5lbs 5.5 oz!

Yesterday was pretty busy and successful. I first took her to the breastfeeding clinic (our first outing). They weighed her - 5lbs, 2 oz. I was so thrilled! I then breastfed her and they weighed her again. She had taken 75 ccs, which translates into 2 and a half ounces. Wow! This is more than we give her by the bottle! So, it was great to know I was doing good with breastfeeding. We then took her to her first check up appointment. They weighed her and confirmed- she now weighed 5 lbs, 5.5 ounces. The doctor said she looks good. She also explained she will be high risk for a year - until she catches up with her peers because she was born 2 months premature. (It is still hard for me to believe how early she was - I mean, 9 weeks is a long time when pregnancy only lasts a total of 40.)

We asked her about the strict nature of the isolation and keeping her home and away from kids. She said that Scarlet can start to receive her shots and that should help. So, Scarlet got three immunization shots and one oral immunization. The doctor said she should be able to finally meet her cousins in 7-10 days! Since we have a whole lot of family birthdays coming up (including my husband's, September 6, which is also Scarlet's due date), this was very great news! I know we still have to be extremely careful, but I was happy to know we are not "stuck" at home for what seemed like forever. Since she had three shots, though, she has been worn out. She isn't as fussy as I thought she would be, but she is sleeping ALOT! It is good, since I think she needs the rest - and we are able to catch up on other things, but I hope she snaps out of it soon. It's been 24 hours. She is still eating her regular amounts for the most part. So...

This coming week, we are also starting our Parenting Preemies group/class. I am excited about it. We will finally be able to talk to other parents who have preemies as well. We will also be able to get some specific support and information on how to care for her now that she is out of the NICU. Yeah! We are ready to get more help!

My Identity has been Stolen

In the midst of all of this - my identity seems to have been stolen. Two separate accounts of mine have been compromised. We have reported it and have put a freeze on my accounts. But Oye! This is the last thing I need!

Daddy Time

Scarlet Rose loves her Daddy!

Very Hungry

Scarlet was so hungry one nght that she got all tied up in her bib. Don't worry - she didn't scratch her eye. We pulled her hand out just after capturing the image on camera.

Aunt Stef and Uncle Jim

Uncle Jim and Aunt Stef were able to come over this weekend and see Scarlet and hld her for the first time. Since Scarlet can't be around kids yet (two months of home isolation and 6 months to a year away from kids, sick people, and crowds), Haley, Hunter, and Jonah (Scarlet's cousins) played in the park next door.

The Little Inchworm

We had tummy time today on my tummy. Len says this is her "inchworm" phase.

Mommy and Baby

Here we are - her nap time, my supervising time (since she is on her tummy).

Tummy Time

In order to develop her neck muscles, Scarlet needs to be on her tummy for at least an hour a day while we supervise her. She seemed very awake and alert, so I placed her on her tummy and kept a watchful eye. It was so cute that I wanted to show all of you...

The FIrst 24 Hours

Well, we made it! Our first night and day with her has been a success!

Yes, we are exhausted. But, yes, we are all very very happy. What a difference a baby makes!

To be honest, she seems very happy to be home. She is smiling alot more. She hasn't cried at all since she has been here. She gurgles, but isn't fussy at all. She even seems to be starting to play just a little bit. It is so nice to see.

There are so many things we have learned about her already. Some we learned over the last 6 weeks in the NICU. Some we were told during discharge yesterday. Some we figured out over the last 24 hours. Some things are because we are new parents. Some things are because she is a preemie, and needs to be handled a bit more gently than a newborn.

She likes to be still - because she was still in NICU for 6 weeks - Walking around with her makes her feel yucky - like she's on a boat. While she was in the NICU, everything was done in her crib (rolling cart) - diaper changes, swaddling, dressing, etc. So, we have learned that is her preference for now - at least until she develops more and gets used to us.

She wears out really easy - overstimulation exhausts her.

Stimulation means having to deal with more than one thing at a time - looking at us AND hearing our voices can be overstimulating if she is also eating AND trying to catch her breath. Fast movements, loud voices directed at her are overstimulating. Camera flashes are overstimulating. Moving her (even from her bassinet to the couch) is overstimulating.

Eating is very hard for her - she has learned how to do it, but it is like a full workout at the gym. Therefore, we have to conserve as much energy as we can for her eating times.

She has learned how to burp and how to help us burp her - she turns her head to one side to help us support her by her jaw.

She has started to reach for her food - she knows its there and its what she needs and wants. She grabs the bottle, our hands, or my skin when feeding.

She just showed Daddy she can hold the bottle herself.

She has stress signals - her way of telling us she's stressed - and her being stressed also leads to her being exhausted. Stress signals: stretching, yawning, sneezing, waving her arms, holding a hand up in a stop sign, grimacing.

When she is holding her hands at her chest or playing with her face, she is stressed, but calming herself down. This means, "Give me a minute."

She also has "I'm ready" signals. These tell us she's happy and ready for more stimulation: Smiling, making an "o" with her lips, being wide awake and alert, looking at us with relaxed arms.

She doesn't really have an immune system built up yet. So, she has to stay home for at least 2 months, except for her doctor appointments (she already has 2: a check up and an eye appointment, since she was on oxygen).

We have to wash our hands before handling her or anything she will touch (bottles, etc.)

Kids and sick people can't be around her for awhile - at least 2 months to 6 months.

She has a schedule already built in by NICU, but she's trying to see where the limits are on it. For the most part, she is sticking to it.

She has 3 different types of medication that have 3 different schedules and two different methods of delivery (in the mouth, mixed with milk). Oye!

She knows how to bottle feed and breast feed.

She has the risk of getting a misshapen head because of prolonged periods of stillness in the NICU and after (from not liking to move). So, we have to really pay attention to rotating her positions throughout the day (side to side and back and front).

And last but not least - she loves us and we love her - Our Scarlet Rose

Home Sweet Home

Our Very Very Long Day

We had a long wait in NICU today, but it was well worth it!

We had to get her meds.

We had to feed her, pump, feed her again, and pump again.

We had to pack her bags - and the car - Boy, oh boy, she had a lot of stuff there!

We had to wait for her to pass her car seat test - she did!

And we had to wait while our nurse discharged another baby AND learned the computer system at the same time.

It took 7 hours!

But, she's home!

She is Coming Home TOMORROW

TUESDAY!!!!

The next picture you will see will be of her in her coming home outfit - outside, in the car - AT HOME!!!

Today when I went in - ready to spend the day there - they said she was ready to go home! She breastfed really well (with nipple shields) and then bottle fed really well. They took out her feeding tube. And she has been "chomping down" all day and night.

So, Mom and I ran around town and the house getting everything set up for real. The cradle is next to our bed. We have supplies upstairs and downstairs for changing diapers. We went and got a bassinet for downstairs. And we have the car seat ready to go.

She needs to pass the car seat test - sit in the car seat for an hour and still breathe ok. Then, we will pack her up and off we'll go!

We are both very very excited, nervous, happy, and anxious. Tomorrow will bring a whole new world for us - and we are ready, all three of us!

Three Times a Day

Here's another -oh my gosh, I can't believe she's that tiny- picture. Look at my hand and look at her. And, for those of you who know me - I have fairly small hands.

Today I tried it - three times a day -

I was playing it by ear, and I had the energy - so I made the trip out there three times today.

The first time, she was fast asleep.

The second time, she was awake and breastfed for 10 minutes.

The third time, she was awake and I gave her the bottle instead of breast feeding, since breast feeding wears her out, she hadn't had the bottle (to my knowledge) all day, and I knew she needed to work the sucking muscle... So, all in all, a good day considering two blood transfusions in two days.

And - She's up to 4 lbs, 9 ounces!!! Wow! She's also 36 weeks and 2 days (or 5 weeks and 2 days).

The Rollercoaster Ride

The pictures are of her blood transfusion (the second one).


Ok - I knew that with children we must learn flexibilty, but boy oh boy!!!

Len and I went in early this morning to try to catch her during her "more awake" time, especially now that she has received her blood transfusion - she's a "whole new baby..."

Yeah - right!

She was totally asleep and we couldn't even wake her up. This was the second time I have not been able to wake her up at all. It is a little scary, but since it already happened before and she is receiving the transfusions now, I am less worried about it.

We asked the nurse, a nurse who has taken care of Scarlet quite a bit over her 38 days in the hospital, when she thought Scarlet might be going home. She said, "Oh, about a couple of weeks." We about died laughing. We were thrown into such a tizzy yesterday over the "a couple of days" comment and felt we were not ready that to hear "a couple of weeks" felt like such a relief - and so comical at the same time.

The doctor checked her out and said her blood count came back good, but it could be better. So, he ordered a second transfusion for today. That will be another ounce, making it a total of 2 ounces.

Then the nurse said it would be a good idea for me to start coming more often. Since the goal is for her to nipple feed at each feeding -and my goal is for her to breastfeed - it would be good that I maximize my time there so I can catch her during her more awake and alert hours - as opposed to trying to wake her up.

So, three times a day is what we are looking at. I will work through the actually schedule gradually over the weekend, but I should have it all figured out just in time for things to change again. Hahahaha! Oye!

Blood Transfusion Done! - She's Coming Home Soon!

Wow! What a crazy day!

I was there early for her morning feeding. It went about the same as the noon time feedings - she was groggy and pushed me away alot. But, we tried and then I gave her the bottle. She almost finished the whole thing. The nurse, OT, and the doctor all said that she is doing so well. They said once she gets her blood transfusion, her energy will boost tremendously and she will probably go home a few days after that. Um, what?

The doctor said he will call the blood bank to see if Len's blood is ready and perhaps we will have it by tomorrow. He said as soon as he gets it, he will do the transfusion right away. He increased her bottle feedings to every other feeding. And again, he said that she will be ready to go home very soon because all she needs to do is bottle feed for every feeding in a 24 hour period - and that should happen very quickly after the transfusion. Um, ok...

So, I left the hospital and called Len and told him, "Get ready! She's coming home! Maybe Monday or Tuesday!"

Then, and I know this sounds crazy, I went to the car wash. For those of you who know my crazy thought before - you shouldn't be surprised by this. Before I had her, I said, "I can't have this baby yet - We don't even have crib sheets!" Well, today, I thought, "She can't come home yet, my car is dirty!" See, we scrub up every time we go into the NICU - such a clean environment, and I couldn't imagine taking her from that environment into my filthy car - so I had it shampooed. Oye, what a new mom will do - I am sure she is going to work very hard at making my car very messy very soon.

Then we went to our nephew's first birthday. Happy Birthday, Jonah! What a milestone - but he wasn't so intersted in making a mess of the cake.. oh well!

Next - the hospital - for her nightly breastfeeding. We got there and low and behold, she was getting her blood transfusion!!! Yup! Len's blood came today - it was a perfect match, and they had started it at 6:00pm. Wow! So, we figured she would getting her feeding by tube - but the nurse said, "No, you can breast feed her." um.... ok... so, I did. I ignored the IV in her hand that had Len's blood going into it and put her to my breast. After some complaining, she took right to it and latched on for ten minutes! That was double her longest time from before the whole hemoglobin drop. She got worn our though, so we gave her the bottle. She took half, so we gave her the rest through her tube. Great job, Scarlet!!!

So, they are preparing us for her coming home. The biggest then they are telling us is her susceptibility of getting sick. Most babies get sick, but because she is a preemie, her getting sick means going back to the hospital. So.....

We can't go anywhere with her for 6 weeks.

We can't go into any crowded areas with her for 6 months to a year.

And we have to keep her away from other kids for 6 months to a year.

Oye!

I know it may sound extreme - and it does to us too - but we keep hearing about preemies who end up back in the hospital because they got sick from being around too many people. So, we have to be extra careful.

But we are very very very excited about bringing her home - probably as soon as Monday or Tuesday!

Still Waiting for Transfusion

We are still waiting for Len's blood to be processed - hopefully it will be by the end of this week or early next week. So far, Scarlet is still doing well enough to wait and we are not having to go to the community bank.

In the meantime, she is learning more and more. Twice this week, she has taken her entire feeding be the bottle - 35cc's - 30cc's is 1 ounce, so it is not alot of food, but for her it is alot of work to suck, swallow, and breathe all at the same time. I am so proud (and surprised) that she can do this already - especially when we are still waiting for the transfusion.

We are still trying to breastfeed, but it is a bit more difficult. Swallowing, sucking, breathing, and staying latched on is even more difficult. I also figured out today that I am not there during her more awake times (which is about 6:00am-9:00 am). So, I am trying to breastfeed her when she is ore on the sleepy side.

Therefore, tomorrow, my schedule will be all off - I will go down there tomorrow about 7:45am to be there during her awake time and morning feeding. Hopefully this will help.

My Daily Schedule

Some people have been asking about my days - well... here goes:

(it's funny - when you only get 3-4 hours of sleep, you wonder when the days actually begins)

We'll start with:

8:00am - wake up, pump, get ready for the day... clean kitchen or check blog/email

10:00am - pump, get ready for trip to hospital (pack clothes&milk for her; food&water for me)

11:00am - 1:30pm at the hospital with Scarlet and visitor (Mom or someone else for the day)

2:00pm - home, eat lunch, clean something/continue getting baby room ready

4:00pm - pump, finish cleaning or running errands for Scarlet's arrival and then nap

5:30pm - Len arrives home, we eat dinner and talk about our day

7:00 pm - pump, get ready to visit hospital (finish up her laundry from day before...)

8:00pm - 10:00pm or 11:00 pm - at the hospital with Scarlet and Len (the time for us to come home each night depends on whether she poops on her bed while we are changing her diaper)

11:00pm - home, pump, get ready for bed

11:30pm - 3:30 am - sleep and then pump

4:00am - 8:00 am - sleep and then pump and start all over again (no weekends)

THEREFORE - A BIG HUGE THANK YOU GOES OUT TO ALL OF THOSE WHO HAVE HELPED US. THE STAFF AT HERITAGE, WHERE I WORK, HAVE BEEN EXTREMELY HELPFUL BY BRINGING US DINNER THREE TIMES A WEEK. BOTH LEN AND I ARE VERY APPRECIATIVE. (And honestly, we want recipes and restaurant recommendations - the food has been delicious! Lisa, Kim, Kathy - recipes please. We have consumed all food and all leftovers! Laura, Kevin - where was that from? It seriously put big smiles on both of our faces!!!)

Family Photo

Here we all are - The Vande Family - Jenna, Len, and Scarlet Rose

Grandma and Grandpa Jones

Here they are - first time grandparents! (Sorry, Mom, I can't figure out how to rotate the picture.) Both had a great time holding their granddaughter for the first time. They got to see how expressive Scarlet Rose is. She even noticed some fuzz on Grandpa's face and reached out to touch it - no joke!

Transfusion is Needed

We found out today that Scarlet does need a blood transfusion. Len did bank his blood on Friday, but we have to wait for them to process it. We were told it would only take until today, Monday, but it really takes 5-7 business days. So, hopefully, we will have it by the end of the week.

Luckily, the doctor says she is not in any rush to get it, so he will wait for Len's blood. If, however, Scarlet needs it immediately, we will use the community blood bank.

Please keep the prayers going.

Prayers Please

We have been told this is normal for preemies, but it is still scary to us all the same...

As you know, she started bottle and breast feeding over a week ago. Well, a couple of days ago, the occupational therapist noticed that she didn't have the same amount of energy as before during feedings. So, they ordered a blood test. Turns out that her hemoglobin was low. So, the ordered iron...

Apparently, preemies have a very difficult time recreating red blood cells, and since so many blood tests are done while they are in the hospital, they can't seem to catch up. I guess it is normal for preemies who have been in the hospital for about a month (or more) to have this problem. If the iron doesn't work well enough (and in my opinion, it is not), then she will need a blood transufusion.

So, yesterday morning, Len and I scrambled to get his blood banked for her. It takes 4 days for them to process his blood for her. The doctor will be evaluating her for a need of a blood transfusion, just in time for Len's blood to be ready. Every time I see her (which is twice a day now - to breastfeed), she looks more and more tired. Last night, in fact, she wouldn't even wake up for me. The nurse also said she didn't wake up for her diaper change and was hardly alert during her bath. This is due to her low energy level - and possible need for Daddy's blood.

We are told that once she gets this, she will show an immediate boost in energy (within a few hours). However, I am sure this sets her back in terms of coming home soon. I am in no rush - I want her very very well and ready to come home. I am just praying she gets through this "normal" bump as easily as possible.

She looks so different!

She came into this world weighing 3 lbs 3oz.

Now she weighs 3 lbs 15 oz. - and it surely shows!

We keep trying to breastfeed, and for the most part are doing ok. However, I have learned it is very tiring for premies. It is very hard for them to latch on, and suck, and swallow, and still breathe all at the same time. So, Scarlet seems to do them separately. She will latch on and then wait - which is very cute. She just sits there and waits for me to push the milk into her mouth (OYE, Child!) Then she will swallow, since she never really had to suck. What has scared us once or twice is when she stops breathing. But, she will learn. This too shall pass... And a few nurses have reassured us that she will breastfeed, it is just a matter of time.

Daddy dressed her...

How cute she is!

Bath Time

She's getting plump!

Getting Closer!

Just a quick post -
We are very tired, but excited that we are beginning to feel real parenthood. Last night we were there for 2 1/2 hours. We changed her, took her temperature, breastfed her, held her, played with her, bathed her, and dressed her in new clothes. She is also acting and looking like a newborn now - she cries more - when she is hungry or gassy. And she is starting to plump up - she has chubby cheeks. I'll try to get a picture today (I forgot my camera yesterday).

It was very soothing for us - but when we left, we felt the exhaustion just melt over us. We are realizing we are in for a wild ride when she gets home - which is a matter of a week or two at this point.

Yesterday, the doctor said now all she needs to do is nipple feed at each feeding. Her weight is good, her temperature is good. She will be home before her due date!

So, now, I am thinking - oh my gosh! We have a lot to get done before she comes home!!!

In her rolling cart...

Here she is, on her way to getting out of there...

She is gaining weight - 3 lbs, 13 oz...

She is breastfeeding a bit - the first time was the most successful, but the other two times have been a bit more difficult. I am understanding more and more how she is still not fully ready developmentally to be able to breastfeed, but I am glad we are still trying so she can get used to the idea.

She is maintaining her temperature.

She is wearing clothes all the time now - and I am actually already doing a bunch of laundry. Wow! They get dirty a lot - and she's not even doing anything!!!

Oh yeah!!! One huge piece of progress and good news...

HER PICC LINE IS GONE!!! NO MORE EXTRA FLUIDS!!!

NOW SHE ONLY HAS HER FEEDING TUBE AND HER VITAL MONITORS.

OH AND NOW SHE HAS A "BABY LOWJACK" - IT LITERALLY LOOKS LIKE A HOUSE ARREST ATTACHMENT TO HER ANKLE THAT WILL SOUND AN ALARM IF SHE LEAVES THE AREA - I guess they heard me planning with Len on how to bring in a doll, put it in her place, and sneak her out. Oh well! Best laid plans...

So, she is doing better than we are!

No More Lactation Consulting!!!

I have made my demands! Last night, another lactation nurse - or whatever they call themselves - talked to me and made me feel like I was doing something wrong. I had a huge melt down, but both Mom and Len were there for me. In a nutshell: Kaiser's lactation department gives all kinds of different "musts" and isn't very nurturing. She asked me how my appointment went on Tuesday and I told her it was extremely unpleasant. I was given a survery to complete when I checked in about if she rides in the backseat, if I shade her face from the sun, how many times a day does she pee, etc... I was also asked why I didn't bring her to the appointment - um.. because she's hooked up to a bunch of wires??? And this woman proceeds to go through the same list of questions all the rest ask - almost like she's lookng for what I am doing wrong. So, in the middle of her interrogation, I said, "I'm done!" I later told the nurse who saw all of this that I no longer wanted to talk to any lactation person - except for one. She is putting the note in my chart that only that one lactation educator can talk to me - and no other. It boggles my mind that breastpumping and breastfeeding require the mom to be stressfree, and yet that department causes so much stress!