Sunday, February 17, 2013

Picture Moments I Love

 Jordan likes to grab and play with his suction tubing.  I let him enjoy himself and he fell asleep after managing to tangle himself up.
                                                        Just a sweet moment
 These 2 brothers sure love each other.  Aaron crawls in the crib with Jordan and Jordan will light up and not take his eyes off Aaron.  Aaron sometimes will bring books to read to him.  Aaron also gets a lot more smiles than the rest of us.  It is a sweet connection.



                                 

    I love this shirt.  It reads "I Was Born Awesome"  Jordan was born awesome.  He is such a special little spirit that continues to bless our home.  He will have an awesome life and we will enjoy his awesomeness!  He is how he needs to be, how the Lord intended for him to come.
                                                I LOVE these priceless moments!


ONCE AGAIN I AM HAVING TECHNICAL DIFFICULTIES.  I WILL HAVE RYAN FIGURE IT OUT TOMORROW.  I HAVE CUTE VIDEOS TO POST AS WELL.
  




Priceless Photo by Jenny


Jenny did a photo shoot with Aaron at the beginning of January, so he would have been 3 months in this photo.  Pretty adorable shot with those magnetic blue eyes.

Jordan's Blessing


For those following this blog that aren't familiar with the LDS Church when babies are born we don't baptize them (we do that at age 8) but we give them a blessing in church.  It is a big event for us.  At least we sure make it in to one!

My Mom and my sister Staci and her baby Jett flew out to be with us.  It was a fun time.  I got to spend some great time with them.  We did hair (Staci our family hair dresser, brought all her gear and took care of us), and hung out.  Since we had extra nursing care we even got to go as a family to OMSI.  Staci's little boy Jett is only 2 months older than Jordan.  We got a couple pictures of the 2 of them together.  It will be fun having them so close in age.   I forget sometimes how much fun my family is.  We had some good laughs.  I can hardly wait till our next Utah trip.  My family rocks!

The blessing was beautiful.  Not only did Jordan look handsome in his little outfit, but Ryan did a beautiful job giving him the blessing.  He talked about what the atonement encompasses more than just sins but how it covers suffering and challenge.  He was blessed with faith, hope and courage and the gift of happiness.  The part that stuck out to me that I believe with all my heart is that with the knowledge of Jesus Christ and having faith in Him, there is always hope and with that we have the ability to find our way in this life.  I am so grateful to have a strong testimony of that.  That knowledge is what carries me and know will carry Jordan through his life as well.  

We had Ryan's family there as well.  The family support was great.  The part I loved the most was being able to finally take my child somewhere with me that is a part of our routine and not just to visit the doctor.    I loved having him my arms and just being there with him.  We felt like a family.  I am so glad we decided to do this at church instead of our home.  So many people in the congregation have been such a big support and help to us that it didn't seem right to not have them be there as well.  

Here is a few photo's from the day:  February 10, 2013


                                                              Family
                                           One of our special nurses, Mary Anne
                                                            My Cute Family~
                                                       Us with our little Jordan
                                    My Mom and My Sister Staci and her son Jett,
                                                          with Jordan and I.


Friday, February 15, 2013

Fresh Out of the Hospital, again!

Last week on January 30th I woke up to go to boot camp.  Nurse Lois told me Jordan had a great night and had slept 7 hours.  Which of course was great news.  When I got back from boot camp Lois was a little shaken up and told me Jordan had thrown up a dark brown color.  I helped her clean the mess up and went upstairs to shower.  When I got down he had thrown up 2 more times. I got the kids off to school and scheduled an appointment with the doctor.  Nurse Donna came and we took off for Dr. Pai's office.  Jordan performed for the doctor perfectly, he threw up for her as well, dark brown again.  They then sent us off to the emergency room.  We went to Randall's children's hospital and he performed for the doctor in the ER.  They admitted us after confirming he was throwing up old blood.

Jordan threw up 2 more times that night.  His ENT came and visited him.  I asked if it could be his G Tube that was causing problems.  He did not think that was the problem.  They first thought it had to be something viral going on.  They tested his blood to see what he platelet count was.  The tests came back perfectly.  It was absolutely confusing to the doctors and frustrating.  The next few days were spent waiting for some of the tests to come back seeing if he had anything growing on his sample.  

Here are my facebook posts I posted about the event:

I have an amazing friend! I had to take Jordan to the hospital today because he has been coughing up blood. I have been gone all day. She took care of my other kids, did my laundry, got my kids to do their jobs, brought me dinner at the hospital along with my pj's, phone charger,ipad, bar of chocolate and even remember to pack in my toothbrush! Thanks Angela! Everyone deserves/needs a friend like you!

I am sitting here at The hospital holding my sick little baby. Here's a quick update for those who have been asking. He has thrown up large amounts of blood twice today. Once with only me in the room. Talk about scary and heart wrenching. The docs are still speculating and ruling things out. His ENT Doc traded out his trache and scoped him checking out his lungs. All clear there. Now we've narrowed it to GI problems or a virus. He has been given ulcer meds to hopefully keep throw up at bay. Now we are watching and waiting. Please keep him in your prayers. Thank you to Jana and Rockelle for breakfast and lunch and chatting with me, Kim for taking my boys, and Ang for taking Brooklyn to dance. Wow, I appreciate all who are constantly helping us! Thanks!


Wahoo! Good news! After 2 more rounds of throwing up they docs decided to do an endoscopy (upper GI scope). They didn't choose to do it before now because they'd have to put him under. After the scope the doctor approached me and said you might laugh at this. Remember the question you asked me the 1st day? Which was, "could there be something wrong with his G tube?" That is what it was! His G tube got dislodged and blocked off his intestines. It rubbed on the stomach lining and caused bleeding which couldn't go anywhere but up. Amazingly simple. He replaced the G tube with a smaller size and we are starting him on small doses of pedialite and will hopefully get to start on food tomorrow. If all goes well, home by Monday! Thank you all for your well wishes and prayers! Can't even begin to tell you the load that was taken off my shoulders. So happy for the outcome!!!



It took a couple of days to get Jordan back to his normal eating schedule.  Once he showed his body could handle the feedings we were released on Monday.  It took the rest of the week to get his stomach back to digesting as quickly as it should.  It is amazing how before a feed I can check the residual left in his stomach to make sure he is ready for his next meal or if his feeding needs to slow down.  Having a GTube is an interesting experience.  A baby without eats when he is hungry.  Overeating and getting the right amount of calories is not a problem.  When you depend on your feeding tube everything is calculated out perfectly as to what he should be having for his weight gain.   

As of today he is about back to his pre hospital weight.  He is 11 pounds 6 ounces.  Really filling out his 0-3 months clothes.  So nice to see his growth and to see him starting to do all the things a 3 month would do.  He is 4 months old, but he is catching up.  He smiles a lot and warms the heart so much.  He is a sweet boy.  He has the nurses that take care of him wrapped around his finger.  I am so glad they all love them like they do and take such good care of him.  

After we got out of the hospital we got some extra nursing hours for his transition back to home.  It was nice to have the extra help since I came home to sick kids.   Now, we are all healthy and doing well.  And our nursing hours are sadly back down.  Even though I am going to miss having my day nurses who I also refer to as my in home therapists, I am thankful to have night nurses so I may get a good nights sleep, exercise and get the kids mostly ready for school before they leave.  I think I mentioned it before, the state through the "Medically Fragile" program gives us $10,200 dollars each month for nursing care.  That ends up being 283 hours divided up in the month to be 9.2 hours each day.  So, even though I am bummed I don't get more nursing ours, I am SOOOOO thankful to have the hours I do.  That is over $120,000 each year paid by the state that Ryan and I don't have to come up with.   That is a lot to be thankful for!  Amazing too what insurance will pay for a child with issues.  I remember always complaining because of what our insurance wouldn't cover, now I have a whole new respect.  They cover all his supplies and even his formula.  When does insurance pay for formula?  Crazy!  So, don't feel bad for us when I say we are losing nursing hours.  We are pretty blessed to have what we do!

Sunday, February 10, 2013

Pictures by Jen



December 22, 2012

My friend, Jenny Harris from Jenny Brooke Photography came and took some photo's of Jordan.  I thought they turned out really cute.  Here is a couple of them.





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  1. He's such a precious, cute baby. He is so lucky to have you for a mom!
    Reply

Learning Jordan is Deaf



December 22, 2012

Jordan is continuing to gain weight and make great progress.  I love this stage where they stare at their fists and follow them with their eyes.  He is up to 10 pounds and getting a super cuddly body. I am surprised he gains any weight with how constant his little legs are pumping.  He looks like he is riding a bike whenever he is awake.  It's pretty cute.

This week Jordan had quite a few doctor appointments.  His first was with the ENT who did his tracheostomy.  Everything looked great.  His tongue is still half paralyzed, but the trach site looked great.

The next day he had his Peg G tube replaced to one they call a Mic Key.  It is a lot smaller and designed to be more user friendly and it is harder for him to pull on.  Even if he did manage to pull it out it is now something I am trained to replace and put back in.  I told you, I should have gone to nursing school to begin with, why did I ever change my major???

The following day we had 2 appointments.  The first with the Cardiologist.  He had an echocardiogram.  It showed that Jordan's hole in his heart is healing.  It wasn't 100% but well on its way.  We don't have to see him again for 3 years to check up on it. Yay!

The last and hardest appointment was with the Audiologist.  Jordan was given two different tests on each ear.  He did not have any response in either ear, which means my little boy is totally deaf.    That broke my heart.  In my heart I really believed he had hearing by the way he responded to me when I talked to him and when I sang to him.  The specialist that did the test informed me it was just the vibrations he was responding to.  So, in the next couple of months he will get a CT scan and see if his cochleas are normal size; if so he may be eligible for a cochlea transplant down the road.

Here's an interesting fact.  In Utero, when the kidney's are developing, so is the hearing.  So, when she asked his medical history and found out that he had a small kidney she knew right away that he probably wouldn't have all his hearing.  So she tried to prep me before the 2 hours of testing began.  But who can prepare you for news like that?

So after a few days of letting it soak in I still cry when I ponder too long, but we are trying to find the good things.  So far we are excited to learn a second language as a family (sign language) and I will be able to put my "Signing Time" DVD's that I bought years ago to good use now.  And I still have a cute and adorable child who is healthy and strong; I find the most joy in this knowledge and it brings me comfort.

My kids of course do as kids do and have so far handled it really well.  I pulled out the DVD's last night and only got only one groan.  Mikey responded to this by saying, "Hey, we have to learn it now for Jordan."  I know my kids will come through this with flying colors.  They had lots of questions but my favorite from Mikey was "Will he still be able to play basketball with me?"  The important things of life were covered!!

Ok, so funny!  Aaron is sitting here kissing Jordan while I am typing.  He just said to me, "Mommy, Mommy, Jordan smiled at me and said Aaron is Awesome!"

Needless to say, its been a rough week.  However we have had some wonderful things happen as well.  I want to thank those that brought in meals this week.  They were really helpful and the timing was perfect.  This week we also had the local girl scout group come over and helped around the house and brought several freezer meals that are for the crockpot for my rough days. These beautiful girls raised money, bought the food and prepared the meals.  So much love and thought went into those meals.  Not only that, they brought some Christmas treats for my kids.  Thank you girls!

So far we have learned there are many support groups out there.  I know there are some of you that may know more than we do for some of these things we are facing and we are always open to any information you have to share.  Once again, thank you all for your support.  We sure have needed it!

Thriving at Home



December 10, 2012

It has been a whirlwind since Jordan has been home.  We have been figuring things out.  We set up our piano room as our mini NICU/Jordan's bedroom (forgot to take picture and its is dark and peaceful right now, so next time:).  We started out with nursing care for 24 hours a day for almost a week, then down to 20 hours and now down to 16 hours a day.  It has been working well.  Yes, it is a little weird having another person constantly in your space, but they have been wonderful nurses and it hasn't been as bad I originally thought it would.

Jordan I feel is thriving in our family environment.  He is gaining weight, starting to smile and trying to eat his fists.  It is fun to see his progress.  What I really enjoyed this week was when his physical therapist who worked with him at St. Vincent's came for a home visit last Monday.  She was excited to see his progress.  It was fun to hear her talk about the way he was when he left St. V's compared to how he is now.

This past week we traded out his Trach again.  Second time for me to do this.  Still scary and still nerve wracking, but we did it.  It went a little smoother and I wasn't in the state of shock and horror as I was the first time.

We have ventured out twice with him for doctors appointments and he has done well.  It is nice having the nurse in the back seat with him.  This last time we didn't put him on any oxygen and his stats stayed normal.

Our kids are doing really well with it all.  Tyler and Aaron are struggling with less attention coming their way.  A little more fits and teasing.  Hopefully we get through that pretty quickly.  All the kids have learned to suction Jordan.  The 2 younger ones love suctioning his nose with the BBG (non invasive baby booger grabber).  The other 2 have gotten to the point they can do his nose and trache.  My favorite is seeing Brooklyn holding Jordan and cuddled on the couch.  He starts gurgling and she reaches over and turns on the machine and suctions him like its no big deal.  I am really proud of them.  They treat him like normal and are not afraid to hold him.  They love their little brother.

Aaron has got quite comfortable with the nurses.  He will go and just chat with them.  He tells them what his baby brother likes and isn't afraid to instruct them.  He also gets after them if they do "his job."  Which is to turn the suction machine on and off.  I think he keeps them quite entertained with all of his comments.  The nurses are so good to make sure my kids are involved with Jordan anytime they want.

We are definitely getting more confident in Jordan's care.  If he was an only child it would be a lot but doable.  With 4 other kids it can be challenging.   Sometimes you can take him from room to room with you as you do things and other times you sit next to the suction machine and don't move.  It is nice when the older kids are home because they can be a big help.  I hook up the pulsocsimeter (I have no idea how to spell that) for his oxygen levels and heart beat, set the suction machine next to them while they hold Jordan and listen for them to yell if anything goes off or wrong.   Thank heavens we have nursing help as much as we do.  I would never get anything done!

I must add in here as well that I have amazing friends.  This last week I had Jana stop by because she had to "kill time."  So she cleaned up my kitchen for me and folded my clean laundry.  Thanks Jana!  Another day when I was trying to get out the door to take Jordan to the doctor Amy showed up and helped me get my kids out the door and stayed and cleaned my kitchen and put laundry in and folded the clean clothes.  That same day I caught Angela coming out of my house when I pulled in and she had been switching my laundry and made Aaron's bed with clean sheets since he had an accident the night before.  It did however cure her of ever wanting a bunk bed.  Those things are hard to change sheets.  Try it while your pregnant, not fun!  Also, my ward members dropped off more meals this week as well.  I am so thankful for all the help I am getting.  I keep thinking I can manage on my own and am quickly humbled.  I am glad my friends haven't listened when I say that I am doing fine and insist on helping anyways.  Thank you!

It has been challenging since we have been home.  I have had 2 more bouts of mastitis which both knocked me off my feet.  Which now make a total of 6 times.  That is such an awful wicked thing to have.   Then last week I took Brooklyn to the ER for swollen lymph nodes in her stomach.   She was doubled over in pain and they 1st thought it was an appendicitis.  So grateful it wasn't.  So after 8 hours they gave her some medication and we came home and slept.  This past week however was non eventful.  We welcome days and weeks and even months like that.  Boring is good.   Now if we can wrap our head around Christmas!  We still have about 15 days to pull it together!

Well, that is our update for now.  This will be our first week where we have 2 days alone without a nurse and the next week we have several doctors appointments and a "procedure."  Jordan gets his G-tube changed to one that will be shorter and more accommodating for clothes and so he won't pull it out as he gets bigger.  He also will get his hearing retested and will see the ENT again for his trache.   Always busy times. I am sure it will be after Christmas before I post again.

We hope you all have a wonderful Christmas holiday!

   Jordan's night nurse brought a big stocking tonight to take a picture with him in.  Turned out pretty cute!


   Thanks Mara!  This outfit is adorable!

Jordan's Home



November 23, 2012

Wow!  This Thanksgiving is one to remember!  On Wednesday we got to bring our little guy home.      It was so surreal as we packed everything up and signed the discharge papers.  I took tons of pictures to document this wonderful day.

The nurses from CNS came first thing in the morning and helped me arrange and prepare for his homecoming.  Afterwards Linnell, his first home nurse, and I went to go pick up Jordan.  We were met by his physician and got the approval that all was going well and Jordan was cleared to leave.
I was filled with so much emotion and could not believe we finally made it to this day.  My little boy was coming home!
                                                            Here we go!
               This is Jeff our Respiratory Therapist helping us. He is the one who has spent hours with
                          us training us to be able to take care of Jordan's trach.  Thanks Jeff!
                                      On our way to the van with an oxygen tank, just incase.
                                                         In the van with his nurse
                                                            We're home!

 Once we arrived home we were met by the whole family.  The kids were anxious to hold him.  After Jordan made it through all the kids Brooklyn and he snuggled on the chair together.  He was so relaxed snuggling with his big sister that his secretions stayed under control.  It was a very sweet
moment.
                                  

Jordan is doing so well.  I think he is glad to be home as well.  He is a smart little boy and has figured us out.  When he hears our voices his secretions go crazy.  We suction him and hold him.  He loves being held and seems to know what to do to get us to pick him up.  It doesn't take much because we love holding him any chance we get.

The last 2 evenings I have been able to unhook him from his monitor, food and humidifier and snuggle on the couch.  Both nights we have had 2 hour naps together.  Both times he went the full time without having to be suctioned.  He is so at peace in our arms.

I finally have my family back together and it has been absolutely wonderful.  I love the interactions the other 4 kids have with Jordan.  They love him and they too are glad that Jordan is home and mom is back.

I must say I am grateful that we have nursing care for Jordan, but it is a little strange having a nurse in your home helping to take care of your child as you are going about your day to day stuff and sleep at night.  Jordan is a lot of work and it is very time consuming to constantly keep his secretions at bay.  I don't know how we are going to manage when our nursing hours are down.  But for now I am just thankful I have someone helping so I can take care of my other kids.  It will be great to have this help as we learn how to adjust to our new normal and get a routine down.  Thank heavens for this wonderful program that is helping us keep him out of the hospital and helping us succeed as we figure things out.

Thanks again for all your love and support.  Happy Thanksgiving!

I have had people ask for us to keep up our blog with at least some updates and pictures.  I will try and do that at least once a week.  Thanks so much for your interest in our family and our sweet little boy.  This has been quite the adventure for us and will continue to be so for a while.  Thanks for sharing it with us!


Preparing for our Homecoming



November 18, 2012

 This has been a busy week for Jordan, Ryan and I.  We are preparing for Jordan to go home this Wednesday as long as everything goes well.  We have had quite a few training sessions with the Respiratory Therapists, physical and occupational therapists, meetings, meetings and more meetings with nurses and agencies trying to meet all of our needs and making sure every last detail is taken care of.  I am so glad that there is a person employed that her specialty is to make sure you have absolutely everything you could possibly need to make the transition go flawless as well as dealing with insurance to make sure those things are covered.   We feel so overloaded as it is, that it is nice to have someone else deal with the insurance and someone who has the power to negotiate as to what needs to be covered.  I find it interesting that since the insurance wants us out of the NICU as soon as possible that when it is time to come home, the hospital has negotiating power as to being able to make sure the insurance will cover Jordan's needs because it is a whole lot cheaper not to have him in the hospital than what he might need at home.  The doctors are basically making sure we have our own mini ICU unit at our home.  We will be having suctioning devices, oxygen, monitors etc. in our home.  It should be interesting.

Because of Jordan having a tracheostomy he is eligible through the Oregon Department of Human Services Medically Fragile program to provide us with in home nursing care.  The first couple of days we are home they will provide a nurse around the clock to help it be a smooth transition, then we get to choose which time works best for us.  The doctor wants us to have it at night for a while so we can get sleep so that we are able to deal with his care in the daytime and not burn out.

We have had many emotions surrounding this day, but I really feel like we are ready to make this happen.  The training is there and the next thing really is learning how to make our "new normal" work.  I know the kids are ready to have me home as well.  All the help we have had has been absolutely wonderful.  But for all of you who keep asking how you can help, I am sure there will be opportunities here shortly:)  Our family can only stay so long (I am thankful for they time they have given us- they have been amazing) and we are not out of the woods yet.  But, we are going to have him home!  We are all so excited!  We also felt a sense of relief to have nursing care as long as we need it.

Tomorrow or Tuesday we will learn to trade out his trache.  Ryan and I have both done it on a doll but have never done it on Jordan.  The hole is covered by the plastic trache tube, so we have never seen it without.  The nurses say the first time you cry.  The second time you shed a few tears.  The third time you are a pro.  So, I am anxious to get to the third time!  Its amazing what you start excepting as normal and are able to handle.  I was freaked out over the gtube, but that is nothing now compared to the trache.  Which I might add we are feeling more comfortable with by the day.

Jordan has his 90 minute car seat test in the morning.  He has to pass this before coming home.  They sit them in a car seat and make sure he can keep his airway clear while sitting in his seat for the 90 minutes.  I don't think he should have a problem with this.

As I stated before, Jordan is a special little spirit.  You feel it from him especially in those moments where he is having testing, his stats taken or just his constant trache care.  His patience is amazing.  I can only hope that will always be a part of his little personality.   This experience has been challenging and will continue I am sure, but it does not feel like a burden but more of an honor to take care of Jordan.  I hope my other children will feel that as well, especially since his care will take away from some of the time that was spent on them.  I know this will call for some major creativity.  So if any of you have some advice on how you juggle it all and make sure everyone feels loved, I would love to hear it.


Jordan has been growing and filling out.  He is now 8 pounds 11 ounces and 46 days old.  He is looking healthier all the time.


The kids had to all have flu shots before Jordan gets home.  Here they are lined up at the doctors office.  Brooklyn got hers up her nose and the boys chose to have shots.  Mikey hardly flinched, Tyler tried to do the same but his eyes were watering.  Aaron was hilarious.  He didn't know what to expect but was excited to be doing this with his brothers. He had a grin on his face then when she poked him it turned to shock and all he said was Ow!  I guess it is one of those things that you just had to be there because it was just funny.  We all got a good laugh at him.

Finally, an update!



November 13, 2012

I apologize I have been having a hard time getting time/energy to post an update.    This last week has been a recovery week for Jordan as well as a little more testing.  Each day shows improvement on his secretions.  He looks healthier as each day goes by.  He always welcomes us with his bright eyes and the curve of one side of his mouth goes up as if he is trying to smile at times.

This week we met with a Urologist and have learned Jordan has one kidney smaller than the other.  He also has reflux of the urinary tract back up to the kidneys.  Thankfully this is manageable for the time being with antibiotics.  Minor compared to the rest.

We met with the Geneticist this week as well.  The "diagnosis" that he was leaning to, Jordan does not totally fit.  He came to the conclusion that in the first trimester the facial nerves weren't totally developed for some reason.  He talked a lot about the genetic side of things but the conclusion is what the doctors have been saying and that is that Jordan needs time and they believe that some of these problems will correct themselves.  He plans on keeping an eye on him in case other things present themselves.  The genetic world is still so new that they don't have "diagnosis" for all things that come up that may be genetic related.

Well, today is the 4th day that I haven't been able to be at the hospital with Jordan.  I REALLY miss being there with him.  My other kids were so kind and shared their cold with me.  Unfortunately it has hit me hard.  I am sure it has nothing to do with my body being run down or stress:)  If you have any sign of a cold they don't allow you in the NICU.  Smart on their part but it is breaking my heart not being able to be there.

This week the plan was to prepare for Jordan to come home by the end of the week.  It was a little overly optimistic but we were pushing for it.  I am sure now that since I have not been there to finish my "trachea training"  it will definitely be next week.  But I am OK with that.  I want every bit of sickness out of our house before Jordan comes home.  Ryan has been able to spend more time there filling in for my absence.

I hope the next post will be a) because I am finally better and can be there with Jordan and b) that I have a date of Jordan coming home.  Wish us luck!

I also want to say thank you to all of you who continue pray for our baby, bring meals, help with my other children, visits, bring treats to my house, etc.  There has been such an outpouring of love that we continue to be overwhelmed by it.  Thank you each and everyone of you.  We feel so blessed to have such wonderful family and friends surrounding us.  We could not have the strength and stamina and optimistic approach with all of you.  You are helping us more than you know.  THANK YOU!!!

Patience



November 5, 2012 

The weekend was a little rough with the surgery aftermath and recovery.  However, when I arrived today Jordan looked so much better!  His face had great color and was bright eyed and so aware of his surroundings.  It was a lot of fun talking to him and having him watch me intently.  Have I mentioned how adorable he is???  He's pretty darn cute!  The nurse pulled a mobile for him today as well and he really enjoyed watching it and listening to the music.

The blue tube below attached to his neck is a humidifier.  It keeps the trachea moist so "boogers" don't form and clog it.  He started to desat a few times today but as we cleared out the trachea it would immediately go back up, which to me is promising.  Since the nurse has 2 babies to watch and can't always be in the room, I feel like the advantage of my being there is I can keep a closer eye on him.  The minute I could see him struggle and have secretions come out of his trachea I could suction them up and respond more quickly before the alarms went off.  I am getting more efficient at the suctioning.  My St. Vincent nurses would be proud!


The highlight of my day is when my dear nurse unhooked Jordan from his food, heart monitors, and humidifier and let me take him for a walk in the hall.  Freedom!!!  I can't tell you how giddy I felt as I walked my boy around for the first time.  He was so peacefully and calm, checking out his new surroundings.   We would walk around the NICU, make our way back to the room, suction his trachea and head back out.  I didn't want to take him back in the confines of his room or bed any too soon.  I had to make sure we marked the event with a picture.  Doesn't he look great?



Definitely a good day!

Surgery Day



November 3, 2012

Everything went perfect!  We got there early and Ryan gave Jordan a blessing.  He was bright eyed and looking good.  It was pretty cute, he watched closely as the nurses attached and detached things and watched intently as the bed lid lowered.  I hadn't seen him that bright eyed where he noticed so much before.

The surgery took almost 2 hours from start to finish.  The Ears Nose and Throat Doctor met us back up in his room and shared with us the following:  During the initial part when they sent a scope down through his trachea and down to his lungs they noticed that Jordan's vocal chords are working really well now but also noticed that half of his tongue is paralyzed.  That is part of why he cannot swallow food or his secretions.  So, the hope is that eventually, the tongue and other swallowing muscles will start working like the vocal chords dd.  There is no guarantee so all we can do is wait and see.  I don't know that I can explain it correctly but between the issue with the tongue, the pooling of his secretions, vocal chords protecting themselves, and the way babies breath all work against him band cause him to stop breathing for a moment.  So, getting the GI tube and the tracheotomy will help him breath clearer and not have to worry about eating food through his mouth allowing him time to hopefully let his body repair itself.  This answer and the procedure feel like a big step forward.  It is nice to have an answer that tells us why something is happening.  If his body does not repair itself, the doctor believes he may still be able to swallow using the half of his tongue that is working.  This of course will also make it hard for speech.  Either way I am sure we will have some speech therapy.  

We are so hopeful.  If all of this is truly the case as to the cause of Jordan's desats then he should be prepared to go home within 3 weeks.  He should be slowly taken off the ventilator this weekend and breathing on his own through his trach by the first of the week.  Then the training for Ryan and me will begin.  

I can't even begin to explain and tell you exciting and nice it is to see Jordan without tubes on his face.  Once the ventilator is taken off his trachea tube we will be down to the tracheotomy, heart monitor, and GI Tube--and 2 of the three can be covered by clothes.  He will look so good!

After spending several hours with Jordan post surgery to make sure he was okay, the doctor encouraged us go home and be with our other kids since Jordan would be highly sedated.  Thanks to some friends, my kids were taken care of, dinner brought in, and tickets donated to Time Out For Women in Portland for my Mom and I.  This turned out to be a nice break and extremely uplifting.  Thank you!  Since the family was taken care of, Ryan was even able to take Brooklyn out on a Daddy-daughter date, which he hasn't been able to do for months.  Overall, it was a good day.

Here is just another post operation picture with the tracheotomy tube connected to the ventilator:


Saturday, February 9, 2013

The Big Move



November 2, 2012

Yesterday was the big day for Jordan; he was transferred from St. Vincent's Hospital to Legacy Emmanuel Hospital, where he will be having his tracheotomy surgery.  Everything went smoothly during the transfer and the equipment they used to transfer him in was incredible, with self-contained oxygen, suctioning equipment etc (see pictures below).  He even had a 5-point seat-belt.

When we arrived at Emmanual's new new Children's Hospital Unit, I was impressed.  Everything is brand new.  Jordan has his own private room, and there are drinks for parents, vouchers for food, a place to sleep, and a closet for storage.  However, even with all their bells and whistles, I will miss the homier feel at St. Vincent's.  I like how the nurses there were all nearby and I never had to call anyone over to help Jordan, which I have had to do several times at Emmanual.

The nurses yesterday were very kind and humored me by putting on Jordan's Halloween pajamas and his pumpkin hat.  We did a little photo shoot and I am sure once I left it came right off.  Lets just say it was not conducive to all of his tubes and wires.  But it sure looked cute!!!

Today was also a decent day.  We had an hour with several desats in a row.  While every one of these is at least a little scary, they are also a good reminder for me that this surgery is necessary for him to improve.

In preparation for surgery, we met with some of the doctors that are involved in the surgery, signed all the paperwork and are ready to go.  The surgery is set for 7:30 in the morning. We are confident all will go well.

Here are a couple of photo's.  I have more of the ambulance stuff but am still having technical difficulties:

                                     

                                                    HAPPY HALLOWEEN



***I have some great pictures but am having technical difficulties.  I will post them tomorrow.