. The doctor there also had another blood sample taken to check her bilirubin levels. They were still a little high (2.5 when they should be 1) so she will continue to take the Actigall to combat it. Apparently, this will just take some time to correct itself. The kidney doctor, Dr. Linn, said he was amazed at Rachel's progress. He has been in charge of that part of her care since she was admitted to Brenner's in September. He said with her condition the way it was when she came in to Brenner's, he was thinking of all the things that they may need to do for her but now she is fine. It was great to hear. Our girl, our little fighter, always proving people wrong.

We also had a pediatrician appointment to get Rachel's second round of Synagis. It's a shot to help protect her lungs since she was a preemie and preemies have lung issues and are more susceptible to infections. Rachel is now 7 pounds, 5 ounces and 19 3/8th inches long! Wow! She is fitting in to her adorable footie outfits too. Pretty soon she's be out of her newborn stuff. I can't even believe I'm typing that. It's crazy for me to see how different she is in three months. I don't know how I'm going to handle her growing up even more.

A New Friend and Product Endorsements

Yesterday, Rachel and I took a trip down to Charlotte to see my friend, Lynn, and her new baby, Dexter. Lynn had Dexter on the 30th of November so technically Rachel and Dex are are about the same developmental stage. We tried to get a picture of them together but when one was awake the other was sleeping. In these pics Rachel was hungry and wanted nothing to do with the camera. This was Rachel's first time meeting a new friend!







So far there have been a couple items that have really been helpful since we've had Rachel home. The first item my friend, Bec, recommended. It's the Bath Luve Frog. It's like a large washcloth that you soak in the warm bath water and lay on your baby to keep them warm during their bath. Rachel really likes it and never cries during her bath.






The second item is Dr. Brown's Bottles. These have been wonderful as I have stated in the past. They really reduce gas and Rachel is better able to control the flow of milk.



I also really like the Fisher Price Lion Swing we got. We can put her in that and in a matter of minutes she is fast asleep.




Lastly, the Halo Sleep Sac is great. Since she was in the NICU for so long she because used to being bundled to sleep. She is also so active we have to restrict her movement in order for her to relax enough to fall asleep. This product allows us to do that and keep her warm at night without the need for a blanket.

3 Months Old

Today, three months ago, Rachel was born and our world was changed forever. Here are a few pics of our girl today. It's always hard to take pictures of her because she never stays still!

Small Update

The Prevacid for Rachel's reflux seems to be working great. She has been eating really well without any of the issues she was having and she is in a much better mood most of the time! Last night she went 3 hours between feedings and I'm hoping that is a step towards sleeping more through the night. I could use the break!

Rachel is starting to finally fill out her newborn clothes. She is closing in on 7 pounds and is starting to look like a normal little baby and not a preemie. It's strange to hold her against my chest and have her body take up most of my upper body space. I hope she gets long enough soon that she fits in to the footie clothes...they are so cute!

We had a little photo shoot last week for our Christmas cards this year. I dressed her up in an outfit my mom got her. It was really too large for her to wear but you only see the hood and sleeves in the picture so it was OK for that. I'll post the card up here once I've sent them out.

This week we have our first meeting with the Early Intervention team. They will come on Thursday to evaluate Rachel and let us know what her strengths and weaknesses are and what we need to do to help her. They will also set up times for therapists to come and work with her here at our house.

It's funny how you don't understand all the things the government does do for people in need until you are those people. We have Medicaid for Rachel, which brings all our co-pays for doctors visits and medicine to ZERO. We have this Early Intervention team who comes to our house to work with Rachel and that costs us nothing as well. There are so many wonderful programs out there and we are really thankful that they are in place. Without the government, we would be having a very hard time right now.

Doctor Visits

This month alone, Rachel has 6 doctors appointments. We had three last week - a follow up with her surgeon, another trip to the pediatrician and an eye appointment. The follow up with her surgeon went great. (The picture above is me and Rachel with Dr. Pranikoff) He said she looks good and we'll see him again in three months. The eye appointment didn't go as well. It was early in the morning and Rachel is not an early bird. She did not want to open her eyes. The doctor had to put drops in to dilate her eyes and then had to pry them open with his fingers. She screamed and that was so hard to take! The poor skin around her little eyes was all red and puffy after that for a few hours. :( The rest of the month consists of meetings with the Gastroentologist, OT/Speech therapist, and the kidney doctor. Talk about your co-pays adding up!

We have also been battling to control what we think is reflux in Rachel. We've tried one medicine and have moved on to another. She was spitting up a lot yesterday and was cranky so we called the doctor and she called in another medicine for us to try. This morning was her first dose. We should see improvement by tomorrow. It's hard to know what a normal baby does and I find myself thinking something is wrong all the time because of all the things that have happened to her. Is her grumbling every five minutes while sleeping normal? How about coughing or hiccuping all the time? What about extending her tongue out until it looks like she is gagging? Are those normal things or is that reflux? I will see how this medicine works in the next two days. If I don't see any improvement I'll be taking a trip to the pediatrician again.

On a different note, I just want to say congratulations to my friend, Lynn and her husband on their new baby boy, Dexter! He was born on his due date of November 30th which is only 4 days later than what Rachel's due date should have been. I also have two other friends who are due very soon. One had a due date of December 4th but is now scheduled for an induction on the 9th. The other friend is due on the 9th! So, needless to say, I'm excited to have friends with babies around the same age as Rachel. It will be good to be able to talk to them about our kids and the daily struggles they grow up.