They Moved
Oct 24, 2011 -Katy
and Andy moved out of UW on Friday and to a hotel close by the hospital. UW made
the arrangements due to some possible overcrowding issues. Landon was able to
come up and visit on Saturday and stay the night.
An update from Katy:
Happy Birthday, Baby Jacob!
From Andy:
Oct 25, 2011 -Baby Jacob graced us with his presence this morning @ 9:32 am. He is 6lbs 13oz, his length is yet to be determined due to lines, tubes, etc. Katy followed the usual routine, water breaking around 6:15am, a few pushes after transition, and delivery. She is a miraculous laborer. Jacob came to us unable to breathe on his own.
He was immediately whisked away to the NICU to undergo intubation of the ventilator which is giving him life. After 3 hours of stabilization procedures Jacob and I transferred to Seattle Children's Hospital NICU.
He is undergoing a echocardiogram to examine his heart function and is receiving a PICC line to allow medication to go directly to his heart. X-rays show his bowels are definitely up in his cheat cavity. They are unsure if his liver is there too. His left lung is believed to be 100%, but the condition of his right is still unknown. Katy will overnight University of Washington Medical Center, but should be able to get over here to see Jacob. Our plan now is to just monitor and love him.
Thankfully, I am able to hold his little feet & fingers, and rub his cute little face, chest/tummy, legs and arms. Sometimes the smallest things take up the most room in your heart. I LOVE MY NEW BABY JACOB! Thank you everyone for your support, love, and prayers. We thank you...Jacob thanks you! Pictures to come soon!!!
He was immediately whisked away to the NICU to undergo intubation of the ventilator which is giving him life. After 3 hours of stabilization procedures Jacob and I transferred to Seattle Children's Hospital NICU.
Thankfully, I am able to hold his little feet & fingers, and rub his cute little face, chest/tummy, legs and arms. Sometimes the smallest things take up the most room in your heart. I LOVE MY NEW BABY JACOB! Thank you everyone for your support, love, and prayers. We thank you...Jacob thanks you! Pictures to come soon!!!
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| The NICU |
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| Daddy and Baby Jacob |
Feeling Left Behind
Katy's reflection of the first 36 hours:
Oct 27, 2011 -It has been a very exhausting ride so far. I think I have had about 6 hours of INTERRUPTED sleep in the last 48, not to mention giving birth, checking out of the hospital, moving to Children's, and pumping every 2-3 hours, meeting with family, and taking care of my sweet new baby. First of all, all the basics everyone wants to know:: Full Name: Jacob Robert, Weight: 6 lbs 13 oz, Length: 19 and 1/4 inches.
My water broke at the hotel yesterday (Tuesday) at 6:15 in the morning. We rushed to pack up and head to UW. Jacob was born by 9:30am. It was a great labor and birth. About 3-4 good pushes and he was out. They laid him on my tummy and I got to hold him while Andy cut the cord. He never cried as he could not, only made a grunt in an attempt to gasp for air. Instantly his color changed and he was whisked away as planned. Andy followed every step of the way for the entire day. I was able to have a very brief moment with Jacob before he was transported to Children's. I was suppose to be able to leave UW with a pass that would allow me to go back to the hospital to stay the night, but unbeknownst to everyone except the most high up, UW is no longer doing that b/c insurance companies within the last week or two started to discontinue paying for hospital stays if moms left at any point. Needless to say, the back and forth confusion delayed my getting to Children's.
I spent the day at the hospital floating in and out of reality. One minute I was crying for my baby and the next I was laughing with my sisters about frivolous things like the Housewives of New Jersey. Then I would be snapped back into a flash depression of reality. My labor and delivery happened so fast and then my baby was whisked away and never heard from again, that at many stretches throughout the day it was as though it never really happened. There was a huge emptiness inside me but it was as though the world was carrying on like I was never pregnant to begin with and there was no baby. I was surrounded by my family yet felt completely alone.
About 12-13 hours later, I FINALLY got to be with my baby, and a new reality set in. One that was very foreign to me but the strange part was that Andy seemed familiar with it all and I again felt left behind. He knew where everything was and directed me as I walked the halls in a confused daze. He knew what every number on every screen meant, and what was good, what was not. He knew goal stats and the progress that had been made. He had seen every x-ray and every scan and could tell me all about them as if he was the radiologist. He was on a first name basis with all the docs and nurses and here I hardly could remember the middle name of my own son. (His middle name is Robert after my father). He had made arrangements for where to stay and made contacts we needed for the future. I was so proud and thankful to have Andy take on such a crucial role in our son's life, yet I felt so left in the dark. Now I play a game of catch-up which, amidst the lack of sleep, has felt like a game a can hardly win. That is until this afternoon.
This afternoon the nurse invited me to help change Jacob's bed linens which required one person to hold Jacob while the other scoots the blankets underneath. At first the nurse was going to do the holding but then changed her mind and decided I could do it. It was so nice just to feel the weight of my baby in my hands, to feel his bare skin, and feel life within him. I got to change his diaper and get excited about a great pee output! She taught me about suctioning and let me help in repositioning. Things that may seem so trivial, especially to an experienced mom, were special at the same time. So I walk away from today feeling like I got to "mother" my baby even if it was in the simplest ways.
Jacob has held very stable once his intubation tube was put in a little further after his arrival here at Children's. Every minute has the potential to hold a new adventure, but if he continues to do well, most likely surgery will take place Friday to repair his hernia and put his organs back in place. Lots of prayers please for stability and good stats!
My water broke at the hotel yesterday (Tuesday) at 6:15 in the morning. We rushed to pack up and head to UW. Jacob was born by 9:30am. It was a great labor and birth. About 3-4 good pushes and he was out. They laid him on my tummy and I got to hold him while Andy cut the cord. He never cried as he could not, only made a grunt in an attempt to gasp for air. Instantly his color changed and he was whisked away as planned. Andy followed every step of the way for the entire day. I was able to have a very brief moment with Jacob before he was transported to Children's. I was suppose to be able to leave UW with a pass that would allow me to go back to the hospital to stay the night, but unbeknownst to everyone except the most high up, UW is no longer doing that b/c insurance companies within the last week or two started to discontinue paying for hospital stays if moms left at any point. Needless to say, the back and forth confusion delayed my getting to Children's.
I spent the day at the hospital floating in and out of reality. One minute I was crying for my baby and the next I was laughing with my sisters about frivolous things like the Housewives of New Jersey. Then I would be snapped back into a flash depression of reality. My labor and delivery happened so fast and then my baby was whisked away and never heard from again, that at many stretches throughout the day it was as though it never really happened. There was a huge emptiness inside me but it was as though the world was carrying on like I was never pregnant to begin with and there was no baby. I was surrounded by my family yet felt completely alone.
About 12-13 hours later, I FINALLY got to be with my baby, and a new reality set in. One that was very foreign to me but the strange part was that Andy seemed familiar with it all and I again felt left behind. He knew where everything was and directed me as I walked the halls in a confused daze. He knew what every number on every screen meant, and what was good, what was not. He knew goal stats and the progress that had been made. He had seen every x-ray and every scan and could tell me all about them as if he was the radiologist. He was on a first name basis with all the docs and nurses and here I hardly could remember the middle name of my own son. (His middle name is Robert after my father). He had made arrangements for where to stay and made contacts we needed for the future. I was so proud and thankful to have Andy take on such a crucial role in our son's life, yet I felt so left in the dark. Now I play a game of catch-up which, amidst the lack of sleep, has felt like a game a can hardly win. That is until this afternoon.
This afternoon the nurse invited me to help change Jacob's bed linens which required one person to hold Jacob while the other scoots the blankets underneath. At first the nurse was going to do the holding but then changed her mind and decided I could do it. It was so nice just to feel the weight of my baby in my hands, to feel his bare skin, and feel life within him. I got to change his diaper and get excited about a great pee output! She taught me about suctioning and let me help in repositioning. Things that may seem so trivial, especially to an experienced mom, were special at the same time. So I walk away from today feeling like I got to "mother" my baby even if it was in the simplest ways.
Jacob has held very stable once his intubation tube was put in a little further after his arrival here at Children's. Every minute has the potential to hold a new adventure, but if he continues to do well, most likely surgery will take place Friday to repair his hernia and put his organs back in place. Lots of prayers please for stability and good stats!
One Big Step in the Right Direction!
"For with God nothing shall be impossible" ~Luke 1:37
Oct 28, 2011 -The surgery is complete and the repairs are done. He had a sizable hole on the right side, 2 inches or more. For a little guy, nearly all of his diaphragm was missing. As expected, his bowels, liver, & kidney were out of place, and his right lung was significantly underdeveloped. Everything went as planned, and his pain is managed by an epidural. We expect for him to get a little 'sicker' before things brighten up.
Little Peepers
Oct 29, 2011 -Jacob has been progressing very well after yesterday's surgery. All his levels that need to go up (O2 & ph) are going up, CO2 that is needing to go down is going down. His blood pressure which started quite high due to the trauma of surgery has stabilized to where the doctors would like it to be. Jacob is now only on 50% oxygen (we breathe 21-23%) and although he is still on the ventilator, he's doing the work himself. His blood oxygen levels are at 100%, another great sign! His lungs are functioning on both sides, but to what extent, Katy and Andy are not sure.
Today has been a little tough because Jacob has shown signs of pain and discomfort. He has been really jittery, and shudders quite a bit at times. He has been given more Morphine, on top of the Epidural to ease his pain. He has been hypersensitive to touch and sound at times, but there have been times today where he has had his eyes open and was comfortable and alert. Katy and Andy find it hard to leave his bedside due to the fact that they don't want to miss any of his awake and alert times.
Katy and Andy long for the day when they can spend time holding their precious little gift from God! Seeing him look at you makes it that much harder to resist just scooping him up!
Today has been a little tough because Jacob has shown signs of pain and discomfort. He has been really jittery, and shudders quite a bit at times. He has been given more Morphine, on top of the Epidural to ease his pain. He has been hypersensitive to touch and sound at times, but there have been times today where he has had his eyes open and was comfortable and alert. Katy and Andy find it hard to leave his bedside due to the fact that they don't want to miss any of his awake and alert times.
Katy and Andy long for the day when they can spend time holding their precious little gift from God! Seeing him look at you makes it that much harder to resist just scooping him up!
A Day of Surprises!
FROM KATY:
Oct 30, 2011 -It was an amazing day. We believe the power of everyone's prayer has had an act in all of Jacob's wondrous milestones! In most CDH stories, parents are unable to touch and an especially hold their babies for weeks and weeks. Today, just 4 days old, our prayers were answered and we got to hold Jacob! I don't think our nurse, Jenn, was even able to complete her question when she asked if we wanted to hold him. Even though he had to stay on his little soft palette, it was an absolute gift from GOD! Andy and I were both able to hold time for quite some time, however it was not as long as we would have liked. I'm dying for the day when I can have skin to skin contact!
He had a chance to see his big brother and meet his big sister. Hazel has always called her pacifier a 'bite'. She has been seeing pictures of Baby Jacob, and when she points to his breathing tube she says, "Baby bite?" After seeing Jacob, Hazel kept talking about her 'baby buh buh' (brother) and his 'baby bite'.
Landon also adores his little brother. He loves to examine, touch, and talk to Jacob. They spent a lot of time together, and even had a bonding moment when Jacob opened his eyes. Landon was so cute as he said, "Baby Jacob, open your eyes, wake up. Come on little guy, open your eyes, it's your big brother." We can tell Landon is going to protect his little brother forever.
This morning the pain management team discontinued Jacob's epidural, as it had a small leak. We knew this was common among baby epidurals as the line was smaller than the needle to insert it. After a while, the surgery team thought it was best to continue the epidural even if it wasn't doing 100%. Jacob seems to be in little or no pain today.
All day Jacob's Nitric Oxide (NO) level was being weaned. NO is a vasodilator that widens and relaxes the vessels increasing the amount of oxygen and blood through them. When he entered the NICU, his rating was at 20. We are hoping by early tomorrow morning he will be completely weaned from NO.
After all of today's miracles and milestones, we hope Jacob continues progressing so we can take him home where he belongs!
A Few Setbacks but Back on Track
From Katy & Andy:
Nov 2, 2011 -Monday morning we arrived at the NICU to hear some disappointing news. Jacob had several set backs early that morning that delayed his progress a bit. Over Sunday night they weaned him completely off the nitric oxide and he seemed to be tolerating it well. We were so excited since that meant that weaning him off the ventilator would be next! He was making such great strides...that is until his left lung (the good one) slightly collapsed due to his lung tissue having too much fluid (also known as 'wet lung'). The doctors also decided to remove his epidural because it was leaking and they were afraid the wetness would affect the integrity of his skin. They also were unsure of how effective it really was at that point anyway. Needless to say, it was still doing its job and since it was removed, Jacob has had to have his morphine increased. The day only continued to get worse as he started to develop a fever. Poor Jacob felt awful! He was very sad and crying, and his stats and blood gases fell significantly. It was a very hard day for us too seeing our baby suffering and not knowing how to help him. The day was very long. We never felt comfortable leaving his side. It was one of those days where we did not leave to eat or anything else for fear that the moment we left something else would happen.
Tuesday was a much easier day for the three of us (and his nurses!) Jacob was very content and SLEEPY! He he spent the entire day in a deep sleep recovering from all his upsets the day before. Slowly his blood gases started improving and he needed very little pain medication (in addition to his morphine drip). His left lung was recovering steadily from the previous day's setback. His only trouble was retaining a lot of extra fluid. He is now on a medication for that as well.
Today was arrived at the hospital to receive very happy surprises. First of all, Jacob was bright eyed and alert! He was looking all around, enjoying his classical baby music, and taking in all the sights! He stayed awake for hours and clearly displayed his one week old abilities. He is figuring out his hands and how to grab at his tubes. He doesn't really try to pull them out but likes to hold on or try to put his hands in his mouth. He is able to focus his eyes more and steadily look at objects. He also has started to intently cry and has real tears. The only hard part for us is he can't really cry because of his breathing tube. So it is silent and looks like a baby crying on T.V. without the volume turned up. It is hard for us because we cannot pick him up to console him and sometimes touching him seems to make him cry even harder. It is a very helpless feeling.
After a morning full of energy and curiosity, Jacob fell into a peaceful slumber...and so did Mommy. I was able to put down the side rail and lay my head next to his taking in his sweet (medical) baby smell. I could feel his warmth radiating from his precious head and hear his little breaths. It was all too easy to get carried away and imagine laying side by side with him for a sweet snuggle. I can't wait for that day to come.
Another great surprise was his blood gases were amazing!! His CO2 dropped from 66 to 49. (The doctors want him to be below 50.) Even better, his numbers remained good all day. He is VERY slowly being weaned off the ventilator and is only requiring 40% oxygen at this time (you and I breathe 21%) so we are getting much closer!
To top off the day, Jacob got a nasogastric tube (NG tube), a thin, flexible tube inserted through the nose for feeding. He was able to receive breast milk for the first time today! We also used a Q-tip to put some in his mouth which he LOVED! He just sucked away! All through the day he continued to suck on his vent tube giving us hope that he won't have such terrible oral aversions as a good majority of CDH babies do. He continued to be calm and comfortable throughout the day up until he threw up. That really scared Mommy as it was so abnormal and unexpected. His little tummy was just too full of mucus and not used to anything in it yet. He seemed to be digesting the milk well though and fell right back into a comfy slumber once he was suctioned. We will continue to see how he tolerates his milky through the night and tomorrow!
We are hoping for stability through the night and most likely he will have the drain in his abdomen removed tomorrow. This will allow him to be much more comfortable and easier for us to hold him! : )
Nov 2, 2011 -Monday morning we arrived at the NICU to hear some disappointing news. Jacob had several set backs early that morning that delayed his progress a bit. Over Sunday night they weaned him completely off the nitric oxide and he seemed to be tolerating it well. We were so excited since that meant that weaning him off the ventilator would be next! He was making such great strides...that is until his left lung (the good one) slightly collapsed due to his lung tissue having too much fluid (also known as 'wet lung'). The doctors also decided to remove his epidural because it was leaking and they were afraid the wetness would affect the integrity of his skin. They also were unsure of how effective it really was at that point anyway. Needless to say, it was still doing its job and since it was removed, Jacob has had to have his morphine increased. The day only continued to get worse as he started to develop a fever. Poor Jacob felt awful! He was very sad and crying, and his stats and blood gases fell significantly. It was a very hard day for us too seeing our baby suffering and not knowing how to help him. The day was very long. We never felt comfortable leaving his side. It was one of those days where we did not leave to eat or anything else for fear that the moment we left something else would happen.
Tuesday was a much easier day for the three of us (and his nurses!) Jacob was very content and SLEEPY! He he spent the entire day in a deep sleep recovering from all his upsets the day before. Slowly his blood gases started improving and he needed very little pain medication (in addition to his morphine drip). His left lung was recovering steadily from the previous day's setback. His only trouble was retaining a lot of extra fluid. He is now on a medication for that as well.
Today was arrived at the hospital to receive very happy surprises. First of all, Jacob was bright eyed and alert! He was looking all around, enjoying his classical baby music, and taking in all the sights! He stayed awake for hours and clearly displayed his one week old abilities. He is figuring out his hands and how to grab at his tubes. He doesn't really try to pull them out but likes to hold on or try to put his hands in his mouth. He is able to focus his eyes more and steadily look at objects. He also has started to intently cry and has real tears. The only hard part for us is he can't really cry because of his breathing tube. So it is silent and looks like a baby crying on T.V. without the volume turned up. It is hard for us because we cannot pick him up to console him and sometimes touching him seems to make him cry even harder. It is a very helpless feeling.
Another great surprise was his blood gases were amazing!! His CO2 dropped from 66 to 49. (The doctors want him to be below 50.) Even better, his numbers remained good all day. He is VERY slowly being weaned off the ventilator and is only requiring 40% oxygen at this time (you and I breathe 21%) so we are getting much closer!
To top off the day, Jacob got a nasogastric tube (NG tube), a thin, flexible tube inserted through the nose for feeding. He was able to receive breast milk for the first time today! We also used a Q-tip to put some in his mouth which he LOVED! He just sucked away! All through the day he continued to suck on his vent tube giving us hope that he won't have such terrible oral aversions as a good majority of CDH babies do. He continued to be calm and comfortable throughout the day up until he threw up. That really scared Mommy as it was so abnormal and unexpected. His little tummy was just too full of mucus and not used to anything in it yet. He seemed to be digesting the milk well though and fell right back into a comfy slumber once he was suctioned. We will continue to see how he tolerates his milky through the night and tomorrow!
We are hoping for stability through the night and most likely he will have the drain in his abdomen removed tomorrow. This will allow him to be much more comfortable and easier for us to hold him! : )
Holding Steady!
Nov 6, 2011 -Things have been about the same for Jacob. He had a little setback with his feedings. Well, actually a big setback...he didn't tolerate them at all and had to have his NG tube removed. He kept throwing up and it is unclear if it is because his tummy just isn't ready or if it is the beginning signs of reflux. Reflux is very common in CDH babies and common for our other two kiddos so it wouldn't be a big surprise if that is going to be a battle for Jacob as well. For now he continues to get IV nutrition and we will try feeds again soon after his tummy is settled. He has had some trouble with the drain that has been in his stomach and it had to be replaced. It may be awhile before he gets a new feeding tube.
Happy news for Jacob. He got his chest tube out (a great source of pain) and he has been doing so much better! He seems much more relaxed and comfortable. Not having the chest tube has allowed us to hold him more frequently. It also has allowed Jacob to lay in more comfortable positions and to be swaddled. He really seems to like laying on his tummy and being all wrapped up!
Not only have we been able to hold him, but Landon even got to also! Jacob really responds to Landon's voice and touch. You would think Jacob might get overstimulated but it was quite the opposite. In Landon's arms, Jacob's heart and breath rate slowed down into nice relaxed rhythms. His numbers were reflective of his calm sleep patterns even though he was awake. Jacob couldn't take his eyes off of his big brother. They were very happy together!
Landon is really demonstrating his big brother qualities. He gets so excited to see Baby Jacob and check on how he is doing. He sings or hums to Jacob and plays "Baby Mine" over and over again on the CD player. That is what Mommy always sings at bedtime to Landon and Hazel. Landon says it's Jacob's favorite song too.
We are just working on lowering his vent settings and getting his lungs to "dry out." This seems like the slow part of Jacob's journey. Every day is a back and forth. Change one thing, then change it back. Change another, then change it again. It very much is a two steps forward, one step back game that we are playing. So for now we wait...wait for Jacob's blood gases to improve, wait for his tummy to settle, and wait for his ventilator settings to be weaned.
Happy news for Jacob. He got his chest tube out (a great source of pain) and he has been doing so much better! He seems much more relaxed and comfortable. Not having the chest tube has allowed us to hold him more frequently. It also has allowed Jacob to lay in more comfortable positions and to be swaddled. He really seems to like laying on his tummy and being all wrapped up!
Not only have we been able to hold him, but Landon even got to also! Jacob really responds to Landon's voice and touch. You would think Jacob might get overstimulated but it was quite the opposite. In Landon's arms, Jacob's heart and breath rate slowed down into nice relaxed rhythms. His numbers were reflective of his calm sleep patterns even though he was awake. Jacob couldn't take his eyes off of his big brother. They were very happy together!
Landon is really demonstrating his big brother qualities. He gets so excited to see Baby Jacob and check on how he is doing. He sings or hums to Jacob and plays "Baby Mine" over and over again on the CD player. That is what Mommy always sings at bedtime to Landon and Hazel. Landon says it's Jacob's favorite song too.
We are just working on lowering his vent settings and getting his lungs to "dry out." This seems like the slow part of Jacob's journey. Every day is a back and forth. Change one thing, then change it back. Change another, then change it again. It very much is a two steps forward, one step back game that we are playing. So for now we wait...wait for Jacob's blood gases to improve, wait for his tummy to settle, and wait for his ventilator settings to be weaned.
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| Tummy Time with Froggy Woggy (thanks to Landon!) |
The Need for More Air
Update from Andy and Katy:
Nov 8, 2011 -Tonight, our little fighter's health took a bit of turn for the worse. It seems like it has been in the making. After a coughing episode and some struggling tonight, his breath and heart rates increased to worrisome rates. For the past few days, his blood gases showed unproductive results. He continues to have fluid on the lungs and is retaining fluid in general despite medication. Doctors are not sure what is causing his inability to show signs of improvement. Jacob had blood, sputum, and urine cultures done tonight. We'll be awaiting their results for the next 48 hours. In the meantime, he will be starting antibiotics. They are testing for possibilities of pneumonia, blood infection, or other factors.
The team discussed many avenues to go from here. One of which includes moving up to the oscillator ventilator, which as of 11:30 doctors decided it was the best move for Jacob. High frequency oscillatory ventilation (HFOV) simulates the effects of panting: small tidal volumes at a greatly increased rate. This serves to recruit lung tissue by never letting the alveoli completely collapse and it should dramatically improve CO2 removal by maintaining the exposed surface area of the alveoli. The ventilator itself has a piston in the centre of a cone that moves at very high speed to push and pull these tiny tidal volumes into and out of the lung. Now Jacob "wiggles" at the same speed, which is quite disconcerting to watch, but the farther down the body the wiggle goes, the more effective the strategy will be. His sedation level has been increased with morphine boluses and continuing with ativan. The new ventilator makes a continuous tick, tick, tick sound as it vibrates Jacob. Hopefully, the machine will assist with Jacob's need to lower his high CO2 levels. We were hoping that he not need be put on the oscillator as it isn't very comfortable and will require greater sedation.
We ask for prayers of healing for Jacob and of course, as little time as possible on the oscillator.
Nov 8, 2011 -Tonight, our little fighter's health took a bit of turn for the worse. It seems like it has been in the making. After a coughing episode and some struggling tonight, his breath and heart rates increased to worrisome rates. For the past few days, his blood gases showed unproductive results. He continues to have fluid on the lungs and is retaining fluid in general despite medication. Doctors are not sure what is causing his inability to show signs of improvement. Jacob had blood, sputum, and urine cultures done tonight. We'll be awaiting their results for the next 48 hours. In the meantime, he will be starting antibiotics. They are testing for possibilities of pneumonia, blood infection, or other factors.
The team discussed many avenues to go from here. One of which includes moving up to the oscillator ventilator, which as of 11:30 doctors decided it was the best move for Jacob. High frequency oscillatory ventilation (HFOV) simulates the effects of panting: small tidal volumes at a greatly increased rate. This serves to recruit lung tissue by never letting the alveoli completely collapse and it should dramatically improve CO2 removal by maintaining the exposed surface area of the alveoli. The ventilator itself has a piston in the centre of a cone that moves at very high speed to push and pull these tiny tidal volumes into and out of the lung. Now Jacob "wiggles" at the same speed, which is quite disconcerting to watch, but the farther down the body the wiggle goes, the more effective the strategy will be. His sedation level has been increased with morphine boluses and continuing with ativan. The new ventilator makes a continuous tick, tick, tick sound as it vibrates Jacob. Hopefully, the machine will assist with Jacob's need to lower his high CO2 levels. We were hoping that he not need be put on the oscillator as it isn't very comfortable and will require greater sedation.
We ask for prayers of healing for Jacob and of course, as little time as possible on the oscillator.
Little Fighter
From Katy:
Nov 9, 2011 -Jacob has not been doing great for the last few days, and Andy and I felt like something was amiss even though everyone reassured us things were fine. Well, finally his blood gases were consistanly trending in the wrong directions and the doctors became increasingly concerned too. It is unclear what is the matter, but after a gammet of tests, it looks as though Jacob possibly has pneumonia or some other infection. He was put on the oscillator last night in the hopes of improving his CO2 levels (which had been in the high 70s) but instead of improving, they went up into the low 100s-the highest they have ever been. It was decided the oscillator was only making things worse, and he did the best when being "bagged." So he was put back on the conventional ventilator but with major vent setting changes. The change to the oscillator was very hard to accept at this point in Jacob's journey. It is more common for babies to need the oscillator early on. After 2 weeks of holding pretty steady, we felt we were going to be able to escape the more invasive and scary machines. We feel like we are losing any headway Jacob had made, and in some sense, we worry that CDH may have a stronger grip on our baby than we had thought. That scares us to death! Jacob is on antibiotics again and there have been some small CO2 changes in the right direction. He will also be getting a small blood transfusion to help boost his oxygen levels and help flush out fluids he is retaining. Hopefully, we will see some positive changes by this evening.
My sweet boy looks so terrible. He is very puffy, his face is cringed (despite the morphine and lorazepam), and he just looks "sick." He even has an IV in his head. It was torturous to see his little boddy rattle with the oscillator but is no easier seeing my tiny boy just lay there huffing away fighting so hard to breathe on his own with the ventilator. Such a big fight for such a tiny human.
Nov 9, 2011 -Jacob has not been doing great for the last few days, and Andy and I felt like something was amiss even though everyone reassured us things were fine. Well, finally his blood gases were consistanly trending in the wrong directions and the doctors became increasingly concerned too. It is unclear what is the matter, but after a gammet of tests, it looks as though Jacob possibly has pneumonia or some other infection. He was put on the oscillator last night in the hopes of improving his CO2 levels (which had been in the high 70s) but instead of improving, they went up into the low 100s-the highest they have ever been. It was decided the oscillator was only making things worse, and he did the best when being "bagged." So he was put back on the conventional ventilator but with major vent setting changes. The change to the oscillator was very hard to accept at this point in Jacob's journey. It is more common for babies to need the oscillator early on. After 2 weeks of holding pretty steady, we felt we were going to be able to escape the more invasive and scary machines. We feel like we are losing any headway Jacob had made, and in some sense, we worry that CDH may have a stronger grip on our baby than we had thought. That scares us to death! Jacob is on antibiotics again and there have been some small CO2 changes in the right direction. He will also be getting a small blood transfusion to help boost his oxygen levels and help flush out fluids he is retaining. Hopefully, we will see some positive changes by this evening.
My sweet boy looks so terrible. He is very puffy, his face is cringed (despite the morphine and lorazepam), and he just looks "sick." He even has an IV in his head. It was torturous to see his little boddy rattle with the oscillator but is no easier seeing my tiny boy just lay there huffing away fighting so hard to breathe on his own with the ventilator. Such a big fight for such a tiny human.
The Shaker
Nov 9, 2011 -So Jacob didn't stay off the oscillator for long. He was put back on just after writing the last update. His CO2 levels continued to climb into the 100s (normal is 45-55). Jacob's "normal" is usually in the low 60's but he was having days where it was in the 40s. To see 100+ floored us! It was a very rough morning. Jacob's oxygen saturation levels kept dropping to 40% or so. Jacob was holding his breath and would turn dark purple. He was so upset and uncomfortable! The nurse and respiratory therapist had to keep "bagging" him to get him back to the 90s. It is awful to see your baby not breathing over and over and over again! It was decided he needed to go back on the oscillator but under heavy sedation. Jacob was given higher doses of morphine, ativan, and a paralytic to help him not fight the oscillator and stop trying to breath against it.
Jacob is such a tough little guy! Even though he is on the paralytic he is opening his eyes and looking around. His heart and breath rate remain steady so we know he is comfortable. He is not fighting against the oscillator any more and his numbers continue to improve. At this point, he is not being put on ECMO, but he needs to continue in the right direction. It appears it may be pneumonia as suspected and his antibiotics are beginning to work. God's presence is all around us, evident everywhere we turn. We know God is carrying our little boy through and us as well. We ask for continued prayers for Jacob, but also for the doctors and nurses who so diligently care for Jacob. May God grant them the wisdom to make the right decisions in Jacob's healing plan of care.
Tonight we were given a bigger scare. Jacob's CO2 levels improved with being on the oscillator but, much like the first try, his oxygen levels were terrible. Then the discussion of ECMO (heart/lung bypass machine) began. Andy and I were devastated even more than we were already. After two weeks of holding steady, we thought Jacob was out of the woods of these drastic measures. He had been doing so well, we were thinking he would be weaned off the ventilator sooner than later, and we would be moving towards coming home.
Jacob is such a tough little guy! Even though he is on the paralytic he is opening his eyes and looking around. His heart and breath rate remain steady so we know he is comfortable. He is not fighting against the oscillator any more and his numbers continue to improve. At this point, he is not being put on ECMO, but he needs to continue in the right direction. It appears it may be pneumonia as suspected and his antibiotics are beginning to work. God's presence is all around us, evident everywhere we turn. We know God is carrying our little boy through and us as well. We ask for continued prayers for Jacob, but also for the doctors and nurses who so diligently care for Jacob. May God grant them the wisdom to make the right decisions in Jacob's healing plan of care.
Newborn-ness
From Katy:
Nov 10, 2011 -Little Jacob is still on the oscillator but showing signs of improvement. His CO2 levels have come considerably down and his oxygen levels have gone up. This is great news! The doctors have been able to come down on his ventilator support, and Jacob continues to hold steady. They don't plan on making anymore changes for the night, and we will see what tomorrow brings. The cultures confirmed bacteria in his sputum, and Jacob seems to be responding well to the antibiotics. Now that we know his down slide is not due to a virus, Jacob is no longer in "isolation." The nurses are so thankful because now they don't need to put on protective gowns and masks every time they enter the room. Jacob still appears really puffy and doesn't look much like his sweet self.
It is really getting harder and harder to accept that we are missing out on our baby's "newborn-ness." We are missing out on moments we can't get back. When Hazel was born, I kept asking Andy if that was it, were we done having kids. I needed to know if I needed to remember to capture every last baby moment I was going to have as a mom. When we found out that we were pregnant with Jacob, I knew it was going to be the last time. The last time to feel a baby wiggle in my tummy, the last time to experience the miracle of childbirth, the last time to hold my newborn skin to skin and feel the life within them. I love how my newborns fit so cozily in my arms, all tucked tight and warm, so small and folded. Their reflexes are muted and when all their needs are met, they are quiet, content, and happy to just be snuggled. Even at one week old, Jacob started to show signs of "growing up." He was more alert and more active. He started grasping and tugging on his tubes, trying to move his head to look around (he can't move it though because of the vent.), and (silently) crying with intent to express his likes, dislikes, and needs. Now I look at my two and a half week old baby unable to be held or snuggled at all, his NICU bed soaking up all the glory of his "newborn-ness." I watch a tube "feed" him as he gets my breast milk. I feel like I am missing out on Jacob's babyhood and I want a do-over! This is not right! This is not fair! It's not fair for me, and it's not fair for my precious baby that is missing out on all the love we have to give him.
Nov 10, 2011 -Little Jacob is still on the oscillator but showing signs of improvement. His CO2 levels have come considerably down and his oxygen levels have gone up. This is great news! The doctors have been able to come down on his ventilator support, and Jacob continues to hold steady. They don't plan on making anymore changes for the night, and we will see what tomorrow brings. The cultures confirmed bacteria in his sputum, and Jacob seems to be responding well to the antibiotics. Now that we know his down slide is not due to a virus, Jacob is no longer in "isolation." The nurses are so thankful because now they don't need to put on protective gowns and masks every time they enter the room. Jacob still appears really puffy and doesn't look much like his sweet self.
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| Just before the oscillator |
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| Being put on the oscillator the second time |
It is really getting harder and harder to accept that we are missing out on our baby's "newborn-ness." We are missing out on moments we can't get back. When Hazel was born, I kept asking Andy if that was it, were we done having kids. I needed to know if I needed to remember to capture every last baby moment I was going to have as a mom. When we found out that we were pregnant with Jacob, I knew it was going to be the last time. The last time to feel a baby wiggle in my tummy, the last time to experience the miracle of childbirth, the last time to hold my newborn skin to skin and feel the life within them. I love how my newborns fit so cozily in my arms, all tucked tight and warm, so small and folded. Their reflexes are muted and when all their needs are met, they are quiet, content, and happy to just be snuggled. Even at one week old, Jacob started to show signs of "growing up." He was more alert and more active. He started grasping and tugging on his tubes, trying to move his head to look around (he can't move it though because of the vent.), and (silently) crying with intent to express his likes, dislikes, and needs. Now I look at my two and a half week old baby unable to be held or snuggled at all, his NICU bed soaking up all the glory of his "newborn-ness." I watch a tube "feed" him as he gets my breast milk. I feel like I am missing out on Jacob's babyhood and I want a do-over! This is not right! This is not fair! It's not fair for me, and it's not fair for my precious baby that is missing out on all the love we have to give him.
Jinx!
Nov 16, 2011 -It's been over a week since we last updated everyone, as we feared that celebrating the ups would only bring the downs. The roller coaster has been taking several laps and with out stopping at the unloading station. Jacob's levels had been going from one end of the spectrum to the other. The oscillator which has rattled Jacob's body, room, and us for the past week has been removed. We are praying that the conventional ventilator will find Jacob at ease, and allow him to begin breathing on his own.
During Jacob's time on the oscillator we found ourselves hitting an all-time emotional low. Sitting for hours on end staring at his giggling, paralyzed, almost lifeless, body, was very wearing. As Katy stated in her post Newborn-ness, postpartum-like symptoms were setting in. Not only did she feel them, but I began to feel them as well. There was a huge feeling of disconnect to our baby. Our baby boy who had long, skinny arms, legs, fingers, and toes became very swollen. His extremities had become little Vienna sausages, and his face was alien like. In fact, if they would have changed his sheets or removed his decorations from his bed, we wouldn't have recognized our own Jakey. We knew in our hearts that Baby Jacob was in there listening to us talk or sing, or feel our touch. The lack of connection through a hand squeeze or peek at his beautiful eyes, was difficult for us to endure. This time was so difficult that we refrained from taking more than just one photo, which wasn't even him at his worst, as we would never want to take ourselves back to that horrible time.
Good news came on day seven of oscillation. His CO2 levels fell and his oxygen numbers increased. The chest x-ray showed significant development and fluid release of his right lung. The surgical team made the decision to remove the oscillator and vecuronium drip (paralytic), and return to the conventional vent at higher settings. After two hours his blood gas showed minimal improvements, but stability. This morning the team was astonished by his over night gases. They reflected his best ever CO2 and acceptable oxygen levels, resulting in major weaning of his vent and nitric oxide.
This evening, Jacob continues slowly adjusting to his new vent settings. His sedation level has lowered, and he has become more alert. We even were blessed to see his blue eyes. It took quite a bit of time to finally struggle to open them a crack. When he would hear our voices, he would muster up the strength to open his eyes wide to see our faces. He was alert and awake for nearly two hours. The connection that we failing to have just 48 hours ago had vanished. Our sweet Jacob was back with us even if just for a little while. (He is still quite heavily sedated with morphine and ativan drips.)
We are overjoyed, yet reserved with his progress. As silly as it sounds, we have been (and still are) afraid of jinxing his situation by telling everyone when things have a glimmer of hope for improvement. It seems just as things are going good and we tell everyone, things take a turn for the worst. For this reason, sometimes it is easier to write about the bad times than the good. Through all of this, Katy and I have relied on each others strength when one of us has wavered. By the grace of God and each other's company, we've made it through the worst week...so far. (In case of jinxing it) :)
During Jacob's time on the oscillator we found ourselves hitting an all-time emotional low. Sitting for hours on end staring at his giggling, paralyzed, almost lifeless, body, was very wearing. As Katy stated in her post Newborn-ness, postpartum-like symptoms were setting in. Not only did she feel them, but I began to feel them as well. There was a huge feeling of disconnect to our baby. Our baby boy who had long, skinny arms, legs, fingers, and toes became very swollen. His extremities had become little Vienna sausages, and his face was alien like. In fact, if they would have changed his sheets or removed his decorations from his bed, we wouldn't have recognized our own Jakey. We knew in our hearts that Baby Jacob was in there listening to us talk or sing, or feel our touch. The lack of connection through a hand squeeze or peek at his beautiful eyes, was difficult for us to endure. This time was so difficult that we refrained from taking more than just one photo, which wasn't even him at his worst, as we would never want to take ourselves back to that horrible time.
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| Not even at his worst |
Good news came on day seven of oscillation. His CO2 levels fell and his oxygen numbers increased. The chest x-ray showed significant development and fluid release of his right lung. The surgical team made the decision to remove the oscillator and vecuronium drip (paralytic), and return to the conventional vent at higher settings. After two hours his blood gas showed minimal improvements, but stability. This morning the team was astonished by his over night gases. They reflected his best ever CO2 and acceptable oxygen levels, resulting in major weaning of his vent and nitric oxide.
This evening, Jacob continues slowly adjusting to his new vent settings. His sedation level has lowered, and he has become more alert. We even were blessed to see his blue eyes. It took quite a bit of time to finally struggle to open them a crack. When he would hear our voices, he would muster up the strength to open his eyes wide to see our faces. He was alert and awake for nearly two hours. The connection that we failing to have just 48 hours ago had vanished. Our sweet Jacob was back with us even if just for a little while. (He is still quite heavily sedated with morphine and ativan drips.)
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| Opening his swollen eyes at hearing the sound of Mommy's voice |
Pleasant Surprises!
From Andy:
Nov 19, 2011 -The last few days have been absolutely amazing. Jacob has been successfully weaned completely from the oscillator! He is currently on the traditional ventilator once again. Jacob's great change in condition has been better than the doctors anticipated, which has them perplexed once again! His nurses are in awe as much as the doctors, and we are tickled pink! He definitely is a strong little one for only being 25 days old!
All of Jacob's blood gases have been amazing! His pH continues to be well above 7. His CO2 remains low and in the 40s, and his oxygen rich blood is in the 150s+! His nitric, which has assisted with the circulation of blood and oxygen flow, started at a setting of 20, and now is down to 1, with a strong possibility of being completely weaned by morning. That means less tubes, and one less machine! His ventilator settings have continued to be weaned as well. They are lower than they have ever been. His oxygen support is at 30 breaths. He has become quite a strong breather, as he is significantly overpowering the vent with a breath rate 60 and higher. There is a strong possibility, barring any setbacks (had to say in case of jinxes), that he may be off the vent on or before Thursday. That would be a wonderful Thanksgiving Blessing!
He started feedings again at a very minimal amount, 1.5 mL/hr. Today when we returned from a little outing with Landon, he was up to 7.5 mL/hr. This evening he was moved up even more to 9mL/hr! That is still a very small amount for a newborn (just short of two tsp/hr), but it is being increased steadily, as he seems to have no problem digesting the nutrient-rich breast milk. We are so thankful he is able to continue feeds. Now our skinny little Jake is getting bigger due to healthy feedings, not retention of fluids!
Another wonderful surprise for us the ability to hold Jacob again so soon after being removed from the oscillator. He has tolerated, and actually is more calm, when being held. Katy, Landon, and I have been sharing Jacob the past two days. Katy and I hold him as much as possible to make up for lost time from the past week on the oscillator. We've been taking turns spending time with Landon at Ronald McDonald House and with Jacob at Children's. Tonight as Katy was over at the hospital holding him, he was more awake and alert than ever. This is just what Katy needed after last week's lows.
Landon loves his little brother so very much. We love watching the two connect. It's amazing how well, Jakey responds to Landon. We can count on Jacob opening his eyes nearly 100% of the time that Landon talks with him. Landon loves to hold his newborn baby brother. Today, Bugaboo and Jakey even bonded during some playtime, as they shared some Lego Star Wars guys!
Not only does Jakers get love from us, but his doctors and nurses adore him too! Tonight our nurse, gave Jacob an extra long cuddle as she transferred him from my arms to his bed. She talked to and hugged him. It was evident that she would have been perfectly content to hold him for a while longer. His other nurses and doctors come by even when they're off his care (or even working in another unit/floor) to see how he's doing. What love!
There is still a lot to be done before we can leave the hospital. Slowly, but surely, we're closer to getting our Christmas wish granted as we take it One Day at a Time. We can't wait for the day to come home and share Jacob with our friends and family. Thank you everyone for your continued love, support, and prayers for Baby Jacob!
Nov 19, 2011 -The last few days have been absolutely amazing. Jacob has been successfully weaned completely from the oscillator! He is currently on the traditional ventilator once again. Jacob's great change in condition has been better than the doctors anticipated, which has them perplexed once again! His nurses are in awe as much as the doctors, and we are tickled pink! He definitely is a strong little one for only being 25 days old!All of Jacob's blood gases have been amazing! His pH continues to be well above 7. His CO2 remains low and in the 40s, and his oxygen rich blood is in the 150s+! His nitric, which has assisted with the circulation of blood and oxygen flow, started at a setting of 20, and now is down to 1, with a strong possibility of being completely weaned by morning. That means less tubes, and one less machine! His ventilator settings have continued to be weaned as well. They are lower than they have ever been. His oxygen support is at 30 breaths. He has become quite a strong breather, as he is significantly overpowering the vent with a breath rate 60 and higher. There is a strong possibility, barring any setbacks (had to say in case of jinxes), that he may be off the vent on or before Thursday. That would be a wonderful Thanksgiving Blessing!
He started feedings again at a very minimal amount, 1.5 mL/hr. Today when we returned from a little outing with Landon, he was up to 7.5 mL/hr. This evening he was moved up even more to 9mL/hr! That is still a very small amount for a newborn (just short of two tsp/hr), but it is being increased steadily, as he seems to have no problem digesting the nutrient-rich breast milk. We are so thankful he is able to continue feeds. Now our skinny little Jake is getting bigger due to healthy feedings, not retention of fluids!
Another wonderful surprise for us the ability to hold Jacob again so soon after being removed from the oscillator. He has tolerated, and actually is more calm, when being held. Katy, Landon, and I have been sharing Jacob the past two days. Katy and I hold him as much as possible to make up for lost time from the past week on the oscillator. We've been taking turns spending time with Landon at Ronald McDonald House and with Jacob at Children's. Tonight as Katy was over at the hospital holding him, he was more awake and alert than ever. This is just what Katy needed after last week's lows.
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| Notice the Lego guy in Jacob's hand! |
There is still a lot to be done before we can leave the hospital. Slowly, but surely, we're closer to getting our Christmas wish granted as we take it One Day at a Time. We can't wait for the day to come home and share Jacob with our friends and family. Thank you everyone for your continued love, support, and prayers for Baby Jacob!
Four Week Birthday!
Jacob has become very active since the vecuronium has worn off. As stated above, he is fighting with his vent tube. His little hands and fingers are very active, and his eyes are getting better tracking objects and turning towards the sound of our voices. It's hard to leave him when he is awake, and it seems as though he always is waking up when it's time for us to go. We set up his animal friends, and play his favorite lullaby CD. He's got quite a menagerie in his room!
Every Baby Has a Voice
Nov 23, 2011-Every parent longs to hear their baby cry as soon as it's born. Moms and dads learn to recognize their baby's cry and can pick up on it from far away. But it was only after Hazel started making cooing sounds that I realized that the special tones in a baby's cry are unique and indicative of their own special voice they will have as a child. It has been so difficult to not hear Baby Jacob cry. At times, it is even tortuous to watch him as he does but does not make a sound. A baby's cry tells a mom what is wrong and hints to how she can fix it. All we have had to go on are numbers and lines: heart rate, breath rate, blood pressure, oxygen saturation, breath volume, and tidal lines. In just the past couple of days, we've started thinking of Jacob as a "normal" baby who isn't just crying because he's not functioning properly, but a tiny human who is fussy because his diaper is wet, has to poop, is uncomfortable from laying a certain way, or is simply cold. Of course all of his needs have been met by his outstanding nurses, but when his numbers were off before it was usually for some dire reason like he's drowning in his secretions.
Today is Jacob's Big Day! He is being extubated from the ventilator!!! We are so thrilled at how well he is doing, but at the same time we are terrified of him breathing almost all on his own with just the help of a high flow cannula. When we first toured the NICU before Jacob was born, the nurses didn't just hand me a tissue, they handed me the whole box and told me to take it with me. Today at morning rounds they again gave me a tissue then just handed me the whole box. It was the first time I cried because of hearing good news. It is our big day as well. Today, at 29 days old, we get to hear Baby Jacob cry for the first time. We get to hear our baby's voice.
Today is Jacob's Big Day! He is being extubated from the ventilator!!! We are so thrilled at how well he is doing, but at the same time we are terrified of him breathing almost all on his own with just the help of a high flow cannula. When we first toured the NICU before Jacob was born, the nurses didn't just hand me a tissue, they handed me the whole box and told me to take it with me. Today at morning rounds they again gave me a tissue then just handed me the whole box. It was the first time I cried because of hearing good news. It is our big day as well. Today, at 29 days old, we get to hear Baby Jacob cry for the first time. We get to hear our baby's voice.
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| Only minutes old |
Just Breathe
Extubation Day
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| Before |
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| After |
Nov 23, 2011 -Today we felt like Jacob was born all over again. As parents, we anticipated hearing and seeing the things one normally does at their baby's birth ~ his first breaths and hearing his first cry. We got to hold him without the worry of gagging him. We were able to put him up on our chests and smell, caress, and kiss his sweet head with our lips. I got to hold him skin to skin. And Jacob finally got to wear clothes!
When it was extubation time, we were surrounded by happily anxious nurses, respiratory therapists, and a neonatologist. Medical staff that wasn't even on Jacob's care that day was rooting for Jacob to do well, as most of them have taken care of Jacob at some point. It felt good that Jacob has stolen a tiny piece of so many people's hearts! It was also an amazing circle of events that happened that day. Pete, the respiratory therapist, was the one who intubated Jacob at UW and transported him to Seattle Children's. Now he was the one extubating him 4 weeks later. Dr. Sarah Hedstrom was at UW watching Jacob be born and was the one to surgically place his umbilical line. She was now at Jacob's bedside overseeing the extubation. It is unusual for staff to be in both places at such important milestones in a baby's life.
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| Pete preparing to take the tube out. |
A Day of Thanksgiving
Nov 24, 2011 -Happy 1st Thanksgiving Little Jacob! So many things to be thankful for this Thanksgiving, but first and foremost that Jacob is doing so well. The doctors weaned his oxygen down to 4 liters, and he continues to have a pulse ox of 100%! We got to put clothes on him for the first time. He looks adorable and cuddly.
We are also extremely thankful for our AMAZING family and friends that have held us up in every way, especially in prayer. In addition to family and friends, we are forever grateful for the wonderful nurses who take care of Jacob, as if he was their own! We have been so blessed on this day of grace and thanksgiving.
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| 1st Outfit! |
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| Nurse Patti |
Leaving the NICU
Dec 2, 2011 -After 39 days in the NICU, Jacob has moved out to the general surgery floor. It has been a long awaited event that Katy and I have been hoping for since the day Jacob was born. It means we are one step closer to coming home. However, when the day had finally come that the doctors mentioned the floor, we both found ourselves with increased anxiety. We had become so comfortable with every part of the NICU and were not feeling ready for the floor. Everyone has forewarned, "Oh, wait until you get to the floor" when we told them how much we enjoyed the NICU. Everyone said going to the floor is an eye opening experience and a big adjustment.
In the NICU, the nurses adored Jacob. They usually had Jacob, or at most only one other baby to care for. We knew the routines, the nurses behaviors, and where to find the supplies and answers we needed. Most importantly, everyone knew his cares, his needs, and his likes and dislikes. At first, we dreaded going to the floor as we learned the nurses cover 3-4 patients, may not be as vigilant, and they didn't know our precious boy! The rooms are spread further apart and we feared if we were away they wouldn't hear his little cry. After long talks with the NICU and surgical teams, we found our anxieties subsiding.
This morning I woke up excited knowing that today was Jacob's big day. I attended rounds to hear from the doctors what Jacob's plans were as Katy was in Puyallup talking to Landon and Hazel's doctors to find out what has been bothering them the past few weeks. It was hard to be at Jacob's beside and making decisions alone after nearly 40 days and 40 nights with Katy's support. I, of course, called Katy to inform her of the events, so she could feel as if she wasn't being left behind again.
By three o'clock all of Jacob's belongings, including Katy's four bins of frozen breast milk, were packed under his crib. The few nurses working today were ecstatic that he was graduating to the floor, even the NICU desk clerks were excited for Jacob. I had the same eerie feeling as we paraded down the same corridor as surgery day. This time it was just him, his crib, a nurse, and myself; no life support, respiratory therapist, nurses, doctors, or machines necessary.
His new home is a bigger room with a gigantic window. Jacob (and Katy & I) will have natural light in the room for the first time in 37 days! We'll actually know if it's day or night, rain or...well rain, here in Seattle. There is a sleeper couch, a rocker, and a TV for our comfort and enjoyment. Jacob even watched a little of the Pac-12 Championship football game before falling asleep in my arms. There is a lot more activity on the floor than the NICU has had lately. The nurses seem to be on top of Jacob's care, but seem shocked that I did most if it before they came around. Katy and I not only spent the past 39 days watching and learning everything about Jacob, but also about his basic cares.
I had a nice long talk with Jacob's surgeon, Dr. Avansino. He and his staff are very happy with Jacob's progress so far. In terms of CDH, every child's needs are different. Dr. Avansino has seen many cases, and at the onset of Jacob's condition he believed we would have a much longer road in the NICU. He said time and time again how amazed he was with Jacob's turn around from being so extremely critical in those first 24 hours. He also mentioned that being on the floor doesn't ensure coming home anytime soon.
This morning I woke up excited knowing that today was Jacob's big day. I attended rounds to hear from the doctors what Jacob's plans were as Katy was in Puyallup talking to Landon and Hazel's doctors to find out what has been bothering them the past few weeks. It was hard to be at Jacob's beside and making decisions alone after nearly 40 days and 40 nights with Katy's support. I, of course, called Katy to inform her of the events, so she could feel as if she wasn't being left behind again.
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| Ready to leave the NICU |
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| Graduating from the NICU |
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| Jacob's new home |
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