Let's Start at the Very Beginning...

On September 15th, Katy and Andy found out that Baby Jacob has a life-threatening condition called Congenital Diaphragmatic Hernia (CDH). CDH is a very serious condition in which a hole in the diaphragm allows abdominal organs to move into the chest restricting lung development. In Jacob's case, his liver is also squishing his heart and displacing other organs. CDH occurs in about 1 out of every 3,000 pregnancies and has a mortality rate of 50%. To make matters more complicated, Jacob has Right-Sided CDH which only occurs in about 10% of CDH cases and is typically more severe. They are so blessed to have found this out when they did, or Baby Jacob would have surely died at birth.

They will be delivering at UW Hospital in Seattle and later transferred to Seattle Children’s. 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.

My Restless Mind

Jan 11, 2012 -After a long day back up at Seattle Children's Hospital for Jacob's one week from discharge clinical check-up, in addition to the many sleepless nights, and learning how to be a supportive husband and father of three, you would think I would be exhausted and sleeping as hard as a rock in the wee hours of the morning.  Unfortunately, here I am wide awake unable to sleep.  The 'whoosh haa' of Jacob's oxygen concentrator, and tune of both Katy and his rhythmic sleep tones are the backdrop to the thoughts running through my head.  Sometimes you need to just talk it out or get off your chest, but as my companion is catching up on some much needed sleep between pumping and assisting with Jacob, I am alone with the computer (and this blog to share my thoughts) so here it is...

Earlier tonight, I began looking through my district/school emails trying to catch myself up on all the happenings and changes over the past 12 weeks of the school calendar that I have been out. Stressing about what I've missed out on, something I haven't had time to think about until now, one week before having to return to work. It's hard to believe that I will be returning to work so soon after coming home.  In the beginning, I thought we'd spend some time at Children's, then return home were I would have plenty of time to be able to help adjust to our new life with a baby with such special needs. Now I'll miss out on that. I also feel like it's September 7th all over again, and I am beginning the school year with a classroom of kids I hardly know. I'll be learning there behaviors and academic standing all over again.  Anything I might have known about them prior to early October, has surely changed as they have grown so much since them. I do however, have all the confidence in the world that my substitute has done an amazing job continuing what I started and built upon that foundation to reach each and every one of my kids.  I feel like the tables have turned and now I'm going to be the long-term sub coming into her classroom!

I am not ready to leave my babies. I just got back home to Landon and Hazel a week ago. Oh how I've missed them so! It's amazing how much they too have grown since the early fall. I feel like I am starting all over again being a dad!  I am having to remember again how to have patience with them, and learning how make them feel equally important as I juggle time between the two of them and Jacob's much needed attention. I also feel like I have missed out on so much with them.

Landon has learned to take care of and get along with his little sister (most of the time). He has come so far with what he is learning this year at Preschool. He absolutely adores and has built a special bond with his baby brother as he was able to spend some time with us in Seattle.  Still I can tell this ordeal has been waring on him too.  Being away from his mommy and daddy has been hard, especially with all the holidays which routines had to change due to our absence. I'm glad we were able to take the time to still do some of those activities with him. Now that we are all home, he wants our attention and can become easily stressed when his brother is getting more of the share. However, he has been an amazing help as well.

Hazel has become self-sufficient and developed a mind of her own.  Although we had seen her from time to time while up in Seattle, it's been quite hard to come home and see her so grown up. My little baby is not a baby anymore. She too loves to ramble on about everything. She is quite active, and gets into anything and everything, even more so than before we left with the chairs tied to the table :). She of course also adores her new baby brother, but it has been a difficult adjustment for her too.  In the past week, she has learned to be a little more gentle with Jacob, but needs to be monitored around him constantly.  She has yet to understand how fragile he is. This has made it difficult to share daddy time with all three of them.

Then of course there is Jacob. He has been basically the only thing on my mind for so very long. We have a very special bond.  Katy sees a different bond between me and Jacob than she's seen with Landon and Hazel.  I guess it's the uninterrupted 18-20 hours a day for his first 10 weeks of life I  spent with him. I have spent that time starring at him. Memorizing everything about him. Watching him grow. Witnessing his highest of highs and lowest of lows.  When has been nearly unconsolable, he finds comfort in my voice and warmth of being in my arms. I've been more instrumental in feeding him as Katy has not been able to breast feed him. I had the pleasure of being the one who caught his first real focus on the world around him. I got to be the one to share in his first smile. I guess spending so much time with him has made the bond different. Don't get me wrong, I have a wonderful bond with Landon (especially with being my first baby), and Hazel (being my one and only little girl) too. Aside from ever choosing any of one of my three kids as a favorite, Jakey is my little fighter and I continually worry about his ongoing health and journey yet to come.  Even though we are home, he is still far from being a healthy, normal baby.  He continues to be closely monitored and supported with oxygen. He has a very specialized feeding formula and routines. His med list far surpasses the amount Katy and I (and most people) have ever needed on a daily basis. He will continue visiting Seattle Children's for years to come. His needs are far beyond what Katy and I expected.

Then there is leaving Katy at home to take on this new world on her own when I return to work.  I know she is perfectly capable, and I have the utmost confidence in her abilities as a new mother of three.  She is the most amazing woman/wife.  She is (and has always been) my rock through the best and worst of times. As I said before, Jacob's needs are much greater than we expected.  At the hospital, everything we needed was at our fingertips, the nurses did most of the leg work, and we only had one little one to care for. The mixing of fortified milk for the pump and other mixture thickened for his bottles, breastfeeding schedule (Katy obviously),  the restrictions of movement with his oxygen tubes, keeping the kids safe around Jacob, going to follow-up clinical appointments, not to mention the caring for the other kids, taking Landon to preschool, Hazel's desire to potty train, and countless other things can be overwhelming for the two of us, let alone one.  Thankfully, we continue to have the support of family!  As if Mom (Katy's) hasn't done enough since day one with watching/raising Landon and Hazel, she is willing to be here to help Katy.  Knowing that Katy doesn't have to do this on her own gives me some relief.

Hopefully this will assist in putting some of the stress of going back to work to rest. But I'm sure I will uncontrollably be thinking of everyone at home while I am trying to do right by my students and colleagues.  It will most definitely be an adjustment! Did I mention my desire to continue in my search for an administrative position for the 2012-2013 school year?  It is that time of year again to begin applying.  However, I don't think now is the time to take on such a career change, but then I am stuck wondering if I will miss the opportunity I've been waiting for since obtaining my degree in 2009 at the heart of major cuts to education that still leave experienced administrators searching for jobs.  I have longed to follow that career pathway knowing that the time given is much more than I currently take as just a teacher.  I just want what is best for my family, my career endeavors can wait.

Now it already time to prepare Jacob's pump for another feed and get his 3 o'clock meds drawn up, I should end here in hopes that I will be able to put these thoughts to rest as I do the same. Goodnight and thank you everyone who continues to visit our blog, share in our journey, pray, and give support  ...One Day at a Time!


  1. I have followed your Jacob's story closely and prayed and rooted for him. As the mom to a CDH baby (who is now a healthy 3 year old) I always identify with the emotions of the parents as they go through the NICU journey. But your words tonight especially resonated with me because it is how I felt when I got home. Most CDH mamas get to/need to stay home with their baby, but I am an attorney and my household depends on my income so I had to go back to work less than 2 weeks after I got home from the hospital. I felt completely cheated out of my maternity leave and stressed and resented going back to a high stress job when I just wanted to be home and take care of my baby. She also came home on oxygen and meds and very hard to feed. I walked out the door to go back to work and sobbed the whole way there. I don't have any other children so I did not have that adjustment. And I have a wonderful support network with both sides of grandparents in my hometown and my husband has a flexible job as a realtor so she was in good hands. But anyways, I just wanted to say I sympathize with you and the dads who have to go back to work when you really just want to be home with your family. You guys are doing a wonderful job! Many prayers for continued good health for Jacob!!!!!!
    Mom to Dakota 12-25-2008
    RCDH survivor

  2. Andy,
    In a society where we lack true heroes, I consider YOU a hero. You are caring, reflective and there is no doubt in my mind that you have strength to endure. I think you should consider getting your blog out to the masses...I seriously think others could find support and inner peace in your writings. I think there is something much bigger happening during this journey for you. Keep your eyes open to the possibilities. Keep writing and sharing. So glad to hear you are home, and it sounds like you and your wife are doing an amazing job. Celebrate each little victory. Ps. Maybe your daughter could carry a pretend baby and care for her dolly as you care for Jacob. :-) thinking of you

  3. Andy,
    Thanks for sharing your thoughts and feelings. We are all looking forward to seeing you return to work. We have missed you. You know that we will continue to support you in anyway that we can. Just say the word!!

  4. Andy,
    I hope you were able to sleep after getting your feelings written down. Don't you worry about anything. Katy will have help and Jacob will have lots of love. When you come home, he will be all ready to cuddle with Daddy. I know you bonded with him very much like a mother does with a baby. It is different than Hazel and Landon. not better, or stronger, but different. It's terribly painful for you to leave but it will feel alright after you get back to your classroom. It's just hard to make that initial break. You do need to focus on getting an administrative job. This is the time! It would be a huge blessing and something to celebrate in the midst of these hard times. The extra income would only help to relieve stress and allow Jacob to have his Mommy at home.

    I have tremendous admiration for you. I don't know of any more dedicated husband or father than you. It's almost painful to see how the weight of everything nearly crushes you at times but you still keep going. Jacob isn't having the normal home life we may have envisioned. I suppose we all let ourselves imagine that once he was out of the hospital environment, he could be just normal (or almost) at home. It has hurt to see that isn't the case. Everyone that's been through it assures us that someday it will normal. Or a new normal, at least. He'll be right in there playing with his sister and brother. It's just going to take time. Soon it will be summer again. You'll be in the yard, in the sunshine, watching the kids play. We are in the darkest part of winter in so many ways.

    I decided to stay away as much as possible the last week so that the five of you could reconnect as a family. That's the way it started but to be honest, I've found it painful to watch as you all struggle to adjust to a new way of life. It's painful to watch Jacob not quite comfortable and not knowing why. It's hard to see my daughter have to wear such a hard exterior shell and know if she didn't, her life would crush her. It's been hard to look at you and know that all you ever think about is making life easy for everyone else, mo matter the cost to you. So, I took the easy way out and tried to sleep the stress away. I will be back and I will learn how to cope and how I can best help Katy & the kids.

    I love you very much. Mom

  5. 3 am?!?! Seriously!?!? And I thought I was a night writer...
    You are a better dad/husband than I can ever hope to be if you are up at 3 am doing all of that stuff for Jacob. Props to you.
    Going back to work so soon after coming home sucks. Boy, do I ever feel that pain too. However, even though I hardly know you, I have a feeling you count on the strength of our good Lord, and as such, He will carry you through.
    Alissa and I hope to get together with you guys sometime soon. Who knows when that will be, seeing as you guys will probably have your hands full for quite some time and we are still trying to muddle our way through our stuff...Even so, we look forward to getting to know you guys. Thanks for sharing, and keeping us all updated on what's happening.
    Take care and God bless.

  6. Dear Andy and Katy,
    That transition to home was much harder than I thought it would be. I felt so incredibly grateful to have my baby and to get my family back together under one roof. And at the same time, it was scary that I didn't have a set of professional eyes on him and nurses to share my experience and answer my questions. The weight of that felt enormous.

    It does get easier. Jacob will get well so much more quickly now that he is home surrounded by the love of his family and "normal" life. You and Katy will do anything for him as you would for any of your children and you will find out that your family is more okay than you thought it could be after all of this. I am sending an extra blessing your way tonight. Take good care of each other.

    Corinne, mama to Samuel, Feb1/11

  7. Hi there! I found your blog by reading Matt & Alisa's blog about Miss Anna Joy. I too graduated from NNU and that college community really spread the word about baby Anna Joy and I had/have the honor to read what this precious family has had to endure. I've spent the last few nights reading the journey you've been on. Wow! There aren't many words beyond Praise God! At times we don't understand what God has planned for our lives, but I've discovered through my own grave hardship that through our faithfulness, we see His glory. I don't have a child who is sick and after my first child was hospitalized after only a few days old, I have a minute idea of what you've been through. Thankfully both my boys are fine, but the past two years have been one filled with lots of trying times for our family. You see, February 3, 2010, we welcomed our second son into our family. It was a tough time for us, my husband broke his legs in two places two days before Christmas only weeks earlier. This pregnancy was tough- I had horrible headaches, naesea, vertigo, and more for the last 4 months of my pregnancy. No one could tell me what was wrong, I was just told that it would all disappear after I had the baby. No luck! Three weeks after I had my son and a week after I turned 30, I was rushed into the ER with a terrible migraine, pain throughout my body & loss of some motor function. Upon arrival at the ER, I had my first grand Mal seizure. I was rushed to CT scan and a large mass was sen in my brain. An MRI was ordered & doctors confirmed a brain tumor growing into my brain stem & a large accompanying cyst. I had horrible hydrocephalus that caused me to have another grand Mal seizure during the MRI. Emergency surgery was scheduled for the next day & I was moved to ICU. I awoke from surgery unable to walk, talk, or swallow. I was in ICU for over two weeks and then I was in the Rehab unit for the rest of my 6 week stay. It was touch & go those first few days. I got a DVT due to a medical error and my family had a horrible choice between starting me on blood thinner for the DVT and putting my recovering brain in jepoardy or to not treat the DVT for a week post op and let my brain heal from surgery, hoping & praying that a clot didn't break off from the DVT and cause a potential heart attack, stroke, embolism or death. Needless to say God was there and gently holding me in the palm of His hand. I was discharged from the hospital 6 weeks after I was admitted and went home with 24 hour supervision, a walker, permanent feeding tube & much more. I've been through intensive speech, occupational, physical therapy. Thankfully, I've graduated from them. I still have deficits I'm still working on: my double vision, my balance & gait, my swallow, and a few other things. I have been a Christian since I was a young teen, but until this, I didn't fully trust Him. I've had a life changing experience and I give God the full glory for all the healing He has given me.

    Thank you for allowing us (even strangers) to witness your journey. I will be praying for you all. Blessings be heaped upon you.

    Ck out my blog at www.bussjessica.blogspot.com and http://especiallyheather.com/, another blog that you maybe can relate to.

    Thank you for the models & witnesses you have been.
    In Christ, Jessica

    1. Wow! You have been through so much! I admire your strong faith and perseverance. I can't imagine going through what you have while trying to raise young kids. You are a very strong person. I will pray for your continued healing. Thanks for sharing your story.