December 30, 2009

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 ( 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!

December 29, 2009

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.

December 24, 2009

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.

December 21, 2009

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.

December 19, 2009

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!

December 13, 2009

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.

December 6, 2009

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.