How Great Thou Art

When I was being rushed to the OR for delivery I was by myself. Jake and I left each other in room 609. He had to get dressed and a nurse would come get him when they were ready for him. They told him, it would happen rather quickly so be ready sooner than later. We were reunited, what seemed like an eternity, later when just a short 30 seconds later Beckland entered this world. As planned, Jake left quickly with Beck down to NICU and left me on the OR table again by myself. Jake's sister, Jess, had also been prepped and ready to come in as soon as Jake left so someone would be with me while Jake stayed with Beck. In actual time, it probably was around two or three minutes until Jess got to my hand that was looking for a squeeze. In Amy time, it was waaay too long. I was lonely, overly scared of C-Sections( especially when I deliver so quickly and easily vaginally), and in desperate need of comfort. When all of a sudden I started singing, OUT LOUD! haha Hymns and scripture have a funny way of bubbling out of you when you don't know what else to say or do. I'm not sure who all was listening and frankly, I didn't care.  "O Lord my God, when I in awesome wonder. Consider all the worlds thy hands have made. I see the stars, I hear the rolling thunder. Thy power throughout the universe displayed. Then sings my soul( I was really belting it here) My Savior God, to Thee. How great thou art, how great thou art. Then sings my soul, my Savior God, to Thee,  how great thou art, how great thou art! " and then Jess came in :)

In the past 13 days that song has sprung into my head numerous times. I have sat down to write an update blog two or three times now and just can't seem to find the right flow or theme. So, I am going to do some bullet points of updates and then leave you with a link to listen to this hymn.

*Beck weighs 4lb and 8 oz. He lost A LOT of weight after coming out due to not being able to eat. Now that other organs are working properly he can start having my milk and added calories through a fortified milk they add to my milk. He has gained weight everyday for the past week and now has finally surpassed his birth weight.

*He is still doing great breathing on just his nasal cannula. He still is on high flow of 2 liters per minute with hopes of going down to 1 tomorrow. This is the most impressive stat yet! He is breathing room air temp and pressure and will get to come out of his isolate tomorrow if he continues to do well today.

* At midnight last night his last port through his belly button came out. He is now port free. No IV's anywhere. Let's pray it stays that way!  Because that UVC came out,  he can have a bath and we can now dress him!!!! That is one of two big milestones today. If he can regulate his body temperature with clothes on, then the isolate comes off!

*He is getting 35 mL of breast milk every three hours. I have been able to pump and provide all that he needs in that area. Because he is now breathing at  2 liters, we can put him to a dry breast (after I pump) to start teaching him how to feed from me. We are praying that he can be exclusively breast fed. From the doctor's rounds this morning, it seems like practicing at a dry breast will get to happen today!! This is the other big milestone.

* I am starting to feel a little stronger every day. The more I can rest and sleep and better I get. I have a follow up today with my doctor and a follow up in two weeks with the neurologist about my TIA. I am staying with Beck during the week and then Jake comes on the weekends so I can get some rest.

* Beck's bilirubin is still a tad high at 8.2. We are hoping his SIX poops yesterday will help bring that number down. He will get his number tested again tomorrow morning. Praying he doesn't have to go back on the UV lights.

* He will turn 2 weeks old tomorrow and we are all awed (doctors and nurses included) at how well he is doing. Many are calling him the miracle baby. I would concur!! Praise the Lord!!

I think that is about it for updates on Beckland~ More to come later.

As we reflect this Holy week on the meaning of what happened, I want to leave you with a link to listen to this hymn so you too can not only sing God's praises along with us about Beck, but also sing his praises for Christ is Lord and He is risen and coming again!!

https://www.youtube.com/watch?v=dnvg0OtupuI  

 He is Risen,

Amy Joy

PS. Jake and I LOVE the last verse

When Christ shall come with shouts of acclamation,
And take me home, what joy shall fill my heart.
Then I shall bow, in humble adoration
And then proclaim, MY GOD HOW GREAT THOU ART!

We cannot wait to be before our Lord proclaiming this alongside our whole tribe that is already up there!

Super Tuesday

Monday we had found out that we were not eligible for any housing while Beck was in the NICU. Most of the day was spent networking and praying. We were given many leads and are waiting back to hear from one that is very promising! Praise the Lord! It is a church that is a few blocks away from the hospital. They have housing for interns and have an open space for us.


Here comes our super Tuesday:




Early wake up call at 5:00 am to find out I am getting discharged!! After days of tests on, and two rounds of iron through an IV, a final diagnosis of what happened to me was a TIA (Transient ischemic attack)  I had symptoms of a mini-stroke due to the lack of oxygenated blood able to get to my brain due to the amount of blood I lost in surgery. After the IV treatments, clear tests, and some nice drugs I am on the road to recovery(although the road seem like a million marathon stacked on top of each other)!


 

Shortly after discharge we found out the day Beck had in front of him. The doctors had decided that it was time to extubated him. Take out the tube that has been keeping him alive and breathing?!!! WASN'T IT TOO EARLY FOR THAT?!! The doctors assured us that they could put it right back in if need be. They had decided to take away the JET machine( high frequency ventilator) and try to see if he could breathe on other devises. They would start with a nasal cannula and go from there. The time came for them to take it out. They needed help to hold his hands and feet calm while they pulled it out. Any chance to touch Beckland made Jake and I excited! With both excited and terrified tears in our eyes they pulled the tube out and we got to hear our sweet boy cry and scream for the first time! It was the sweetest symphony we had ever heard. They put the nasal cannula in and he was having a hard time getting settled down. And then these words were floating in the air : "LET'S PUT HIM ON MOM AND SEE IF HE CALMS DOWN". Wait....what?!! say that again?!!! It was happening to fast for it to sink in.  They had me changed in a gown and sitting in a chair before I could even let those words settle in. I was going to get to hold him?! Within a couple minutes Beckland melted right into me and tears were streaming down, like the flood gates were opened. I never thought I would ever get to hold another live baby there on my chest again, yet, it was happening. We couldn't stop crying...all while our emotions were trying to catch up with the situation the nurse came in for some blood work to see how he was handling breathing just on the nasal cannula.  Within a couple minutes of the blood draw a nurse came back in and said "we are all flabber-gasted. We thought he would be alright off the tube, but no one was expecting him to do this well. In fact, no one know how this is happening. His blood works shows that he is doing better off all the machines than when he was on them." 




YOU GUYS.... do you still believe in miracles? Jake and I got to be apart of one yesterday. It was the first day we sang praises all day instead of pleads. We felt the blessing of being patient for answers being thrown on us. After a couple hours of getting to hold him,  a nurse came in and said Beck was doing so well that if Jake wanted a turn to hold him, he could. MORE TEARS! Let me tell you something. Watching my husband hold his tiny precious son was a glimpse into how the Lord holds us. We "melt" in Him and He, just as emotional as we were, claims us as His own. Beck finished the long day with a new bed and peaceful sleep. 


Today, is just as big of a day for Beck. He just got his chest tube out. There has been no leaking of air for the past three days, so the doctors feel it is time to take it out and see what happens. We pray for stability and for healing. We pray his lung hole closes and no more air flows out, otherwise another surgery and another chest tube. Right after they took it out he fell asleep. We pray for a healing rest right now. Then, maybe some more lovin' and holdin'. 


For now, 

Amy 




He's A Fighter!

Our hearts are overfilled with the LOVE that we have for our son Beckland. Days old and yet so knitted into our family.

NICU stories and journeys are rough ones. We have already gotten a taste of that and are continuing  to learn how to live with a little one in the NICU. Things change daily, hourly, even minute by minute. Some days are filled with hard news, trying times, and others are filled with nuggets of good news. The first day in the NICU was a rough one per usual. He was intubated and had hard times figuring out how to breathe and exchange gases with "22 week" lungs.

On his second day of life, he developed a hole in his lung. This hole was in the front of his lungs and the leaked air was filling right in front of his heart, so his blood pressure was failing. They did an emergency surgery on him to try and release the air. They had to transport him down to regular OR(for imaging purposes) and had to gather a whole team of doctors, some even from Seattle Children's, for this surgery. Jake was not allowed in, he waited outside for the two hour procedure. (most of the time was spent figuring out how to stabilize Beckland and position him for surgery). The tube was placed between his heart and breast bone. They successfully removed 75% of the air, which allow enough relief for his vitals to return to normal.

The tube is still in, and is used daily to remove the build up of air around his heart. He is still on nitric oxide to help him exchange gases, and he is still on oxygen. However, every little thing they do to try and help him, he response very well to. Every day is balanced with figuring how much of what he needs. Every day is some steps backwards, and many steps forward.  He has to stay sedated for most of the time right now because he is too big for his lungs. He thinks he is a big boy already and moves too much for what his lungs can handle. We have a little fighter on our hands! Beck is also a little jaundice, so he is now catching rays under UV light for a couple days.  Amy got to change his diaper a few nights ago, and today he started a feeding tube with Amy's milk! Praise the Lord he is responding well to it. Kangaroo care is able to start once his chest tube comes out.

Every sweet baby down there gets their own room. One of the nurses make signs for the baby's room.  The other day Beckland's sign showed up! This is officially his room now:) let's hope he stays and fights there longer!!

Amy is having a rough time recovering from surgery. She lost just over a liter and a half of blood and is having a hard time replenishing it. She has fought already numerous obstacle and we are praying for more miracles to happen so she can join the rest of her family down in the NICU.

Beckland Thomas Jansen

*Beckland "Beck" was born yesterday at 1:37 pm
*Amy started contracting and laboring around noon(that is one fast labor)
*Jake made it just in time
*A nurse had to hold Beck inside so they could get Amy to OR for C-Section because of his breech position.
* He weighed 4 lbs. and 5 oz.
* It took them exactly 1 and a half minutes to get him out once they started procedure (YEAH, that is how fast Amy labors)
* Although he looks very healthy, his lungs never developed past the time all fluid was lost.
*His lungs are functioning at a 22 week status.
* He already has been diagnosed with Severe Lung Disease
*He is fighting strong
*He has developed a hole in his lung.
*The leaked air was getting caught right in front of his heart.
*A team of doctors from Children's  came over and did a first ever chest tube insertion right by his breast bone to try and release air from around heart.
*He is back from surgery (took about 2 hours) and is fighting to become "stable" on all machines.
*Because Amy's labor happened so fast, Beckland was much lower than what a typical c-section is(remember a nurse had to hold him in).
*In an effort to get lower the uterine artery was cut and Amy lost too much blood.
*If Amy's number's don't improve soon, a transfusion will be needed.
*Amy's is recovering as well as she can.

In such a deja vu situation, everything is happening that happened with Hailey, we were reminded today from a friend- WE CAN PRAISE JEUSUS FOR HIS PRESENCE AND TRUST HIM.  Exodus 14:14 "The Lord will fight for you; you need only to be still."

Work up #1

What day is it?!

The last day I woke up on was Sunday, February 28th, and I haven't had a night's sleep yet. 

Sunday was a GREAT day. Jake and Mason were here. We went outside in mommy's strollar (a wheelchair) and went on a great walk. Mason just wanted to snuggle me in my hospital bed all day, with  breaks to sit up and kiss, hug, and ugha-mugga his baby brother. Jake took us on a date to the cafe for hot chocolate. It was medicine for my soul. 

Shortly after they left, I passed what seemed to be another pretty big blood clot. All was well for the next few hours until I was getting ready for bed. I couldn't stop bleeding. SOUND THE ALARMS. One of the signs of great infection and need for delivery. Jake turned right back around after dropping Mason off and headed back down. After some very quick exams, I was getting worked up for delivery. An ultrasound was done, still breech. An IV was started for Magnesium Sulfate (something given for neuro-protection for baby boy), vital signs being taken every 15 minutes for magnesium, blood work, a rescue dose of steroids given for baby's lungs, no food or drink,  and continuous monitoring started. Magnesium puts my body straight into a perpetual state of hot flashes and the foggiest of minds. I guess it was a sight to remember. Nurses holding my hands, doctors reassuring me of all that I know(Same doctors that delivered Hailey), people telling me the side effects of all that was being pumped into my body(things I remembered all too quickly from when this happened with Hailey). When all of a sudden I guess I said rather loudly " NO! I CAN'T HAVE A LEAP DAY BABY! THIS BABY NEEDS A BIRTHDAY EVERY YEAR!". hahaha. Like I said " I was in a pretty foggy state of mind. 

Contractions started shortly after midnight. Baby started to react negatively to contractions early Monday morning. His heart rate would go down for an extended period of time after a contraction. By Monday noon, bleeding had stopped. Contractions and drop of heart rate didn't. I needed one more shot of steroids for his lungs Monday night at 10:30 for a successful completion of correct dose.      They let me start eating and drinking again sometime Monday afternoon. I received the shot and settled in for another sleepless night of monitoring baby's heart rate and contractions.  Praise the Lord, I only had two contractions last night and his heart seemed to be recovering well. 

After 35 straight hours of being "worked-up" I was finally disconnected from magnesium, and monitoring was changed back to twice a day for twenty minutes. As long as I don't feel any more contractions or start bleeding again. That happened at 8am this morning. So I got to sleep from 10-1 today un-intorrupted. GLORIOUS!  I just had a full meal and have grand plans of a shower and more sleep. Hoping for a restful night of sleep tonight. 

Our emotions go everywhere after this. It is so easy for us to jump back to last time and think about how after my first work up with Hailey, she made her grand entrance about a week later. Of course, I had about six work ups with her within that week. So, it makes our mind race with questions. Will this baby be here within the next week? Is this a sign my body tells me every time? Do I have enough strength to go through work ups again? How many work ups will there may be this time? 

As we think about the pending birth of this boy we are once again brought to our knees before our Lord and Savior Jesus Christ. We echo John the Baptist when he says "Jesus must become greater and I must decrease". With every question that we have, no matter the weight of it. Will this boy meet Mason or Hailey first? or Can I make it to the sink to brush my teeth?  We are ever reminded that our purpose on this earth is to bring and participate in His kingdom here.  We MUST decrease so that Jesus can become greater and shine through. We  must rest, be gentle, have trust and be peaceful so that He can do His work in us and through all of us as a family. 

With heavy eyes and hearts, 

Amy and Jake