Huge Praises

Today I went to the NICU to see my boys and feed them.  My plan was to nurse Logan and see if Dylan would take a bottle.  They are both doing well but the tend to trade off on awake times so I haven't been able to feed both of them in one visit.  While I was there I got to hold both the boys again.  It brings me such joy to hold them together.  While they were grunting and swatting at each other the cardiologist came in.  Both boys had another echocardiogram today.  Big news!! Both boys have perfect hearts!  Yes, that's right, Dylan's PDA has officially closed!!! Neither of them will need to follow up with a cardiologist.  I am so happy and excited! One more blessing, one more step to coming home.  Another blessing, I fed Logan and the nurse said I could try to nurse Dylan, so I did and he did AWESOME!  So, today for the first time I was able to nurse both boys.  Just one more realization on what is to come when they do come home.  CHAOS!  But it will be joyful, beautiful chaos.
Dylan wasn't in an open crib like I had hoped but I think he will be soon.

HOORAY for happy happy days!!

asking questions

We all have challenges in life and they are all different.  Jake and I have a friend who's husband is ill.  She is scared and doesn't understand the doctors.  I encouraged her to ask questions and not to be shy.  A lesson I am still learning but it's coming easier as the years and medical crisis continue in our lives.
Jake thinks I can be a worry wart.  I ask A LOT of questions.  I ask the same question until I get an answer I like too.  I have learned through dealing with JT and all of his doctors that I am his mom and I have a right to know.  I ask questions so I can understand what is going on with my child, what is the plan going forward, what is to be expected.... Since this isn't our first stay in the NICU I am more prepared to ask questions.  Knowing the course I know when to ask what questions.  Today I saw the very first doctor we met at Fairfax (yes, he works at both hospitals). It was good to see him.  He is kind and friendly and talks to me like a person and not above my level of knowledge.  He is patient and willing to sit, listen and answer my questions.  Today he came in because I have been asking daily about Dylan's echocardiogram (to check on his PDA).  I thought it was strange that it was scheduled for a Sunday so I thought it would be done today.  If I hadn't been asking daily and spoken to the doctor yesterday and today it could have been missed.  He assured me the test would be done before Thanksgiving.  Then I asked him what Dylan needed to do in order to be moved to an open bed.  He has been doing very well lately and I keep antisapating it but he remains in the isolete.  The doctor looked at the isolette then at the nurse and said "actually, he should be in an open bed."  So tonight Dylan will move to an open bed!  One step closer to coming home!!
Keep praying!  Looks like Logan has about a week or so to go.  He is eating almost every feed on his own (if he can't finish like today he gets the rest through his feeding tube).  It's very hard for them to maintain body temperature, eat and gain weight.  It's exhausting for them, literally exhausting.  Dylan has been doing better with bottle feeding.  Today he was amazing and ate almost his entire bottle without any trouble.  It was fantastic!! Please keep praying.  Pray for the PDA to be closed.  Pray for Dylan to maintain his body temp and eat tonight.  Pray for both boys to continue to grow stronger each day.  Tomorrow they have their eye exam.  Pray for good results.  So far their eyes are premature, no surprise there.
I encourage each of you to not be shy, ask questions. Don't be afraid of big words from Doctors.  Doctors want you to understand, they are just use to using medical jargin.  So be confident, ask.  If they are a good doctor they will take time to hear you and explain to you.

PICTURES

First time holding both boys together.  They are 60 days old!

Ethan at his Thanksgiving lunch 

Logan in his open bed

Dylan just hanging out getting snuggles

Jake feeding Logan 

Mr. Crazy - fire safety at the table is important

Silly time

progress

I feel like the days are flying by right now.  So much is going on with life that I forget to update the blog.  Then, when I do have time I forget what it was I wanted to say.  I know, I know, it's only going to get crazier and my memory is going to go even more when these two little ones get here.  So let's see... Dylan is on room air! No more breathing machines and he is doing very well.  Yesterday he took a few bottles which is huge because up until then he was choking and not eating from a bottle.  So this is great progress and I am hoping to get in and feed him later today.  His last brain scan came back clean and they will take a look at his PDA on Monday I think.  So please keep him in your prayers.  Pray that valve has closed!  His kidneys are functioning and they don't seem concerned about it at all.  It looks like our prayers were answered and his body just didn't like the fortifier.  Once they made that change and flushed his system he has had no concerning labs.
Logan is in an open crib! He is in the process of gaining strength and energy to eat every feed on his own.  One of the list of 3 things he needs to do before he can come home.  He is a great eater and more often than not he is able to take his entire feed.  I got to nurse him for the first time yesterday too and he was awesome.  It looks like Logan will be home very soon!  My guess is the first week of December.  He still has little things that he needs to do.  He needs all of his screenings/procedures, car seat test (they have to sit in the car seat for 90 minutes without having any episodes) All in all the boys are doing very well.
We are so thankful to be at Fair Oaks hospital. If you are local and still having kids, I have been to almost every hospital in the area and this by far is my favorite.  Faifax is great and you can't beat their expertise but Fair Oaks is lovely.  A calming, peaceful environment and the food isn't half bad either.

As for me, I am doing well.  My recovery wasn't anything like what I expected.  I was up and on my feet a few days later.  I get tired and my neck is still sore and bruised.  The pain in my chest is gone, and I am able to take deep breaths once again.  I still don't have my voice back and I would like to.  I keep thinking this is God's way of teaching me not to yell at my children in frustration.  Guess I need to get better at that before my voice comes back.

We are looking forward to the holidays.  We are really looking forward to having our family of 7 all together for Christmas.  We plan on spending the vacation at home, just us.
Once again, thank you for your prayers.  Pray I learn my lesson and get my voice back please.  If it's not back in a few more weeks I am going to need to see an ENT.  I would of course like to get all that done before the new year.  Anyway, keep praying faithful friends and keep giving glory to God.  We struggle with that some days, when everything seems to go wrong.  Pray for my incredible husband.  Jake has done his best to work from home for weeks almost months now.  It is a challenge because I am not much help yet.  Pray for his strength and endurance as he carries the largest load of us all.

over 4 pounds

Big news!  Both boys are now over 4lbs!  They are feeding from bottles a few times a day and overall are doing very well.  Logan is a great eater.  He is able to eat without his stats dropping.  Often times premies don't know how to eat, breath, swallow all together without forgetting to do one of the three.  Often times they forget to breath so their stats drop.  Logan does a fantastic job eating.  Dylan is having a harder time but I am not surprised.  Logan has been bottle feeding for a few weeks longer than Dylan has.  He will get the hang of it soon enough.
The boys were moved to Fair Oaks hospital which is only about 7 minutes from out house.  It is such a huge blessing! I am able to go for quick visits more than once a day if I like.  The room is quiet, the boys are happy and it shows.  Jake and I are happy!  Every time we walk in to the NICU there it is calming, peaceful.  Fairfax, where they were is an incredible hospital and they do amazing work! They are the only hospital around that takes premies as little as our boys were.  They were transferred for great reasons and we are thankful for the care they received at Fairfax, but we are so thankful for the environment at Fair Oaks.
For now it doesn't look like the boys will be home for Thanksgiving.  They are still in isoletes and they need to be able to maintain their body temperature while being in an open crib before they can come home.  They also have to pass a carseat test.  They need to be in the carseat for 90minutes without having any problems.  They also obviously need to eat without having any problems.  So basically we are on the road home! The three things the boys need to do before they can come home are
 - maintain body temperature
 - eat without being in distress
 - breath on their own (Dylan is still getting a little help with a nasal thingy of oxygen)

So, keep praying!  They are growing beautifully!! Also, please pray for Dylan.  He is having another echo cardiogram on the 24th to check on his PDA.  So please pray it has closed!!!

I am doing well.  Feeling better, breathing better.  My voice has not returned.  My dr. said it should it just might take time.  Please pray it returns soon.  It's very challenging to be in a loud house with no voice :-(

Blessings to you all!!!

CANCER FREEEEEEEE!!!

On Thursday I met with my endocrinologist.  He told me the awesome news! They found 4 cancerous tumors all on the right side of my thyroid.  Thankfully none of the cancer had spread to my lymph nodes so I am officially cancer free!! I give all glory to God! I am so thankful that I do not have to take the radiation pill and be away from my family for 10 days.  God is so good and I am so thankful!
As far as my other health problems go, I have stumped the surgeon whom I met with on Friday.  When I told him about my aspiration and my painful chest he was concerned and confused.  He immediately went and consulted a pulmonologist and together they put me on steroids to help clear up whatever is going on in my chest.  If I still have pain on Monday morning I am to call his cell phone and the pulmonologist and get in for an appointment.  Since all of my work ups came back clean from my recent ER visit they feel confident that the steroids should do the trick.  This morning I took my first (only one) full breath since Tuesday!  It was a great feeling to breath again.  Right now, I am resting in bed as Jake is out with the boys running them ragged I hope. I miss my family time. I hate being laid up while they are out and about.  But I also need to remember it's not about today it's about the long run.  It's about the next week, month, years..... So, today I rest and prayerfully soon I will be out and about with my family again.
If you would first praise God for the fact that the cancer never spread!  Then pray that my chest pain is gone by Monday.  I don't want anymore doctors appointments or surgeries or anything else! I just want to get healthy.  I want my twins to get healthy and get home.  I want to be healthy by the time they get here.  That was the plan after all, to have the surgery so that when they get here I am all done with no more surgeries in sight.  
Thank you all for your faithfulness, encouragement, love, prayers, and words of wisdom.  

Nothing like a trip to the ER and more

On Sunday I had some pain in my neck and shoulder.  It made it uncomfortable to sleep but I thought, I just had surgery on my neck, it's probably just irritated from that.  I had stopped taking pain meds on Saturday because I didn't think I needed them.  On Monday I was feeling good, so I walked just over a mile to pick up Ethan from school.  By the time I got home I was tired.  But Dylan got off CPAP that day and I HAD to see him.  So, I rested and headed off to the NICU that night.  The next two days I was having some back pain and some chest pain but thought I would wait it out and see what happened.  Jake and I headed to the minute clinic at CVS yesterday evening hoping for a quick diagnosis of something curable.  I was fine :-/  Trust me, I was not fine!  I went home, tried to go to sleep.  By the time I got around to asking Jake for some IB profin I could hardly breath! No position was comfortable.  I couldn't sit, lay down, stand.  With every breath it felt like I was being stabbed! So, off to the ER we went.  I was seen quickly and the staff was wonderful.  I had a ton of tests because they wanted to rule out a blood clot in my lung.  After a few hours in the ER all my results came back clean.  My diagnosis was that I over did it, let the pain get too far ahead of me and needed so serious pain killers.  The pain meds they gave me at the hospital made me dizzy and woozy.  Even if I could drive, I couldn't.  I got home, got to sleep a little and have spent the day today in my pajamas napping and pumping.  Oh, and taking rx strength IB profin.
I lost my train of thought because the NICU just called to tell me that Dylan is ready to be transferred.  When I asked about Logan they didn't know.  So I am now not resting, getting up, dressed and heading out the door to the NICU to make sure both boys are being transferred at the same time!

NEW DAY:
Today is Thursday and this morning we got the call.  The boys are being transferred at noon!  I began to make arrangements for a sitter tonight so we could go and visit them in their new room :-)  YAY!!  A few hours later, we got another call.  The transfer is off.  We don't really know why other than our insurance company stopped it :-(  So, now we wait again and unless they get transferred this evening they won't move until Monday.  Too bad too because we were really really looking forward to having them so close.  I could take multiple trips a day if I wanted to with them so close.  But, sadly, looks like that is going to have to wait.

On another note, I saw one of my doctors today and there was some awesome news! They found 4 cancerous tumors in my thyroid.  When the checked the surrounding lymph nodes they found no cancer! They got it all!!! Which means no radiation pill, no 10 days away from my family, and no more cancer!  I am so thankful just give all glory to God.
I had a hard time going forward with the surgery.  Up until the day I went in I was feeling great!  I didn't want to have the surgery but I am so glad I did.  My prayer was that if God didn't want me to have the surgery he would in some way stop it.  He didn't and so I went forward.  Now I am officially cancer free and trying to recover from my chest pains.  I am not sure what is going on and I will be seeing the surgeon tomorrow. Prayerfully he will have some answers as to my pain and the lack of voice.  Medically speaking my voice should be back, but it's not :-(  Everyone here is getting frustrated.  I am frustrated no one can hear me, Jake is frustrated, the boys are getting frustrated.  We are living in a discouraging and frustrating state right now.
I have decided this is God's way of teaching me not to yell at my kids so much.... yes, I yell at my kids. So, pray for my temper, pray for my heart and pray for my voice to return sooner rather than later!

recovery

Much to my surprise the pain from this procedure is nothing compared to the pain of a c-section.  I am doing well today.  The first two days were frustrating.  Not too painful but more just frustrating.  I have been aspirating on fluids and today is the first day I have been able to drink without choking.  For that I am so thankful!  I feel like this challenge has given me a new insight into the lives of at least 3 of my children.  The NICU experience of breathing but not getting enough O2, and now aspirating.  We use to feel bad for JT, and even get frustrated with him aspirating.  Now being on the other side of it and being unable to control it myself I know how frustrated he must have been.  How sad and how hard it was on him.  I am so thankful he is able to drink his fluids now without having to go through this.  It's a terrible and helpless feeling.  Thankfully, yesterday and today I have been on a few doses of IB profin and nothing more.  Usually a dose in the morning and then one in the evening when I am exhausted.
Since getting up and moving is good for me Jake and I are planning a quick trip to the NICU to see the boys.  As we hear from the nurses, both boys are doing well and are on the up swing. This week we hope to find out more about Dylan's kidneys.  He is off all extra medications and we will see how his labs come out throughout the week.  Please keep him in your prayers! The 12th will be the boys next eye exam and if everything looks okay they will be transferred to our hospital.  We are RAELLY looking forward to that!  A 7 min drive to the hospital, private room for the boys.... a few nurses we know from JT's stay in the NICU... all great things!  We are looking forward to that as well as to the free parking :-)  It's the little things in life sometimes, ya know. Anyway, this week could be a big one for us.  I will have 2 post op appointments towards the end of the week, we will know about the boys eyes, the boys might be transferred.... Exciting times!
Thank you for your faithfulness in loving us, caring for us, reaching out to us, praying for us.  Doing what you can from where you are.  We are so incredibly blessed.  Tired, but blessed!

1 Chronicles 16:10-12

10 Glory in his holy name;
    let the hearts of those who seek the Lord rejoice.
11 Look to the Lord and his strength;
    seek his face always.

12 Remember the wonders he has done,
    his miracles, and the judgments he pronounced,

my surgery

Yesterday morning Jake and I headed out to Fairfax hospital to see the boys and then head over for my surgery.  Both boys were doing well and looked great.  Dylan is going to be a little fatty like Ethan was.  After a quick visit we made our way over to the surgical center.  After we checked in there were few seats to be found.  Jake pointed out a seat and of course in all my jest (wearing my skins gear of course) I said "you sure you want to sit across from a cowboys fan?!?"  The man smiled and that began the easiest wait for surgery ever.  The man had actually played for the cowboys and we of course got talking sports and through that we discovered that we shared a faith in Jesus Christ.  He was a wise man full of support and wisdom for Jake.  We never did catch his name but it was a joy to spend time waiting with him.  Once my name was called we said goodbye and wished him the best.  Off I went to surgery.  Now if you want waiting details on that you will have to ask Jake, I was asleep :-)
When I woke up in recovery I was on oxygen.  Funny thing having NICU babies, I was on the same monitors they were on and my stats would drop just like theirs do.  So, now I know what they feel like when their O2 levels drop.  You are still breathing just not as deeply, not a full breath.  I knew I was fine but a few times Jake would give me a little shake and tell me to breath deep.  I did and my stats would come back up.  I ended up on O2 over night because by the time I got to my room I was struggling to breath.  The O2 helped a great deal.  I was able to breath with ease and not struggle so much.  Again, I am able to relate to all my little premies.  It's like God's insight into their world.  I am able to understand it all so much better now.
My struggles now are drinking without aspirating.  I have aspirated a lot these last two days and am unable to clear it out.  Please pray that my lungs clear out and I don't end up with pneumonia.   I did get one decent cough out this evening to which Jake and I both cheered for.  It's the little things in life sometimes.
I am also dealing with the pain.  I don't like pain meds but for now I will take them because it's the best way to heal my body.  My neck and throat are both swollen and moving my head is difficult.  All in all I am doing well.  The doctor said the tumor looked contained and from his eye it didn't look like the cancer had spread.  We will get biopsy results back next week.  So for now I am going to take time to rest and heal.  Your prayers mean the world to me and I am carried through these challenges by the grace of God.

Meet Logan!  He is dressed and off all breathing machines!  He has been doing a great job too.  We are so happy and feel so blessed by his progress.  On top of that, he had another brain scan and everything looks good!  

Today is a busy day for us.  Today we will get our boys off to school, head to the NICU for about an hour or so, then head across the hospital to check in for my surgery.  Yes, today is the day.  Today I will have my thyroid removed.  I am sad about this, not looking forward to it at all, but as many have reminded me... it's better for me to be here for my kids than to wait and let this thing grow and potentially kill me.  So my prayer requests are that you pray for my peace.  Pray for Jakes peace.  Pray for a steady surgical hand.  (I would like to keep my voice when this is all over) Pray for no reaction to the anesthesia.  Pray for my mommy heart as I will be out of commission yet again for about another month.  

I have received lots of scripture verses that I am so thankful for.  The Lord is my strength!  Let His will be done and not my own.  Let him use me and this life and these situations to reach others, to touch others, to call others to him.  Jesus loves me friends, I am in good hands... he loves you too!!

Big day

Last night I got a call from the NICU... Logan is off CPAP!!  This is huge and he continues to move quickly.  He had a good night with a few spells but the doctors are confident and are giving him a chance to regulate himself.  For now he is doing a great job and I hope and pray when we go tonight we will get to stare at that handsome little face instead of a huge breathing mask.
Dylan is also doing well.  He still needs his CPAP and that is okay.  His feeds are going up quickly which is great!  He is doing well and we continue to pray that the change in caloric formula was the problem and that his kidneys face no more challenges.
(As I am writing this I am just SO excited to get to the NICU tonight.  I know it's wise to live in the moment but I just can't wait for this day to be over and to get there!!)

So, for now I guess that's it.  The nurse just told me to bring in some clothes for the boys!  They can both wear clothes now :-D  SO FUN!!! I just wish there beds were near each other so we could get their first "twin" picture.

Ok, one excited momma checking out.  Many blessings and thank you for the prayers!

The boys

I haven't updated because at this point we are simply waiting to see what's next.  For now Logan is doing really well and should be off CPAP later this week.  Dylan is also doing well. He is on CPAP and is gaining weight.  My latest blog is still the most up to date.  I won't have any answers until later this week... I hope.  right now our focus has changed a smidge to my upcoming surgery.  As of now my surgery will be this Thursday.  I still have one question left for the surgeon and the answer will either cancel the surgery or confirm it.  Jake is praying for no surgery, I would love not to have surgery too.  I just think that if I am going to do this, this is the best time.  So please pray for us.  Pray for clear guidance and direction.  Pray for God's provisions.
So the latest blog is the most up to date and I will inform you of any changes to the boys as soon as I know of them.  I will also let you know about my surgery when I know that too.

For now please indulge me as Ethan would like to write and update you as well...  so here is Ethan.

we love logan and dylan.  we pray for logan and dylan and we pray that logan and dylan stay safe.

(yes, Ethan wrote and thought of that all on his own.  He is one incredible little boy and a very loving big brother!  We are so blessed to have him!)