Sunday, November 30, 2014

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.

Wednesday, November 26, 2014

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! :)

Sunday, November 23, 2014

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! 

Monday, November 17, 2014

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!

Saturday, November 8, 2014

Welcome to the world Rochelle!!

  So as I write this post of Rochelle's birth let me just start by saying it was the most exhilarating experience of my life, and I wouldn't change a single thing.
  Shane and I were so excited we got no sleep before our appointment Thursday morning at 9:00am knowing that if I had dilated any more then a 4 that my doctor would send me over to Citizens Hospital to have my baby girl and induce my labor, even if I wasn't having a good labor pattern because he knows my wishes of not wanting to have my baby in my home town! My parents came that morning to our house to watch Brielle, just in case we were sent to the hospital right after our appointment, which we really prayed that, that was the case.
  As we headed to the appointment, we said a prayer for a good nurse and a great delivery of our healthy baby girl if today was going to be the day that we would deliver.  We arrived and of course got my weight and I gave a urine sample and then waited to see the doctor.  During my assessment he said I measured 5cm dilated and 50% effaced and he would send me over to deliver.  We got so excited we called my mom and told them the great news and when to bring Brielle to the hospital.  My best friend Adriane also made her way to the hospital and we were good to go!
  Upon arrival a not so nice nurse told me that they had no rooms and was complaining about me coming in with no contractions to be induced and I was not happy to be hearing that, considering I knew that I would most likely be in and out since I was already a 5!  When my nurse (a nurse friend that I graduated RN school with) came in, I was so excited and she was definitely in for the ride of her life :)
  I arrived to the hospital around 10am and did not get started on Pitocin (a medication used to induce labor and contractions) until 1:30pm.  We (me, my doctor, shane, the nurse) all agreed that I would be intermittently monitored so I could walk around during my labor and really breathe and find new positions during contractions since I wanted to be all natural. I went from a 5cm-7cm in an hour after being on the medicine and once she decided to kick up the pitocin by 2units I was REALLY feeling the contractions and within an hour went from a 7cm to an 8cm where my water broke and I started feeling the contractions literally every minute and my mom helped me sit in the bath water for relaxation purposes and that did not work because all I could tell my mom since I was in so much pain and screaming "ouch", "Jesus" and "tell the nurse to get me an EPIDURAL" even though I knew in my head I was really just ready to push baby girl out.  At this time, my mom got me comfortable on my bed and this Neurologist came in to talk to us about Rochelle and what he was going to look for and I said to him "can you not see I'm having a contraction" and asked him to please wait until I was done.
  So much for the waiting, because literally my nurse checked me and I was a 10cm fully dilated and fully effaced at 4:03pm, my doctor wasn't even there and my nurse was calling everyone that was suppose to be in there for delivery.  Well at 4:08pm I felt the BIGGEST overwhelming rush come over my body and I said I have to push NOW, I was laying on my side in bed, and I turned over to my back, looked at Shane who was still rubbing my back and luckily a nurse came running in the room, grabbed a towel and I pushed Rochelle out in one push while she caught her in a towel without any time to put on gloves or gown up and she was such a blessing in disguise.  EVERYONE came running into the room and started to assess her right away, her oxygen was so low that they applied 50% supplemental oxygen right away and did vitals, took pics with daddy and gave us a little bonding time (Brielle LOVED her right away!!) until they whisked her away to the NICU/nursery to be monitored more thoroughly and see kind of all what's going on.  I soon delivered the placenta and was ready to get up and showered right after birth.
  She does show apparent signs of Trisomy 13 (labored breathing, does have a hole in the heart so their is a soft murmur, and contracted hands (which we are hoping since is able to open them and extend them that therapy can really work with her on that), round cheeks, big nose, and a bright little pimple like spot on the top of head, and low muscle tone) so we are currently in San Antonio at Santa Rosa Christus Hospital getting the best care and treatment possible for our baby girl and doing whatever we can to give her the best life possible.
 Thank you for all the continued prayers, this is going to be a hard time with our family, but we know God doesn't give us anything we can't handle and she is definitely a fighter and we can't wait to fight with her on this journey!
Family of four!! 



6 pounds 5 ounces,  19 inches long

Proud grandparents!! 

Sister love! 

Holding hands :) 

Auntie lovin'

Newborn sticker on my precious maternity shirts blanket :) 


Tuesday, November 4, 2014

Savoring The Sweetness

  With our journey as a family of three is coming to an end pretty soon, I have really tried to make more of an effort and savor all of the sweet moments that we have been having this past week and a half of me being off work and just staying at home with Brielle.
   Usually when I am working weekends, Shane is unable to make any overtime due to my crazy work schedule and just how tired I am after work, but this past weekend with me being home he actually got called in I believe 2 or 3 times to make a little overtime! (Especially with me not working these next couple of months anything helps!)
  This past Sunday was the first Sunday that all three of us got to church on time (due to the time change, Brielle got her full hour morning nap in before service and we got her ready so we weren't late), and got to enjoy the full service which was amazing.  Our Pastor preached such a great sermon on "how is your faith?" It was so good to be reminded that faith recognizes God and He is our refuge and to be reminded that no matter what we are going through in our life, their is always a door open with God and you can speak to Him with anything that is on your heart.  The church also prayed over baby Rochelle and it was so nice to see my sister-in-law go up in front of everyone, not knowing that I was going to do the same and ask our family and friends for prayers and goodness over this baby.  Our hearts were so full to see such a selfless act, and thank God that we have such good family and friends that have been with us on this beautiful journey.  After service was over, we went to enjoy a late lunch with my sister in law and her family (which we haven't done in a very long time)  and even though Brielle was tired and ready for her afternoon nap it was nice just to spend quality time together.
  Yesterday, Brielle kept giving us kisses like crazy and saying "Aiden" and "Emma" for her cousins which she usually sees every week when I am working in Austin and since she hasn't seen them we decided to make a little day trip surprise to Lockhart to visit my parents and for her to spend some time with her cousins before her baby sister arrives! :) Brielle was beyond excited when she got to see them giving them tons of hugs and kisses and I knew I had made the right choice to make that trip.  I don't know when the next time that all three will be able to play together again, but I know they all had so much fun yesterday.
   These next couple of days as we wait for our next appointment Shane and I still have to clean the carpets in the entire house and do some last minute stocking up on some major supplies that we use that hopefully will prevent us from having to go to the grocery store for at least a week or two after baby girl gets home and then we should be ready to go!  Can't wait to show the world our newest addition to the family :)

Where has my little girl gone?? 

Trampoline fun at Emma' daycare 

All three cousins playing puzzles. 

Brielle loving this slide! 

Emma in front of her daycare

Aiden just enjoying the ride 

Sitting so cute together coloring 

Riding on daddy's back (new favorite thing) 

Me and Andrea

Brielle,  rhyleigh, pj

Saying "cheese"  before church 

Brielle and rhyleigh  :) 


Saturday, November 1, 2014

37 week check-up :)

Baby: 37 weeks and 5 days! Baby girl is now full term but I really don't consider babies full term until 39 weeks so the lungs and the brain can keep growing and forming.   She should also be weighing a little more than 6 pounds so that would be great! Still moving around a lot which is great and her heart rate at the appointment was 144bpm.  My doctor said if she has not came on her own by next week he will send me to the hospital to have her! We might be meeting baby Rochelle VERY soon!

Mommy: Feeling a lot of pressure lately, but still no cramping, contractions (that are painful), or vaginal bleeding or my water breaking so labor has not yet started yet! This has been such a relaxing week to spend with Brielle and Shane and just enjoy these last couple of weeks of being a family of three. The doctor stated that I am almost dilated to a 4 and will most likely go into good labor soon, so we shall see! I am definitely doing more stretches/mild workouts to try to build some muscle back up to do an all natural labor! (Yes, that is my goal--God may have other plans and we completely ok with whatever it will take to get Rochelle out healthy and safe).

Daddy: We got our family pictures back in, so daddy has been hard at work putting up all the new wall decor which is so cute and cozy, can't wait to see it when it's all done! We both read an article about how adults overuse the word "no" and "don't" which is definitely Shane and I, so we are really working on saying other words instead since that is a common word we hear from our 16 month old right now!

Cravings: Honestly not much, yes today was Halloween and we did indulge on some candy but other then that not much at all.

Brielle: Definitely was NOT a huge fan of Halloween with everyone dressing up and wearing masks (she is terrified of them) so we were holding her the entire time trick-or-treating.  Other then that, this past week we have been practicing with numbers, colors, and animals.  She used to LOVE cows, until she heard she heard our friends cow up close and personal so we are having to work her way back to loving them!  We are so glad that on our daily walks we see goats, horses, donkeys, chickens, and cows that we get to show her what she is learning in the books.  So cool!

Here are a few pics from this last week! :)
Happy Halloween,  she could barely stand still (as you can tell by her feet lol!) 

Loves to play peek-a-boo

Where has time gone?? 
After the appointment I finally got to enjoy some mommy pampering time and get my eyebrows done and a pedicure while Shane watched Brielle at the mall and it was so nice to have that time to myself!  It's going to be a lot harder to come by pretty soon!  :)