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.

We've Created a Monster!

Rachel was still struggling with bottle feedings. Either the milk came out too fast and she choked or it came out too slow and she got frustrated and didn't get enough to eat before becoming tired. We took her to Babies R Us and got 4 different kinds of bottles for her to try, kind of like Goldie Locks and the Three Bears. The last bottle we tried was Dr. Browns and they are our savior! She loves these bottles and now drinks like a champ. In fact, since we got those bottles, we've had to get larger sized ones because she has started drinking so much more! She isn't afraid to tell you that you are too slow in getting her the milk either. She lets out a little cry of annoyance if we are and it's still funny to hear her make noise - even at 3 in the morning.

Rachel is staying awake for longer periods of time, even skipping over her normal in between feeding naps sometimes. It's amazing but scary at the same time. She is starting to be a little person and I am now starting to feel unsure with what I'm supposed to be doing with her. How do you play with a baby? I've been singing to her and talking to her and putting her on her play mat. She does like to kick and has really strong legs. We are working on her head strength too. I put her on her play mat or Boppy pillow once a day. I can't tell if she likes it or hates it but she doesn't cry and she works really hard. She is my little tough cookie. :)

First Bath and Pediatrician

Rachel had her first bath (at our home) Sunday night. I was a little nervous about how she would do but in true Rachel fashion she stayed very calm through the whole thing. We used the "Bath Luv Frog" that is designed to keep your baby warm while washing them. My friend, Beck, suggested I get it and I really think it helped and I recommend it for those of you expecting a baby. :)

Monday, we took Rachel to her first Pediatrician appointment. She got her check up and her first round of immunizations. The doctor told us that it was nice to see Rachel so active and that she had good muscle tone, which is good news with her having Down syndrome. The doctors office was great and everyone was very nice especially the nurse. They made us feel very comfortable and let us know that we could call them anytime of the day and someone would be there to help us and that no question was too silly to ask.

Today has been a good day. I feel like we have hit a stride with her schedule and it's going to be easier to be able to get things done around the house. We even were able to get out and go for a walk with her and the dogs.

Finally Home!

Rachel is finally home where she belongs! Friday morning I called the hospital and found out that Rachel pulled the feeding tube from her nose thursday night (I guess she was as tired of it as we were!) and that she had been taking all of her feedings without a problem. The doctors wanted us to spend the night again at the hospital though. Well, it went great, no issues with her eating. The next morning she was cleared to go home and we got out of there as fast as we could. The picture above is us at the hospital getting ready to go. Rachel was welcomed into our home by my mom, dad, brother, sister-in-law and my dad's dog and our two pups. What a beautiful day it was out too. Last night was long as expected but I could care less. She is a very good baby, hardly ever cries and she loves to eat! Today, Rachel went on her first walk outside with Stephen and the dogs. Tomorrow, mom and dad leave and Stephen and I will get some quiet time with her. My dad and sister-in-law, Meredith, took a lot of photos and as soon as they send them to me I will post some up here. Until then, I'll try and update as much as I can in between poops and feedings. Oh, and of course staring at her cute little face. :)

Sleep Over

Well, at the urging of the nurse practitioner we roomed in with Rachel at the hospital last night. Over all, it wasn't a bad experience. I now know that I won't be able to sleep with her in our room. She makes too many noises and I am a light sleeper. But she sleeps for 2-3 hours at a time and didn't cry at all when she was ready to be fed. We just knew she was hungry because she started moving around more at that 2-3 hour mark. The experience would have been much better if we didn't struggle the whole night trying to get her to eat with the slow flow nipple. For some reason they (doctors or nurses?) switched her back to it and she gets so tired trying to suck out the milk by the time she gets only halfway through she is exhausted and done. Finally, the last feeding we had with her this morning before we left, Stephen tried a normal flow orthopedic nipple and she did fine! She drank all her milk minus 5 CC's. The next two feedings after that she drank all of her milk without any choking or dribbling issues. So all I can think is that as long as she continues to do this well overnight, they will take the tube out of her nose/stomach again and maybe she'll be able to come home this weekend. I'll be sure to find out more tomorrow and post any updated news.

Not Coming Home

Just a short post. Rachel isn't coming home today. She didn't eat well last night and they had to put the tube back in. To say we are sad is an understatement.

In case you didn't know...

Rachel is coming home Wednesday or Thursday!

We are so excited! Today and tomorrow will be mad dashes to get things done around the house and get prepared for her arrival home. Today her tube was taken out of her nose and the pulse/ox was taken off her foot. Rachel even got to try out her bouncy seat. She sat there looking around, looking at her hands, trying to figure out what exactly was going on, but she didn't cry or seem upset. She was just chillin'. She is just about 6 pounds and up to 18.5 inches. Tomorrow she gets the carseat test. We bring in her carseat and strap her in while she is attached to the monitor to see how she reacts for a hour and a half. They just want to make sure her heartbeat and oxygen levels are good sitting up for that long. Stephen and I also get to view the CPR video and other parenting videos they make you watch before you can take your baby home. Let's hope we pass the little quizes they give! :) November has always been my favorite month and not just because it has my birthday in it. I love Thanksgiving, I love fall and now I love November more because this is the month our baby comes home!

More News and Breastfeeding

Some good news to report! Rachel passed her first hearing test on Tuesday and the PIC line has been taken out of her hand. Wow, how wonderful it is that that line is gone. A much less tangled mess. The next step will be to get the pulse/ox off of her foot, after that, the nose tube and the last thing to go will be the leads on her chest that monitor her heart rate and breaths.

***** Warning! I will now talk about breastfeeding. *****

The last two days I have tried breastfeeding Rachel because we were not having much luck with the bottle. She would latch on and suck but then choke on the milk because it poured out too fast for her. We even used a slow flow nipple. On Tuesday the lactation specialist, Martha, helped me out and Stephen was there for support too. First, we tried just using my nipple and for some reason Rachel wasn't having it. So Martha had me use a nipple shield and that is just what Rachel was looking for. To our surprise, she latched right on and started to suck. She did the same thing at the next feeding. Now that we know she can do it, the only struggle we have to overcome is her wanting to fall asleep all the time. She gets all fussy and starts looking like she wants to eat but as soon as I get her to latch on, she stops and falls asleep. We have to constantly touch her, tickle her, take off her clothes or use a wet cloth to wake her up. It's exhausting! I'm hoping as she nears her due date she will become more awake and able to nurse longer. I am also having a hard time with the schedule the hospital has her on for feedings. I know they have to have her feed every three hours to keep track of everything but that makes it harder for me to "teach" Rachel how to eat. There are times I can tell she is looking for her meal but I'm unable to feed her because it's not time yet. I think that if I was able to feed her when she wants to, she would learn faster. But besides that, I have found so far that breastfeeding is really amazing and I'm happy I've pumped this long so I have the opportunity to try it. :)

Like a Regular Baby

As Rachel has been getting her milk, the more she has been acting like a regular baby. If she was still in my stomach, she would be 37 weeks along and just about what the doctors would consider full term. So I know the activity she is doing now partly has to do with that. But, I know actually getting a full belly has to be doing wonders for her too. She is so squirmy now and becoming more and more awake. She is really able to hold her eyes still and focus on things too. She is also getting the hang of the bottle. She can't drink the whole thing though because she gets herself so worn out by trying to drink. She hasn't master it enough yet to do that. Today though, Rachel did such a good job and I can see she is making progress. She is starting to connect the good full belly feeling with the milk taste and that makes her want to really try. I just have to hold myself back from pushing her too hard and frustrating her and me in the process. Overall, these last two days have been great. The doctor thinks she'll be off of her TPN (nutrients) by Tuesday and they can take the PIC line out of her hand for good!

Wires, a Foot and Poop

I think I had a break through moment today. All this time I think I've held myself in check loving Rachel. I have found I was loving her from arms length because I was afraid of all the things that could go wrong. Today, I actually allowed myself the pleasure of just enjoying her. I didn't have anything pressing to worry about. She no longer has to gain weight for her surgery, have surgery or even poop. She's done all the major things that she needed to do. Now all there is is feeding and I know she will eventually get the hang of that. Without all that worrying hanging over my head I had fun with her today. What a concept! I laughed at her little stretchy movements and her attempts to evade me changing her. I was absolutely amazed at how long she held my gaze today when she was awake and my heart about burst with love as I laid her on my chest to sleep with her arms splayed out. I can't wait until she is big enough to give me a hug with those chubby little arms.

I changed her diaper before I left today and I had a big surprise in the form of lots of poop! Totally took me off guard. I was sitting there struggling with her legs in one hand, trying to keep her wires out of her poop with the other hand while wiping her butt. Well, she pulled her leg out and set her left heel in to the poop instead! UGH! So gross, but I couldn't help but laugh. All this time I couldn't wait for her to poop and now it seems I am not ready for it. I had to call over the nurse to rescue me!

I will try and remember to get pictures of her tomorrow. She is 5.5 pounds and just about ready to stop wearing her preemie clothes. I think she will be out of them by the end of the weekend so I need just a couple more pictures of our sweet girl in her littlest clothes. After that, I will be ready to move on and see her in her "big girl" newborn clothes!

Tears of Joy

On Monday, Rachel had her dye test. We waited all day to find out the results and we didn't get them. We did find out the her VSD had closed and heart issues were no longer on the table. Huge sigh of relief there.

This morning I called the NICU to see if we could find out the results. The nurse told me she would have to have a doctor call to talk to us about it and took our phone number. Normally if a doctor has to talk to you about an issue, it's never a good thing. I waited for 2 hours feeling like my heart was going to beat out of my chest before I called them back to check again since the doctor hadn't yet called us. The nurse on the phone said that Rachel was good and was being fed Pedialyte! I still wanted to make sure I was hearing her right and asked "so the dye test went ok?" and the nurse said "yes!" Tears of joy started streaming down my face. Stephen walked in on the phone call and thought I was crying because something bad happened. I hung up the phone and told him the good news and we both were just so excited and relieved.

We got to the hospital today ready to feed Rachel. The nurse had already tried once and Rachel didn't like it. Apparently Pedialyte tastes like dirt and no one likes it. Why they give a baby food that tastes like dirt I have no idea. Don't you think they would make it tasty so the baby would want to eat it? Anyway, the one tube she had in her nose to her stomach is gone but she now has a tube in her nose to her stomach to help give her food if she refuses to eat through her mouth. We tried to feed her again and we were able to get her to take 5 cc's of the stuff before she refused to eat anymore. So the nurse shot the other 5 cc's through the tube. Other than that, she was a goofy little girl today. She was squirming around like crazy and making it hard for us to dress her and change her diaper. But, I will take on that challenge with a smile. :)

A Bad Day

After having such good news yesterday, I was so excited to see Rachel today and just be happy. When I got into the NICU, I was invited by the nurse to sit in on "rounds" about Rachel. Basically, a doctor and nurses discuss each patient and what their issues are during a meeting. I thought, "Well, I would love to do that and be able to hear only good news this time. I mean, It's only been overnight, what could possibly be wrong that I don't know of?"

So I go in to the meeting and they start talking about Rachel and her having the tube out, and the meds she's on and then they say something about Rickets. My eyes nearly bugged out of my head. I glance over at Rachel's nurse with a look like, did I hear that right?? Yes, she now has Rickets! I am seriously so angry right now I could scream. I am past being sad and feeling sorry for my girl. I am now so angry that we can't even have ONE FREAKING DAY of good news with out the other shoe dropping. I am to the point where I don't even feel like bothering with being optimistic. I think I'll just expect everything to go wrong now so I won't keep being disappointed time after time. Doesn't she have enough issues? What Down syndrome isn't enough? Being born 10 weeks early wasn't enough? Duodenal Atresia wasn't enough? A VSD isn't enough?! No, No, let's throw Rickets in to the mix and make it even more interesting.

Tomorrow they will preform the dye test on her stomach and I'm not even going to think good thoughts. I'm just going to walk in tomorrow and expect them to tell me that something is wrong and she won't be able to be fed (which is supposed to get rid of the Rickets in 3 months) and she's going to have X many more issues. I'm so tired of this crap. Where is that corner that we are supposed to turn?

A Better Day

It took longer for Rachel to wake up from the anesthesia then the doctors thought and she was being lazy about breathing. She had been on the ventilator since Monday, so yesterday they finally decided to dial down her ventilator to force her to breath on her own and it worked. They were able to take the tube out tonight at 6PM! Rachel also had two poopy diapers today which is wonderful. That means her system is starting to work the way it should. The doctors expect to be able to do the dye test on Monday to make sure she doesn't have any leaks in her system. After that, she'll be able to start eating! Right now she weighs 5 pounds, 2 ounces. It won't be long until she is out of her preemie clothes.

In the picture above, Rachel has on her first Halloween outfit. It was given to us by someone in the NICU as a anonymous gift. The picture was taken before the ventilator tube came out when we were visiting her earlier afternoon...I'm sure she's MUCH cuter now.

Now the real test begins...

Rachel had her surgery today and she did really well. The doctor said that the operation went off without a hitch. They are going to keep her intubated and medicated through tomorrow to control her pain and to help her heal. After that, they will let her breath on her own. The doctors think that by Friday they will do a dye test to make sure that stuff will run through her stomach and intestines correctly. And hopefully, we will then be able to feed her through her mouth! That will be a huge step and test. She needs to be able to digest her food and pass stool before we can really celebrate. This week is going to pass by so slowly as we wait for Friday.

P.S. Her butt really isn't that low...just the diaper is! ;)

The Time Has Come!

Rachel is getting her surgery tomorrow! She is up in weight to 2062 and we are so excited. I haven't been able to see her in two days since I had my gallbladder removed on Saturday and I am so happy I'll be able to see her tonight. We are going to spend the night at a hotel close to the hospital so we can see her first thing tomorrow morning too. The doctors will be taking her about 8AM to prep for surgery. I will post more tomorrow after the surgery.

Rachel's Room

Just thought I'd post pictures of Rachel's room. It's basically done but the more time she is away from home, the more time I have to think about other things to do in it! Not a good thing! Haha!

One Month Old

Today Rachel is one month old! How fast that month has flown by. She is up to 1865 grams or 4 pounds, 1.78 ounces. She is also 17.5 inches which is a half inch more than her birth length. :) They are expecting her to reach her goal weight of 4 pounds, 6 ounces this week and I am hoping beyond hope that that happens. These pictures were taken today. In the one pic it seems like she is pondering about something!

Feelings.

Sometimes you try so hard to stay positive about stuff that all of the negative or sad feelings you have build up and decide one day to just all come out. I hit one of those days.

Wednesday night we met up with a couple for dinner. The guy has a sister with Down syndrome and they thought it would be worth meeting us to talk about Down syndrome. It ended up being a big mistake. The guy doesn't even get along with his sister. He talked of her like she was nothing to him. I don't think he said one positive thing about her. It left me feeling angry. Didn't he realize his words were supposed to help us? That I only needed to hear good things?

Also, I'm just not ready to think of my girl as having difficulty with anything. I am only able to think of her as my BABY. I am not able to read much information on Down syndrome, or think about her schooling, or other issues she may have, because right now she is perfect. She could be like any other baby girl. She could go to college. She could grow up and get married and have children. She could be a doctor. I guess I'm not ready to face reality at the moment but I know I will have to as she grows up. I just need time to adjust.

Yesterday, we also found out Rachel lost weight. She was so close to 4 pounds. I was so ready to hear the nurse say that she gained and hit 4 pounds. But instead we walk in to a 60 gram loss and the news that she needed a red blood cell transfusion. Another needle stick and wire to deal with. Awesome. I just lost it. Everything that has been going around in my head needed to come out and it came out in tears. Poor Stephen had no idea what was wrong with me.

I cried for her weight loss, for her future, for all the tubes and wires on her body, for the callous comments of the night before, for our future children and their increased chances of Down with every year we wait and selfishly, for myself. This new world I am living in wasn't what I thought of while going to sleep at night during my pregnancy. Some days I still wake up thinking this is all a dream, that I'll still have that normal birth and a baby to bring home right after. I am angry and I feel cheated out of Rachel's birth. I never got to hear her cry or hold her. There is part of me that grieves for that lost life. I hate how that sounds though and I am taking a chance putting those feelings out here because it sounds like I don't care about Rachel and that simply is not true. I am so happy that she is here and is our baby. I couldn't see our lives without her in it. Someday, I will be able to wake up in the morning, walk to her room and hold her without worrying about wires or hearing the constant beeping and dings from all the machines and that is what keeps me going.