Dylan is Home!

Life is an incredible gift. Each step of the way is an amazing journey. We can choose to walk it alone or run with others. The important part is to remember that we are blessed with so much, yet we often take the simplest things for granted. At times, we might wonder why the world is so cruel, yet we remember that this is exactly what makes all of us stronger.

We truly feel that the birth of Dylan Thomas Klintworth was a test of our strength as a family. His unexpected birth on January 9, 2009 has put everything in perspective and his fight to become part of our family has reminded us of the importance of those around us.

Although we will not celebrate Dylan’s birthday on April 14th, this day will be one that we will remember forever as he has finally come home from the hospital. Dylan is doing awesome at home and it is incredible to see him as a newborn.

Words will never be able to explain how thankful we are for all of our friends and family who helped and supported us through the past 3 months. Without all of you, it would not be possible for us to stay positive during the turmoil.

Below is a list of just a few examples of sections from emails we received from friends and family that helped us get through the toughest of days. We still have tears of joy when reading them.

“If baby Dylan is anything like you, I know he will persevere ... and then grow up to be a rich and famous quarterback”

“I’m betting Big “D” will be shredding the backside at Northstar on his snowboard by the time he’s five. This dude is motivated!! Here’s to the strength and love (that which gets you through) between you, your family, friends, your newest arrival, and of course to his glorious homecoming in April (maybe sooner – remember, this boy wants to see SNOW).”

“I hope you both receive the strength and courage to do all that you need over the next few months”

“We are so glad to hear your son is a strong fighter in the first few days of life!”

“I am sorry for what you and your family is going through. Something like this sure gives you an appreciation for the miracle of life.”

“And, btw, a “mini man” should never be underestimated!”

“With you and Brandi standing guard, he will have a tremendous amount of love and support to grow comfortably under. “

“This is Grade A tough life stuff. You have my prayers with you and Brandi (and Andrew). Not sure what the big plan is for “mini man” Dylan but often kids that overcome this type of adversity have a special role to play in life….inspiring others”

Dylan's 12 Week Update

Then...

And Now!

March 17th to 31st

It has been a long emotional road that no doctors or nurses could have ever prepared us for. Although we would have thought that Dylan's life would begin when he came home, he is working on his 12th week of life and it is becoming increasingly difficult for us to cope with the fact that he is sill in the hospital.

Amidst the emotions that we feel in not being able to bring him home yet, Dylan's doctors and nurses have stressed the fact that his course has been better than most babies that are born this premature. It does not make it any easier, but thinking back at his amazing progress we continue to try and be patient.

The last few weeks have gone by slow, especially for mom who is physically and mentally ready to take him home. Dylan is now 6 1/2 lbs compared to 1lb 10oz at his lowest point and aside from not being able to take his milk from a bottle, he is completely ready to come home.

The nurses keep trying to reassure us that the "light bulb" will come on soon, but it doesn't make it any easier. We are just dying to have him home and hold him whenever we want.
So, as sad as we are, we are very happy that he is so strong.

Dylan's 10 Week Update

March 2nd to March 16th

Dylan turned 10 weeks old last Friday- the day after Andrew's 2nd birthday. Too bad Andrew hasn't had a chance to meet his little brother yet (kids can't come into the ICN during the cold & flu season).

Dylan has made so much progress since we last updated the blog. He has gained over a pound and is now 4 pounds 13 ounces! He doesn't seem like a premie any more - at least not to mom and dad. He has been off all oxygen for almost two weeks and in a crib (no more isolette to keep him warm) for a week. And he is doing great! He has started to take small amounts of milk from a bottle, but hasn't mastered the complicated task of breathing while doing it, so he still has a feeding tube in his nose. He also still gets his daily caffeine fix to help him remember to breathe.

Mom is loving being able to spend hours every day holding and feeding her precious baby and dad is too every chance he gets. We feel so lucky to have grandparents and Cheri (our nanny) to help us out every day for the past 10 weeks.

While Dylan is still doing great and making progress daily, mom and dad are getting anxious to bring him home. We don't know when little Dylan will be ready, but we are guessing close to his due date (April 18th).

Dylan 7 Week Update

February 24th to March 1st

Dylan is 3 pounds 11 ounces as of today! He is gaining about an ounce a day and having fewer and fewer issues related to a premature baby. Hopefully, we will continue to have uneventful days like the ones we have had in the past few weeks. We don't know when he will be coming home, but our guess is at least 4 more weeks (which would put him at 37 weeks gestation). I can't believe it has already been 7 weeks since he was born.

In order for us to bring him home he has to hit a few milestones (weight is not one of them, but they expect he will be between 4 and 5 pounds). He will have to bottle or breast feed exclusively (no more tube feedings). He also has to be able to regulate his body temperature (no more warm isolette) and he has to have at least a week free of irregular heart beats and high oxygen levels in his blood.

Now that he has more than doubled his weight from his low, he looks so healthy and big to us. He still has a lot of growing and developing to do, but we are getting excited about the idea of being able to bring him home soon!

Dylan in Clothes

February 20th - February 23rd

Another milestone. We just had to send photos of Dylan's first outfit (aside from hospital wires, tubes and of-course diapers). He's still doing great. 3 pounds 4 ounces! Brandi got to hold him last night wrapped in warm blankets and this little sleeper. Oh, the joy!

Six Week Update

February 10th – February 19th

Today is Dylan’s 6 week birthday and he is doing amazing. The doctors say that he is already trying to escape the incubator by rolling around and every so often he pulls the nasal prongs out and thinks that he can breathe completely on his own (which he does). I think he got his stubbornness from both his mom and dad.

The progress that he has made in the last three weeks is remarkable, from removal of all arterial and interveneous lines, to removal of the oxygen mask and almost all medications, to the almost doubling in size from 1lb 10oz to 3lbs 1 oz.

It is truly a miracle!! Dylan’s will to live is beyond our wildest hopes and dreams. He looks and feels like a real baby now! We thought Andrew was small at 6 pounds but now I can't even imagine what Dylan is going to look like at 6 pounds because he seems so big at 3 pounds! (What a change in perspective)

Brandi has been spending more time with Dylan lately as he is stable enough to be held for longer periods of time. We are also very optimistic that he will be able to come home in early April.

Four Week Update

February 3rd – February 9th

It is difficult to think of the intensive care nursery as being home for our son for three months, but it’s comforting to know that we have already made it through one month. We have come to appreciate the incredible nature of modern medicine and well-trained doctors, but the most amazing part of it all is how strong and resilient even the smallest child can be.

This was quite possibly Dylan’s best week so far as the doctors continued to cut back on his medications for blood pressure and have been able to turn down the pressure and oxygen levels on his breathing mask. He did have another blood transfusion last night, but we hope this is the last one he needs.

Most importantly, we have been able to hold Dylan for about an hour every day. It is almost like there is nothing else going on around when Dylan is in our arms.

It is amazing to see his progress, from increasing his feedings from 1ml to 18ml every 3 hours, and just today to cutting back the now unnecessary intravenous nutrition. The doctors are even talking about taking off the oxygen mask as early as next week.

However, the real confirmation was when the doctors told us that Dylan has a greater than 90 percent chance of survival (from less than a 75 percent chance at birth). Those with a glass half empty mindset may dwell on the fact that there is still a 10 percent chance of him being taken from us, but we are overwhelmed with joy, that he has come this far and optimistic about bringing him home in April.

Today is Dylan’s 1 month birthday and, although it may not sound like much, we are happy to say that he is now 2 pounds 9 ounces!

Dylan's 3 Week Update

January 31th-February 2nd

On January 30, 2009, Dylan Thomas Klintworth turned 3 weeks old and at a meager 1 lb 12 ounces, we watched as they put him in the ambulance to transport him from Children’s Hospital to John Muir.

When he arrived at John Muir, we immediately thanked God that he was back in Walnut Creek as the doctor exclaimed, “Dylan loved the ride in the ambulance and did very well. He is one of those babies that you could probably put on the washing machine and he would immediately go to sleep.”

Dylan immediately settled into the environment as the nurses kept the lights dim and tucked him in tightly to his quiet isolette. He must have gotten a bit too comfortable as his blood pressure dropped significantly to the point where the doctors were a bit worried about him. However they reacted quickly to get him the medication he needed to bring his blood pressure up in a relatively short period of time and ensure that his kidneys continued to work appropriately.

Uneventful days are the best possible days at the ICU for Dylan. This is exactly what Saturday, Sunday and Monday brought as Mom and Dad relished the time with him in the ICU while he was stable and seemed to be doing better daily.

However, the most amazing part of this is the fact that both Mom and Dad were able to spend time holding him. There are many times during our lives where we have enjoyed time bonding, but this was the ultimate. It was a time where Dad was overjoyed to be able to say that he had a family of 4 and was more than timely therapy for Mom. Some of the littlest things these days seem to be significant in our lives.

As of today, Dylan is 2lbs 1 ounce and doing very well in the ICU, but things are changing each minute of the day (We hope for the better!!). I am sure that he is very excited to have a visit this week from Aunt Janelle and Grammy.

Thanks to all of you that have been praying for Dylan and have been a constant support to us through the past three weeks (Food, Babysitting and Wishes). We would not have been able to get to this point without all of you!!!

Dylan's Return to John Muir!

1/30/09

Good news! Dylan is coming back to John Muir today! He's been "stable" at Children's Hospital of Oakland this week but we have been waiting (not so patiently) for a bed to open up at John Muir. He's doing great! More updates soon......

Dylan's Recovery after Surgery

January 24th-26th

Although it was only a couple days ago since our last update, it has seemed like an eternity. Immediately prior to PDA surgery (for the “hole” in his heart), Dylan’s vital signs showed very low blood pressure and an elevated heart rate as he was working very hard to continue the flow of oxygenated blood.

Mom and Dad nervously watched Dylan’s vital signs deteriorate in the first 12 hours after surgery. This was the toughest night and next day for all of us. Dylan’s fluid levels were extremely low and he needed two blood transfusions, his blood pressure was dangerously low (to where his blood vessels and kidneys were not working appropriately), his heart rate was still elevated, and the doctors had put him on 5 different medications that weren’t necessary in the past.

There was very little sleeping that night in the Klintworth household as we thought about Dylan’s condition and prayed for his speedy recovery.

Calling for updates in the middle of the night and the following morning gave us good news as his condition improved. Upon arriving at the hospital on Sunday January 25, we were relieved to know that the medications were starting to work and that Dylan was more stable. His blood pressure was finally improving and his kidneys appeared to be back on track as he proceeded to show the doctors that he was getting well by peeing all over the bed through his diaper.

Now that he was acting more like a Klintworth, we went home and rested for the night.

Today was a good day for Dylan as his vital signs were great, despite his abnormal elevated breathing rates. However, this was somewhat good as it prompted the doctors to take out the breathing tube to allow him to breathe on his own again.

As we sit home tonight, we are hopeful that this was the turning point where Dylan can now focus on growing and recovering.

Dylan's Surgery Update

January 19th-23rd

Monday and Tuesday were the deciding days as the Doctors made the decision to move Dylan into surgery to close the Ductus (in his heart). Dylan was relatively stable for these days, but it became increasingly difficult for us to come to grips with the fact that Dylan would need to be transferred to a different hospital (Children’s Hospital of Oakland or “CHO”). We had heard that the environment was slightly different there.

Wednesday was a monumental day as Brandi was able to hold Dylan for the first time. It was incredible!!! As soon as they nurses laid Dylan on Mommy’s chest, we saw his eyes open for the first time and his vitals became perfect. This is when we realized that no matter how small he was and no matter how long he was going to be in the ICN, he still knew who Mommy and Daddy were.

He laid there for about an hour prior to getting the orders for transport to CHO. The transport was necessary as there are no Pediatric Surgeons on staff at John Muir. We were confident that this was the best place for him to be, but it was still difficult. For Mom this may have been the hardest day, emotionally, since giving birth.

When Dylan and Brandi arrived at CHO (separately), it was apparent that this hospital had a very different environment. Being that they are a trauma center, most of the children in the ICN were from many different locations, with many different needs (not just premature babies). In addition, the nurses seemed to have a different philosophy on how to keep the babies calm and resting as the environment was a bit louder than John Muir.

Thursday, was one of the toughest days for Daddy. Dylan was scheduled to go into surgery in the afternoon. He was on the wait list and although we started feeling more comfortable that he was in the right place at CHO, stress and anxiety started setting in as the clocked ticked and optimism that he would have the procedure done that day dwindled.

At about 6pm on Thursday, our Surgeon came to us and said that the Anesthesiologist did not want to do the procedure until the next day due to the fact that they no longer had a full staff on board. Meanwhile, Dylan’s vitals were showing that he needed the surgery sooner rather than later with his blood pressure low and his heart beating / working harder. Being there for 8 hours and anticipating the surgery was exhausting, but we understood that the circumstances were not optimal that night.

On Thursday, the procedure was scheduled at 1pm. Our realistic expectation was that he would be called in around 3pm. Around 3:30pm, the doctors scheduled the procedure for 4pm. The nurses tried to get him ready, but had to perform some last minute preparation as the doctors waited. His stats were somewhat normal for a premature baby of his age, but it was clear that he was irritated by being disturbed in order to get prepared for the surgery.

Around 4:30pm, Dylan went into surgery and was out by 5:30pm and back in the ICN. Dr. Kim, the surgeon, said that the procedure went great and that Dylan was doing well.

Once we were able to see him, we were greatly relieved and, although the heart rate was elevated, the nurses and doctors said that he was stable.

What a huge relief this was for both Mom and Dad and we could go home, rest and pray that this was the final step prior to Dylan being able to really make progress toward growing and developing.

Dylan's First Week

January 14 – January 18

Overall, we are hanging in there and taking this journey day by day, but trying to stack up Dylan’s progress week by week to ensure that we know he is progressing. Our emotions have been all over the map.

The first week went by rather quickly, but for the last couple days we seem to be watching the clock tick as the three months cannot go by fast enough. Brandi and I struggle with the idea of wanting to take home our somewhat stable son from the ICU nursery and knowing that that there is no other option considering his condition.

The past few days have been a net positive for all of us as Dylan seems to be making a lot of progress. Although Brandi and I have been a little under the weather lately and have not been able to visit as often as we would like, we have been able to talk on the phone often with the doctors and nurses for updates. At times we felt like certain weights had been lifted as the mini man has stayed strong through these turbulent times as follows:

· Testing to check levels of the fluid that was first discovered in Dylan’s head was deemed to be normal and no brain hemorrhages were found;

· Dylan was put back on the ventilator for a couple more days and then taken off when he started taking more breaths on his own. He's now doing very well, with the help of a little caffeine (yes, he gets caffeine!);

· After the first round of medical treatment, the doctors determined that the Patent Ductus from Dylan’s heart causing the heart murmur was now insignificant and treatments of medication were discontinued until the next EKG;

· The latest EKG showed that the Patent Ductus opened slightly again and the doctors began his next and final round of medication;

· Dylan was able to have Mommy’s milk and hold it down, but doctors had to stop the feeding upon starting his next round of medication for his heart. With the help of intravenous nutrition, his weight has stopped dropping the last few days. He now weighs 1 pound 12 ounces.

As we realize that these may be insignificant steps for most children, these are milestones for Dylan. It seems so amazing that such a small life can dramatically impact the thoughts and feelings of so many and bring them to spiritual peace.

Overall, Dylan has made amazing progress. We are optimistic about him continuing to breathe on his own and we remain hopeful that he does not need surgery to close the Patent Ductus from his heart. Although this is not heart surgery, the procedures would require him to be transported to Children’s Hospital of Oakland and would increase his risk for infection.

We still haven't been able to hold the mini man yet. He's been stable enough the last few days but we have both been sick, which means we are supposed to stay away from the hospital until we feel better. I've never been so eager to get over a cold in my life - and never more worried about averting another one.

Life seems to be getting back to normal (a new normal) for the Klintworths. We have moved past shock and into acceptance. We know that Dylan is getting the best care possible where he is, but there's an empty sadness in my heart when I'm not with him....

Baby Dylan Arrives

Brandi went into labor on Thursday night at about 9:30pm. It started with mild back pain but by about 10:30pm she started to realize something was wrong. We got to the hospital about 11pm and delivered the baby at 12:02 am on Friday, January 9th, 2009. He was 13 inches long and weighed in at 2 pounds 0 ounces.


1/13/09

For the first day of our son's life, it was difficult for Brandi and I to process the fact that he was alive and immediately part of our lives.

However, as we spent time with him for the first four days of life, Dylan Thomas Klintworth immediately became the strongest member of the Klintworth household (and immediately more popular).

However, whether we were ready or not the journey has begun and the thought of growing attached to the mini 2 lb man in the incubator with the breathing mask and tubes in every part of his body was no longer in question.

With Dylan breathing on his own and responding to most procedures / medications given by the amazing doctors at John Muir for the first four days of his life, we began to become cautiously optimistic.

However, with potential setbacks such as fluid in the head and heart murmurs, we felt like he was taking some steps in the wrong direction.

Today was not only a turning point in our mindset as parents, but a big day for Dylan.

As we visited him in the hospital today, it was clear that he had expended most of his energy the first four days by trying to impress everyone that he could breathe on his own. He proceeded to go into several long periods where he was too tired or forgot how to breathe and his heart rate dropped and oxygen levels were too low.

Seeing him struggle and the potential setbacks for us as parents was not easy to accept and the thought of Dylan going back on the ventilator machine was not something we wanted to think about.

However, as soon as he was on the machine, we realized as parents that he was now more comfortable and it was the only way to give him the best chance.

We now know about the roller coaster ride and are at peace with trying to think of the progress and turn the setbacks into positive aspects that keep Dylan here with us while he is making as much progress as possible over a long period of time.