Friday, June 27, 2014

First week at home / Last week in Burlington

It's been a crazy week, but we wanted to do a quick post with some new pictures.  We were discharged on Sunday and made it back to Burlington late Sunday night.  The kids were ecstatic to see the babies the next morning!  Brett's boards are actually today (Friday), so he has been intensely studying all week.  We have the packers coming tomorrow and the movers coming Monday, so in between taking care of little ones, I've been trying to get things prepared!  Hence, this is why I'm just now doing a blog post!

Brett and I both agree that Boston seems like one big dream.  We are having a hard time wrapping our heads around everything, but are very thankful (and a little shocked) that we are to this point!  Thank you again to everyone for your prayers... He heard them and answered them!  Please continue to pray for Hudson- that he would gain weight and continue to have normal endocrine levels.  Also, we would appreciate prayers for the kids in this big transition time of new babies and moving to Huntsville.  

Here are a few pictures from the past week!

A few hours before discharge

Right before we left the hospital (thank you Marms for the beautiful gowns)

The first night back together... Hudson seemed really excited and couldn't stop staring at Harper!

 First morning with the babies

 So happy to have all of my babies under one roof!

Saturday, June 21, 2014

Boston End in Sight

So the last 3 days have been slow and steady.  Hudson continues to make strides.  Calcium has normalized, he's eating great, and he just had his first documented weight gain last night.  His demeanor is starting to calm a bit (I think he was just a little mad from being starved in the CICU!)  We are gearing up to probably go back to Burlington tomorrow.  He's looking forward to being able to get some full naps without interruption (He said his first words yesterday, which were "stop bothering me."  We thought that was a good sign).  Sweet Harper is also doing very well, eating and sleeping on schedule.  Still a sleepy baby.  Again, all thanks and praise be to God for seeing us through this journey.  We have felt his hand guiding us all every step of the way.

Psalm 91:1-2 He who dwells in the shelter of the Most High will abide in the shadow of the Almighty.  I will say to the Lord, "My refuge and my fortress, my God, in whom I trust."

 Harper at her 1 week  checkup.

One of Harper's rare awakenings.

Hudson is taking the "car seat test" to make sure that he is ok to be strapped in for a ride home!

One of Hudson's favorite places to be is in the window with the sun shining on him.  Great for his jaundice and vitamin D levels, but we told him he shouldn't make a habit of it.

Wednesday, June 18, 2014

Boston Strong on Day 7

Hudson continues to race towards discharge.  All of his tubes and even IV's are out!  He is taking full feedings, and we are really just waiting on him to gain a little weight.  His calcium levels were completely normal this morning, which completely surprised most of the docs and staff around here!  They are talking about a possible weekend discharge! 

Taylor and Will left to go back to Burlington around noon today, but Kelly and I had a really sweet 24 hours with them while they were here.  Some tears were shed last night, but both kids seem to be comprehending the situation and understanding that we have "1 more week" to go.  We could not be more thankful for the mental position that they are in, and for all of the comfort, support, and stability that their grandparents have provided for them over the past 4-5 weeks.

We've really felt so much love and support from everyone throughout this process.  Thank you so much!  Romans 12:12 Be joyful in hope, patient in affliction, faithful in prayer.  Share with the Lord’s people who are in need.  Practice hospitality.

Tuesday, June 17, 2014

Slow Two Days, Then a Sprint

Sorry for the silence in posting over the last 2 days!  It's been a bit of a whirlwind, but thank you for your continued prayers.  Today is postop day 6, and we are really thankful for Hudson's continued progress, and for God's faithfulness amidst my skepticism.  Most of the last two days have been really slow progress, and then a sprint here in the last 12 hours!  To catch you up, we waited for him to start breathing enough to remove his breathing tube for all of postop day 4.  He had met the milestone to remove it by the end of that day, but it was too late in the day to remove it.  After much anticipation for all of yesterday (postop day 5), he finally had the breathing tube removed late yesterday, and started bottle feeds last night!  This morning his final chest tube and central line came out, and he has now gone to the step-down unit!!  He is making amazing progress, despite our impatience.  Please pray that Kelly and I and family would trust God with his timing, and know that every event is in His perfect timing according to His perfect faithfulness.  As for Hudson, he has some calcium imbalances that we are still trying to figure out what's causing it, with a possible issue with his parathyroid gland.  Please pray that God would allow them to find a root cause sooner than later (my impatience again), and/or that it would correct itself over the next few days now that he has started breastmilk again.

On a different note, Taylor and Will have come into town this morning to meet their new brother and sister for the first time.  Please pray that their level of comprehension of the situation would be enough for them to understand why our family has to continue to be separated for the next week or two (especially Will).

Thanks again for your prayers!

Ecclesiastes 3:11 He has made everything beautiful in its time . . .

Ecclesiastes 3:14 I perceived that whatever God does endures forever; nothing can be added to it, nor anything taken from it.  God has done it, so that people fear before him.  That which is, already has been; that which is to be, already has been; and God seeks what has been driven away.

Matthew 6:27 And which of you by being anxious can add a single hour to his span of life?

Saturday, June 14, 2014

Postop Day 3

We keep seeing steady improvement in Hudson's status, and our peace continues to be beyond ourselves.  He is almost completely off of sedation, yet still seems quite comfortable (as Jesus's swaddle should be!)  His alertness has really increased.  His blood pressure is becoming more stable with less dependence on his meds.  He is still trying to wean off of the vent, and could possibly be extubated tomorrow (false-expectation that I gave you 2 days ago).  Hopefully he will get one of the tubes out of his chest, which will be good since they're half the size of his little chest and may be hindering his breathing due to pain.  We are also really excited that he got to start breastmilk through a feeding tube today!

Matthew 19:14-15 but Jesus said, "Let the little children come to me and do not hinder them, for to such belongs the kingdom of heaven."  And he laid his hands on them...

I want to thank everyone again for the much prayer and support that we continue to receive.  We continue to be strengthened daily by you all.  Philemon 1:7 For I have derived much joy and comfort from your love, my brother, because the hearts of the saints have been refreshed through you.

Friday, June 13, 2014

Hudson is Awake!!

Brett and his dad went to say goodnight to Hudson, and to their surprise he was awake!

Postop Day 2

Hudson had a great night last night.  His blood pressure remained stable and his sugars were excellent, and he was able to come off of insulin completely.  They discontinued the muscle relaxer around 7:00 pm.  Since then, he has been slightly moving his arms and legs, and has even tried to open his eyes a few times (but they are too swollen).  He continues to stay on a low dose Lasix to start decreasing the swelling.  The chest drains have very little output, and one may come out tomorrow. 

Meanwhile, our sweet Harper girl and I got discharged yesterday.  Here are some pictures of her right before we left the hospital. 
 Harper is doing great and is such a little sweetheart.  We are so thankful for her!

We finally got to reunite Harper and Hudson.  The two babies slept the whole time, but it was a special time for us!

"Give thanks to the Lord, for He is good.  His love endures forever." ~Psalm 136:1

Thursday, June 12, 2014

Postop Day 1

Hudson is doing about as expected today.  He got to the CICU last night around 9 pm, and we finally got to see him around 11 pm.  God's peace was definitely with us...both Kelly and I thought we should be feeling more emotion than we were, but it all honestly seemed like a dream as we saw and touched our little boy.  The surgeon said the repair went well, and that the ventricular septal defect was a very difficult one to repair, but that he got the job done.  He said the coronary transfer was without issue, which is the most common postoperative complication.  We were very thankful that Dr. Pigula was able to close his chest (since it has to stay open in almost 1/2 of these cases for at least a couple of days).  Hudson will stay under anesthesia and muscle relaxer through tonight, and will start to wean anesthesia and possibly extubate tomorrow.  He is on some medicine now to keep his blood pressure up appropriately.  His blood pressure is a bit volatile, so please pray that this would stabilize soon.  He has three drains in place, and two that are still actively draining a moderate amount of blood.  Please pray that this bleeding would stop very soon.  His nurse today said that he is experiencing the "12 hour crash," which commonly occurs about 12 hours postop.  Please just pray that he would make much progress tonight, and be able to be extubated tomorrow.  We continue to be sustained beyond our understanding, and are very thankful for God's presence with us.  We know he is holding Hudson in his arms as well.

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

Wednesday, June 11, 2014

Hudson is Finishing Surgery

We just heard that Hudson is off of bypass now, and they are starting to close his chest.  Thank you so very much for everyone's prayers and support during this long day.  It's obviously not over, but let the recovery begin.

Psalm 23:4 ...your rod and your staff, they comfort me.

A Glimpse of the Last Two Days

Ok.  Hudson was taken from us by anesthesia 1.5 hours ago (seems like 4 hours ago), and skin incision was just made.  We owe everyone some pictures, so thought we would keep our minds occupied by making good on our promise.

One last belly shot before going to the hospital on Monday.

Kelly's 30 second moment with Hudson at delivery.

Daddy's first time holding Harper.

Hudson being evaluated in NICU soon after birth.

Harper on day 1

Tay and Will meet their little sister for the first time, cyber style.

The morning of surgery Hudson opened his eyes wider than ever before.  It was his gift to us to sustain us for the next 4 days.

Hudson was a lot more relaxed about going to surgery than we were about him going to surgery.

Mommy and daddy saying final goodbyes before surgery.

Tuesday, June 10, 2014

Hudson's Surgery Tomorrow

Hudson's surgery has been scheduled for tomorrow at 2 pm.  We are very thankful that there was an opening in the schedule so soon (because this morning it looked like they weren't going to be able to do it until possibly next week).  Dr. Pigula and his team will perform an arterial switch procedure with repair/closure of Hudson's VSD.  The surgical time averages around 6 hours.  Again, please pray for the team's endurance, concentration, and steadiness, and wisdom in their surgical decisions.  Obviously tomorrow will be a tough day for everyone, so please pray that we would all be able to trust God, receive patience from Him, and be filled with a spirit of peace.

Kelly woke up this morning feeling much better, fever gone, but she is still in a lot of pain.  She's being treated for endometritis.  However, despite this, it's been a good day with both babies.  Because they didn't think that the surgery would be until later, Hudson got to breastfeed for the first time, and did really well. That was good to see since he probably won't get to traditionally feed again for at least another 4 days after surgery, and has to be NPO after midnight.  Harper is also doing very well.

We'll try to keep the blog updated with new news as it arrives tomorrow.  Thanks for everyone's prayer and support!

Monday, June 9, 2014

Hudson and Harper are Here!!

Thank you to everyone for your prayers and support today. We are very happy to welcome our little boy, Hudson Brett weighing 6 lbs 3 oz, 19 in, and our new baby girl, Harper Adeline weighing 6 lb 7 oz, 19 in.  Hudson was born with a vigorous cry, Apgars 8/8, and had no signs of low oxygen!  His oxygen saturation has not dropped below 94% since he was born!  This means that he did not need an atrial septostomy (which we were very thankful for!). He had his neonatal echocardiogram to further diagnose his heart defects soon after he was born, and the preliminary interpretation was double outlet right ventricle (instead of transposition of great arteries) with ventricular septal defect (VSD).  Therefore, he was able to stop prostaglandins tonight!  We will hear more word on a specific surgical plan tomorrow.  Harper has been doing great with several excellent feedings.

Amidst all of the many blessings, Kelly is exhausted, in much pain, and has a fever that followed postpartum hemorrhage during delivery.  Due to these setbacks, she has not been able to visit Hudson except for about 30 seconds in the OR right after delivery. Please pray for:
1) Kelly, that she could get some quality sleep tonight, that God would quickly heal her, and that she would be able to truly experience the joy of her babies.
2) Hudson's and Harper's support (Kel's mom, my parents, Kelly, and myself) that we would be able to coordinate an optimal system to give these babies the support they both need during the tough time ahead.
3) and praise to God because he has delivered his tender, loving mercies once again.

Psalm 28:7 The Lord is my strength and my shield; in him my heart trusts, and I am helped; my heart exults, and with my song I give thanks to him. 

So sorry, but due to my computer being at the other hospital, pics will have to be posted tomorrow!

Sunday, June 8, 2014

Tomorrow is the day!

12 weeks
We are almost there!  I will be induced early tomorrow morning at Brigham and Women's Hospital and we are hoping the twins will arrive by mid-day.  I was told to be prepared for a large crowd for the delivery... between the different medical teams, there will be at least 15 people in the room!  It is comforting to know that we will be in good hands.  I had several doctor appointments this past week in Boston, and they are predicting Hudson to be around 6 pounds, 4 ounces and Harper to be 6 pounds, 10 ounces.  We are extremely thankful that we have made it this far and that they will hopefully be big and strong when they arrive!

I am also thankful that Brett will drive into Boston today and be by my side for the delivery (yay for not going into labor without him)!  My mom has been wonderful to have with me in Boston... she's been wheeling me around, carrying luggage, hailing taxi's, fetching food, and letting me just rest a bunch (which I'm sure has made her stir-crazy), all while sleeping in a 'bed' that's really a chair at night and not complaining!  She's a trooper.  We move into a furnished apartment today for a couple weeks, so I'm glad she will have a proper bed tonight! 

Please pray for a smooth delivery tomorrow.  Hudson will be delivered first and then they will perform a breech extraction to deliver Harper.  Please pray that goes smoothly.  We've been told we will hopefully get to hold Hudson long enough to take a quick picture and then he will immediately go to the NICU for IV prostaglandin and be closely monitored to ensure he does not need an immediate balloon septostomy (please pray he won't need this).  He will then be transferred likely within an hour to Boston Children's Cardiac ICU and have a full echocardiogram to ensure they know exactly what is going on.  Then, hopefully, we will schedule his heart surgery within a few days.  Thank you again everyone for your thoughts and prayers.  Obviously, this has been a journey for us and is far from over, but honestly, the Lord has sustained us, given us peace and comfort, and allowed us to be so thankful for what we have.

Oh the deep, deep love of Jesus
Vast, unmeasured, boundless, free
Rolling as a mighty ocean
In its fullness over me
Underneath me, all around me
Is the current of Your love
Leading onward, leading homeward
To Your glorious rest above

Oh the deep, deep love
All I need and trust
Is the deep, deep love of Jesus 

Wednesday, June 4, 2014

Boston journey begins

Kelly and her mom went to Boston today to wait out these final days until delivery.  Last night was a tough one for Taylor and Kelly with lots of tears shed as they said their goodbyes to each other. Will took it pretty well.  Things were much brighter this morning.  At the bus stop Taylor assessed the situation for Kelly, and reassured her that our situation is a lot simpler than we thought.  She said "Mommy, you have four things to do.  Drive to Boston, deliver the babies, have the doctors figure out what's wrong with Hudson's heart, and drive home."  Isn't a child's perspective a beautiful thing?  
Matt. 11:25.