My rant for the day...
So we have had a visiting nurse come and another woman from a different agency come to our house to check in on Joshua. Both women, the first thing out of their mouths was..."Are you babysitting? or... are they ALL yours?"
REALLY!?!? Last time I checked "normal" people still had four kids. Once you get to 5, maybe you are stereotyped as a little crazy, but four is still relatively common and normal. Four can still fit comfortably in a minivan. And for the record, my kids were actually really well-behaved and calm when the visitors were here. The kids have been instructed how to behave for the many visits and phone calls in regard to Joshua and they have been doing pretty well considering their ages! But really ladies, you are allowed to think those thoughts, but please think twice before you verbalize them. This stay at home mom works quite hard and sacrifices a lot for her family to make it work on one income and stay sane staying 24/7 at home with 4 kids under 7...and after staying 149 days with one child in the NICU! Oh and... not all micro-preemie moms are first-time parents! Yes, the other three were full-term and no, the doctors have no idea why my water broke so early. Sometimes things just happen that are out of our control!
Wednesday, January 29, 2014
Monday, January 27, 2014
First bath at home!
You've had many sponge baths in the NICU...every Tuesday and Saturday evening. They were done with special wet wipes and no soap, so this was your first real sponge bath. We kept the towel around you to stay warm but you still got pretty cold and didn't like it. Abby was the photographer since Daddy was at work.
***and an update***since this first bath, you absolutely have LOVED every bath we have given you. You always quiet down and are so alert. You love looking around, getting your head rubbed and your scars massaged.
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| Jumbo Umbilical Hernia! |
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| All Clean...and getting a new cannula and stickers |
***and an update***since this first bath, you absolutely have LOVED every bath we have given you. You always quiet down and are so alert. You love looking around, getting your head rubbed and your scars massaged.
Friday, January 24, 2014
Welcome Home Party!!!
You had your first pediatrician appointment today! 9lb 2oz. We're glad you gained a little weight! Mommy took you...definitely felt like a first time mom again with all the equipment!
Shortly after we got home Abby, David, and Jeremiah came home! They had been at Grandma & Grandpa Weide's since Sunday. Grandma dropped everyone off and gave us a little time to visit just the six of us for the first time! Abby got to hold you and the boys were crowded around drinking in your cuteness! Abby loves to tell us how cute you are and how much she loves you. Jeremiah got out a dump truck to show you. I think he really wanted to play with you. David held you next. He was so excited that you were home from the hospital and he seemed very proud of his big brother status. He gazed at you and would look up and smile and say how much he loves you! We asked Jeremiah if he wanted to hold you and he said, "No, I don't want to...want to play Jake and Nederlan' Piewits." Apparently his ship was more fun at that moment than you. Although later on, he came back to the couch to see his new brother again.
After that we had a party to get ready for. Abby had the sign that she made all by herself with the cricut cutter. The kids helped blow up some balloons. Abby put streamers on all of the kitchen chairs. We had a celebration to get ready for! As we were working, the doorbell rang. It was a bunch of balloons from Aunt Elizabeth, Uncle Mike and Noelle. Perfect timing for the party! The kids found "gifts" to give you too. Abby looked for some items that she had when she was a baby and wrapped them up to give to you (a quilt, a small stuffed bear, and a lullaby CD)
Grandma came back and joined in our celebration with pizza, Joshua celebrating, presents, and Dairy Queen cake! Mommy's favorite! It was just the 6 of us plus Grandma, but it was a fun time. We took lots of photos :)
Shortly after we got home Abby, David, and Jeremiah came home! They had been at Grandma & Grandpa Weide's since Sunday. Grandma dropped everyone off and gave us a little time to visit just the six of us for the first time! Abby got to hold you and the boys were crowded around drinking in your cuteness! Abby loves to tell us how cute you are and how much she loves you. Jeremiah got out a dump truck to show you. I think he really wanted to play with you. David held you next. He was so excited that you were home from the hospital and he seemed very proud of his big brother status. He gazed at you and would look up and smile and say how much he loves you! We asked Jeremiah if he wanted to hold you and he said, "No, I don't want to...want to play Jake and Nederlan' Piewits." Apparently his ship was more fun at that moment than you. Although later on, he came back to the couch to see his new brother again.
After that we had a party to get ready for. Abby had the sign that she made all by herself with the cricut cutter. The kids helped blow up some balloons. Abby put streamers on all of the kitchen chairs. We had a celebration to get ready for! As we were working, the doorbell rang. It was a bunch of balloons from Aunt Elizabeth, Uncle Mike and Noelle. Perfect timing for the party! The kids found "gifts" to give you too. Abby looked for some items that she had when she was a baby and wrapped them up to give to you (a quilt, a small stuffed bear, and a lullaby CD)
Grandma came back and joined in our celebration with pizza, Joshua celebrating, presents, and Dairy Queen cake! Mommy's favorite! It was just the 6 of us plus Grandma, but it was a fun time. We took lots of photos :)
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| Hey mom - I'm happy to be home! |
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| Love you Little Buddy! |
Wednesday, January 22, 2014
Singing Praise! 149 days!
Well, discharge day did not start as planned because it started two hours later than I had originally intended. I had set my phone alarm the night before for 6am. My phone was set on vibrate, but apparently today I was in a super duper sound sleep. So sound that I not only did not hear the vibrating, I didn't hear it each of the 12+ times that it rang over the course of 2 hours! My body is exhausted, feeling the effects of five months of sleeplessness. I'm achy and getting a horrible cold; my body apparently craved sleep more than getting up to get my son. Joe says he heard each of the buzzing alarms, but decided not to wake me...he has learned from experience that a tired momma is a cranky momma. Although this day I wish he had taken the risk. So instead of the morning beginning at 6am, it began at 8am. Joshua you are sure teaching your mommy and daddy that whenever we make plans, they are sure to be broken!
Tuesday night, I was really still in disbelief that today would be "the day." Still protecting my heart. Maybe that's why my nerves didn't wake me up before my alarm. But once I awoke (and after I called in to check to see if Joshua passed the car seat test...he did!) I finally allowed myself to realize...this is it! This is THE DAY! The day we've been waiting for, for 149 days! My mind flooded with songs of worship. Songs of praise! Songs that I had not sung in over a decade came to mind...such as...
From the ends of the earth,
From the depths of the sea,
From the heights of the heavens,
Your name be praised.
From the hearts of the weak,
From the shouts of the strong,
From the lips of all people,
This song we raise, Lord.
Throughout the endless ages
You will be crowned with praises,
Lord most high.
Exalted in ev’ry nation,
Sov’reign of all creation,
Lord most high,
Be magnified.
I had my moment of prayer and praise in my bedroom, sitting on the floor next to my wall filled with photos, footprints, and mementos of Joshua. The wall that I stared at for 149 days longing to be with my son. Waiting for him to come home and be HERE! Really here!
Shortly after, Dr. Richter called saying that everything was still a "go" for discharge on her end, BUT the surgeons needed to get an ultrasound on Joshua's scrotum because they were concerned about bowel down there again?! Another hernia?! They were bringing Joshua down to ultrasound right away!
Throughout the endless ages
Oh no! Had I spoke too soon?! Is today really not the day? Joe and I loaded up the car still anticipating discharge today. Took a little video on the way to the hospital. As we were approaching C4A for the last time Dr. Richter called again...the ultrasound showed it is not a hernia, it was just a hydrocele; so Joshua is cleared for discharge! The hydrocele will be monitored by surgery follow-ups.
You will be crowned with praises,
As we approach C4B Room 29 for the last time, we see the sign written on the door that the night nurses had left during Joshua's car seat test. "After 149 days, I'm finally bustin' out!" it read.
Lord most high.
When we get in the room a whirlwind of people come in and out explaining nutrition, home nurse visits, paperwork to sign, nurses saying goodbye, doctor giving her last thoughts. Time to take down our 5 months worth of decorations, and bag up 5 months of accumulated items. In time all is packed up, Joshua is changed into his going home outfit, photos of Team Rumschlag are taken, we hook Joshua up the oxygen tank and apnea monitor and off we go! Pulling him behind us like a parade down the hallway! I wanted people to shout and cheer, I wanted a PA announcement! High fives all around! But the NICU is a quiet place! The nurses who we passed along the way were very excited for us though.
Exalted in ev’ry nation,
So we paraded with one of our primary nurses, Lisa, and another one of our favorites, Nikki, down the hall to say goodbye to Donna the desk clerk who has encouraged me so much throughout this journey with her faith.
Sov’reign of all creation,
Down the elevators, checking out with the security guard. Pulling Joshua in the wagon behind me. Apnea monitor malfunctioning and beeping so loudly! Taking some last minute photos. Willing these photos to capture the moment of joy that we feel to help us tell the story of this wonderful day to our children and our children's children.
Lord most high,
And so we braved the bitter, bitter winter cold and wind. I pick up the car seat to set it in the car and momentarily forget that this child isn't like my other children. Wires, tubes, a monitor, an oxygen tank. I feel like an awkward first time mom even though I've done this three times before. But this time is different, this time I had to wait 149 days! This time my son fought for his life. One hundred forty-nine days! But we did it! He did it! The Lord did it! And so we pulled the car away from NCH and made that trip HOME!
Be magnified.
Tuesday night, I was really still in disbelief that today would be "the day." Still protecting my heart. Maybe that's why my nerves didn't wake me up before my alarm. But once I awoke (and after I called in to check to see if Joshua passed the car seat test...he did!) I finally allowed myself to realize...this is it! This is THE DAY! The day we've been waiting for, for 149 days! My mind flooded with songs of worship. Songs of praise! Songs that I had not sung in over a decade came to mind...such as...
From the ends of the earth,
From the depths of the sea,
From the heights of the heavens,
Your name be praised.
From the hearts of the weak,
From the shouts of the strong,
From the lips of all people,
This song we raise, Lord.
Throughout the endless ages
You will be crowned with praises,
Lord most high.
Exalted in ev’ry nation,
Sov’reign of all creation,
Lord most high,
Be magnified.
I had my moment of prayer and praise in my bedroom, sitting on the floor next to my wall filled with photos, footprints, and mementos of Joshua. The wall that I stared at for 149 days longing to be with my son. Waiting for him to come home and be HERE! Really here!
Shortly after, Dr. Richter called saying that everything was still a "go" for discharge on her end, BUT the surgeons needed to get an ultrasound on Joshua's scrotum because they were concerned about bowel down there again?! Another hernia?! They were bringing Joshua down to ultrasound right away!
Throughout the endless ages
Oh no! Had I spoke too soon?! Is today really not the day? Joe and I loaded up the car still anticipating discharge today. Took a little video on the way to the hospital. As we were approaching C4A for the last time Dr. Richter called again...the ultrasound showed it is not a hernia, it was just a hydrocele; so Joshua is cleared for discharge! The hydrocele will be monitored by surgery follow-ups.
You will be crowned with praises,
As we approach C4B Room 29 for the last time, we see the sign written on the door that the night nurses had left during Joshua's car seat test. "After 149 days, I'm finally bustin' out!" it read.
Lord most high.
When we get in the room a whirlwind of people come in and out explaining nutrition, home nurse visits, paperwork to sign, nurses saying goodbye, doctor giving her last thoughts. Time to take down our 5 months worth of decorations, and bag up 5 months of accumulated items. In time all is packed up, Joshua is changed into his going home outfit, photos of Team Rumschlag are taken, we hook Joshua up the oxygen tank and apnea monitor and off we go! Pulling him behind us like a parade down the hallway! I wanted people to shout and cheer, I wanted a PA announcement! High fives all around! But the NICU is a quiet place! The nurses who we passed along the way were very excited for us though.
Exalted in ev’ry nation,
So we paraded with one of our primary nurses, Lisa, and another one of our favorites, Nikki, down the hall to say goodbye to Donna the desk clerk who has encouraged me so much throughout this journey with her faith.
Sov’reign of all creation,
Down the elevators, checking out with the security guard. Pulling Joshua in the wagon behind me. Apnea monitor malfunctioning and beeping so loudly! Taking some last minute photos. Willing these photos to capture the moment of joy that we feel to help us tell the story of this wonderful day to our children and our children's children.
Lord most high,
And so we braved the bitter, bitter winter cold and wind. I pick up the car seat to set it in the car and momentarily forget that this child isn't like my other children. Wires, tubes, a monitor, an oxygen tank. I feel like an awkward first time mom even though I've done this three times before. But this time is different, this time I had to wait 149 days! This time my son fought for his life. One hundred forty-nine days! But we did it! He did it! The Lord did it! And so we pulled the car away from NCH and made that trip HOME!
Be magnified.
Tuesday, January 21, 2014
Bittersweet!
Maybe I'm weird, but the end of this NICU chapter of Joshua's journey has been bringing many sad emotions to surface. I hate the NICU, hate that my son is sick and has had to fight for his life there. I hate the fact that it tears our family in different directions. I hate that my older three cry because they miss Mommy, they miss normal life. I hate that I'm pulled in so many directions that I have little time for Joe or time for myself. So seeing that the end is so close should have me shouting from the mountain tops...and I am...BUT part of me is sad too.
This chapter has become more comfortable. I'm handling it better than ever before. Joe has commented lately how much I'm less angry, less bitter, just more accepting and hopeful in life. I have learned how to talk with doctors and nurses and I have gained confidence. Change is never easy...even if you are in as hard of a place as this. I have made relationships with a handful of nurses and I am SO sad to have to say goodbye. I may never see some of these women who helped Joshua through this fragile time in his life. I am so grateful for their care for Joshua and their concern for our family. Some I know I will see again in eternity if our paths don't cross at a visit to the NICU or a NICU reunion or somewhere else. They have gotten to know our family and they have shared about theirs. They have given motherly advice and concern to encourage me take care of myself. They have shown interest in our older kids. Some have made me feel more confident for taking a stand and being a squeaky wheel in regard to my son...even when that earned me a reputation that seemed to spread like wildfire through the unit. They acknowledged they would do the same for their baby. Some know my sons cues better than I do and I have to humble myself and ask them what is Joshua's norm in some instances.
And I am so torn at the very end between the need to set up our home for Joshua and spending my last days and nights in a place that in a weird way is like home. Spending time with my NICU "family." I felt so awful when I had to tell a desk clerk (who had been off of work for several days) that that night was our last night! She knew the end was close, but it was an abrupt way to end things. But working there I guess you have to get used to people coming and going.
I spent one last night from Monday into Tuesday. They wanted me to mimic feeding on demand, ad lib like at home. I didn't get much sleep that night...talking to nurses when I should have been sleeping on the convertible couch. In the morning I was able to feed and snuggle with Joshua. While I was doing so, the cleaning lady came in. Throughout our time there, I'd talked many times with this kind woman, learned about her choice to come to America, about her war-torn country that she cannot return to at this time, about her son that passed away, and about her faith. She confidently quotes scripture and speaks of God's faithfulness and provision. This day she came in quietly singing. She can be difficult to understand sometimes with her strong accent. I was not sure if she was singing in her native tongue or in English. We talked a little about Joshua and how tomorrow was THE DAY! She was so happy for us and gave all the glory to God. She told me again how she prays for the babies and families as she moves from room to room. And then as she mopped the floor she began to sing again...and this time she told me what she was singing. And I joined in...
We are standing on holy ground,
And I know there are angels all around
Let us praise Jesus now
For we are standing in His presence on holy ground
And you know...I had never thought about it before, but C4B Room 29 is holy ground. I am certain that there are angels all around my son, protecting him. Jesus is healing my son and like I've said before He has kept Joshua from worse diagnosis...bad symptoms that amount to a relatively simple fix. What a wonderful moment of worship that I will treasure in my heart forever. Singing praises with a woman who takes her simple job of cleaning rooms and uses it to shine Jesus' light.
And as the days are quickly coming to a close and my sadness over leaving and my anxiety over the change, I've also been comforted by Chris Tomlin's song "Whom shall I fear" (God of Angel Armies)
I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
God is with us on every side. He is already ahead of us, with us at home and knows what challenges we will face, what emotions I will feel and I will put my hope in that.
This chapter has become more comfortable. I'm handling it better than ever before. Joe has commented lately how much I'm less angry, less bitter, just more accepting and hopeful in life. I have learned how to talk with doctors and nurses and I have gained confidence. Change is never easy...even if you are in as hard of a place as this. I have made relationships with a handful of nurses and I am SO sad to have to say goodbye. I may never see some of these women who helped Joshua through this fragile time in his life. I am so grateful for their care for Joshua and their concern for our family. Some I know I will see again in eternity if our paths don't cross at a visit to the NICU or a NICU reunion or somewhere else. They have gotten to know our family and they have shared about theirs. They have given motherly advice and concern to encourage me take care of myself. They have shown interest in our older kids. Some have made me feel more confident for taking a stand and being a squeaky wheel in regard to my son...even when that earned me a reputation that seemed to spread like wildfire through the unit. They acknowledged they would do the same for their baby. Some know my sons cues better than I do and I have to humble myself and ask them what is Joshua's norm in some instances.
And I am so torn at the very end between the need to set up our home for Joshua and spending my last days and nights in a place that in a weird way is like home. Spending time with my NICU "family." I felt so awful when I had to tell a desk clerk (who had been off of work for several days) that that night was our last night! She knew the end was close, but it was an abrupt way to end things. But working there I guess you have to get used to people coming and going.
I spent one last night from Monday into Tuesday. They wanted me to mimic feeding on demand, ad lib like at home. I didn't get much sleep that night...talking to nurses when I should have been sleeping on the convertible couch. In the morning I was able to feed and snuggle with Joshua. While I was doing so, the cleaning lady came in. Throughout our time there, I'd talked many times with this kind woman, learned about her choice to come to America, about her war-torn country that she cannot return to at this time, about her son that passed away, and about her faith. She confidently quotes scripture and speaks of God's faithfulness and provision. This day she came in quietly singing. She can be difficult to understand sometimes with her strong accent. I was not sure if she was singing in her native tongue or in English. We talked a little about Joshua and how tomorrow was THE DAY! She was so happy for us and gave all the glory to God. She told me again how she prays for the babies and families as she moves from room to room. And then as she mopped the floor she began to sing again...and this time she told me what she was singing. And I joined in...
We are standing on holy ground,
And I know there are angels all around
Let us praise Jesus now
For we are standing in His presence on holy ground
And you know...I had never thought about it before, but C4B Room 29 is holy ground. I am certain that there are angels all around my son, protecting him. Jesus is healing my son and like I've said before He has kept Joshua from worse diagnosis...bad symptoms that amount to a relatively simple fix. What a wonderful moment of worship that I will treasure in my heart forever. Singing praises with a woman who takes her simple job of cleaning rooms and uses it to shine Jesus' light.
And as the days are quickly coming to a close and my sadness over leaving and my anxiety over the change, I've also been comforted by Chris Tomlin's song "Whom shall I fear" (God of Angel Armies)
I know Who goes before me
I know Who stands behind
The God of angel armies
Is always by my side
The One who reigns forever
He is a Friend of mine
The God of angel armies
Is always by my side
God is with us on every side. He is already ahead of us, with us at home and knows what challenges we will face, what emotions I will feel and I will put my hope in that.
Monday, January 20, 2014
More freezer space!
Friday, January 17, 2014
Sneaky, sneaky...
Well, the plan was for you to get your NG tube out on Monday and see how feedings would go...sink or swim, BUT you were a sneaky little boy and decided to pull it out yourself yesterday! This is really nothing new, you usually pull out your tube several times a week. But this time I was holding you and you were so sneaky right in front of my eyes! I was giving you a break from nursing, just talking to you. Your hands were by your face, it kind of looked like you were scratching your face. I could see the NG tube under the tape, but all of a sudden I realized...hey the tube isn't in your nose anymore! You had gradually pulled it and slid it under the tape. You were very sneaky! The NNP decided to leave the NG out and give you the chance to prove yourself a little early. You have done pretty well, not finishing all your bottles, but finishing at least 70% of each one. However, tonight you lost a little weight. They are going to keep a close eye on you to make sure you are eating enough...drink Joshua drink ...we want you to come home. You don't want that NG tube in again!
Discharge is coming fast and furious. So many people to talk with, calls to make, oxygen to get set up, forms to fill out, and loose ends to tie up. And deciding how to set up our house for Joshua...oxygen upstairs or downstairs...why won't insurance just pay for two concentrators? Ugh...the stress has returned in full force. I've been looking forward to this time for so long. I'm in disbelief that it is getting so close and I certainly didn't think it would make this mom of four would feel so stressed and anxious about something we've been longing for!
Discharge is coming fast and furious. So many people to talk with, calls to make, oxygen to get set up, forms to fill out, and loose ends to tie up. And deciding how to set up our house for Joshua...oxygen upstairs or downstairs...why won't insurance just pay for two concentrators? Ugh...the stress has returned in full force. I've been looking forward to this time for so long. I'm in disbelief that it is getting so close and I certainly didn't think it would make this mom of four would feel so stressed and anxious about something we've been longing for!
Thursday, January 16, 2014
Oh Happy Day!
Joshua you pulled through your surgery with flying colors. Last night they wheeled you back to the room and you were so quiet and content and looking all around. You were very intrigued with the mirror like warmer above your head that was reflecting all sorts of colors. Such a change from last time they wheeled you back after the same surgery. Last time you were vented, limp, and puffy. Today you were back on the cannula, alert and looking cute! I really wish I had taken a photo. It made me so happy to see you that way.
Daddy and I held you shortly after you were settled back in your room and you were allowed to try to eat soon after you got back! You did great through the night and didn't need any morphine, just some Tylenol! Daddy and I opted to give you a type of epidural for your surgery instead of narcotics for pain. I thought it might allow you to be less groggy, have a quicker recovery, and be successful with breathing and eating...sure enough, it worked.
Thank you Lord, for bringing my son through surgery. Thank you for guiding Dr. Brewer's hands as he worked slowly to separate all of the scar tissue. Thank you that he was able to repair both the right and left, direct and indirect, hernias. Lord we pray that these holes stay closed, that they would not recur again. Help the incisions to heal well with no complications or infection. Thank you that Joshua came back breathing on his own on the cannula and thank you for a line-up of our primary nurses to take care of Joshua today and yesterday. Thank you for this step that gets us closer to home. Thank you always watching over our son!
Joshua - Seeing you today, acting as if you never had surgery yesterday brings joy to my heart and a smile to my face! Oh happy day!
AND...Monday the doctor said they are going to take out your NG tube and sink or swim we'll see how well you do! We'll see if you gain weight. Is it possible that you may be going home in the next week?!?!
Daddy and I held you shortly after you were settled back in your room and you were allowed to try to eat soon after you got back! You did great through the night and didn't need any morphine, just some Tylenol! Daddy and I opted to give you a type of epidural for your surgery instead of narcotics for pain. I thought it might allow you to be less groggy, have a quicker recovery, and be successful with breathing and eating...sure enough, it worked.
Thank you Lord, for bringing my son through surgery. Thank you for guiding Dr. Brewer's hands as he worked slowly to separate all of the scar tissue. Thank you that he was able to repair both the right and left, direct and indirect, hernias. Lord we pray that these holes stay closed, that they would not recur again. Help the incisions to heal well with no complications or infection. Thank you that Joshua came back breathing on his own on the cannula and thank you for a line-up of our primary nurses to take care of Joshua today and yesterday. Thank you for this step that gets us closer to home. Thank you always watching over our son!
Joshua - Seeing you today, acting as if you never had surgery yesterday brings joy to my heart and a smile to my face! Oh happy day!
AND...Monday the doctor said they are going to take out your NG tube and sink or swim we'll see how well you do! We'll see if you gain weight. Is it possible that you may be going home in the next week?!?!
Tuesday, January 14, 2014
Open heart surgery
I've been working on this post for a while...started it about 10 days ago and am posting it today...
Open heart surgery...this is my surgery, not Joshua's. I look back on these past 4 and a half months since my water broke and think about the time that has passed and, in a way, I feel like I'm in the middle of open heart surgery. My heart has been torn in two. The pain that has been inflicted is real and raw. My life has been turned upside down. What little joy I had has been taken. I have reached lows that I didn't know were reachable. And cried till absolute exhaustion. But through prayers of others and my own prayers I am beginning to see the work that God is doing...on my heart.
I am thankful for the prayers others have lifted for Joshua when I do not have the strength to lift one on my own. Yes, the Lord has been working on Joshua. I don't always like God's timing of things or the length of time that passes before Joshua is healed from one ailment to another, but He is healing Joshua. A blog post I read opened my eyes to a new way of looking at things...One doctor said to this mom(in regard to unexplained symptoms that were resolved in her daughter), “there is no scientific reason. Your Christian faith has protected your daughter, my friend”. And I am beginning to believe that this has been the case for Joshua. If you ask any nurse who has taken care of Joshua they would say, he has been through the ringer...he has read the preemie book and checked everything off the list, but he is doing SO WELL and has come SO FAR from where he was. Some of his diagnoses never amounted to much. There were several days where Joshua has really bad symptoms, but cultures and tests came back negative and it was Jesus who protected our son. The God of angel armies has gone before us, stands behind us and is always with us.
In my heart though I have seen the beginning of changes...
Recently, I can honestly say that I'm okay with this journey taking longer than I desire. I trust that each day has some purpose for us to be in the NICU. Either for me to shine my light to others, for others to shine their light and encourage me, for Joshua to grow stronger so we don't end up being readmitted...each day I trust in the Lord's purpose. I entrust all of these NICU days to Him. I am confident He will use it for good. If I need to be in the NICU 100 more days to learn to count my blessings or to find joy, hope, peace, forgiveness then I accept that. God is working on my heart. He has been working these past 129 days (now 140), but I know I still have a ways to go. Some days I have peace walking into the NICU knowing that God has placed me in this moment for such a time as this. He has prepared me for this and will work good in each day of this journey.
"being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Phil 1:6
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
I can also see the ways that I have been stretched physically and ways that my personality has been stretched. Every day I have an opportunity to work on being bold and expressing concerns to doctors and nurses. Every day I have the opportunity to work on my confidence for the person God created me to be. Every day I have the opportunity to work on communicating with my husband. I still have a long way to improve on these! In my tiredness, it is hard to formulate words and sentences clearly; my mind is mushy and jumbled. I need to rely on the Lord for strength.
"May these words of my mouth and this meditation of my heart
be pleasing in your sight, Lord, my Rock and my Redeemer." Psalm 19:14
My heart has also been stretched in asking for help, allowing myself to show vulnerability, letting housework go, letting *some* perfectionism go. I listened to Ann VosKamp's advent video about perfectionism being a gateway for the enemy to rob you of peace. How true. I am never at peace with my imperfect, cluttered house, with expectations I have for myself, or my children. But through this time people have seen my imperfect house *gasp* and I have to be okay with it because there is really no time to clean, do dishes, laundry, sweep etc. I have to let it go.
This journey has also given me opportunity learn the value of time. Each moment of time is more precious than ever as I have to split my time between home and the hospital. Joe reminds me of the value of my time very often.
In this time, I have also had to learn to be still...physically through kangaroo time and pumping time, but also figuratively as we wait and wait for progress and results. Kangaroo time - up to 6 hours in a chair in the same position will teach anyone to be still! Now when I cradle-hold Joshua I read Bible verses to him or make more headway in Ann Voskamp's One Thousand Gifts. Right now the pace of our lives is at such a sprinting pace, I have to consciously make time to be still. Every moment of the day has to be filled with something productive since my time is so precious. But slowly, I am learning the value of time and the value of being still physically and mentally.
Be still, and know that I am God." Psalm 46:10
For two years I have prayed for joy. Is this awful, painful experience how I expected God to lead me to joy? to lead me to thankfulness? There are days like today when I'm able to write this and I can see the work that He is doing. There are still other days that I am down in the dumps and can not grab onto anything to get me out of the darkness that I find myself in. I am scared that as I go through this journey that I may find myself on the other side the same old Sarah desperately wanting to find joy in life. Wanting to find passion in my faith and for my family. Wanting to find peace.
As this journey continues, I have also learned a lot about people and their hearts...Some people have greatly surprised me with their ongoing willingness to help and bless our family. This is a LONG journey and I am blessed when people remember my son. And yet other people have hurt me by ways that they don't acknowledge or seem to "forget" what we are going through. Sometimes this has hurt me deeply. I have remember that people will always fail me, not meet expectations, but
"God is our refuge and strength, an ever-present help in trouble." Psalm 46:1
His love never fails!
I pray that this surgery would cut out the ugliness in my heart, that I may learn to more deeply love, find joy & peace, show patience in ALL things, be kind even when I'm frustrated or hurting, show faithfulness to my Lord, and self-control in my speech and actions, to work on forgiveness. and
"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." 1 Thessalonians 5:16-18
and that I would recognize that ugliness and sin and know - without a doubt - the love my God has for me that he would give his only Son and make this wretch his treasure.
I pray that as this journey continues to Joshua coming home, I pray that I can see His faithfulness. That I take more time to give my kids my full attention. To notice the blessings that all my children are. To awaken my eyes to see beauty in the mundane and have peace in this life.
Lord, I pray that this open heart surgery of sorts, and its healing process will make me more like the Sarah you created me to be.
Open heart surgery...this is my surgery, not Joshua's. I look back on these past 4 and a half months since my water broke and think about the time that has passed and, in a way, I feel like I'm in the middle of open heart surgery. My heart has been torn in two. The pain that has been inflicted is real and raw. My life has been turned upside down. What little joy I had has been taken. I have reached lows that I didn't know were reachable. And cried till absolute exhaustion. But through prayers of others and my own prayers I am beginning to see the work that God is doing...on my heart.
I am thankful for the prayers others have lifted for Joshua when I do not have the strength to lift one on my own. Yes, the Lord has been working on Joshua. I don't always like God's timing of things or the length of time that passes before Joshua is healed from one ailment to another, but He is healing Joshua. A blog post I read opened my eyes to a new way of looking at things...One doctor said to this mom(in regard to unexplained symptoms that were resolved in her daughter), “there is no scientific reason. Your Christian faith has protected your daughter, my friend”. And I am beginning to believe that this has been the case for Joshua. If you ask any nurse who has taken care of Joshua they would say, he has been through the ringer...he has read the preemie book and checked everything off the list, but he is doing SO WELL and has come SO FAR from where he was. Some of his diagnoses never amounted to much. There were several days where Joshua has really bad symptoms, but cultures and tests came back negative and it was Jesus who protected our son. The God of angel armies has gone before us, stands behind us and is always with us.
In my heart though I have seen the beginning of changes...
Recently, I can honestly say that I'm okay with this journey taking longer than I desire. I trust that each day has some purpose for us to be in the NICU. Either for me to shine my light to others, for others to shine their light and encourage me, for Joshua to grow stronger so we don't end up being readmitted...each day I trust in the Lord's purpose. I entrust all of these NICU days to Him. I am confident He will use it for good. If I need to be in the NICU 100 more days to learn to count my blessings or to find joy, hope, peace, forgiveness then I accept that. God is working on my heart. He has been working these past 129 days (now 140), but I know I still have a ways to go. Some days I have peace walking into the NICU knowing that God has placed me in this moment for such a time as this. He has prepared me for this and will work good in each day of this journey.
"being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus." Phil 1:6
"And we know that in all things God works for the good of those who love him, who have been called according to his purpose." Romans 8:28
I can also see the ways that I have been stretched physically and ways that my personality has been stretched. Every day I have an opportunity to work on being bold and expressing concerns to doctors and nurses. Every day I have the opportunity to work on my confidence for the person God created me to be. Every day I have the opportunity to work on communicating with my husband. I still have a long way to improve on these! In my tiredness, it is hard to formulate words and sentences clearly; my mind is mushy and jumbled. I need to rely on the Lord for strength.
"May these words of my mouth and this meditation of my heart
be pleasing in your sight, Lord, my Rock and my Redeemer." Psalm 19:14
My heart has also been stretched in asking for help, allowing myself to show vulnerability, letting housework go, letting *some* perfectionism go. I listened to Ann VosKamp's advent video about perfectionism being a gateway for the enemy to rob you of peace. How true. I am never at peace with my imperfect, cluttered house, with expectations I have for myself, or my children. But through this time people have seen my imperfect house *gasp* and I have to be okay with it because there is really no time to clean, do dishes, laundry, sweep etc. I have to let it go.
This journey has also given me opportunity learn the value of time. Each moment of time is more precious than ever as I have to split my time between home and the hospital. Joe reminds me of the value of my time very often.
In this time, I have also had to learn to be still...physically through kangaroo time and pumping time, but also figuratively as we wait and wait for progress and results. Kangaroo time - up to 6 hours in a chair in the same position will teach anyone to be still! Now when I cradle-hold Joshua I read Bible verses to him or make more headway in Ann Voskamp's One Thousand Gifts. Right now the pace of our lives is at such a sprinting pace, I have to consciously make time to be still. Every moment of the day has to be filled with something productive since my time is so precious. But slowly, I am learning the value of time and the value of being still physically and mentally.
Be still, and know that I am God." Psalm 46:10
For two years I have prayed for joy. Is this awful, painful experience how I expected God to lead me to joy? to lead me to thankfulness? There are days like today when I'm able to write this and I can see the work that He is doing. There are still other days that I am down in the dumps and can not grab onto anything to get me out of the darkness that I find myself in. I am scared that as I go through this journey that I may find myself on the other side the same old Sarah desperately wanting to find joy in life. Wanting to find passion in my faith and for my family. Wanting to find peace.
As this journey continues, I have also learned a lot about people and their hearts...Some people have greatly surprised me with their ongoing willingness to help and bless our family. This is a LONG journey and I am blessed when people remember my son. And yet other people have hurt me by ways that they don't acknowledge or seem to "forget" what we are going through. Sometimes this has hurt me deeply. I have remember that people will always fail me, not meet expectations, but
"God is our refuge and strength, an ever-present help in trouble." Psalm 46:1
His love never fails!
I pray that this surgery would cut out the ugliness in my heart, that I may learn to more deeply love, find joy & peace, show patience in ALL things, be kind even when I'm frustrated or hurting, show faithfulness to my Lord, and self-control in my speech and actions, to work on forgiveness. and
"Rejoice always, pray continually, give thanks in all circumstances; for this is God’s will for you in Christ Jesus." 1 Thessalonians 5:16-18
and that I would recognize that ugliness and sin and know - without a doubt - the love my God has for me that he would give his only Son and make this wretch his treasure.
I pray that as this journey continues to Joshua coming home, I pray that I can see His faithfulness. That I take more time to give my kids my full attention. To notice the blessings that all my children are. To awaken my eyes to see beauty in the mundane and have peace in this life.
Lord, I pray that this open heart surgery of sorts, and its healing process will make me more like the Sarah you created me to be.
Don't get my hopes up
The past few days has been full of ups and downs. Over the weekend you had an awesome day of feeds! You took 7 full bottles in a row and then two breast feeds. That was over 24 hours of no milk through your tube! When I heard the update from the nurse I had to make sure that I heard it correctly! You did AWESOME! Where did this come from?! I was so excited, but knew it wouldn't last forever. Sure enough later on Sunday you tuckered out and didn't even wake up for a few of your feeds. So now you are back to averaging less than 50% of your feeds by mouth.
On Monday during rounds the doctor started talking about discharge. We trialed you off of the oxygen and you lasted only 5 minutes, so you will be going home on oxygen. I'm okay with that - we figured you would. The discharge coordinator said she was going to set up an appointment for home health care to come and set up oxygen on Friday. The attending physician started talking as if you'll be ready for your car seat test and making your way out of here next week!?! Hold on, wait a second...don't we still have surgery? Don't we have to have 48 hours worth of feeds with no tube? I have no idea how we'll be going home next week with that mountain to get over, but Dr. Hansen seems pretty confident you can do it! We shall see!
On Monday during rounds the doctor started talking about discharge. We trialed you off of the oxygen and you lasted only 5 minutes, so you will be going home on oxygen. I'm okay with that - we figured you would. The discharge coordinator said she was going to set up an appointment for home health care to come and set up oxygen on Friday. The attending physician started talking as if you'll be ready for your car seat test and making your way out of here next week!?! Hold on, wait a second...don't we still have surgery? Don't we have to have 48 hours worth of feeds with no tube? I have no idea how we'll be going home next week with that mountain to get over, but Dr. Hansen seems pretty confident you can do it! We shall see!
Saturday, January 11, 2014
Did my ears deceive me?
I have a new favorite nurse practitioner! Her name is Mary...today she asked if anyone had ever mentioned the idea of trying to exclusively breast feed Joshua....WHAT?!?!?!?!?!?!?!? I've told doctors and nurses that this is my goal. They've told me he WILL go home on bottles, at least 4 bottles a day. Doctors have said he needs extra calcium and phosphorus for his osteopenia (low bone mass...the reason for his fracture) and extra calories for his BPD (chronic lung disease) to help build new tissue faster. Another nurse practitioner actually told me that if he doesn't gain more weight that they will cut down on the amount of times I'm able to breast feed and if he still doesn't gain on the curve that they want to see him on, then I may not be able to breast feed at all. That was like a punch in the gut...um...I'm sorry lady, I haven't been working at pumping for over four months in order to be told by a nurse or doctor that I can't breastfeed my child. If Joshua isn't tolerating that would be a different story, but that is not the case.
Joshua is still breastfeeding well in general. Still taking the breast much better than the bottle. Periodically, he does tire at the breast, but this is more of a concern with the bottle. This week even though I breastfed more with my overnight stays, his weight gain has been excellent! So Mary is going to check into other supplementation that we can do to help his bones stay strong. She doesn't think calories are an issue and she complimented me on how well my milk is doing for Joshua! Ultimately Joshua will show us himself if he can handle the straight up breast milk with his weight gain.
Oh Lord, I pray that Mary is on to something. That she can talk to the right people at the pharmacy and relay her thoughts to the doctor...and that the doctor would consider her proposition. I pray that we would continue to get Mary as our NNP throughout the upcoming weeks. She is a good advocate for him. She said after Joshua has recovered from his upcoming surgery would be a good time to try exclusively breast feeding. She kindly asked if I thought it could work with my other commitments with my kids at home...YES! YES! 100 times Yes! If you allow me to, I WILL make it work! ANYTHING to get you home buddy!
Joshua is still breastfeeding well in general. Still taking the breast much better than the bottle. Periodically, he does tire at the breast, but this is more of a concern with the bottle. This week even though I breastfed more with my overnight stays, his weight gain has been excellent! So Mary is going to check into other supplementation that we can do to help his bones stay strong. She doesn't think calories are an issue and she complimented me on how well my milk is doing for Joshua! Ultimately Joshua will show us himself if he can handle the straight up breast milk with his weight gain.
Oh Lord, I pray that Mary is on to something. That she can talk to the right people at the pharmacy and relay her thoughts to the doctor...and that the doctor would consider her proposition. I pray that we would continue to get Mary as our NNP throughout the upcoming weeks. She is a good advocate for him. She said after Joshua has recovered from his upcoming surgery would be a good time to try exclusively breast feeding. She kindly asked if I thought it could work with my other commitments with my kids at home...YES! YES! 100 times Yes! If you allow me to, I WILL make it work! ANYTHING to get you home buddy!
Wednesday, January 8, 2014
Late night pep talks
Oh Joshua, Mommy and Daddy want to get you home so badly. It seems you have plateaued and the end is getting farther away again. This week's doctor says you are making progress on feeds, but both Daddy and I feel you are going backwards. You've had more feeds gavaged and you've slept through a many feeds. Breastfeeding is not quite as successful as when you started out. I notice you are definitely getting more tired more quickly.
The frustrating part is that Mommy thinks more sleep and a more flexible schedule would help you. Sometimes if you cry too long because you are hungry, then there is just no waking you up! You'll wake up for 3 sucks and then fall asleep over and over and over again. So to help give you a boost to hopefully get you closer to the door, Mommy and Daddy decided that I would stay overnight with you and give you some late night pep talks. Staying overnight also gives me the opportunity to breast feed up to 4 times without being away from the older 3 during the day too long. So last night I spent the night for the second time this week to focus exclusively on feeds and getting you to rest. The doctor finally agreed to give me more reign at night so the nurse doesn't have to keep bothering you and waking you up when you are sound asleep. The doc was really reluctant to do this because she doesn't think you are ready to be pushed on feeds, but I think that with the proper rest you'd be much more successful. I want them to give you a chance to prove me wrong...but really, I want us to prove the doctors wrong. We still need to stick pretty closely to the hospital's schedule and follow the "rules", but at least I'm able to be there to help you feed and you can get some rest. I talked with you and prayed for you, trying to will you to stay awake and eat. Funny thing was your best feed was at 4:30am which was NOT on the hospital's timeline, but I took my mommy instincts and fed you anyway.
I am a pretty experienced mom of three...quite experienced in the breast feeding department and have brainstormed so many ways to try to help you. Quite often the doctors just won't listen, or they say you aren't ready for that, or they say they have tried it on other babies and it was too aggressive. Several people have given me their advice on how to help you too, and while I appreciate their thoughtfulness, it frustrates me because I've had many-a-discussion with nurses and doctors. Unless you really experience feeding a sick preemie first hand and know all of the nutritional aspects you really don't know...or know that convincing doctors is not an easy task.
I hope and pray that this helps you get closer to the door. I'm going to try it a few nights a week it I don't get too tired myself! Come on little buddy! You can do it!
The frustrating part is that Mommy thinks more sleep and a more flexible schedule would help you. Sometimes if you cry too long because you are hungry, then there is just no waking you up! You'll wake up for 3 sucks and then fall asleep over and over and over again. So to help give you a boost to hopefully get you closer to the door, Mommy and Daddy decided that I would stay overnight with you and give you some late night pep talks. Staying overnight also gives me the opportunity to breast feed up to 4 times without being away from the older 3 during the day too long. So last night I spent the night for the second time this week to focus exclusively on feeds and getting you to rest. The doctor finally agreed to give me more reign at night so the nurse doesn't have to keep bothering you and waking you up when you are sound asleep. The doc was really reluctant to do this because she doesn't think you are ready to be pushed on feeds, but I think that with the proper rest you'd be much more successful. I want them to give you a chance to prove me wrong...but really, I want us to prove the doctors wrong. We still need to stick pretty closely to the hospital's schedule and follow the "rules", but at least I'm able to be there to help you feed and you can get some rest. I talked with you and prayed for you, trying to will you to stay awake and eat. Funny thing was your best feed was at 4:30am which was NOT on the hospital's timeline, but I took my mommy instincts and fed you anyway.
I am a pretty experienced mom of three...quite experienced in the breast feeding department and have brainstormed so many ways to try to help you. Quite often the doctors just won't listen, or they say you aren't ready for that, or they say they have tried it on other babies and it was too aggressive. Several people have given me their advice on how to help you too, and while I appreciate their thoughtfulness, it frustrates me because I've had many-a-discussion with nurses and doctors. Unless you really experience feeding a sick preemie first hand and know all of the nutritional aspects you really don't know...or know that convincing doctors is not an easy task.
I hope and pray that this helps you get closer to the door. I'm going to try it a few nights a week it I don't get too tired myself! Come on little buddy! You can do it!
Thursday, January 2, 2014
HTT update - 3 weeks corrected!
I liked the idea of my first head to toe update - something I should have started a LONG time ago, but hopefully I'll keep up with it weekly to see your progress. It is hard to believe you are really only 3 weeks old developmentally. This past week you've made huge improvements respiratory-wise!
Brain - stable. Your PT is impressed with your smooth movements, ability to calm yourself, your strength and your ability to be successful at suck/swallow/breathe...this all gives us hope that your IVH will not effect your development too much. Only time will tell.
Eyes - No ROP surgery!!!! NO MORE EXAMS FOR ONE YEAR!
Your bilirubin is finally below 2.0 so you no longer need actigall and you are looking less yellow! You are only on two meds and one is polyvisol which is just a vitamin. The other is Qvar which is a steroid inhaler to help your lungs. All the nurses are very impressed.
We've ditched the temp probe! One less thing attached to you! You do well regulating your temp and they aren't concerned that you are burning too many calories keeping warm. Now they just take your temp at care-times.
It seems you have a little bit of reflux even though you don't spit up. You often make an awful painful face out of the blue then cry, and settle back down. Who wouldn't have reflux with a tube down to your belly for your whole life!?
Lungs - You still have that wheezing old man, smoker cough but this week you've weaned from 1.0L at 30%O2 on Monday to 0.2L at 100%O2 Thursday! You could go home on 0.2! And you are still satting at 100%. Way to go!!! I actually found your cannula up by your eyes today. I'm not sure how long it had been there, but your sats were fine and you were breathing room air for a little bit! The nurse said the same thing happened to her, but she found the cannula blowing in your mouth and you were sucking on the prongs. You love to tug on all your tubes.
Belly/Feeds - You're taking about 50% of the volumes by bottle before you tire out, the rest through your NG tube. You finished your 4th full bottle yesterday! But speaking of tugging on tubes, you pull out your NG tube quite often...at least a few times a week. You are not ready for medium flow nipples yet. When a nurse gets you who doesn't know this or listen closely to report they will feed you with a medium flow nipple and you choke and brady/desat
Hernias - no date set for the inguinal hernia repair (take-2) So no talk of discharge. The umbilical hernia keeps getting bigger and bigger!
You love to have people talk to you and you settle down to voices. You love your paci and still hold it in pretty well - when it falls out your are mad. You still like to be swaddled but your hands have to be loose by your face - no more tight swaddling, but you still need containment. You love to have your head rubbed. But Mommy still gets a little sad feeling the stubble on your head from where your hair was shaved for your PICC lines. You've come a long way little boy!
You were 3500g or 7lb 11oz yesterday! and 19.4 inches.
Dani, your partner in crime, is going home tomorrow. I'm excited for her, but feeling very lonely now at NCH. Our two good friends are home. When will it be your turn?
Brain - stable. Your PT is impressed with your smooth movements, ability to calm yourself, your strength and your ability to be successful at suck/swallow/breathe...this all gives us hope that your IVH will not effect your development too much. Only time will tell.
Eyes - No ROP surgery!!!! NO MORE EXAMS FOR ONE YEAR!
Your bilirubin is finally below 2.0 so you no longer need actigall and you are looking less yellow! You are only on two meds and one is polyvisol which is just a vitamin. The other is Qvar which is a steroid inhaler to help your lungs. All the nurses are very impressed.
We've ditched the temp probe! One less thing attached to you! You do well regulating your temp and they aren't concerned that you are burning too many calories keeping warm. Now they just take your temp at care-times.
It seems you have a little bit of reflux even though you don't spit up. You often make an awful painful face out of the blue then cry, and settle back down. Who wouldn't have reflux with a tube down to your belly for your whole life!?
Lungs - You still have that wheezing old man, smoker cough but this week you've weaned from 1.0L at 30%O2 on Monday to 0.2L at 100%O2 Thursday! You could go home on 0.2! And you are still satting at 100%. Way to go!!! I actually found your cannula up by your eyes today. I'm not sure how long it had been there, but your sats were fine and you were breathing room air for a little bit! The nurse said the same thing happened to her, but she found the cannula blowing in your mouth and you were sucking on the prongs. You love to tug on all your tubes.
Belly/Feeds - You're taking about 50% of the volumes by bottle before you tire out, the rest through your NG tube. You finished your 4th full bottle yesterday! But speaking of tugging on tubes, you pull out your NG tube quite often...at least a few times a week. You are not ready for medium flow nipples yet. When a nurse gets you who doesn't know this or listen closely to report they will feed you with a medium flow nipple and you choke and brady/desat
Hernias - no date set for the inguinal hernia repair (take-2) So no talk of discharge. The umbilical hernia keeps getting bigger and bigger!
You love to have people talk to you and you settle down to voices. You love your paci and still hold it in pretty well - when it falls out your are mad. You still like to be swaddled but your hands have to be loose by your face - no more tight swaddling, but you still need containment. You love to have your head rubbed. But Mommy still gets a little sad feeling the stubble on your head from where your hair was shaved for your PICC lines. You've come a long way little boy!
You were 3500g or 7lb 11oz yesterday! and 19.4 inches.
Dani, your partner in crime, is going home tomorrow. I'm excited for her, but feeling very lonely now at NCH. Our two good friends are home. When will it be your turn?
Wednesday, January 1, 2014
Happy New Year!
Happy New Year Joshua! Another holiday has gone by without you and boy was I sad last night missing you. The feeling just comes on so suddenly. We were watching TV and then just talking with Daddy, then something reminds me of you. I get sad and I have a hard time shaking it. My heart longs for you to come home. This is nothing new, nothing I haven't said before, but the feeling comes so often now. You are getting so close, but yet are still so far away of getting out of there. Oxygen flow, feeds, and hernia surgery...that's it...that is all that needs to happen for you to come home. (unless something else crops up) Mommy is SO frustrated with feeds. I feel like you could be so much more successful on your own time, not on the hospitals schedule, but they won't let me do that until you take about 75% of your volume by mouth. And you would do much better with consistent nurses, but we have new nurses that do not take the recommendations that you need a slow nipple and then you aspirate, choke, and need more O2. So frustrating!
2013 has been the worst year of our lives! 2014 has to be better, but I still feel like I have to reign in my hope and joy until the better days are actually here...when you are home.
2013 has been the worst year of our lives! 2014 has to be better, but I still feel like I have to reign in my hope and joy until the better days are actually here...when you are home.
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