6 week check-up 12-18-2014

  This was a very eventful day full of new appointments for Rochelle and a full day of love and laughter with friends.  Rochelle met up with the cardiologist and her primary care physician to follow her weight gain and any new changes we may encounter.

  The cardiologist appointment started out with them getting an EKG before the doctor came in to do his initial assessment.  She definitely did not like her clothes coming off so we didn't know how we were going to be able to last 3 hours for her echo.  Once they did her weight (7 pounds, 10 ounces--YAY) and length, we had to wait a little bit and then try to get her comfortable and calm before the ultrasound tech brought us to the other room to get her echo done.  After about an hour and half of looking at every possible angle of Rochelle's heart we finally got a complete reading and just waited for the doctor to come in and read the results.  He did confirm that she does still have a ASD and a PDA.  The ASD (hole in the top of heart toward the back) is still a moderate size causing the right ventricle to be enlarged a small amount (which is why she is going to be continuing on lasix but increased the dose to 0.4ml once a day) and the PDA looks to be getting smaller (which is usually the case in many children) to about 2cm in size. Overall great news and we all decided that it is best to just monitor the heart and do a follow-up visit in 4 months.

  The appointment with the pediatrician was next and she is so good with Rochelle (always talking to her and complimenting on her hair/how cute she looks) always answers the many questions I come in with.  With her steady weight gain (she said she is gaining like a healthy baby) we increased her NG tube feedings from 50ml/hr to 52ml/hr every 3 hours since she was tolerating the other feedings so well. We also got some eye ointment due to her increased secretions (yellow) around her eyes that come right back after wiping them off.  She has been having increased constipation issues due to lower fluid levels (caused by her medicine lasix) and we started her on miralax to mix with her formula/breastmilk feedings as needed.  She also continues on her prevacid once a day for her reflux and just answered some other minor questions we had and she said she wants us to come back in two weeks for a weight check and a follow-up to see how she is tolerating any of the changes.  

  Overall it was a very good day of appointments for her and let me just tell you how much manual pumping in the car is NO fun, but I would do anything to help Rochelle gain weight and grow to a strong little girl! After the appointments were done, Shane surprised me with an early Christmas present with a mani/pedi and I got my hair cut the day before! I couldn't believe it, Shane walked around the mall with Rochelle and carrying her oxygen tank and feeding bag while having her in the carrier.  If that doesn't melt my heart so that I could have some alone time (well my best friend Adriane did come meet up with me which was definitely a great surprise) and get pampered which was SO nice!  We then made an extra stop on the way home (at this point Rochelle was done being in her carseat) at our friend Courtney and Danny's and it was nice to have some adult time and we stayed there until 11:30pm!! We realized how good it was to just talk to our good friends (in person) and how we miss doing that, now that we all have kids now.

  Thank you for the continued prayers for Rochelle, she is such a strong and amazing little girl and we cannot wait to see her flourish :) 

SO cute!! 

Rochelle's echo

Daddy and his girls. After he cut off all of his afro!

Bri and her adorable self

Rochelle is definitely winking at us!

Courtney's Christmas gift to Brielle--We LOVE!

Courtney's Christmas gift to Rochelle--We LOVE!!

Sisterly love--she practically crushes her with all of the hugs and kisses! 

The only one good picture out of like 50! lol!

Smitten by her little sister

Brielle is 18 months!!

Yes, we have had a crazy last few months and I can't believe Brielle is already 18 months! She brings so much joy to our lives, we wouldn't know what to do without her. She is such a great big sister and loves trying to care for her and help in any way possible.

Height: 33 inches

Weight: 24 pounds 7 oz.

Likes:
-She honestly loves food (she definitely has a sweet tooth)
-Barney
-She loves to TRY to feed herself pretty much everything.  And in her perfect world, she would.
-Her wubbanub paci (she actually ripped one of her paci's in half while 8 teeth were coming in!)
- LOVES to color--I mean it's an all day activity.
-LOVES to dance!! This girl has got some rhythm!
-She loves to IMO chat with her cousins and Nana and Grandpa!
-She likes to try to do all of the reading in her books now
-Her favorite animal is still a cat--not just any cat, our cat Oscar.
-Puzzles have been a big like for her lately
-Talking is what she does all day and loves to share her opinion
-To take the backs off the remote controls( the battery as well)
-Loving on her baby sister... maybe a little too much sometimes :)

Dislikes:
- Changing diapers/clothes--This has a love/hate relationship where sometimes she will just lay down and do it and other days she will kick/scream/cry the whole time while doing it
- Getting out of the bath.  If she could stay in there all day just playing with the water, I am sure she would.
- Being told "no". She now says it back with a finger wave included at times. at-ti-tude.
-When the dogs bark she immediately says "hush" to them
-Wipe her face and get out any boogers
-Shots


Teeth: 16 teeth. WOW I am so glad we have gotten through the worst part of all of this teething mess. It's been a tough road these last couple of months but they have finally all broken through the gums at least and now we are waiting for them to come in.

Diapers: Size 4.  She is almost getting too big for them which I am hoping that means that we move up to the next step pretty soon and start to potty train :)

Language:
Signing- More, sad, happy, dirty, hot, cold, all done, milk, thank you, please (we are currently working on colors and feelings with signs)
Words- Wow, this amazes me as well because she will pretty much be talking all day while she is awake. She loves to repeat back what you say, and when you are telling a story about something she said or did she likes to do it again to show you (cutest thing ever). She has increased her vocabulary a lot in 6 months and we can't wait to see what the next 6 months brings!
Understanding- She understands most things that are told to her and she will say "huh" when she doesn't (Shane and I are definitely guilty of this)

Morning crazy hair 

Looking so grown up!

Eating on top of the table..typical

Counting time

So adorable!

Thinking her sisters chair is hers as well

Standing up in the shopping cart..oh toddler-hood

This is Rochelle's as well. She thinks it's hilarious 

mommy's glasses

Eating...typical :)

These months have been amazing with all of the learning and growing she has done and we can't wait to see how much she grows between now and turning 2!

Rochelle is one month old!!

  Wow, a LOT has gone on in the short month that Rochelle has been here! It seems like she is months older then she really is, but I think that's just my lack of sleep feeling that way.  It's crazy because for a moment (while starting this blog) I had a peaceful quiet noise with both kids asleep and daddy taking a nap as well, but I was quickly reminded by Brielle that quietness doesn't last long in this household.
  Since coming home from the hospital, I have been so busy with making appointments (we finally had her first out of hospital appointment with her new pediatrician which was nice), I still need to make an appointment for her to go see the eye doctor, cardiologist, GI specialist, and make calls to home health next week and order more supplies from her supply company.  I stay busy, but I am SO glad Shane has been able to be here with me during this month and really help me stay grounded and pray with me during the good times, and the bad.  (thank you so much to my mom as well, you are amazing!!)
  God has blessed us with a great hospice agency near our small town to help kind of get more settled at home and help with anything Rochelle may need at this time.  She is doing great by the way, she still has labored breathing, but has not shown us any major scares and has adjusted to being at home quite well.  She continues to be on her two medications (lasix, and prevacid) which we give once a day, and continues to be on oxygen at 0.25L per nasal cannula, and has her NG tube in for feedings which her doctor increased to 50ml/hr every 3 hours. yay! (she was showing me signs of more hunger in between feedings so I asked if we could increase it by a small amount and she has tolerated it great!)
 By continuing tradition I will write her stats on here, just like I did with Brielle.


Height: 20 inches (yay, she grew an inch already)

Weight: 6 pounds 15 oz.

Likes:
-Food (she definitely knows when it's time to eat!) She gets breastmilk and formula (elecare) every feeding .
-Being held
-Sleeping all day (what it feels like at least), and up all night
-Being swaddled
-Sleeping on her side (she will sleep on her back but it won't last long)
-Car rides (she will wake up if we are stopped too long at light, but will soon go back to sleep)
-Music


Dislikes:
-Being woken up (for feedings, diaper changes, etc)
-Being moved from one position to the other when she's comfortable
-Being naked


Language:
-Crying is pretty much her only form of language at this point.  When she was first born she had such a soft little cry.  Now she definitely gets her point across when she's upset--she still will desat (drop her oxygen levels) when she is so upset she forgets to breathe while crying, but they go back to her normal right away.

Here are a few cute pictures from her first month!

YAY! A huge celebration :)

sisterly love

daddy love

playing on her playmat

Picture time

We love her so much

Our precious baby

gorgeous baby

Enjoying some outside sun for a bit

Thanksgiving day

Carseat test--passed with flying colors, yay!

Rockin' an outfit by Auntie Adriane

Very tired but all worth it

Her paci looks the half the size of her face! :)

Bow time!

Under the Bilirubin light

Daddy love.

We are so excited we have been able to both be off work and spend every day with our baby girl.  We love our girls so much!  Thank you so much for all of the continued prayers for our baby Rochelle :)

Surviving the NICU

  There are no words to express how happy we all are to be home, safe and sound.  Not only do the past three weeks seem like such a blur but it took a lot out of everyone (especially Rochelle) to get home. I am going to give everyone a few tips that helped me get through each and every day visiting Rochelle in the Neonatal Intensive Care Unit.
 * Know the hours the nurses work, so you can plan your day based on that.  The nurses worked 12 hour shifts and would do report to the next shift about 30 mins before their shift would end and sometimes it would take a good hour to give report depending on the how many patients that nurse had that shift and so I would always stay late and get there early so that Rochelle would never be left alone during shift report (the babies would cry and cry I just wish I could hold all of them during that hour in the morning and a night).
 * Know the times the doctors do rounds.  Mine always came bright and early in the morning and we were always there waiting to know what the lab results, x ray results (when they were taken), and what the daily plan of care would be and any changes I would like made (to run certain labs, change the rate of the feeding, start a new medication if needed, etc) and the doctors make bedside rounds so that you could always talk to them one on one.
 * If you do not understand the any procedure being done on your child, look it up and make sure you compare the benefits vs risks to doing the procedure.  I know doctors and nurses may think they know what's best for your baby but ultimately the parents always know what's best.  (Also any labs that are abnormal or out of range always make sure you understand what that means if it's high or low and what that could do to your baby--also know what the treatment is going to be to get the lab back to normal range)
 * Learn anything and everything you can for taking care of your baby for the hopes that when you get to leave you are fully prepared and ready for anything that may come your way. Make sure you also have a plan set up if something were to go wrong and quick, what steps you would take in getting your child the best help, the fastest.
 * Do not trust that when you leave, the nurse will take the best care of your baby, (As many of you know, I am an RN so I don't trust many nurses easily) and if you feel like your baby is not going to get the care that you would like you should stay with your child as long as you physically can before leaving for a couple of hours for shut-eye before returning.
 * Learn what time things are done (when the vitals are taken, when labs are drawn and how long it takes to get those results back, when assessments are done and what the changes are for your baby, etc) it was very important for me to stay on top of as many things as possible.  (my Type A personality definitely took over during this whole ordeal)
 * LOVE on your baby.  NICU babies don't get held and loved on enough by the staff, the parents are most important people that babies to be able to fight harder every day and do skin to skin as much as possible.  Each baby that grows inside of you hears your voice for 9 and 1/2 months and let me tell you, that's the voice they want to hear at the end of the day.  It was so hard for a couple of days when Rochelle was under the Bilirubin light (for her jaundice) and not being able to hold her, because we do 3/4 of the day unless the nurses needed to do something but other than that we loved on her continuously.
 * Document everything in a notebook.  These are the memories you will never get back and being sleep deprived and low on energy majority of the days, it was so nice to write down all of the important things that happened with Rochelle and document any major changes that occurred.
 * Most of all enjoy.every.moment.  Your baby is there because he/she needs to be.  It's usually not for an extended amount of time unless your baby is born very early or they need a lot of surgeries.  Get used to change as well, because nothing will ever be the same the next day. God protects his children, ALL of them and just know that prayers work wonders and He listens.

Getting to go home!!  20 days old

First day in the NICU.

Let there be light

  You know that phrase, "the light at the end of the tunnel"? Well, we have almost made it to the light, by having just a few more things for Rochelle to pass and be able to handle and we should be going home tomorrow!! yay!! Just in time to cherish every single thing we are so thankful for this year for Thanksgiving with our family. We cannot wait! (Update--She did pass her car seat test, so now we are just waiting on a couple more things and we will be FINALLY going home today!) :)
  I will update you all on how things are going, and why we are able to leave way earlier than expected. After pushing for a plan of care meeting for baby Rochelle, the doctors finally made it happen.  It was our primary doctor, the palliative care doctor, the case manager and the charge nurse in the meeting with Shane, my mom, and myself.  I wasn't nervous at all coming into the meeting, I was just ready to get the ball moving on what was going to happen next since she had fought off her terrible infection already and was doing much better.
  The meeting started off with an introduction from everyone, and kind of a little brief overview of what was going to be discussed and of course the questions came about my pregnancy and when did I find out we were having a T13 baby and what our decisions/thoughts were back then.  Then the palliative care doctor started off by saying we will go over her major organs affected, discuss each option and then decide on what's going to be the plan of care for Rochelle.  I thought that was a pretty good idea so that we could all be on the same page when it came to her future care.
  First she started off with feeding, stating that there is a very slim chance that Rochelle will ever be able to drink out of a bottle (she is not too good at the suck, swallow, breathe method and has severe reflux), and that we need to discuss further options of feeding.  She started with the NG tube (which is what she has been having in the hospital), where a small feeding tube gets inserted through the nasal cavity down into the stomach. This is the hardest method to go home to just because there is a lot involved in the maintaining as the child grows and starts to pull at everything. (I initially said NO because I knew it would be a lot of work for Shane and my mom to learn how to do).  Then she spoke about the G tube surgery and a feeding tube is surgically placed inside the stomach to directly feed into which would have been the best option, but that requires for her to go under surgery and the doctors didn't think with her lungs being so small that she would do well tolerating surgery.  Then they said the third option was to do nothing and go home with just bottle feeds and not having any tube of tube feedings at all.  She also has intestinal malrotation (you can learn more about it here, which could affect her later on if it develops a volvulus and cuts off circulation in her intestines and make her have immediate surgery or could possibly cause death.   So we chose to stick with what she currently has (the NG tube) and for Shane and my mom to learn as much as they could at the hospital before going home about how it all works.  Also to monitor the intestinal rotation  for now.
  Then we went to the heart (ASD, PDA) and discussed the treatment options.  They stated that with her PDA and ASD both getting smaller that we could just monitor and see what her body does on it's own and continue her on Lasix (a diuretic to remove the excess fluid from the body) and fluid restriction which we are currently doing with her feedings.  The second option would be to give medication such as ibuprofen or endomethicin to work directly to close the PDA but that medicine usually works best in the first two weeks of life and it's really hard on the baby's kidneys and they usually don't resort to doing it first in the NICU. The third option is surgery known as the PDA ligation (where they close off her PDA and she would never have to worry about it again).  Our choice was to have follow-ups with the cardiologist and monitor for any side effects from her heart.
  Last but not least, came her lungs.  She has small lungs, meaning she breathes shallow, fast, and without a whole lot of extra strength.  The main cause in children with small lungs is apnea where they stop breathing which could eventually lead to death.  The first option was to go home with no help, just her breathing room air.  Second option was for her to go home on a nasal cannula (which is what we have had her on in the hospital) but the doctor said it's more for her comfort and to have to work less to breathe but overall the oxygen is not doing much for her.  The third option would be CPAP (a breathing machine), and the fourth option would be a tracheostomy which is where a tube is inserted into the throat that can be used with a ventilator and help the breathing.  We chose to take her home with oxygen by nasal cannula and pulse oximeter machine so we can see what her levels at are at home.

With all this said, our options are chosen to bring her home with a feeding pump, oxygen concenrtrator and tanks. and a pulse oximetry monitor to see what her oxygen saturation levels are within her range and save any type of surgery until she gets stronger and could tolerate it.  It is such a blessing to be able to leave today, knowing that tomorrow and this weekend will be spent with family, love, and happiness.  I cannot wait for everyone to see Rochelle.

Happy Thanksgiving, please continue to keep us in your prayers as we start this new journey with her at home! :)

Ronald McDonald House

  When we first got transferred to the NICU here in San Antonio, we were thinking a temporary stay (maybe a few days) and be able to go home and live life as a family of four.  Well, when we found out on day 2 of being here, that we were going to be here for at least two weeks, we knew we had to somehow get a vehicle here in San Antonio for me to be able to use, and find a place to sleep.

  That's where the Ronald McDonald House comes in to play.  The nurses told us that we could stay at this house that is a mile and half away from the hospital for free while Rochelle is in the NICU.  We got a reference letter from the hospital and immediately went to the house.  The people there are SO sweet and caring and understand what each and every family is going through by not asking too many questions and signing a few papers, and giving us a room key that consists of two twin beds, and a bathroom in each room.  Uh-mazing!  You are able to have up to 4 people in each room, and if you have children they are able to stay with you as well.  They don't have cribs at the house we are at, but different locations may have some so Brielle is unable to stay with us at the house.  Though, when she comes to visit she has a blast in the kids playroom area and running around the two story huge house.  

  Not only do you have a room to sleep in (which is really all you need in life is a nice bed to get a few hours of shut eye without all the constant beeping machines and babies crying before returning back to the hospital), but they have volunteers that sign up to come cook meals for everyone in the house at least a few times a week and a nice, home-cooked hot meal is HEAVEN when you are running on little energy or hospital food while being with your baby.   I thank God so much for each and every volunteer that has taken their time to cook for us, speak words of encouragement, and just to really reach out to each and every one of us families.  

  If you are ever near a Ronald McDonald house and you would like to donate toys for the kids, your time to cook a special meal for everyone in the house, or you would like to speak words of encouragement to the families, I know all gestures would be greatly appreciated.  If you would like to find out more information on what events help donate to keep the houses running you can click on their home page here.  

  Thank you to all of the many volunteers that has made our stay here in San Antonio much better.

Riding in the toy car.  She loves it! 

Brushing teeth time! 

It's all about staying positive :) 

Cutie 

Loving the bean bag chair in the room! 

Rochelle's amazing story so far!

  To say this hasn't been a trying time for everyone involved, would be an understatement,  but God chose to put us (Shane and I) through this journey, and I know He will pull us through it.  With that said, I will try to summarize as much as possible, as so much has happened in the first week and a half of her life.  (Thank you SO much for all of the prayers, we greatly appreciate them!!)
 So everything went a little crazy as I had her at 4:08pm on 11/6/14, thinking we were going to be able to stay there a few days and go home and next thing you know, we were being transferred to Santa Rosa Christus Hospital in San Antonio by 9:30am the next morning.  I got very little sleep, just kept wanting to check on her in the nursery all that night, and pumping every 2-3 hours to try to start my milk production since she was only able to take IV fluids they were not able to give any of my milk at the time. The neurologist that was at my delivery, told me that it doesn't happen very often, but if I wanted to ride in the ambulance with Rochelle that I could as long as she was stable (and she was breathing on her own, and just had a replogle(a tube inserted to make sure the stomach is emptied since she was choking and not able to get it all out herseslf) and of course I said YES! I had just had a baby, but nothing was going to stop me, I felt great, showered the morning before, put on fresh clothes and we were off around 10:00AM heading from Victoria, Tx to San Antonio, Tx.

My mom does daily updates so I have compiled them in one blog post to keep everyone up to date.

11/07- Update-when born, Rochelle's oxygen level was low and her blood sugar was low so she was put on iv fluids and supplemental oxygen as needed. This morning, her blood gases are good, sugar levels stabilized, but they are worried about her intestinal tract. She sometimes gags on her own saliva and oxygen drops. Sheridan and baby Rochelle are in transport to San Antonio Santa Rosa children's hospital nicu. Original estimates are 2 week stay so I will be staying with Sheridan at Ronald McDonald house. Shane will stay home with brielle and will visit as often as possible. Mike will head back to Lockhart tonight.

11/08- Group update-Rochelle (R) slept well overnight. Lungs sounding better, not fully expanded yet, breathing on her own. Next system is to get bowels functioning normally and then will be able to start feeding by tube. Much more relaxed and comfortable today. Maintaining own body temperature. Yeah!

Rocky (my nickname for the little fighter) gave us a real fright earlier this afternoon. She was having a great day until at one point, she just stopped breathing briefly and even started turning blue. Nurse immediately intervened and all back to normal. This evening, she was breathing hard and then had her first meconium poop which is a great sign. Yeah!

11/09- Update-little Ro is doing well. She is peeing and pooping well. Her breathing is still too fast to start feedings yet. Dr. is monitoring blood gases, etc. Her levels are a little high or a little low but all is fine at this point.

Received diagnosis that little Ro has blood sepsis (not related to T13). Don't know cause. mothers are routinely tested before birth and Sheridan was negative. Anyway, little Ro is on antibiotics and hopefully it was caught in time. It does have a 10-30% mortality rate if not caught early.

11/10 update-breathing stable, visits by PT (physical therapy) and ST
(speech therapy). Rochelle (Rocky) will receive PT to help with muscle control and to help her gain strength. ST working on sucking strength. Rocky able to take a few drops of breast milk by mouth. Rest delivered by NG (nasal gastric) tube. She did well on first feeding. Skin still yellowish so starting on photo therapy (bright lights) for a few days. We can only touch her but not hold her during this time. Will receive antibiotics for 10 days for sepsis. Also getting LP (lumbar puncture/spinal tap) to rule out meningitis. Dr said she's a real fighter since she is doing well in spite of sepsis. Back to nickname Rocky. She's earned it already!

11/11-Little Ro is surprising the doctors and nurses by how well she is doing. Started bottle feeding with breast milk last night. The antibiotics are working. She should be off light therapytomorrow. Her fluid levels doing good. Digestive system was a little slow getting started but is doing well now. Amazing little girl!

By the way, her hair was shaved in case they needed to put in another IV but it had not been needed.

11/12 Update- continuing great news on baby Chelle (nickname given by sister Brielle). Feeding amounts have increased, neuroreflexes are better than expected, peeing and pooping well, reduced light therapy so she can be held for longer periods of time. She is still breathing a little fast at times. She will be getting some little gloves to help stretch out her hands and fingers. Sepsis bacteria is responding to antibiotics. Overall, excellent day!

11/13 update- we are in a 2 steps forward, one step back stage now. Drs are increasing her feedings but it is too difficult for her to suck, swallow, breathe that much food by bottle so she gets 2 bottles a day and rest by NG tube. Her ongoing fast breathing is likely due to her lungs not being fully expanded yet. She no longer needs photo therapy so she can be held and swaddled again. Shane is with Sheridan and Rochelle now and she loves listening to daddy's voice. Drs are concerned that she may need heart surgery if the PDA (a hole in the heart that typically closes after birth) doesn't close on its own. She may be looking at many more weeks in hospital if she needs heart surgery. We'll keep you all updated.

11/14-Good day today! Rochelle is off the photo therapy lights. She no longer needs IVs. The nurses were having difficulties starting new IVs, it took 10 tries on the last one. Poor baby. The amount of each feeding has increased to 45 ml per 3 hours. Normal babies eat about 30ml(1 oz)-60 ml (2 oz) every 3 hrs. She can now be clothed and swaddled and held. She loves being in her daddy's arms! Waiting results of lung x-rays. Will have echo cardiogram Monday to look at heart.

11/15-After losing weight the first few days, she has regained and now surpassed her birth weight. Drs are continuing to increase the amount of food in each feeding. She seems to be having some difficulties handling the increased volume so we'll discuss it with the doctors. As is common for babies with heart problems, she has started retaining fluid so she's on a diuretic. She has maintained her body temperature long enough to be moved from the incubator into a crib. There are some moments when she scares us and stops breathing briefly but we think it's related to increased volume of food. The rest of the time she is peaceful and able to sleep on her own or while held. The IVs have been removed and she only has 3 more days of antibiotics. She is doing amazingly well!

11/16- Rochelle had a good night.  Her oxygen saturations levels are more stable today but now her heart rate increases at times.  She's tolerating the increased food volume well.Tomorrow is the big day for the echo to see how her heart is doing.  We are hoping since the doctor couldn't hear the murmur from the PDA that it's closed.  She took 4ml by bottle today, which is the first time she showed any interest in it again, so that's great!

Well I know this is long, but this is the only way I am surviving, is writing everything down (literally taking my nursing notes each day, to try to keep up with all of this myself.)  Thank you to all of our family and friends who have made the extra effort to stop by to support us and Rochelle, and those who have donated financially to help make ends meet.  This is a trying time, but I know God is good and we will be able to take our precious angel home soon.

Loving her big girl bed! 11/17/14

11/15/14

11/13/14

11/9/14

11/7/14 the morning we left to go to San Antonio from Victoria!