My 3 year old Princess!

In the midst of all the Jefferson craziness, Stella Rae turned 3!  She had been wanting a Snow White birthday party and begged for it every chance she got.

   I wanted her to feel special and put the spotlight on her, instead of Jefferson.  She did not get hardly, if any, attention from her parents while Jefferson was in the NICU, so we wanted to go out a little for her party.  So we hired Snow White to come over and entertain the girls.  There is a company locally called Enchanted Princess Parties where these women dress up as Disney Princesses and play the part of the princess they are dressed as.  They have big poofy wire dresses, wigs that are the exact hair do, voice is the same and their hands and arms are just like how the princesses hold and wave them in the movies.  We invited a couple friends and cousins and they all came dressed in their princess dresses!  There were 7 girls there and watching their faces light up when Snow White AND Cinderella walked into the door was priceless!  They entertained the girls with mini make overs, glitter tattoos, magic tricks, played games, and painted nails.  It was worth every penny to have them entertain the girls! 

    I also did a Mining dig in sawdust where the girls dug in the sawdust to find all kinds if jems, necklaces, bracelets, rings and candy.  The girls loved it and got to take some fun jewelry home.  

Here are a few pictures of the fun party. 

(Part of Cinderellas beautiful dress)

My adorable little Birthday Princess!

The princess cake I made turned out pretty cute, and I made cute red bow headbands for each of the girls. 

I am so happy she loved it and had a blast with her friends.  Worth every penny to see her huge smile! 

Happy 3rd Birthday Princess Stella Rae!

Happy 1 Month Little Love

(Cute pecan shaped like a heart) 

Well my little love is 1 month old!  He had his first Cardiologist visit yesterday.  Everything looks great!  His lungs are improving and the Dr Pinto suspects he will no longer need oxygen with in the next month, YAY!! He has been sating high lately and we usually have to pull his nasal cannula away from his face 98% of the time, or shut off the oxygen all together to get him to come down to normal. He weighed in at 8lbs 11oz and was 21" long.  This is amazing for a heart baby!  Typically kids with heart defects usually slows down their growth, but he just keeps on chugging! 

   He is doing so great and is such an amazing baby.  I wanted to go over a few of my favorite things that I love about my handsome dude! 

I love his hair!!  

Especially after a bath! 

I love his cute little folded over ears 

I love his nubby little fingers! 

I Love that he sleeps a good 5+ hours straight each night! 

I love his little head bob he does when he breathes.  Although it kills me to see him work so hard just to breathe, it's pretty cute. 

I love his waddle, and I just love to kiss it!

I love his little rolls 

I love his adorable almond shaped eyes.  

He is such an angel and I just keep falling in love with him every second I get to snuggle him!  My kids are pretty amazing!! 

Photo Shoot!

My wonderful sister came over and took to capture my sweet boys on film (well digitally that is).

Here he is!!

Momma Bear, Beware!!

  (Just a heads up, this is just one big rant.. So read if you dare)
    I have always felt a little awkward when I tell people what to do.  (Insert sly comment here)  But I really do, I do not feel like I have the right to tell people what to do, and I suck at standing up for myself.  I guess I am a little hesitant because I do not want any confrontation or hurting of feelings.  So as a resort, I have just been hibernating since we brought Jefferson home.  I know that is what you are suppose to do when you have a new baby, but I don't even really want guests over to my house.  I didn't even have the guts to tell a little girl that she could not come to my daughters birthday party because she had gotten sick on the way over, my mom had to be the one to tell her.  And I went into the other room and bawled my eyes out.  I felt horrible for that.  My momma bear instincts are more like momma cub.
   Over Thanksgiving week there was a ton of my family out here for the holiday that stayed with my grandparents.  My oldest sister brought her family up from Colorado, my mom flew out, and my brother and his fiance came down from Idaho to spend the holiday with our family.  The week prior my grandparents were sick, and still recovering when people started coming in.  It had been agreed that Jefferson was staying home no matter what for Thanksgiving and one of us would go take Stella over to eat turkey dinner with the family.  But I did not want any of us to spend much time over there because there were several sick people.  It makes me sick to my stomach just thinking about one of us getting sick and then possibly giving it to Jefferson.  Especially Stella, because she cannot control her sneezes and does not know to cover her mouth.  I am the one with the terrible immune system though, so I was most afraid of me getting sick, especially since I have the most contact with Jefferson.
    So here is what I am trying to get at here, it started out in the NICU.  We did not allow any family members in the NICU other than grandparents, and great grandparents.  Our siblings and any other family or friends were not allowed to come see him.  No amount of bribery would have enticed us enough to let more people come visit.  You know how it is, some people just are not very considerate when it comes to being sick and seeing babies.  They just visit any ways even though they know they are not feeling well.  So I wanted to create as less exposure as possible for my baby, as well as all of the other babies in the NICU.  So that is why we limited it, it was not just our angel we were trying to protect. For kids with heart defects and Down syndrome, it is much harder for them to fight off colds and are more likely to end up in the hospital, even with the common cold. 
    Then we came home, and the fun began.  We were bombarded with texts and phone calls of people wanting to come over, some were from the Relief Society wanting to bring dinner and gifts, but this scared me to DEATH!  We had just got home and I did not want a bunch of people in my house.  I said 'ok' to a couple meals, even though I really have a thick skull and don't really like to be helped.  I just like being independent.  I was just hoping that it would have just been the one person coming to drop by meals, but I usually had 2-3 people visiting, and wanting to see the baby, every time they came to drop off meals.  Don't get me wrong, I am so grateful for our amazing ward members for helping us out.  But people in my house gives me anxiety!  (I'm just being honest here)  So when there are more than 2 extra people in my house, I do not have the heart (balls really) to either; just talk to them at the door and not let them in, or to tell them to leave.   I also have a box of masks and hand sanitizer, and rarely have I asked a visitor to wear one.
    I do not care that I want to be a hermit for the next 4 months till Spring gets here.  I feel terrible, but I do not even want Stella going to Nursery because I am afraid of what she might bring back.  I do not even want her going to play with cousins, because I am afraid of what she might get.  I don't really want people coming over to my house, because I am afraid of what they might bring in.  I know this is unrealistic but its just how I feel.  But I am sorry, this is my way of being a Momma Bear.  I do not have the guts to tell you, 'are you sick?', or for you to wear a mask, or wash your hands.  My way of just keeping Jefferson in the back room away from any potential visitors, and keeping him isolated, is just so much easier for me.  Less chance of hurting someones feelings by telling them they have to leave.  So, again, I am sorry.  I know I need to be more upfront and firm when it comes to people visiting, but I don't have the guts.  Like I said, I am more of a Momma Cub instead of a Momma Bear.
   So then here are a set of rules I would like to follow from now on.  I will try to inform everyone ahead of time if you plan on visiting.
- If you are sick, please do not bother coming over, not even a tickle of the throat or a runny nose.  I don't want any of it here.
- Please only 2 people here at a time.  I have a tiny house and I do not like it cram packed.
- You must wash your hands upon arrival, AND before holding Jefferson.
- DO NOT touch Jefferson's face or hands at all.  Please keep your hand on the back of his head and that is it.  90% of germs are contracted through your eyes, ears and mouth (according to my pediatrician)
- Please limit your visit to 10-15 minutes maximum
- This should be common sense, but do not kiss him.
- No kids please, only adults.  Most kids do not know when they are getting sick.

Please be courteous and and help me keep my angel healthy and out of the hospital! 

Best of Friends!

My mom sent this to me and I couldn't stop crying after I saw this. 

  This is Stella already and I know Jefferson and Stella are going to be the best of friends, just like these two cuties. 

http://www.godvine.com/You-Need-to-Hear-What-a-Little-Girl-Says-About-Her-Brother-With-Down-Syndrome-4188.html

A couple nights ago I was in the bathroom with Stella painting her fingernails and Jefferson was in the other room crying because he was hungry.  Stella said "baby Jefferson is crying for me to hold him."  She wants to help me with everything, feeding him, changing his diaper, holding him, and giving him his binkie.  She is such a big helper and is going to be the best big sister! 

Our Perfect Angel!

   This going to be an emotional post for me.  I have had many discussions and good crying sessions the past couple of weeks over this.  Don't take this the wrong way, the crying sessions have been very spiritual and humbling, not negative.  

   Well as you have probably read in a previous post, that Jeffersons heart defect is common with Trisomy 21 and he had a 25-50% chance of having it.  We didn't care to do any testing prenataly because it was not going to change how we felt about our baby boy.  We were going to raise him and love him to pieces.  

   The day after Jefferson was born they drew his blood for the genetics testing that would take, the longest 3 days of our lives!  It actually ended up taking 4 days, and like I have said I have no patience, so it was eating at us those long 4 days.  

   Over the 1st 4 days of Jeffersons life, we fell completely head over heels in love with this little guy.  He is so special in every way it is so hard to describe.  He is so tough and hardly ever cries.  Even when he gets poked for more labs, or before every feeding to test his glucose he hardly ever cries.  He is the biggest sweet heart.  I was always worried that Stella being an angel that her little brother had a lot to live up to.  But right now, he has her beat!  

    

   I knew there was a possibility.  I knew there was that slight chance that Jefferson would have Down Syndrome.  His ultrasounds never really showed any signs, other than his body was a few weeks behind schedule, compared to his head.  I didn't get to hold Jefferson till several hours after he wa born.  He was whisked away to the NICU to get on oxygen right after he was born.  After the epidural finally wore off I was able to get into a wheel chair to see my baby.  He was placed in my arms and he opened his eyes to look at me and it hit me.  That possibility of having Down Syndrome just became real.  You could see it in his eyes.  Then the mind game played tricks on me for the next 4 days.  Could he, or could he not have that extra chromosome? 

   I went back to my room and cried.  My stupid mind kept thinking of all of the things he wouldn't be able to do.  I felt like it was my fault.  I felt like a failure because I didn't give Andrew a son that could continue on the Warwood name.  He wouldn't be able to have kids.  He would take longer to walk, talk, run, eat, etc.  After I finally was able to talk to Drew about it he was able to comfort me and help me to understand that he is still our son.  He is one of Heavenly Fathers angels that he sent us because he trusted us enough to raise him.  He is perfect in every way.  He may have an extra chromosome, but he is the most special little guy that we get to have for eternity.  He is our son and we get to raise him and love him to pieces.  

   After that little crying fit, it didn't matter any more.  Every time I held him I fell more deeply in love with him. How could you not love this adorable face? 

Several days later, our NNP came to tell us that Jefferson tested positive for Trisomy 21.  I think he was expecting us to have some sort of reaction.  We had already had this discussion a couple days before so it was not a shock for us.  We knew that the outcome of the test was not going to change anything for us.  He is our son and we love him no matter what.  He is so special and is straight from heaven.  So please, when I say "he has Down Syndrome" do not reply to me "I'm sorry" because I am not sorry.  I feel privileged to be able to raise him.  Every trial and hardship I had previously does not matter because he is absolutely perfect and we would not have him any other way! 

Day 9 in the NICU

November 21, 2013

They day has finally come!  It was a really busy day, but everything was heading in the right direction for us to go home!  Jefferson did great last night with us and had a few more tests to get done before we could leave.  He had his hearing test done, passed that with flying colors, whew!  He had another echo done on his heart this morning.  Cardiologists looked at it and said it looked really good.  His PDA was considerably smaller than the first echo - which is that much closer to closing up.  He had his car seat test, and passed that as well!  Apria also came and swapped out the pulse oximeter and it seems to be working this time.  

  It took most the morning to get all the other tests done, so by 2pm or so we were signing all the discharge paperwork and gathering all of our belongings and taking them to the car.  By about 3:30pm, we were carrying Jefferson out the door! 

   I really didn't think this day would ever come.  It has been the longest, and hardest 9 days of my life.  With all the ups and downs I am surprised I wasn't hospitalized for a heart attack of something from all the anxiety.  I don't know how other parents do it with their couple pound kids that are in there for months at a time.  That would be unbelievably hard!  I shouldn't complain, but it is so hard to see your brand new baby hooked up to all the monitors, being poked MANY times a day, being too tired to even eat, and feeling so helpless because there really isn't anything you can do for him, except be patient.  And we all know I lack any form of patience.  But after countless prayers, a couple priesthood blessings, Heavenly Father listened and answered our prayers.  We know he was suppose to be in the NICU  for a reason.  And thank heavens for the talented nurses and Drs that took such great care of our precious angel!  He can finally go home to his family, where he belongs! 

Day 8 in the NICU

November 20, 2013

Everything is on track to get to go home tomorrow!  He got an EKG done this morning and everything seems to be normal- considering his CHD.  They changed his oxygen from blended (oxygen and room air) to 100% oxygen, because he can go home on that.  His feeding tube was pulled out, YAY!!  He failed the room air challenge, which was expected.  But that just means we needed to keep him on oxygen at home too. 

   Apria was contacted to bring us our oxygen tank and pulse oximeter.  They came about 5pm and showed us how to work all the equipment.  All the beeping and noise from both the hospitals machine and out new pulse ox was a little overwhelming.  Anxiety was kicking in and I was kind if freaking out.  

   The NICU has these rooms with bed and showers that they mainly use for babies that are going home so that the parents can room in with their baby and basically have a dry run, with nurses on standby if needed.  So we had the room scheduled for tonight so we could practice with all the cords and monitors.    

   We got all settled into our room and Jefferson hooked up to both our monitor (that we will be taking home) and the hospitals monitor, to compare.  We ended up turning off our monitor after a couple hours because it kept saying system error.  So we will just have then bring us a new one in the morning.  

   Jefferson is a great sleeper.  He just wakes up to eat and then goes right back to sleep.  It was the beeping of the monitor that kept us up most of the night.  Every time it beeped, it startled us and woke us up.  It would just take time to get use to it.  But we did pretty good working together as a team last night.  I think we can handle this! 

Day 7 in the NICU

November 19, 2013

 Jefferson is 1 week old today!! 

  What a difference a day, and lots of prayers can do!  Jefferson has done a complete 180 since yesterday.  Feedings through the night were basically all done via a bottle. He had one feeding through his tube at 9pm and then he was awake enough to eat for all the rest of his feedings!  This is a HUGE step! I nursed him when I got there at 6am and he are like a champ! He was so much more awake and alert than I had ever seen him. Let's just hope he keeps it up.  

    The cardiologist (a different one than we saw the first day) came and saw Jefferson to check him since they turned down his oxygen. They had done another X-ray this morning to check the fluid in his lungs.  He looked over the pictures and the fluid was GONE!!  Come to find out, Jefferson being on the 1liter of oxygen was making him have pulmonary hypertension, so it was making his heart work even harder than it already was, making him really tired. And it was causing the fluid in his lungs too. So just turning down his oxygen to a 1/2 liter made a dramatic change for him.  Thank goodness a different cardiologist came and saw Jefferson, or we may still be in the same situation and Jefferson would not be getting any better. 

   If he keeps doing better, the feeding tube could be pulled tomorrow, and he could possibly go home on Thursday !!  They also changed him back to ad lib feeding, where they just feed him on his schedule instead of waking him up to feed him every 3 hours.  Just another step forward, thank goodness!

   Thank all of you for your love, support, and your prayers.  They definitely have been felt, and prayers are being answered.  Thank you thank you!!

Day 6 in the NICU

November 18, 2013

Shout out to my little brother, Happy Birthday!!

  Jefferson weighed in at 7lbs 13oz today! I love my little chunky monkey! 

It has been another roller coaster of a day.  It started off with getting poked again for more labs, and then he had to have a chest X-ray.  His poor left foot is black and blue from all the poking.  The other foot has the oximeter on it so it hasn't been poked as much.  They had suspected fluid in his lungs from the oxygen, so they wanted a X-ray to check.  Sure enough his sat levels were too high and were flooding his lungs being one of the reasons he is so tired all the time. 

   After several days of asking, Cardiology finally crossed the dreaded bridge to come see Jefferson.  (I say this because it's not like the Drs have to go outside or anything, they just have to walk to the building next door to see us and for some reason, that is just too hard for them).  I haven't seen a Cardiologist since his first day of life.  I was getting a little perturbed about it and I think the Nurses and Nurse practitioners were starting to realize how pissed I was.  How do you know how your patient is doing without physically seeing them.  The Drs and nurses here in the NICU have basically been waiting to see what cardiology says before doing anything. So frustrating!  

   Any ways, a different Cardioligist came and saw Jefferson today.  He suggested turning down his oxygen to 1/2 a liter (of output) instead of a liter.  Plus he suggested for his range to be 88-93 instead of 92-98.  So basically the fist cardiologist was pushing Jeffersons heart and pulmonary artery too hard by wanting his sats that high.  Good grief!!  They are going to do another X-ray in the morning to look at his lungs again.  If there is fluid in his lungs, then they will have to put him on a diuretic that will flush that out.  But it will screw up his electrolytes and other things that are perfect, by making him pee all the time.  I feel like it's just another set back to getting us home.  I keep getting more discouraged, but I know it's for the best. I just want him healthy!

   So we are optimistic and hoping for a better day tomorrow! 

His poor foot

I cannot get enough of the little guy!

Day 5 in the NICU

 November 17, 2013

 He weighed in this morning at 7 lbs 12.5oz, 1 oz from birth weight!! 

   Thank heavens for nurses!!  With his feeding tube and him being able to take bottles, the nurses have fed him at night either through his tube or by bottle, and I have been able to sleep!  I feel much more refreshed!  I'm still a little tired, maybe it's my body playing catch up, but either way it is SO nice to be able to sleep and heal up a bit.  Jefferson is doing good.  His oxygen levels stay 30-40% which is good, they are not getting higher thank goodness!!

   He is still super lathargic and is really hard for him to stay awake to eat.  That's the main reason we have a feeding tube right now.  

  This is his day 5 of life, and he is just now getting a bath, yummy!   He absolutely loved it though!  Hopefully he will love the water just as much as his big sister does! 

   It's a little discouraging being here in the NICU.  I haven't seen my bed for days and I just want to bring him home!  I want to see my family.  Poor Stella doesn't ever want anything to do with me when she sees me.  It breaks my heart.  But at least I got to spend some quality time with her before Jefferson was born, while I was on bed rest.  I just want to get home and get settled into our new lifestyle as a family of 4!

All clean!! 

And one of my favorites, so far

Day 4 in NICU

November 16, 2013

    Jefferson had a much better day today!  He did really well and pretty much slept through the night while the nurse fed him through tube, only moving him to change his bum.  In the morning when I first went to see him he was much more alert and fed really well.  He keeps getting better and better when he eats from me.  He is finally starting to get it and he is doing better in putting his toung down and out of the way.  

   His oxygen levels were around 35 through the night.  Not too high, but he seems to be getting lower.  The Drs decided to put him on a schedule for every 3 hours and his feeding a changed from 45mils per feeding to 53mils.  In order to try and figure out how much he ate after nursing, we started to use a Breastfeeding scale before and after.  It weighs him and then figures out the difference of what he ate from me.  Then after weighing him we then know about how much more to feed him.  We then try with a bottle and see how much he will eat from there before getting too tired or uninterested, and then we feed the rest through his tube. This has been a good plan so far.  It seems to be helping his oxygen levels stay down and he is nursing better each time I feed him. With his heart defect he doesn't have any energy.  He is tired all the time and barely has enough energy to even eat.  It breaks my heart to see him work so hard and get tired so quickly.  Between his heart problem, low glucose the first couple of days, his PDA (I'll explain later) still being open, low temperatures at times, and his oxygen levels, poor guy is using all his energy just to breathe.

   He is such an amazing little dude and is a fighter.  Although it feels like forever, I know he needs to be here in the nicu to get him strong so he can come home.  We just absolutely adore him and cannot get enough!! 

    I feel guilty I have not been able to spend much time with my little princess, but hopefully since things are more under control with Jefferson I will get to see her more.  She got to hold her little brother today.  The NICU only lets her come for 15 minutes, 2 times a week, so she was really excited to get to hold and see him. She is going to be one amazing big sister to this little stud.  They are going to be the best of friends!

I LOVE his hair!!

Day 2 in the NICU

November 14, 2013

Jefferson is making a good transition into his new world.  His oxygen levels were amazing at night (and early morning) and was eating like a champ!  Although I'm not sure he was getting much from me.  I began trying to get my milk to come in started pumping after every feeding.  His glucose levels had been dropping from 60s to low 50s and they were concerned he wasn't not getting enough.  He also was not having enough wet diapers.  

   He has been able to maintain a good body temperature and was taken out of the heat beds and put into a crib bed.  He seems to like it, but he loves to be swaddled.  It's a little awkward with all the cords and attachments to him.  His poor heels had to be pricked still before every feeding and is so sore.  It breaks my heart, but I understand why it needs to be done.  What ever they need to do to keep him healthy so he can hopefully go home soon. He also needed more blood drawn for labs so he got poked in the hand for that.  He's so tough and took that like a champ.  

    He is such a great eater, I just hope I'm making enough for him.  I just don't want to have a low supply like I had with Stella.       I had been pumping after every feeding, so we started to feed him that milk through a nipple after I fed him to try to get his glucose up. He chugged down what ever extra I had in seconds.  

    His weight dropped.  He is 7lbs 5oz now.  But the Drs are not too worried since this is common with newborns.  But other than that he is a champ and keeps doing better each day.

He doesn't open his eyes for very long, so it's nice to get it on camera. 

Day 3 in NICU

November 15, 2013

   Today was a big day, pysically and emotionally.  I got kicked out of the hospital and after a few hours of trying to figure out where I was going to go, we decided to get a hotel close to the hospital so that I could still go and feed him.  

   It started out with bad news with his sats (oxygen levels) being low and had one wet diaper all night.  The Drs are worried he is dehydrated and isn't getting enough from just breast feeding.  So they decided to see how his morning feedings went and if he hadn't had any wet diapers they would place a feeding tube in him to help get the right amount in.  He only weighed 7lbs 4oz, which is too much lost since birth.  

    By mid afternoon, things still were not getting any better so the nurse put a feeding tube in.  With the tube they were able to draw back what was in his stomach to see how much he got.  Kinda gross, made me gag a bit when I first saw it.  The Drs figured he needs a minimum of 43 mils of milk each feedings.  On a good note my milk started to come in more so I was able to produce a little extra each time I pumped, than the 43 mils needed for one feeding. They also decided to put him on a 3 hour feeding schedule instead of an "ad lib" schedule, where we feed when he wakes up and is ready. 

    On another good note his glucose had been good numbers for the last couple feedings so they stopped the glucose teste before each feedings!!!  Yay!! Maybe his heels can begin to heal now.  Poor thing has blue and purple heels from being poked and had blood squeezed out of them.  

    Drew had Stella all day so I spent all day at the hospital alone.  I went back and forth from the hospital and hotel to rest and feed Jefferson.  I was able to do skin to skin with him.  This is such a special time and I highly recommend it to any parent.  There is something magical that happens when you do skin to skin.  Within seconds of putting him on my chest he just stared at me and stilled.  His eyes got big as he was listening to my heart.  Something familiar to him that he hadn't heard in a few days.  It was so sweet and I loved every minute of it.  

   The nurse and I decided since he had a busy day to just let him sleep through the night and feed him through his feeding tube.  I thought that the tube was another set back, but it actually was a blessing in disguise.  Jefferson was able to get some sleep and I was too!!  We went from 9pm to 6 am with all his feedings through a tube.  He did really well and I was told he didn't wake hardly at all and slept through the majority of the night.  Other than getting up to pump, I was able to get more than 3-4 hours of sleep.  It took so long to get up get to the hospital, get set up, feed him, pump after, clean up and get back to the hotel I was only getting an hour and half of sleep before I had to get up and be back to the hospital.  So it was heaven.  

   Here's a few more pictures of my sweet little boy!