MERRY CHRISTMAS

We won't be sending a Christmas card this year so I hope you will accept this.  Merry Christmas from our beautiful family of 7! We love and cherish you!

blood work and prayers

The boys are all doing very well and adjusting to a life of 7! The twins have been having regular (weekly) weight checks because although they are gaining weight it's just not enough.  So we will go back again next week for another weight check.  Here is what you should pray for! Pray that the boys each gain an oz a day at least.  This means Dylan will weigh in at 6lb 3oz and that Logan will be 5lbs 14oz

With that the boys continue to have regular labs drawn.  This is new to me as it's something Justin didn't have to go through.  On Monday we will be going back to the hospital to have some labs done.  Please please pray for good or shall I say normal results.  Right now it looks like Dylan might have a thyroid disorder.  Please pray against that.  His hemoglobin is high too but the doctor says that should work itself out.
Thank you for your prayers.  We feel so blessed right now.  Thankful to have all our boys home, thankful for the roof over our heads, the friends who are renting to us.  Thankful for the love and support of our church family.  Thankful for a wonderful marriage and for the fact that Jake and I continue to stand together to weather the storms this life has given us.  We are blessed.  Maybe not financially but in so many other ways, we are blessed and we are thankful.
Merry Christmas to you all!  Count your blessings from this past year and look forward to the blessings of next year.

PICTURES - The first few days together

Logan is on the left Dylan is on the right. 

Ethan is a very proud and helpful big brother
He's feeding Logan

Caleb is burping his baby as I burp the twins.
He too is a very proud, sweet loving big brother

Logan's homecoming.  The boys were all so excited to have him home.

I surprised Jake when I brought Logan home, he was one very happy daddy.

FAMILY OF 7!!

I just wanted to let you all know that Dylan is home! I went and picked him up this evening and brought him home!  Our family is now complete and we are so excited.  Thank you for walking and sometimes crawling this journey with us.  We are so thankful for your love and support.  Please keep both boys in your prayers as they spend the next however long with tons of follow up doctor appointments.  Both boys will be followed by an ophthalmologist as well as receive PT and possibly OT from the county.  Jake and I are thankful for the timing of the boys arrival.  Jake always takes off the week between Christmas and New Year's so it will be a good time of adjustment for us all.
Right now Dylan weighs 5lbs 8oz and Logan is hanging out at 5lbs on the nose.  We really need Logan to gain some weight, some serious weight!
Please keep us all in your prayers, pray the Lord would grant us some sleep here and there and pray for all of our boys to adjust and love one another.  Right now they do love each other a great deal.  Even Caleb has learned to be gentle and pat babies back.
Again thank you and enjoy a few photos below.  I will continue to try to update you on how the boys are doing but appreciate your grace in my timing.  The one thing I always tend to forget about with newborns is simply that my time management is out the window and I need to readjust.   What use to take 10min to get in the car and ready to go will now take close to 30!  EEK.

Blessings to you all!!

Logan sleeping sweetly in my arms.  

Dylan getting ready to leave the NICU and come home.

A momma knows

On Sunday when I went home with Logan Dylan had a very rough night.  An emergency x-ray was ordered and all of his feeds were stopped!  He had some respiratory issues and they were trying to figure out what was going on.  When I went in on Monday my goal was to learn to nurse both boys at the same time.  The nurses were a little hesitant because Dylan had been refusing all bottles since we left.  Logan and Dylan nursed like champs! Even Logan doesn't nurse as well at home without his brother.  It was crazy!  So I made it my goal to go back 2x a day to nurse them both.  Dylan was nursing so well but refusing bottles.  It got so bad at one point he was coughing and choking on the milk.  I mentioned to the nurse that Logan hated the formula he was sent home on and that he was refluxing, gagging and choking on it.  I then asked if we could just try one feeding from a bottle with just my breast milk to see if it was the bottle or the formula.   Momma knows!! It was the formula! Since the nurse spoke with the hesitant doctors Dylan has taken every single feed for almost 24 hours with no trouble at all!  I am so thankful that the nurse didn't write me off.  She heard me and took my request to the doctors.  I am thankful the doctors heard the nurse out and even more than all that, I am thankful it worked! I am not sure what the plan is going forward.  NICU has a thing about formula... they love it.  But Dylan has showed them that he can eat and does eat, just not nasty smelly formula :-) So for now we will wait and see what the next step is.  Will they wait and see what his weight does on just my milk? Will they try yet another formula? (remember the formula is what gave his kidney problems before) We will see, but for now, YAHOO!! Dylan is a super star and as I have always said, he is my firecracker! He will never let anyone push him around.  He has always let you know what he wants and what he doesn't want in a very loud voice.  Logan is more chill and laid back, Dylan doesn't take it from anybody, not even NICU doctors and nurses :-)
(Please know that I LOVE the NICU nurses and doctors we have encountered.  This is nothing against them at all.  I couldn't be more thankful for them.  They are gifted and they care for my babies when I can't.  I am simply saying that Dylan is not by the book.  It's more against him than them. haha)

life is full of surprises

Today I went to the NICU as I normally do.  I fed the boys, well, I fed Logan.  Dylan was too sleepy to eat.  While feeding Logan the doctor came in and said "surprise! someone is coming home today"  It's always great to hear but also very shocking.  I was totally unprepared!  Ahh, yay but ahh, but okay..... I decided to hold my tongue and not tell Jake and the boys.  I decided to make it a surprise for them too.  It took what felt like forever! Plus we had a pediatric nurse subbing in instead of a nicu nurse so she had no idea how to discharge us.  But we made it!  Logan is home.  Although it was wonderful it was also terrible.  Leaving Dylan was so hard this time.  I said goodbye but didn't want to leave.  I asked Dylan to help me out and be a better eater so he can come  home too because we all missed him.  Thankfully Logan can come with me back to the NICU you daily so that is a gift in itself.  Tomorrow afternoon Logan and I will head back to see Dylan.  Pray for Dylan that he does a better job eating all of his feeds.  Once he does that he can come home too.

Thanksgiving

This year we have so much to be thankful for.  The biggest news as of late is that both boys have healthy brains, past their hearing tests, have no heart problems, no kidney problems... basically they are doing incredibly well!! The only doctor we need to follow up with is an eye doctor.  You have to understand, when we left the hospital with JT we had follow up appointments with the neurologist, cardiologist, PT, OT, physiatrist, and ophthalmologist.  So you can imagine our joy in that we will do PT and OT with ITC (infant and toddler connection in fairfax county) and see an eye doctor and that is it!  A huge huge blessing!
Logan is just on the brink of coming home but I think they two of them are fighting to come home together.  Originally they thought he would come home today (Sunday) but he decided to have a Brady the other night and they want him to go three days without a spell.  Dylan has upped his feeds and is working really hard to get off the feeding tube.  So Logan won't come home until Monday or Tuesday at the earliest and Dylan isn't too far behind.  Once that tube comes out it's just a few days!  Jake and I are a little in shell shock as to what it's going to be like to have twins and 5 boys in this house.  Crazy days for sure.  Plus you add on all of Jt't therapy plus the twins ITC stuff... whew!  I can say I am very thankful I decided to have my surgery when I did.  I wouldn't have time to do it now! \
We are so thankful for the gifts and blessings we have received this year.  Although life is crazy we continue to count our blessings and give thanks to God.  If you don't hear from me for a while it's because the boys are home and I don't have a single minute to call my own.  Let the new normal begin!

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!)

Days like today

On days like today I feel normal.  I feel like this is how I want my life to be.  Today I feel healthy and strong.  Today I have little help with my family and I like it that way.  Don't get me wrong, we are SO blessed to have all the help we are being given.  We need it and we appreciate it and are abundantly blessed by it.  But it's a lot to process for me and the boys.  Today my house is quiet.  Jake and I got E and JT off to school, Caleb is napping and I am doing the things I am meant to do.  Sounds silly but I am cleaning the kitchen, organizing paper work for the boys, updating the calendar, putting laundry away.  This is the life I wanted, dreamed of.  Again, I know it sounds silly, but I have always wanted to be a stay at home mom and these days when things just feel right bless me.  Today will be a "normal" day and tonight we will go to the NICU to see the boys.  Today I am filled with joy, happiness, peace.  All gifts to be treasured and cherished.  In a week things will change yet again and I will be healing from yet another surgery.  In a week things will be exhausting again.  I am not looking forward to "in a week"  I am here today and happy today.  Can't ask for more... today I have my daily bread.

Trial and error

First we start with Dylan.  I spoke with his doctors yesterday and right now there is still no cause for what they are seeing in his blood work.  So the first thing they have decided to do is change the formula they add to my milk.  When they are so little they need calories but they can't eat the amount of calories needed so they add formula to my milk to boost the caloric intake.  Anyway, they think his kidneys were having a hard time processing the formula.  (this is all fine with me b/c I don't like formula and don't give it to my kids.  I gave it to JT for a short while when he came home from NICU but God blessed me with a great ability to nurse my children... so I take full advantage of that.)  So they have changed his formula and are suppose to begin his feeds again today with the new formula.  If things work out then it was the formula.  If the blood work goes wonky again then there is still an undiagnosed problem and the trial and error will begin in another way.
The good news is Dylan is doing very well on SIPAP and they are considering taking it down a step to CPAP.  YAY!!
Today, both boys had their first eye exam.  I haven't spoken to doctors yet but am planning to call as soon as I have a quiet moment.  (BWAHHHAHAHAHAHAHAHAAAAAAA!)  Cause that happens often.
Logan continues to do great.  He still has brady's (spells where his heart rate drastically drops) but he is able to bring it back on his own and very quickly.  Due to how well he is doing they are talking about taking him off the machines next week!!!! HUGE progress.  Of course, Jake and I have been through this all before so we know that just because they come off of a machine doesn't mean they won't go back on.  Sometimes they do well for a few days but it's such hard work for them to breath all on their own they just get too tired and need the extra support.  So prayerfully the doctors don't rush and the timing is right for both boys.

We are so thankful for your prayers.  Your support, emails, text messages, phone calls.... mean so much to us.  We are both tired these days and not looking forward to my surgery which is next week but we do believe the Lord will carry us through.   Yes, I am going forward with the surgery.  After speaking to my doctors I have decided to stay on track.  Although, my prayer is that if I am wrong (I have been known to be wrong from time to time, but don't tell Jake) the Lord will intercede and stop the surgery somehow.  If that happens than I will trust in God's plan and wait on the surgery.  So pray for God's hand to move and direct my path.  Pray for our strength and energy.  Please pray that we don't get sick and that we stay healthy.  The 3 big boys got their flu shots today.  Continue to lift up Logan and give praise to God for how well he is doing.  Pray that the formula was in fact the problem for Dylan's kidneys and that while on the new formula he will be able to regain strength, energy and catch up to his big brother (by 2 minutes).
Many blessings to you all and know that as you pray for us we give thanks and praise for you!

Best visit yet

Last night Jake and I were able to get to the NICU to see the boys.  I was excited to hold Dylan, to pray over him and just love him the only way I can right now.  I also wanted the results of the tests!
Dylan laid on my chest for over an hour before he was ready to go back to bed.  Normally he lasts about 30-40 minutes.  An hour is huge for him and so special for me.  This time they actually had to come and turn all of his machines down b/c he was so comfortable the machines were helping too much.  It was a gift to me that he wasn't struggling to be with me but was just enjoying his mommy time.  Jake went and got to hold Logan on his chest and Logan loved his daddy time too.  Logan continues to do well with minor set backs.  Yesterday they stopped his feeds for about 3 hours because he was spitting up a lot!  Logan is on iron and often their tiny tummy's don't react well to it. Thankfully his stomach settled down and he was back on food before we left.
Now for Dylan.  The test results didn't show anything.  There is still no "reason" for his blood work coming back the way it is.  He will have more tests done today as well.  The treatments they are doing are working.  His blood pressure was good last night and his levels are better.  These are great things except it could just be masking a problem.  Thankfully the doctors know about it now so they can watch everything they do more carefully.  The nurse told me last night that they think he could have had a reaction to the formula.  When you have NICU babies they need extra calories.  So they take formula (usually enfamil) and add it to my milk.  That way they get a boost of calories without a boost of food.  Their tiny stomachs can't handle the amount of food they would need to eat in order to get the amount of calories.  So yesterday he was just on my milk, no formula.  Once things look good again they will try to use similac.  If he reacts poorly to that they will try other things.  I personally don't like it when my kids are on formula and I know I have hardy milk... all my kids, even JT were fat while nursing.  So for now, my prayer is the formula was the problem.  It's an easy fix - no formula!  Please continue to pray that his PDA is not the problem.  Continue to ask for his healing and continue to ask for wisdom for the doctors as well as clear test results.  I loved every minute of our visit last night (I am paying for it today.  Midnight is much too late for this momma to go to bed) I thank God for the rejuvenation our visit gave me last night.  The power and strength to go on this long journey God has placed before me.... again.  Maybe I did it wrong last time?!?  (kidding)
Thank you all for all of the prayers.  There aren't many feelings worse than feeling like a helpless mom but that is where I am.  I can't do anything for my boys except ask for prayer for them and try to hold them when I visit.  This is out of my hands.  So thank you for being there, for praying and loving us.  We know that we are being prayed for across the world!  Really and truly, there are people across the entire world praying for us and for our family.  It is the most incredible and humbling feeling.  May the Lords hand work in the lives of others because of the suffering we go through.
Many many blessings to you all!!

a murmur and more

Dearest friends,

This blog is to ask for specific prayers for our sweet little Dylan.  I went to the NICU today and learned that Dylan isn't doing well at all.  His kidneys are not functioning properly and they don't know why.  Today a kidney specialist saw him and he had a ton of labs done.  The doctor was great and took time to answer my questions so in bullet points I will try to get all the information across.

 - blood pressure is low - could be part of the problem
 - PDA could be a large reason kidneys are struggling, PDA surgery might no longer be a choice because his kidneys won't be able to process drugs needed for surgery
 - PDA - the doctor told me he heard a heart murmur very clearly today and said if it's clear tomorrow he will order another echogram (which Dylan had this week and it came back looking good) to see if valve has gotten larger again.  (again could be part of the problem)
 - kidney could be damaged - if the kidney is damaged there is hope it can "fix itself" so that is a waiting game
 - There is a possibility of infection.  If that is the case they can treat infection with meds.

Right now we are waiting and praying.  I am scared for my little boy.  I am praying fervently and begging God for his mercy to pour down onto these sweet little boys that came much too soon.  Please pray for me and with me.  So many of you have been so faithful with your prayers and they are carrying Jake and I through this.  There are times I just don't know what to pray.  The words leave me and I have little to say.  I know God knows my heart and for that I am thankful.  But more than that, I am thankful for you and for your prayers.  I know that when I can't you do.  It's such a blessing to know it's okay to take a backseat.  (not my nature either)
So please pray for wisdom for the doctors and clear test results (they should come back tomorrow).  If it's the Lords will pray he would heal Dylan.
God is the mighty physician, the great healer.  He CAN do this if it's his will and I am praying it is.

Thanks so much friends!!

Flip Flop

Flip flops are in fact my favorite kind of shoe to wear but that's not what I am talking about.  Logan and Dylan have flip flopped again!  In the beginning Logan was bigger, then Dylan took off out of the gates and was flying through NICU life.  Now Logan is back in the lead.  I feel like a broadcaster describing a horse race or something.
Logan is eating like a champ, gaining weight and is on very low oxygen.  He is requiring iron these days but it's better than another blood transfusion.
Dylan and his PDA are holding steady.  The sipap has helped him a great deal and his oxygen has been lowered a great deal as well.
To be honest, I am kind of waiting for the day we go in and Logan has slipped up a bit giving Dylan the lead again.  We will see if Logan holds true to stereotypical older twin-isms or if Dylan will give him a run for his money.  Only time will tell.
Most days I call the NICU there isn't much for the nurses to tell me.  They are doing well, they have pooped...yes, these are the things I get told over the phone.  So for now, keep lifting them up.

On a side note, I had all of my pre op testing this week and I am considering having another biopsy done.  I will wait to talk to my doctor but the nodule looked different to me on the sonogram than it did the first time.  Pray for me.  Pray for wisdom.  I believe I could be healed and might not need surgery.  I am going to confirm it with doctors first and only have a week to get it done so pray for the Lord to open doors if there is a path other than surgery.  What a miracle, gift, blessing that would all be!  I would love nothing more than to be a walking miracle!!!!!

2 pounds 13 ounces

Both boys weighing in at 2lbs 13oz today!  Almost 3lbs!  I have some chunky monkeys on my hand! 

Both boys have been doing well the last few days.  They are off most medications and are managing on low oxygen.  Dylan is back on sipap and Logan remains on cpap.  There really isn't too much to report other than they still have a long road ahead.  I was just excited to share that they are almost 3 lbs.  Tonight I hope to make a visit to the NICU.  This week is full of challenges for us as I have all of my pre op appointments, Ethan's parent teacher conference, Ethan's field trip, JT's therapy sessions, JT's birthday party (I can't believe he is 4!!) 

So pray for the boys.  Pray they continue to fight, grow and develop.  Pray for time management and pray for the endurance and strength we will need to make it through this week.

Brick wall

Most of you are not parents of NICU babies but for those who are, perhaps you can relate.  There comes a time in the NICU where you tend to hit a wall.  The boys will be 1 month and that seems to be the time I hit the brick wall.  I did the same thing right around the same time with JT.  The exhaustion from taking care of the boys at home.  The mental exhaustion of feeling like you aren't doing enough, are doing it good enough, aren't there for all of your children.  The physical exhaustion of driving 45 min to the NICU, trying to spend time with each boy, driving home... feeling like your day is a wash...It's exhausting (in case you didn't get that already) It's a great place for Satan to lay and wait, and that's just what he did.  Yesterday was filled with me being annoyed, angry, frustrated, in physical pain and yes exhaustion.  I didn't realize it until the evening but it was there all day, building up, like I was reaving my engine just to smash full speed into a brick wall, and I did.  I sat, crying, sobbing really, asking God to change me, to change my heart.  God has challenged us more than others (don't get me wrong, I know everyone has struggles and challenges, this is just how I feel about it).  But God has also blessed us more than others too.  Yesterday I could have complained about the beautiful sky and felt justified.  I don't know why we have to face what we face.  A child with special needs, cancer, 3 NICU babies, financial struggles, and so on.  I do know that God has given us an amazing church family who answers every call in loving us.  I do know that God kept us from moving out of the area because He knew what was ahead and he loves us and cares for us and wanted to keep us in a place where we would be loved and cared for.  I know that God blessed us with this house to help with our financial struggles (although no cancer and no premies would have also helped with finances.  tee hee).  It's funny, I know all these things but still last night that brick wall was there and when you pile it all on, it's a load too big to carry, even for me, the strongest woman in America! The point is, as hard as I try, as much as I do, it will never be enough to carry the load I have been given.  The best part is, when we turn to God in our brokenness, he doesn't stand over us as a frustrated father saying "I told you so, why don't you listen to me...." He leans over, picks up his overly tired child and hold me.  He wipes my tears away and says "let me love you, let me carry you, let me take you the rest of the way".  Now, being a stubborn person I am sure there are times I will feel energized and leap out of his arms saying "I've got this now, thanks!" but I hope and I pray that I allow God and those he has placed around me to carry me the distance I cannot go alone.
My friend told me last night I am running a marathon and doing a great job.  I have never run a marathon but I have walked one (avon walk for breast cancer).  Those people on the sidelines cheering you on, telling you can do it are rejuvenating.  They serve more of a purpose than they know.  They keep you going, they keep you fighting.  God has my marathon lined, packed really with people cheering me on.  They can't step in and take my place, that isn't there purpose.  They can stand there and love me, encourage me, and cheer me through the finish line.  It's such a gift.

Now, if you are still reading I am sure you want to know about the boys.  So here ya go!
Logan has an eye infection which has placed both boys on isolated contact.  This means we have to wear gowns, wash a few extra hundred times... really not much different than before, just added garb. I got to hold Logan last night and he did a fantastic job!  He was sucking on his binki like a champ which is a fabulous sign of development.  It brought me such great joy to see him, hold him and watch him suck the life out of that binki.
Dylan is doing well.  I think many of you heart the incredible news that his PDA is getting smaller! The doctors are going to keep a close eye on him but I am prayerful it will close soon.  Please pray for his bone development.  The drugs they give him (he's still on them) to help close the PDA block calcium and potassium from being absorbed.  The doctors want to try to switch his medication soon so that his body can get those nutrients.  Please also pray for his strength.  Overall he is doing well but he is still on a very high CPAP.  His O2 levels are stable but the CPAP is high.  Please pray that in the next few weeks both boys can be weened more off of CPAP.  They both continue to eat, eat eat! They are gaining weight and are able to handle their food well.
Please pray for my time management.  This week is insane as I have all of my pre-surgical appointments and still want to try to get to the NICU as often as I can.  Pray for wisdom as we discuss moving the boys to a closer hospital.  They are at the best NICU there is so moving them is a tough decision.  Pray for both Jake and my exhaustion levels.  Pray for endurance to finish the race.  Pray for guidance, supernatural strength, energy and love for our children.
God is good and brick walls need to be run into ever so often.  I would like it if my next one was a while off but who knows.  Pray I have learned and that I lean and rely more on God than on myself.

lots has happened

I am trying to think of where to begin.  I tried to update a few times but our laptop almost always seems dead these days :-(
I asked the nurses about Dylan and when his next heart scan would be, they said most likely a week or two.  Today however I spoke with his doctor who had ordered a scan for today! I am waiting for Jake to get home to call the NICU to see if the results are in.  I think they were doing the scan while I was there this morning.
Dylan has had some rough days.  His CPAP is still rather high but his O2 levels are coming down.  Logan is doing really well for the most part.  He had a bit of a rough day yesterday but they are working things out.  Logan also has some eye drainage so they are doing a test to see if he has an eye infection.  If so both boys will be on isolated contact.
I feel like there is so much more to share with you but at this point I just can seem to think of it.  I think my focus is on getting those test results for Dylan's heart and Logan's eye.

I will try to update again sooner rather than later when I have my thoughts organized.  Sorry this isn't much of an update.

prayers for Dylan

This morning I got a call from the NICU wanting to give me an update.  This isn't a very unusual thing, they call at least once a week to give us an update.  Although Jake and I go almost daily we don't often see the doctors so they call and check in.  This morning nothing was too different, since we are there often we know most of what they tell us.  Then the other shoe dropped.  Dylan has PDA, again, which we knew about.  Sadly though, it's getting worse.  PDA is basically an open valve in his heart.  It's open in the womb but suppose to close after birth.  It's very common in premies.  They usually tend to close within time.  Dylan's is not closing, it's getting larger.  Today the doctor heard a heart murmur, something not heard before.  They did an echogram and it showed the valve was larger.  Friends, we need a miracle!  If the valve continues to grow it will mean open heart surgery for Dylan.  Please please please join us in praying for a miracle!  Pray this valve not only closes but closes quickly.  Pray that as the doctors follow him and his heart that they will be stunned by Gods goodness and glory.  Not to be selfish but with all we have on our plates I really really don't want Dylan to have an open heart surgery!  I am scared.  Trying not to be, but I am.  I am doing my best to lean on the Lord, trust in Him, in his plan and good works but I am scared.

Please lift up Dylan for a strong and healthy heart.  Pray for Jake and I that fear would not make it's way into our thoughts and hearts.  Pray that we will trust in the Lord with all of our hearts and lean not on our own understanding.

Philippians 4:7
And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. 

Oh what a night!

Last night Jake and I went to the NICU.  I was really looking forward to holding Logan again.  It took some time to get him ready so I went to visit with Dylan while I waited.  Dylan was a maniac!  He was on his tummy which is where they are usually very happy.  Nope, this kid was picking his head up and smashing his face into the bed.  He managed to pull out his feeding tube and knock off his CPAP mask! Because the boys nurse was with Logan another nurse had to put down another baby to come help us.  I tried, but man, I am no nurse!  It was time to hold Logan and the other nurse was working with Dylan so off I went across the NICU.  She put Logan in my arms.... he was not having it!  He turned purple, his stats dropped, he had a brady.  He was SO not interested in being held by me.  He was very quickly put back into his isolete.  I of course was sad but one thing you learn quickly is that you do what is best for them and not what is best for your heart.  As a mom all you want to do is hold and love your babies.  The problem is their bodies aren't ready for it.  If you think about it they are suppose to be in my tummy in a bubble still.  No one touching them, no one moving them, bathing them, pricking their feet for blood labs.  They should still be floating around.
I know most of you know Jake and I well and I know most of you haven't had NICU babies.  Jake and I tend to make the most of our experience.  We find the joy and the jokes in almost any situation.  Last night I told the twins that if they were going to be such stinkers when we come visit I will see them when they get discharged and then they are stuck with me!
Other than the two of the acting up last night they are both doing very well.  They are both right around 2 and a half pounds.  They are both doing very well on CPAP and they are working hard to reduce their need for extra oxygen.  Right now our prayers are for Dylan's lungs to clear up.  Really, our prayer is that they keep going on the path they are on.  They are strong (clearly strong willed) and they are working hard.
We have asked the hospital to discuss when we might be able to move them back to our hospital.  I think I have said before, right now we drive 45 min each way and when they move it will be closer to 7 min.  Yep!  We are all looking forward to that!
I think that's it for now.  All in all everyone is doing well and hanging in there.  We are so thankful and blessed!

more progress

Last night I spoke with the boys nurse and they had a great day!  Both boys officially weigh over 2lbs.  Dylan weighs 2lbs 7oz and Logan weighs 2lbs 4oz but is catching up fast! Logan may have been behind in the beginning but man he is moving along nicely.  His feeds are increasing rapidly, he is maintaing his breathing and heart rate much better too.  Dylan must have been doing so well in the beginning he is tired now.  He is still on si pap but thankfully his o2 levels are decreasing.  (meaning the extra o2 he is getting is less and his lungs are doing more work) He is a happy healthy eater and enjoys noise (not so normal for nicu babies but normal for him.  good thing too, he is coming home to noise and chaos!)  Right now they are concerned Dylan has an eye infection.   If so, both boys will go on isolation contact.  Basically it means gowns and gloves need to be worn whenever they are cared for.  Even though Logan is fine right now because they are twins and because its an infection both boys will be treated the same. We are also waiting to get results back on Dylan's chest x-ray.  The last one was "hazy".  Basically means there is gunk around his lungs making it harder for him to breath.  Prayerfully the hazy report is clearing up!

Its funny at night to sit and watch the boys monitors, they are so in sync with each other.  Even the nurses comment on it every time we are there.  Their heart rates are almost always identical, breathing rates, similar and close. One nurse said that they don't even know the other one exists, I disagree.  I think they do know, I think they miss each other.  They are still on opposite sides of the room so when Jake and I hold them we aren't able to see or talk or know whats going on.
Jake and I have talked at great length about having the boys moved back to the hospital that they were delivered.  The hospital is a 15 min drive verses the 45 min. drive we are taking now.  Up to date we have driven over 500 miles just to the nicu and back.  With a 15 min drive we can easily spend more time with them and not feel so rushed.  The boys will also have a private room and they will be in the same room too.  Which means I can hold them at the same time, talk to them both.  We ask for prayers for wisdom in moving them.  They are receiving such incredible care and we have already bonded with some doctors and nurses.  (if you have ever had a nicu baby you know the bond that occurs)
Leaving will be hard but at the same time we think it's best for our family as a whole.  Pray we wait patiently as we wait to hear from doctors on their suggested moving time.  Pray after the boys move they will remain stable and continue to grow as well.
I will try to update again once we get new info.  Thank you for praying!  We are so blessed.

If not one then the other

The nurses in the NICU all joke that Logan and Dylan are very connected.  Although they are on opposite sides of the room they tend to act up at the same time or take turns keeping the nurses running back and forth between the two of them.  Little jokesters.
Today we got an update from the doctors.  Logan is doing extremely well!  He has downgraded his care back to CPAP and isn't on any extra oxygen.  His skin looks great too.  Dylan on the other hand has been sliding back a bit.  It's to be expected but it's always a little frustrating.  He is now on SiPAP and his oxygen is in the 40's.  He use to be in the 20's but has needed extra O2 the last few days.  He also didn't tolerate being held by me very well yesterday.  I had to put him back in bed after abut 40 minutes b/c he was just too over stimulated.
On the positive, both boys now weigh over 2lbs!  YAY!!!!  They do continue to grow and strengthen and act up, just as little boys do :-)
Please keep them both in your prayers.  We continue to praise God for good test results, scans, feedings are going well and they still have never been ventilated.
Pray Dylan is able to get off SiPAP soon and back on CPAP and that they are able to continue to up their feedings.

Tonight Jake and I will go in and attempt to hold them and love on them again.  Pray it goes well and the boys are able to tolerate their time with us.
(NICU babies senses are heightened.  They haven't had time to fully develop so every touch, every sound, every movement is extreme for their little bodies.  Being held can just be too much sometimes.  They are out of their warm box, their skin is being touched, they can hear every voice, beep, noise... it can just overload their system.  I am praying Dylan can better tolerate being held in the near future but I am also fully aware that it can take some time.)

getting it all together

I realized that between facebook updates and posting here I feel like I have missed some information.  So I am going to try to make this as much of an update as I can.

Logan:
Logan's skin is looking much much better.  He still has some burn type marks from some of the leads but overall his skin just looks better.  Logan is on high doses of caffeine.  This is to help him remember to breath and regulate his heart beat.  (I have no guilt having a cup of coffee, I mean, he needs the caffeine :-)  There has been no word on an infection as we thought he might have one early on.  I am guessing no news is good news and since all of his other test results have come back with great results I think they aren't too worried.  His brain looks good, his heart looks good, his levels are all okay.  If he would just remember to breath a little more on his own he would be doing awesome!  Great news on that. (the breathing and maintaining heart beat) Last night his nurse was changing things out (they do it every evening and morning) His SIPAP hose and mask fell out of the isolate and hit the floor. That isn't the good news, the good news is that it was off for over 1 minute while she cleaned it and changed out the mask and he was able to maintain steady breathing and a stable heart beat.  These are the first steps doctors want to see before they lowers his support systems.  Maybe in the next week or so he will be back on CPAP.

Dylan:
Dylan is having difficulty keeping steady blood sugar levels.  They test his blood more frequently to make sure everything is oaky.  With the amount of times they take his blood he was in need of another blood transfusion.  He had that yesterday and is back under the bilirubin lights.  Dylan is processing food well and is over birth weight.  He remains on CPAP and his O2 levels are a little higher than we would like to see.  He started off in the 20's which is awesome and has slowly been needing more O2.  He is pretty good at breathing and maintaining a steady heart beat.  If things head south (or he has a spell as they call it) he is rather good at pulling himself out and getting back on track.
Both boys are wiggle worms, hate to be messed with, cry for diaper changes... all good normal signs.  Tomorrow night Jake and I will head to the NICU and I will get to hold at least one of them if not both of them for the first time ever!  When JT was born they let me hold him for a minute or two before he was whisked away.  I have yet to hold my babies.  I am sure you can imagine how excited I am!  Today and tomorrow can't end fast enough!
Truth be told the twins are doing remarkably well.  They are going to take strides forward and slide back but overall Jake and I are pleased and thankful they are doing so well.

If you would, our biggest prayer right now is the health of our household.  Ethan has come down with a few minor illnesses, JT and Caleb have both had a stomach virus.  We need our house to be healthy.  If the boys end up getting the flu we have to stay out of the NICU for about 2 weeks!  We will all be getting our flu shots this week to help with that.  Please pray for Jake and I.  The only time we ever get really really sick is when we get the flu shot.  We don't normally get it but if we want to be around the boys without masks and gowns at all times a flu shot is mandatory.  We aren't looking forward to it and are hoping and praying it will in fact keep us healthy through the flu season.  We need supernatural health over here, for everyone!
Please keep all 5 boys in your prayers as they are all making strides and adjustments.  Ethan has school testing in a few weeks which we hope he does well on and is able to focus.  He is SO smart!! JT is doing well and I think we will see the most change in him with the boys do come home.  Caleb is having some serious attachment issues.  I can't leave the room without him screaming for me.
I said it with JT and I will say it again; there is nothing normal or right about having to choose between your children.  Having to leave children to go somewhere else to visit and see and hold other children.  It's terrible and I look forward to the day both boys come home from the hospital.
Lastly, pray for Jake and I.  We have the choice to move the boys to a closer hospital when they are a bit older.  Pray we move them when the time is right.  That God would guide our decisions and make it an easy and clear decision.

Dylan's results

Last night we were able to get to the NICU again.  Always such a blessing.  The boys had a lovely night nurse who told us that Dylan's brain scan came back CLAEAN!  I cannot express the gratitude and praise I have to the Lord in these moments.  You have to understand, having been through this before there are certain milestones we or I (Jake is more relaxed about it than I tend to be.) wait for.  When JT had his second brain scan we learned of his brain bleed and his cerebral palsy.  When JT had his heart scan we learned he had an open valve in his heart.  All we have to go on is what we have already been through.  With each passing day and each passing test, scan, result we are relieved.  So, I cannot express my deepest gratitude towards the Lord for the gifts and blessings being bestowed upon us and upon our twins these days.
They are both out from under the lights, they are both still breathing on their own.  Neither of them has a brain bleed.  Dylan does have some blood sugar issues and an open artery right now but the kid is incredible!  Dylan born at 1lb 15oz is now 2lbs 3oz!  Logan who has been struggling and lost over a pound since birth is doing so much better!  He went from 2lbs at birth down to just under 1lb and is now 1lb 14 oz!  I know it's so tiny and so small, but it so huge too!! They could be struggling so much more than they are.
I have had so many people tell me they are praying for us.  I know they are!  I know there are people are there praying the prayers I can't right now.   I am thankful that they stand up for us, with us in times to trial.  People who don't know the Lord might not understand all of this and it makes me sad.  But my hope is in the Lord.  My joy is in the Lord and I am ever thankful for his gifts in my life!

Please continue to pray for the boys health and development.  They still have a very long road ahead of them.  Pray for our hearts towards those who are making things more difficult for us instead of easier.  Pray we would have love and compassion on them.  Pray the light of Christ would shine through us as we endure these trials.  Pray for our son Caleb.  He is only 19 months old and having some attachment issues as we often leave to go to the NICU during the day.  Pray for Jake as he is Mr. mom, still trying to work some, run the household, the finances... He has so much on his shoulders right now.  Please remember to praise God for my incredible husband and remember to lift him up for strength, endurance, peace, and supernatural energy :-)
Pray for Jake and I as we begin the journey of our next "adventure", my surgery.  The doctors appointments for that begin this week and surgery is scheduled for November 7th.
(For those of you who are following the boys and have no idea what I am talking about, I have thyroid cancer and will have my thyroid removed on November 7th.  Another 2-4 week recovery for me)

Thank you all and may you see the blessings of the Lord in so much of what you see today!

great news

Last night Jake and I were suppose to get to the NICU as a friend from church came over to sit with the boys.  Sadly, we never made it.  E stayed home sick with a really bad chest cough and we didn't want a friend stuck with sick children at night.  Plus we want to keep Logan and Dylan as healthy as we can.  So last night we called the NICU to check in.  We spoke with their lovely nurse Ashley.  She informed us that Logan had a great day.  He had a few Brady Cardias but came out of them with little hands on stimulation.  This is a huge improvement.  He also had his second brain scan.  This is what I was most concerned about.  JT had a brain bleed called PVL.  It's also when we learned about his CP.  With all of Logan's issues I was concerned.  HUGE PRAISE!  His scan was clean!! No bleeds at all! I told the nurse last night she made my night!  Dylan will have his brain scan this morning and we hope to get to the NICU tonight if possible.
Please pray for Dylan's brain scan to come back clean.  Pray for his blood sugar levels as they are very unstable these days.
Please also continue to pray for Logan.  He is still on more respiratory support than Dylan.  His skin is also a big problem as they are beginning to find sores on him.
All in all we are so thankful and pleased with the results of the tests so far!  I am so relieved and grateful to God for these results.
I will try to update with Dylan's results when we get them.

A few test results

In the last few days the boys have had a few tests.  One of the tests was a scan of their hearts.  Totally routine, JT had the same test done.  They are looking for something called PDA which is essentially an open artery leading to the heart.  It's open in the womb but is to shut once they are born.  With premies it often stays open and needs to be monitored.  Logan, who continues to struggle a bit was thought by both the doctor and us to have the open artery but he doesn't!  Praise be to God one less struggle for Logan to face.  His heart is perfect!  Dylan on the other hand who seems to be handling things well does have a slightly open artery which they will monitor over the course of his NICU days and after if need be.
As far as breathing is concerned, Dylan remains on CPAP and the O2 they give him remains low (which is a good thing)  Logan was upgraded in care and downgraded in independence.  He is now on SIPAP which gives his lungs a little reminder to breath every so often. Still a step above a ventilator which is also another blessing.  We are praying he can maintain his breathing on SIPAP and not need to be ventilated.  Logan's O2 administered also remains low.
Lastly, both boys are out from under the lights (bilirubin) which is awesome!  They could both go back under the lights but for now we get to see their eyes when they open them.  Today we got to spend a little time with Dylan while he was awake.  Looking at us through the glass of the incubator.  He was a great joy to both Jake and I.  Logan slept the entire time but we still got to see his face more than before.
All in all the boys continue to fight and are doing well.  The boys are both gaining weight again which is awesome and are growing in length as well.
Please continue to pray for Logan's very sensitive skin.  They had to move his leads to other parts of his body because it was causing severe rashes and burns on his skin.  He also tends to forget to breath and his heart rate continues to drop drastically.  He has great difficulty coming out of these episodes.
Dylan lately has been doing well.  Right now they are trying to balance his medications as his body acids and blood sugar is somewhat unstable at the moment.
Please pray for the 3 at home, especially Caleb.  We tend to go to the NICU while Ethan and JT are at school leaving Caleb home with someone.  He is starting to notice and is getting very upset lately.  Pray for us as we do our best to keep things as "normal" as we can for the boys.  Please continue to pray for my healing.  I am doing well and am off most pain medications.  I just want to hold my babies again.
Lastly, praise God with us for the care we are receiving from our church and friends.  We couldn't be more blessed by the meals, prayers, babysitting, visits, love and support.  God certainly knew what we needed and we are so very thankful for His mercies.

two peas in a pod but each their own

I might have had two peas in a pod and they might be close to identical in weight, length, head size... but man are they doing different things.  Dylan continues to do very well.  His feeds are slowly going up, his O2 is going down... for the most part he is holding steady with perhaps a slight incline.  Logan on the other hand is a hot mess!  In just the time we were there today his heart rate dropped drastically 3 or 4 times.  Now, Jake and I have some experience with this (they are called brady cardias) because JT use to love to have them frequently.  Logan however needed a lot of stimulation to get himself back on track.  Granted he did do it himself as in no need for further medical treatment but it was not fast.  Logan had a platelet transfusion last night and his platelet count is up! yay! Today he had a sonogram of his heart.  They think an artery that is in babies in the womb but needs to go away once born is still open and causing some problems.  The cardiologist hadn't read the results yet so I am hopeful I will hear something tomorrow.  Last night they also collected a urine sample from Logan to test for a virus.  It is possible his troubles stem from an infection and if that is the case they will treat it with antibiotics.  Truth be told, I am praying for an infection.  If it's an infection and they can treat it with antibiotics its just one less thing that could be wrong.  Logan also had a second blood transfusion today to I will see how that went tomorrow.  I am hoping and praying that like Dylan the blood transfusion kinda kicks him into high gear and helps him to the point where he can start helping himself.
So our prayers are simple, please pray that Logan has no bleeds in his body.  Pray there are other reasons behind why he is struggling so much.  Pray the transfusions help strengthen him and give him what he needs to fight on.
We still have yet to hold either of the boys and I don't expect to for at least another week or more.  But I am looking forward to it.


This is Logan.  He has really dark hair and more of an oblong face like JT and Jake.

This is Dylan.  He has the lightest hair out of all of my boys.  Maybe I did get one blonde baby?!? His face seems to be a little more like Ethan and Caleb.

Meeting Logan and Dylan

After I spent 3 days recovering in the hospital I was itching to get out and see all 5 of my boys.  When I was discharged I headed to the NICU to see the boys.  I still couldn't really see their faces because of the equipment, wires, sunglasses for the lights... things like that.  But I held their hands and got to talk to them a little.  Oh, I forgot to say, Logan weighed 2lbs and Dylan weighed 1lb 15oz.  As of today they are both around 1lb.
I have thankfully been to the NICU every day I have been out of the hospital.  We have so much to be thankful for.  Dylan is doing so very well! His brain scan came back negative (clean), the blood transfusion he had seemed to help him a great deal.  He is on a continuous feed (a tube into his stomach) He looks great too.  Still on O2 and CPAP but really low settings.  All gifts.
Logan is having a little bit of a harder time. I will say that his brain scan also came back negative!  Praying both boys get a clean scan again in another week.  Logan's platelets are low which means there could possibly be a bleed somewhere in his body.  I am asking for prayers against that!  His skin is dry and very sensitive. He has lost more weight than Dylan, is still on the lights, antibiotics... He's just struggling a bit more. The nurses are telling us he is about a day behind Dylan.  I am praying that is the case.

The boys are both in such great care.  For 26 weeks they are doing well.  It's always a bit of a roller coaster.  You think they have made it past something and then you go back and they are back on.  It happens and we are prepared for it.  Doesn't make it any less sad when they are on machines they were off of but the care is amazing and we are thankful for that.

A little side story:  A year ago Jake and I were talking seriously about moving to GA.  He could go and stay with his company and we could afford to live.  The Lord kept us here in every way.  He opened doors we never could have imagined.  We are in a house with very few stairs vs a townhouse with a ton of stairs.  We are paying less in rent, Ethan and JT are both in fabulous schools with incredible teachers and the greatest gift of all, our church!  Our church has once again surrounded us, is caring for us in ways we never would have ever thought of.  They are providing meals daily, rides to the NICU once Jake goes back to work, extra help around the house daily, organizing people to help us with yard work and grocery shopping.  If we had moved to GA we would have been all alone.  God kept us here b/c He knew what we would need.  I am always slightly ashamed at myself when I get upset at God for not giving me what I want and then find out why.  He wanted to take care of us!  He wanted to be there for us and to make sure we had his arms wrapped around us.  We do.  We do because he closed and opened and closed doors to keep us here.  Keep us with our church family.  And they are family!
So all praise and glory goes to God.  I don't know why the twins had to come early.  I wish they had stayed longer.  I wish they were safe inside me, but God has plans.  And when He clearly knows what he's doing I will do my best to step aside and wait.  I will do my best to be more than okay with the way things go.  I will do my best to praise Him in the storm.

PS - side note, my thyroid surgery has been moved up to November 7th so that I can recover and be home and healed when the twins get discharged.  So, once we are all home from the hospital I hope it stays that way... FOREVER! ;-)