Welcome To Holland-Sept 18, 2011

On September 15th Katy and Andy found out that Baby Jacob has a life-threatening condition called Congenital Diaphragmatic Hernia (CDH). CDH is a condition in which a hole in the diaphragm, or in Jacob's case an undeveloped diaphragm, allows abdominal organs to move into the chest and restrict lung development. It is also squishing his heart and the aorta. We are so blessed to have found this out now or Baby Jacob would have died at birth.


They are going to be getting further diagnosis at UW, possibly a fetal MRI, and later delivering @ UW Hospital in Seattle. Shortly after birth, if needed, Jacob will be put on a ECMO (Extracorporeal Membrane Oxygenation) device, a temporary bypass technique used to oxygenate the blood and allow the lungs to rest and develop. Luckily, Seattle is one of a few places that has the device.


They aren't sure what to expect in the future days/weeks, but their perinatologist says they are in the best of hands. Both UW Hospital & Seattle Children's are renowned for their pediatric care. Thank you to everyone who has already begun praying, and everyone who will now. Baby Jacob is blessed to have all of you thinking and praying for him.


Here is a very informative site describing Jacob's problems, prognosis, and what to expect in the upcoming weeks/months:


http://pedsinreview.aappublications.org/content/20/10/e67.full


A Facebook Posting From Debbie, Katy's mom:

About 10 days ago we suspected there may be something wrong with Baby Jacob.  Katy was scared and asked what we were going to do if it was something really bad.  I sent her the email printed below but I really believed that the baby would only need a small surgery and all would be fine.  Tests have revealed that Jacob can't live without immediate and extreme measures.  As it seems, we are going to "Holland" unless God, in His infinite mercy will reroute us to "Italy".  As you can imagine, we drift between denial and terrifying reality.

It is clear that financial resources far exceeding all our family's and extended family's will be needed to care for Baby Jacob.  I hope I will be able to open a fund at Bank of America for people to donate.  I will post the information as soon as possible.

Below is the email "Welcome to Holland" I sent to Katy on September 8th and her response:

From: djcountry77@hotmail.com

To: krondeau88@hotmail.com

Subject: Welcome to Holland

Date: Thu, 8 Sep 2011 04:37:18 -0700

Welcome to Holland

I am often asked to describe the experience of raising

a child with a disability--to try to help people who

have not shared that unique experience to understand

it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning

a fabulous vacation trip--to Italy. You buy a bunch

of guidebooks and make your wonderful plans. The

Coliseum, the Michelangelo David, the gondolas in

Venice. You may learn some handy phrases in Italian.

It's all very exciting.

After months of eager anticipation, the day finally

arrives. You pack your bags and off you go. Several

hours later, the plane lands, the stewardess comes in

and says "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland? I

signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've

landed in Holland and there you must stay.

The important thing is that they haven't taken you to

a horrible, disgusting, filthy place, full of

pestilence, famine and disease. It's just a different

place.

So you must go out and buy new guidebooks. And you

must learn a whole new language. And you will meet a

whole new group of people you would have never met.

It's just a different place. It's slower-paced than

Italy, less flashy than Italy. But after you've been

there for a while and you catch your breath, you look

around, and you begin to notice that Holland has

windmills, Holland has tulips, Holland even has

Rembrandts.

But everyone you know is busy coming and going from

Italy, and they're all bragging about what a wonderful

time they had there. And for the rest of your life,

you will say, "Yes, that's where I was supposed to go.

That's what I had planned."

The pain of that will never, ever, ever go away,

because the loss of that dream is a very significant

loss.

But if you spend your life mourning the fact that you

didn't get to Italy, you may never be free to enjoy

the very special, the very lovely things about

Holland.

-Written by Emily Perl Kingsley

I have remembered this story from many, many years ago.  It made an impression on me.  I wanted to share it with you.

Katy, I don't think you're going to Holland but you asked what we would do if you did.  We would go with you, stick together, find our way together and discover many beautiful things about Holland.  God would never let you arrive there if you couldn't navigate through it.  He would walk with you all the years of your life.

Katy's response on September 8th: "Thanks, Mom. It's wonderful to have such a supportive family. I'm thankful to have visited Italy, and I just hope Holland isn't on God's itinerary for me."

So Many Questions...

Sept 20, 2011 -I wanted to update everyone and thank you for your continued prayers. Tomorrow, Andy and Katy will be meeting with a team of doctors at UW to get a better idea of Baby Jacob's condition. They will also learn more about the treatment at delivery and after birth among many other things. We will update everyone tomorrow. 

Psalm 139:13-16
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.

Getting Acquainted

Update from Andy....

Sept 22, 2011 -Yesterday we spent 5 hours with the team of doctors at UW. Katy had another ultrasound confirming that Jacob's CDH is on the right side. This only occurs in about 10% of CDH cases and can be more critical than left-sided CDH. It was a little nerve wracking when a team of 3 radiologists were brought in to look more closely. One piece of good news-We were able to see the left lung elongated today, but the right one was virtually nonexistent because it was being squished by the liver. It appears that Jacob's organs are able to shift in and out of his chest cavity which is a good thing if it has allowed his lungs to elongate to grow and mature at times. This is our hope. 

We had a lot of our questions answered and mapped out the first stages of a birth plan. If all goes well and Katy can remain pregnant, Jacob will be delivered around October 28th or so. Jacob's prognosis really won't be able to be determined until he is born since every case of CDH is different and every baby's body manages the related effects differently. We just have to hope and continue to pray for the best.

Thank you, everyone, for your continued prayers and support!

Blessings All Around

Update from Katy...


Sept 25, 2011 -On Friday we saw the cardiologist and Jacob had and echocardiogram. It is VERY common for CDH babies to have heart defects, some that are fatal. Jacob's heart looks completely normal! At this stage of development it can be very difficult to see the heart since the rib bones have already started to calcify, but the doctor said she was able to get really good pictures of Jacob's heart. This makes it easier for her to make a determination on the function and health of the heart. She was very confident that his heart is fine and normal! : ) He will get another echo within a couple of days after birth just to make sure 
nothing was missed since his heart is squished and not so easily seen.


Also, someone anonymously paid Landon's Pre-K tuition!  What a sweet blessing that is for our family during this crisis. Thank you from the bottom of our hearts!

Naming Him Jacob

Sept 27, 2011 -Many people have asked Katy why she wanted to name Jacob, Jacob. Here is her story in her own words.

I had this pressing feeling on my heart like that was what his name should be. I didn't pick it. It came to me. Since about the middle of my pregnancy, I have felt that God wanted me to name him Jacob. We were driving over Snoqualmie Pass when the urge was so strong, I just asked Andy if we could name the baby that. I can't even explain where the name came from except the way my spirit was moved, it had to have been from the Holy Spirit.   

God has always had an extra strong presence during this pregnancy. We were at Mass one day in August, and I had a strong feeling that something was wrong-maybe wrong isn't the right word. I had a feeling that God's hand was on Jacob. That He was ever present in Baby Jacob's unborn life but I didn't know why. I hadn't told anyone that I had been feeling this for quite a while. The choir was singing a song and the words were "I have a maker. He formed my heart. And before even time began, my life was in his hands. He knows my name. He knows my every thought. He sees each tear that falls and hears me when I call." I started crying almost uncontrollably. It was an amazingly overwhelming feeling that my baby was in God's hands and He had some special plan for him. (At that point, we had no reason to think anything was abnormal about this pregnancy.) Although we like to pick uncommon names for our kids, I knew it had to be Jacob.

Seattle Children's Hospital

Update from Andy!

Oct 4, 2011 -On Thursday we meet with one of the Pediatric Surgeons and a case counselor from Seattle Children's Hospital. They gave us more details into what events we can expect to take place on Jacob's birth day. They answered more of our questions, even if some of them weren't quite black and white. Especially how much contact they will allow us to have with Jacob.  

The counselor took us on a tour of the NICU wing of the hospital. Katy and I felt prepared to enter the NICU, but upon entering it was difficult to hold in the emotions. It really put us in the "this is going to be where Jacob is for the first weeks/months of his life." mindset. It was wonderful to tour the hospital, but quite an emotional roller coaster for us. It's hard to believe such a large facility is dedicated to sick children. 

So what's next? We continue to be in the waiting stage to see what Jacob presents doctors with. The Peds Surgeon seems confident in the success of the surgery, and states that Pulmonary Hypertension is more of the underlying complication with CDH babies, which we already knew. Being that Jacob's outcome is still uncertian, we were told to expect to be at Childrens for at least 6 weeks to 4 months! Yet another eyeopener today. We expected we were in for the long haul (2 months), but weren't prepared for the possibility of 4 months...120+ days! Next Wednesday we go back to UW for more appointments with more doctors.

A Change of Plans

Update from Andy & Katy

Oct 6, 2011 -Today we met again with UW medical staff to discuss Jacob's birth plan. It continues to be a "when Jacob is born we'll know what we're up against" plan. However, the neonatologist informed us of the spectrum of possible expectations. He believes Jacob will fall somewhere in the middle of best/worst case scenarios. He was wonderful at answering our many questions and further educating us on the medical history and care of CDH babies and the most recent developments in neonate care.

Following the neonatologist appointment, we met with Katy's OB/GYN. She is concerned that Katy won't make it to our original plan of delivering on the 28th. Katy is already dilated @ 3 cm. If Katy continues to dilate to 4-5 cm by next Wednesday's appointment, she will be admitted to UW Hospital.

Katy's current status, history of quick dilation and delivery, on top of her excess of amniotic fluid and contractions, led to a change in plans. Our current plan is delivery on the 21st. On that day, an aminocentesis will be done first to ensure Jacob's lung tissue is mature enough for ventilation. Katy will be 38 weeks along at that time.

Thank you to everyone for you love, support, and most especially your prayers. Please continue to pray for Katy and Baby Jacob. Pray for Katy to remain pregnant as long as possible to ensure the best possible outcomes for Jacob.

Showing your Love and Support

Oct 19, 2011

Many have asked how they can help or what specifically they should be praying for. Andy's and Katy's friend (who wishes to remain anonymous) sums it up nicely.

An excerpt from the above tab "Words from a Mommy of a CDH Survivor":

I guess what I want to end with, is to tell those people who will love, support, and pray for the Rondeaus as the go on this journey, that it is a ROLLERCOASTER. There are SO many highs and lows with CDH.  They will need to have you celebrate the little successes (like diaper changes or weaning the ventilator settings “just a little”) and they will need tremendous support during their lows (and unfortunately, there will be those lows). They will need prayers, loving thoughts, offers of help, and listening ears. It is horrible feeling to see your child hooked up to SO many things and not being able to do anything to help them.  You lose a sense of time and place, just having to wait and see how they do, each hour of each day and not knowing when there is an end in sight.

Sitting by a NICU bedside hour after hour is exhausting- watching those monitors will become their life, so give them all you have. Love on them, tell them you care, comment on their blog with your wishes of quick healing for Jacob.  Pray for no ECMO, stable days and nights, a repair surgery soon after he is born, lots of lung tissue under all those organs, and peace for Katy and Andy to help make decisions with the team of medical professionals that will be caring for Jacob.

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!

One thing we haven't told everyone is there was one hiccup in the surgery.  During the surgery, when placing the bowels aside a section became kinked, cutting off circulation.  The doctors identified the issue when they noticed the severe discoloring of his bowels.  When it was unkinked it pinked up immediately.  Doctors warned us of the possible complications. They fully expected Jacob to be sicker than normal. His bowel functions were in question as well.  Much to our surprise and joy, Jacob hasn't seemed sicker. In fact after holding him, I had the chance to change Jacob's diaper again. He had a diaper full of poo! When I asked the nurse, "Is this good news?" she replied, "This is very good news!" We hope that this is a sign that his bowels have had no effect of the surgical mishap.

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! : )

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.

Tummy Time with Froggy Woggy (thanks to Landon!)

Mommy's Hands (A Child's Prayer)

  Nov 7, 2011

Dear God,
Mommy's hands are very large
and mine are very small.
The things that Mommy's hands can do
mine can't do at all.

She says when I grow up, though,
my hands will grow with me
then I can do what Mommy does.
Dear God,
grow me, please?

 ~ CJ Heck

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.

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.

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.

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.

Just before the oscillator

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.

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.)

Opening his swollen eyes at hearing the sound of Mommy's voice

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)   :)

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!

Notice the Lego guy in Jacob's hand!

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!

Four Week Birthday!

Nov 22, 2011- Jacob continues to wow everyone!  He is up to full feeds of Mommy's breast milk now and no longer requires IV nutrition. He is also closing in on extubation day! His ventilation settings and morphine/ativan dosages have been significantly weaned over the past few days. He is almost at the lowest vent settings possible, and most likely tomorrow he will be extubated.  The current plan is to begin support from the CPAP (Continuous Positive Airway Pressure). Typically, a CPAP is used for adults with sleep apnea. If it appears to be too uncomfortable for him they we move him to the nasal cannula.  As much as Jacob has been attempting to remove his ventilation tube, we're sure he won't be to fond of the CPAP.

Yesterday morning, we discovered his steri strips had been removed from his incision.  Dr. Avansino and his team not only did an amazing job with the surgery, but they left him with a beautiful scar, if there is such a thing.  Katy says his scar is aesthetically pleasing, and Andy says that his 'I got bit by a shark while surfing' story may not be as believable as thought.


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!

Today is his 4 week birthday already!  The NICU is a vortex.  Other than our drive to and from Ronald McDonald House and occasional outings, we are oblivious to day and night, hours and minutes...and the weather being that there is no window in this room (Jacob's 4th room)! It's hard to believe he's already a month old. It seems like we've been here forever, yet we were shocked that this week is already Thanksgiving!

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.

Only minutes old