We can't believe we are writing these words...
THE JANSENS ARE COMING HOME!!!!!!!!!
I have to write it again, The Jansens are coming home. TOMORROW!! or Wednesday.
Beck has decided its time to bust this joint and find his new digs at home. Saturday morning Beck's percentage of PO (what he eat by mouth, compared to his feeding tube) was 54%. Where it had been the past couple of days. There must have been a light switch that came on because at 9 pm he starting drinking his whole bottle. He continued to do it at each feeding throughout the night. He was doing so well that by Sunday, late afternoon, close to 24 hours of feeding on his own, they took out his feeding tube. By midnight last night, they switched him to ad lib( he can choose how much he eats and when he eats it) in hopes he would wake up and want to eat and maintain his weight. Throughout the night he decided that he wanted to eat just about every two hours and this morning has gained 50 grams. 8 pounds 4 ounces.
God sure answers prayers. He is totally being glorified through Beck and his story and we are so thankful for all of you in joining us! Last week we asked for prayer for breathing. Beck came off all oxygen a day after that and has stayed off. We are going home with no oxygen! We asked for eating. Obviously, he is rockin' it! Going home? Forget four weeks! they are kicking us out tomorrow! Rest. Well, lets be honest what parent of newborns feel rested in the first few years? haha God give immeasurable amounts of strength to us each day.
Today Beck has to sit in his car seat for 90 minutes and not have any events. If he does that? He gets all his monitors off. No heart rate monitor, respiratory rate monitor, NOTHING! and then...smooth sailing all the way home.
OAK HARBOR we know you already had a parade this weekend, but you think you could have another for us tomorrow?! hahaha
We are so excited to introduce you all to Beckland Thomas. Beyond ready to be a family of four at home! Because of Beck's rough start his respiratory system is still very frail. He can catch the smallest bug and it could throw him under a bus from catching it. So, we ask, to PLEASE be responsible in evaluating your health before you come over to see him. We will hopefully be home forever so the possibility of you being able to see him is pretty high. If you feel a little bum come over a different day. Also, because he is a preemie, there are a few general rules to when you do come over. He is very sensitive to stimulation. He loves SLOWNESS, QUIETNESS AND DARKNESS. He will let you know when he is being over stimulated when he hiccups, yawns, arches backwards, splayed hands(a "talk to the hand" movement), straightened arms, or no eye contact. We can always help you out too if you have any questions.
We are so excited! So excited to be sleep deprived, a family of four, to sleep in our own beds for the first time in 4 months, to foster Beckland's heart, to teach him about the One who gives life and loves abundantly, to watch Mason grow into a big brother, and so excited to give God all the glory He deserves. This is Amy's FAVORITE Bible verse of all times. It is so appropriate to proclaim and sing it at the top of our lungs;
Praise be to you, Lord,
the God of our father Israel,
from everlasting to everlasting.
11 Yours, Lord, is the greatness and the power
and the glory and the majesty and the splendor,
for everything in heaven and earth is yours.
Yours, Lord, is the kingdom;
you are exalted as head over all.
12 Wealth and honor come from you;
you are the ruler of all things.
In your hands are strength and power
to exalt and give strength to all.
13 Now, our God, we give you thanks,
and praise your glorious name.
1 Chronicles 29:10-13
Can't wait to see you guys soon!
Jake,Aim, Mase and Beck
Monday, May 2, 2016
Wednesday, April 27, 2016
105
Today marks 105 days since UWMC became my home. I have been in this place for 15 weeks. The equivalent to a semester of college, just about 1/3 of the year. So far the year 2016 has been lived out in either room 609 in the antepartum wing or room 80 in the NICU. The past seven weeks being in the later room. WE ARE TIRED!!
BUT...
I think there is an end of the tunnel shinning ever so dimly our way. I can start to see the illumination of light. About an hour ago our nurse came and hung up a discharge checklist on our wall! Granted, we have two things checked off so far, we now know what needs to be done in order to go home. Initially we were told that the three items to check off were basically, be four pounds(check! we hit 8 today), breathe on their own(our main struggle), and feed on their own(working on it). Now we have an actual list of things to check off and it is much longer and bigger than just three items. Things like be able to give a bath, car seat safety class, know signs of chocking, know signs of under oxygenation, be able to give medication( we only have vitamins, check), etc. I can start crossing off a lot of these small boxes in the next couple weeks!
In terms of the three big checks(weight, breathing and eating) we have one out of the way and are working on the last two. Beck has started taking from a bottle. He needs to be able to take a full feeding(just over two ounces, 63cc) from a bottle in under 45 minutes every three hours for 48 hours before we can check off that box. A tall order for such a small boy, but he is a champ and working hard at it. We have worked off of all fortified milk and added proteins. So we are only on straight breastmilk and growing like a weed. In the past 48 hours he has taken 5 full feedings of his 16 offered. So we have a ways to go, but are working hard. I am still pumping all the milk for him. We have a deep freezer at home full of extra milk I have pumped, so we should be set to go!
OK, BREATHING- this is where Beck is struggling the most. He has been diagnosed with BPD( Broncho Pulmonary Dysplasia). He is still needing oxygen after what is considered a full term baby ( 37 weeks). We are trying to work him off of his nasal cannula, but it has been a struggle. We are currently still on low flow at 1 liter with 22-23% oxygen. We breathe 21% oxygen. SO WE ARE SOOO CLOSE. but he seems to really need those last little wiff's of O's to keep his 02 in the 90's. We are working down again to hopefully try to come off of them some time next week. We will see how he does. If he gets his feeding down pat and is ready to go home in terms of feeding but still needs some oxygen then we will most likely go home with him being on oxygen. We feel confident in understand and working his oxygen, but would love to leave the oxygen here at this place and start fresh new at home with no needed assistance. We will see.
So obviously our prayer requests are:
*breathing
*eating
*going home
*and rest and healing through it all
We serve a GREAT KING and Beck's whole story/life is a living testament of a risen King, Christ Jesus, who is most deserving of all the glory!
Hopefully we will have more exciting news to post soon (hopefully in four weeks we will have a GRAND announcement)!
J&A
Thursday, April 14, 2016
Through the Muck and Mire there is Mercy and More
These waters we are treading in are deep. Almost head deep. May I even say it is costly? The condition of our minds and hearts consume and demand all our attention and efforts.
Beck was diagnosed with a Staff Infection. The GBS strand. It, Praise Jesus, did not travel and get to his spinal fluid. God knows what we need before we even need it. Last Wednesday Beck started acting abnormal. We struggled to keep him breathing while maintaining his heart rate and O2 sats. We struggled for about 14 hours before on Thursday morning, our primary nurse came in! Mikaela, our primary(the one nurse that has laid claim to Beck, every time she is here, she is with Beck all day) came in early Thursday morning wondering what was happening. It only took her a few minutes before calling all docs in to start investigating what was happening. Because of her, they found the infection in his blood and urine but found it VERY early. Babies who get this usually get VERY sick. It takes a while to present itself and travels too fast in the body. Praise the Lord, Mikaela was here and fought for him! We now are stable again and are on day 6 of 10 for antibiotics. He still is on 1 liter of low flow with 23% oxygen. Last Thursday we went all the way back to high flow 3 liters with 64% oxygen at times. But, we are on the mend, thanks be to God for Mikaela's diligent work and for knowing Beck so well.
Jake and I have had to do some hard soul work lately. If you were to see us, I think you could tell our souls lie in the deep, dark waters. We are still plagued with memories from Hailey. It is a struggle for us to think that Beck will come home with us some day. We probably won't believe it until we walk through the front door of our home. Every new baby that comes in, Jake and I start the process of worrying for them. The babies that don't make it, send us into a spiral of memories that cut deep. We walk around in a fog those days. The fog that was Hailey is okay to have, but it is clouding our vision and walk with Beckland. We aren't suggesting that we need to get rid of the memory of Hailey, but we found that we needed to start some serious soul work.
A friend wrote us an email(I wish I could just copy and paste the whole thing on here, because it is packed full of God's mercy, grace, truth and abounding love) that helped in opening our wounded souls. I have had such a hard time praying this time around. We know that God is sovereign, and we still fully believe it. If God wants Beck to be with us, it will be. If God wants Beck to be with Hailey, it will be. We are oddly at so much peace in knowing this. However, we also know that God wants to know the desires of our hearts. And that is where I have a hard time. I don't want to pray the desires of my heart when a huge plead went seemingly went unanswered last year with Hailey. I would rather sit in the head knowledge of knowing "God is God and I am not" than opening Pandora's box of wants and desires before our Lord. Jake has a harder time giving fully his worry to our Lord. He feels like there is so little that he already can do for Beck, so worry is the one thing he can do. Couple that with how much we know about this situation because of what happened to Hailey and he is found in a soul crushing environment.
We know it is ok to sit in this state. It is okay to feel all that we are feeling. It is okay to not want to talk with God. It is okay to yearn for Hailey in our arms every time we pick up Beckland. It is okay to feel the weight of all of this and want to cry "My God, My God...why have you forsaken me". But just as Jesus cried that on the cross as he hung there for ME, He died and then OVERCAME death. Let me say that again, HE OVERCAME. We just celebrated with all authority and joy on Easter, Resurrection Sunday, His conquering over death. All through Revelations we see how, because Christ overcame we will as well. Overcome, He has; overcome, we will is a great article about it. So, although we know it is okay to sit in this muck and mire we find that wading through and working towards Christ is far more rewarding. Even if it one tiny sanctifying step a day. His mercies greet us, new every dawn break! He is willing to fight for us, build us up, supply strength, give ample amounts of grace and hold us through if we continue to acknowledge Him as our Lord and Savior and seek first and foremost His glory. Let me repeat that part again because it is part of the real hard soul work; we need to seek first and foremost His glory. Not ours. We seek his glory instead of ours in being parents. We seek His plan instead of ours in what we think our family should look like. We seek His timing instead of ours for when things should happen. We seek His heart instead of ours.
This friend, in the email, pointed us to Hebrews 13:15. It says "Therefore, let us offer through Jesus a continual sacrifice of praise to God, proclaiming our allegiance to his name". She wrote :
"I have often pondered the meaning of Hebrews 13:15 which talks about offering a sacrifice of praise. Using sacrifice and praise together seems like an odd pairing. Praise is positive thanks, right? It seems to me that the words "sacrifice of praise" was referring to praise of a different kind. One of the things the Lord shared with me one day is that there is easy praise, the kind that just falls from our lips like thankfulness for a sunny day. And then there is the kind which is a sacrifice, it is costly to offer this kind of praise. Sacrificial praise (in my understanding) goes against my ability to make sense of things and requires that I give thanks for the places of pain, hurt, confusion, and suffering. This is certainly not my disposition naturally... It is very costly to thank God for the pain and suffering - a true sacrifice of praise which will allow me to mostly be at rest with those things which are senseless, and with an inability to pray. "
Jake and I have entered the costly work of offering a sacrificial praise to God for our pain, hurt, confusion and suffering. We are no where being close to saying we are fully there and able to. But we are on the journey of starting to do that because Jesus became the full sacrifice for us. Many people say "I will ask God ____(fill in the blank) when I get to heaven". Although Jake and I have so many questions we wish to ask, we find ourselves asking them now. Because frankly, when we get to heaven I don't think those questions will matter anymore. We will be face to face with our creator and will want nothing more to do than to fall on our knees, worship and praise Him. A full sacrificial act of praise.
For now, we rest in this "Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. When we were utterly helpless, Christ came at just the right time and died for us sinners...So now we can rejoice in our wonderful new relationship with God because our Lord Jesus Christ has made us friends of God."
Beck was diagnosed with a Staff Infection. The GBS strand. It, Praise Jesus, did not travel and get to his spinal fluid. God knows what we need before we even need it. Last Wednesday Beck started acting abnormal. We struggled to keep him breathing while maintaining his heart rate and O2 sats. We struggled for about 14 hours before on Thursday morning, our primary nurse came in! Mikaela, our primary(the one nurse that has laid claim to Beck, every time she is here, she is with Beck all day) came in early Thursday morning wondering what was happening. It only took her a few minutes before calling all docs in to start investigating what was happening. Because of her, they found the infection in his blood and urine but found it VERY early. Babies who get this usually get VERY sick. It takes a while to present itself and travels too fast in the body. Praise the Lord, Mikaela was here and fought for him! We now are stable again and are on day 6 of 10 for antibiotics. He still is on 1 liter of low flow with 23% oxygen. Last Thursday we went all the way back to high flow 3 liters with 64% oxygen at times. But, we are on the mend, thanks be to God for Mikaela's diligent work and for knowing Beck so well.
Jake and I have had to do some hard soul work lately. If you were to see us, I think you could tell our souls lie in the deep, dark waters. We are still plagued with memories from Hailey. It is a struggle for us to think that Beck will come home with us some day. We probably won't believe it until we walk through the front door of our home. Every new baby that comes in, Jake and I start the process of worrying for them. The babies that don't make it, send us into a spiral of memories that cut deep. We walk around in a fog those days. The fog that was Hailey is okay to have, but it is clouding our vision and walk with Beckland. We aren't suggesting that we need to get rid of the memory of Hailey, but we found that we needed to start some serious soul work.
A friend wrote us an email(I wish I could just copy and paste the whole thing on here, because it is packed full of God's mercy, grace, truth and abounding love) that helped in opening our wounded souls. I have had such a hard time praying this time around. We know that God is sovereign, and we still fully believe it. If God wants Beck to be with us, it will be. If God wants Beck to be with Hailey, it will be. We are oddly at so much peace in knowing this. However, we also know that God wants to know the desires of our hearts. And that is where I have a hard time. I don't want to pray the desires of my heart when a huge plead went seemingly went unanswered last year with Hailey. I would rather sit in the head knowledge of knowing "God is God and I am not" than opening Pandora's box of wants and desires before our Lord. Jake has a harder time giving fully his worry to our Lord. He feels like there is so little that he already can do for Beck, so worry is the one thing he can do. Couple that with how much we know about this situation because of what happened to Hailey and he is found in a soul crushing environment.
We know it is ok to sit in this state. It is okay to feel all that we are feeling. It is okay to not want to talk with God. It is okay to yearn for Hailey in our arms every time we pick up Beckland. It is okay to feel the weight of all of this and want to cry "My God, My God...why have you forsaken me". But just as Jesus cried that on the cross as he hung there for ME, He died and then OVERCAME death. Let me say that again, HE OVERCAME. We just celebrated with all authority and joy on Easter, Resurrection Sunday, His conquering over death. All through Revelations we see how, because Christ overcame we will as well. Overcome, He has; overcome, we will is a great article about it. So, although we know it is okay to sit in this muck and mire we find that wading through and working towards Christ is far more rewarding. Even if it one tiny sanctifying step a day. His mercies greet us, new every dawn break! He is willing to fight for us, build us up, supply strength, give ample amounts of grace and hold us through if we continue to acknowledge Him as our Lord and Savior and seek first and foremost His glory. Let me repeat that part again because it is part of the real hard soul work; we need to seek first and foremost His glory. Not ours. We seek his glory instead of ours in being parents. We seek His plan instead of ours in what we think our family should look like. We seek His timing instead of ours for when things should happen. We seek His heart instead of ours.
This friend, in the email, pointed us to Hebrews 13:15. It says "Therefore, let us offer through Jesus a continual sacrifice of praise to God, proclaiming our allegiance to his name". She wrote :
"I have often pondered the meaning of Hebrews 13:15 which talks about offering a sacrifice of praise. Using sacrifice and praise together seems like an odd pairing. Praise is positive thanks, right? It seems to me that the words "sacrifice of praise" was referring to praise of a different kind. One of the things the Lord shared with me one day is that there is easy praise, the kind that just falls from our lips like thankfulness for a sunny day. And then there is the kind which is a sacrifice, it is costly to offer this kind of praise. Sacrificial praise (in my understanding) goes against my ability to make sense of things and requires that I give thanks for the places of pain, hurt, confusion, and suffering. This is certainly not my disposition naturally... It is very costly to thank God for the pain and suffering - a true sacrifice of praise which will allow me to mostly be at rest with those things which are senseless, and with an inability to pray. "
Jake and I have entered the costly work of offering a sacrificial praise to God for our pain, hurt, confusion and suffering. We are no where being close to saying we are fully there and able to. But we are on the journey of starting to do that because Jesus became the full sacrifice for us. Many people say "I will ask God ____(fill in the blank) when I get to heaven". Although Jake and I have so many questions we wish to ask, we find ourselves asking them now. Because frankly, when we get to heaven I don't think those questions will matter anymore. We will be face to face with our creator and will want nothing more to do than to fall on our knees, worship and praise Him. A full sacrificial act of praise.
For now, we rest in this "Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God's glory. We can rejoice, too, when we run into problems and trials, for we know that they help us develop endurance. And endurance develops strength of character, and character strengthens our confident hope of salvation. And this hope will not lead to disappointment. For we know how dearly God loves us, because he has given us the Holy Spirit to fill our hearts with his love. When we were utterly helpless, Christ came at just the right time and died for us sinners...So now we can rejoice in our wonderful new relationship with God because our Lord Jesus Christ has made us friends of God."
Thursday, April 7, 2016
What's Our Story
From Jake
I've taken a lot of time to decide whether to write a post or not. I haven't felt a strong urge to express to the world how I feel until now. Don't get too excited because I'm probably just going to ramble on and on.
It's been about 27 days since Beck entered this world with a bang; and it took a monumental effort in the first couple of days to keep him with us. Even though he need a lot of intervention he greatly impressed the whole NICU team with his response to the treatment. This gave Amy and I so much comfort that our Lord was with Beck. One of the docs said "I can't believe how well he is doing...he's a different kid." All I could think to myself was, "I asked God not to hold back on miracles" because I knew we would need a whole basket full and God poured out his grace to Beck. And for the past few weeks all we focused on is "growing" Beck. Packing on the ounces (he's over 6 pounds now) to where he now doesn't fit in preemie clothes anymore. But, the docs warned us that this journey will be a roller coaster.
As I write this blog Beck is getting a spinal tap (drawing spinal fluid) because he has been struggling for several days with maintaining his vitals. They believe Beck may have an infection which has caused him to periodically stop breathing(apnea). These event are extremely scary. You get to watch your kid's vitals dump and all you want to do is hold him but you can't touch him because the docs want to see if he can "self" recover. After about 7 seconds if he's hasn't started breathing you have to stimulate him by rubbing his back or feet to remind him to breath. I think this event is why I have finally decided to write. The uncertainty that we still feel about bringing Beck home is still real.
Amy and I had the chance to go out to dinner the other night because my sister was willing to babysit Beck for us(we didn't have to try very hard:). We were so excited to get to go on a date and escape the NICU for a couple hours. However, the NICU followed us on our date and we spent the better part balling our eyes out as we let all our emotions flow. What I realized is that I'm struggling to separate what happened with my daughter Hailey from my current situation with Beck. I feel "on guard" all the time because if I let my guard down then I'm gonna loose Beck. I have felt unable to fully put God in control of Beck. I feel that somehow by me worrying I can extend Beck's life. I so want to be his dad and make everything better fully knowing my Heavenly Father is far more capable. "Can any one of you by worrying add a single hour to your life?"Matthew 6:27 There is so much more in the rest of this chapter but this verse helps to calm the heart. I keep telling myself "let go and give it to the one that can bare it." This feels impossible! If I let my guard down I will lose Beck. Horrible feeling.
I don't have a fancy way of summing up this blog or a feel good ending to let you all know I'm ok or in a good place. I want so badly to bring my son home and am clouded by that desire. However, I will give you some good news, Beck tolerated the spinal tap really well and now they will start antibiotics to try to stay ahead of a possible infection. Pray for more miracles.
I've taken a lot of time to decide whether to write a post or not. I haven't felt a strong urge to express to the world how I feel until now. Don't get too excited because I'm probably just going to ramble on and on.
It's been about 27 days since Beck entered this world with a bang; and it took a monumental effort in the first couple of days to keep him with us. Even though he need a lot of intervention he greatly impressed the whole NICU team with his response to the treatment. This gave Amy and I so much comfort that our Lord was with Beck. One of the docs said "I can't believe how well he is doing...he's a different kid." All I could think to myself was, "I asked God not to hold back on miracles" because I knew we would need a whole basket full and God poured out his grace to Beck. And for the past few weeks all we focused on is "growing" Beck. Packing on the ounces (he's over 6 pounds now) to where he now doesn't fit in preemie clothes anymore. But, the docs warned us that this journey will be a roller coaster.
As I write this blog Beck is getting a spinal tap (drawing spinal fluid) because he has been struggling for several days with maintaining his vitals. They believe Beck may have an infection which has caused him to periodically stop breathing(apnea). These event are extremely scary. You get to watch your kid's vitals dump and all you want to do is hold him but you can't touch him because the docs want to see if he can "self" recover. After about 7 seconds if he's hasn't started breathing you have to stimulate him by rubbing his back or feet to remind him to breath. I think this event is why I have finally decided to write. The uncertainty that we still feel about bringing Beck home is still real.
Amy and I had the chance to go out to dinner the other night because my sister was willing to babysit Beck for us(we didn't have to try very hard:). We were so excited to get to go on a date and escape the NICU for a couple hours. However, the NICU followed us on our date and we spent the better part balling our eyes out as we let all our emotions flow. What I realized is that I'm struggling to separate what happened with my daughter Hailey from my current situation with Beck. I feel "on guard" all the time because if I let my guard down then I'm gonna loose Beck. I have felt unable to fully put God in control of Beck. I feel that somehow by me worrying I can extend Beck's life. I so want to be his dad and make everything better fully knowing my Heavenly Father is far more capable. "Can any one of you by worrying add a single hour to your life?"Matthew 6:27 There is so much more in the rest of this chapter but this verse helps to calm the heart. I keep telling myself "let go and give it to the one that can bare it." This feels impossible! If I let my guard down I will lose Beck. Horrible feeling.
I don't have a fancy way of summing up this blog or a feel good ending to let you all know I'm ok or in a good place. I want so badly to bring my son home and am clouded by that desire. However, I will give you some good news, Beck tolerated the spinal tap really well and now they will start antibiotics to try to stay ahead of a possible infection. Pray for more miracles.
Friday, April 1, 2016
Update 34 Weeks
Today was the day my mom was supposed to come so that she could be here for my scheduled c-section on Sunday, the day Beckland and I turned 34 weeks!
Beck had other ideas of when he should enter this world and we were happy to meet him earlier than expected. Here are some updates...
* Beckland came off all assistance in breathing last Thursday. He lasted 5 days before needing more assistance. He is back on a nasal cannula at low flow with oxygen around 24%. This is totally normal for a baby that had as rough of a start as he did. He is still learning how to breathe and make everything work. He is still young and growing.
* He is now 5 pounds 5 ounces. He gains around 40-50 grams a day now! BIG boy growing :)
* We have started the grueling journey of breastfeeding. Beck still is learning how to breathe, suck and swallow all at the same time. Some times he forgets to do some of those things resulting in not breathing or choking. SCARY stuff. Because he couldn't eat for the first week of his life and because of how small he is, I make a lot more milk than he needs. So we are trying to pump and breastfeed all in one sitting. The whole process takes a little over an hour to do. But, we have to do this every three hours. It makes for LONG days and nights. Trying to be patient with each other and learn together how to do this.
*Because Beck is starting to learn how to feed, I, Amy, am here permanently now. Which also puts a new exhaustion on this process. Before(really, I have only done it twice) I would escape home for a night or two of rest on the weekends while Jake was here with Beck. I already hate this hospital and now I have to voluntarily be here. It's harder than I thought.
*Mason is having the time of his life living with Papa and Gogo(my parents) for a few weeks. He plays with marbles, perfecting his balance bike with the neighbor boys, going to many different parks, easter egg hunts, and pools! Have I mentioned how wonderful our families have been?!! It wouldn't be possible to do what we are doing if we didn't have our families.
That's it for now! There is no talk of future plans or what the future looks like for us. We take it day by day. We have daily meetings with doctors to talk about plans and goals for the day. It really is up to Beckland. He steers the ship with how much progress he makes and where we go! I also wanted to let you all in on a choice that Jake and I had made way back to right before Mason was born. We had and still choose to not post any pictures of our kiddos on social media or the internet. We do it out of safety and we like the idea of letting them, when they are adults, choose to what extent they want their lives played out on social media and the internet to be. They would get to choose what pictures they want out there. So, because of that choice we won't be posting any pictures of Beckland on here. If you do want a picture of him, or Mason, feel free to contact Jake or I and we would LOVE to show you our beautiful boys( people say Beck looks like Mason but I don't see it yet):)
From room 80,
Amy
Beck had other ideas of when he should enter this world and we were happy to meet him earlier than expected. Here are some updates...
* Beckland came off all assistance in breathing last Thursday. He lasted 5 days before needing more assistance. He is back on a nasal cannula at low flow with oxygen around 24%. This is totally normal for a baby that had as rough of a start as he did. He is still learning how to breathe and make everything work. He is still young and growing.
* He is now 5 pounds 5 ounces. He gains around 40-50 grams a day now! BIG boy growing :)
* We have started the grueling journey of breastfeeding. Beck still is learning how to breathe, suck and swallow all at the same time. Some times he forgets to do some of those things resulting in not breathing or choking. SCARY stuff. Because he couldn't eat for the first week of his life and because of how small he is, I make a lot more milk than he needs. So we are trying to pump and breastfeed all in one sitting. The whole process takes a little over an hour to do. But, we have to do this every three hours. It makes for LONG days and nights. Trying to be patient with each other and learn together how to do this.
*Because Beck is starting to learn how to feed, I, Amy, am here permanently now. Which also puts a new exhaustion on this process. Before(really, I have only done it twice) I would escape home for a night or two of rest on the weekends while Jake was here with Beck. I already hate this hospital and now I have to voluntarily be here. It's harder than I thought.
*Mason is having the time of his life living with Papa and Gogo(my parents) for a few weeks. He plays with marbles, perfecting his balance bike with the neighbor boys, going to many different parks, easter egg hunts, and pools! Have I mentioned how wonderful our families have been?!! It wouldn't be possible to do what we are doing if we didn't have our families.
That's it for now! There is no talk of future plans or what the future looks like for us. We take it day by day. We have daily meetings with doctors to talk about plans and goals for the day. It really is up to Beckland. He steers the ship with how much progress he makes and where we go! I also wanted to let you all in on a choice that Jake and I had made way back to right before Mason was born. We had and still choose to not post any pictures of our kiddos on social media or the internet. We do it out of safety and we like the idea of letting them, when they are adults, choose to what extent they want their lives played out on social media and the internet to be. They would get to choose what pictures they want out there. So, because of that choice we won't be posting any pictures of Beckland on here. If you do want a picture of him, or Mason, feel free to contact Jake or I and we would LOVE to show you our beautiful boys( people say Beck looks like Mason but I don't see it yet):)
From room 80,
Amy
Tuesday, March 22, 2016
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!
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!
Wednesday, March 16, 2016
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
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