One Day at a Time

Welcome To Holland-Sept 18, 2011

2015-08-14T22:26:00.000-07:00

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...

2015-08-13T12:58:00.000-07:00

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

2015-08-12T10:03:00.000-07:00

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

2015-08-11T11:23:00.000-07:00

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!

Blog 101

2015-08-10T10:05:00.000-07:00

Sept 26, 2011 -Hey Everyone! So I just wanted to share a couple things about the blog and how you can stay updated and interact. Under each post you can comment just like Facebook. Below I have taken a screen shot of the last post and in the red box you will see where it says 0 comments. Just click on that and a box will pop up for you make a comment.

There are two ways to stay updated on the blog. You can have email updates sent to you when a new post has been created. Just enter your email into the "follow by email" box.

The other way is to become a follower. Click on "Join this site" and it will have you create an account or sign in if you already have a Google Account, Yahoo, Twitter, etc.

If you don't have any of these accounts you can create one.

Naming Him Jacob

2015-08-09T23:40:00.000-07:00

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

2015-08-08T09:52:00.000-07:00

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

2015-08-07T09:39:00.000-07:00

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.

The Waiting Game

2015-08-06T23:34:00.000-07:00

Oct 9, 2011 -Katy awoke to strong contractions in the early morning hours today that were about four minutes apart. After some observation she was admitted to University of Washington Medical Center this morning. She will stay there until Baby Jacob is delivered. Right now we're just in the waiting game. She is not progressing at the moment which is good since it would be best if he could stay in there a bit longer. As soon as we know more I will update you all.

In the Home Stretch

2015-08-05T10:58:00.000-07:00

Oct 17, 2011 -The University of Washington Medical Center, has been Katy's, Andy's, and Jacob's home for the past week. Still no Jacob, which although we all can't wait to see his adorable little face, we are thankful there hasn't been any more labor episodes.

Katy's contractions have been fluctuating in strength and intervals since their arrival last Sunday. Jacob is now at 37 weeks, which means if Katy goes into labor the doctors aren't as concerned. The question still remains as to whether Jacob's lung tissue has developed enough to allow him to breath independently and be able to endure further procedures. Ideally, doctors are hoping to make it to Friday. Katy will be induced and Jacob's birth should be soon after.

Katy and Andy have now successfully exhausted all their TV shows that they were behind on, eaten every food item on the not-so-wonderful hospital menu and in the cafeteria, and toured the entire hospital numerous times on their wheelchair outings. They have much appreciated the many guests who have assisted in passing the time.

As the anticipation of Jacob's birth gets closer. Katy and Andy are excited, yet they still wish Jacob could stay safe in the womb from the procedures yet to come.

Thank you everyone for your continued prayers, thoughts, support, and generosity for the Rondeau family.

Update

2015-08-04T09:37:00.000-07:00

Update from the Rondeau's

Oct 19, 2011 -It was confirmed with doctors last night that on Thursday evening Katy will undergo an amniocentesis, a procedure that samples her amniotic fluid for indicators of Jacob's lungs maturity. If they appear mature enough to sustain the medical procedures necessary upon birth, they will continue with the processes of induction. If not, then we will wait until Jacob is ready; which by the looks of it will be soon anyways as Katy's contractions are more intensified and regular. If Jacob's labor/delivery is anything like Landon's (6.5 hours) and Hazel's (1.75 hours), he may be born Thursday night. After birth, we have no definitive say on further procedures or outcomes. Please continue to pray for Jacob's lung development and for the medical team who will be in charge of his care.

Showing your Love and Support

2015-08-03T11:25:00.000-07:00

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.

Waiting...Again

2015-08-02T12:01:00.000-07:00

Oct 21, 2011 -A very stressful day yesterday. Katy had an amniocentesis to check Jacob's lung maturity. The amnio results were not favorable. The results put him in a category of a 23% chance of having respiratory distress after birth. It was an emotional roller coaster. First, excited for Jacob to be born. Then scared for Jacob to be born hearing that his lungs still aren't mature enough. It was a big blow to Katy and Andy as they had emotionally prepared to have a baby by today. They are bummed but of course don't want to put Jacob at a greater risk of respiratory distress than he already is. So there will be no induction for another whole week. Although, Jacob may still decide to come on his own.

They Moved

2015-08-01T11:11:00.000-07:00

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:

"We had a yummy homemade dinner prepared by my sister, Jennifer. Then Jen took Landon took back home leaving me feeling empty and blah. : ( Nothing exciting happening around here. Andy and I took a good walk around the block. It was nice to get out and get some fresh air and exercise. I get so sore just laying around. Good thing we walked when we did. It just started pouring outside! No signs of labor. Looks like a quiet night of tv or a movie."

Andy also found out last Thursday that his co-workers had generously donated some of their vacation time to him since he was running low. No one had anticipated that Katy would be put on bed rest and Jacob would stay in there so long. It’s a good thing he’s stayed put but it has put a strain on Andy as far as work goes. The Rondeau’s thank everyone for this gift. It truly means a lot.

Happy Birthday, Baby Jacob!

2015-07-31T19:38:00.000-07:00

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!!!

The NICU

Daddy and Baby Jacob

Feeling Left Behind

2015-07-30T01:28:00.000-07:00

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!

Surgery Day

2015-07-29T09:45:00.000-07:00

Oct 28, 2011 -Requesting prayers for our Baby Jacob. This morning he went into surgery @ 8:00. The actually surgery just began at 9:45. The surgery will place his organs in the correct places and repair his hole in his diaphragm. At this time, the size of the hole is undetermined but the mesh patch they use will be cut to the appropriate size to serve as his new diaphragm. The mesh is two sided. The lung side is Gore Tex (slippery material, like the breathable/waterproof jackets). The stomach wall side is Marlex (a polypropylene malleable plastic cloth-like material). The surgery should take several hours possibly done around 12:30 or 1. We are getting updates every 1.5 hours. Thank you for all of your encouragement, prayers, love, and support!

One Big Step in the Right Direction!

2015-07-28T13:42:00.000-07:00

"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.

At this point, the doctors believe that he may have to go on to the oscillator, but do not anticipate the use of ECMO. We are now waiting to see Jacob and continue to pray for his recovery. It's important to remember that for CDH babies, the repair surgery is not the key to his recovery. It is only the first step, and we have a long road ahead of us. His pulmonary function and stability are the primary focus. It's still a wait and see game.

Little Peepers

2015-07-27T21:39:00.000-07:00

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!

A Day of Surprises!

2015-07-26T23:00:00.000-07:00

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

2015-07-25T23:00:00.000-07:00

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!

2015-07-24T12:21:00.000-07:00

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)

2015-07-23T00:37:00.000-07:00

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

2015-07-22T22:58:00.000-07:00

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

2015-07-21T10:49:00.000-07:00

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.