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.

Two Worlds Collide: Adjusting

One week after being home.

Jan 31, 2012 -It has been so physically exhausting to be at home at adjust to this new life. Landon and Hazel are busier than ever! Jacob and all his needs would be exhausting on their own, but balancing that with meeting the physical, social, emotional, and spiritual needs of two other young ones puts us in over our heads at times. At first, I was just barely hanging on to sanity wondering how on earth I was going to continue. I feel like we are up around the clock with only little short naps sporadically throughout the day and night. It is hard with Jacob to get anything done because he is constantly tethered to his oxygen source. Therefore, you can't simply carry him around to take care of things. Add to that the fact that if you leave him alone for one second (and that is no exaggeration!) Hazel will "get" him. She tries so hard to be a little mommy but has no idea how fragile a little baby is, especially Jacob. And like we've mentioned before~She can CLIMB...anything! So no matter where Jacob is, he is somewhat unsafe unless locked away in a bedroom all by himself (he hates to be alone!) He only catnaps during the day, but gives us some reprieve by sleeping through the night except to eat. He came home with a feeding tube which meant we could kind of "cheat" by feeding him through that instead of waking him and working with him to eat orally. But even "cheating" meant we had to get out of bed warm his milk, prime the pump, hook him up, snooze a little then wake back up to turn off the pump, burp him, and flush his feeding tube. Oh, and I forgot we also have to give him meds around the clock.  Starting out, Jacob was throwing up sometimes three times a day (now it's usually only once), and I really mean vomiting, not just spitting up like a normal baby. It is often projectile and covers you, him, and everything around you. He eats every three hours, but this prep and routine take about an hour, especially if he needs to have his clothes changed (and yours too.) That means 8 hours are just his feeding routine, then add another 4 for breast pumping. I am left with 12 hours to prepare meals for the rest of the family, clean, do laundry, play, read stories, bathe the kids, take Landon to school and pick him up, shower, eat, and at last...sleep. Thank the Lord I have Andy to share this load and my mom, who takes Landon to and from school. Andy is AMAZING! He shares this load at least 50% of the time, if not more. Lately my body has been just shutting down. It is really weird. For example, I will fall asleep and CANNOT be woken up. Andy will talk, shake, yell, Jacob can be screaming, and I will hear nothing. I can't remember anything I say when I have a conversation after being woken up. My dreams have sometimes become my reality and my reality my dreams. I can't keep track of heads or tails. It is very creepy. I have never known such exhaustion before. My poor kiddos have a mommy with no reserve therefore no patience. : (

Landon feeding Jacob for the first time.
 Jacob is doing very well at home. He has steadily gained weight, and the doctors and nutritionist were pleasantly surprised at just how much after his first week home. On the Friday, the thirteenth, Jacob took out his feeding tube for the second time (even with his mittens on.) We decided then to keep it out and see how much he could tolerate taking all his feeding by bottle and if we could get all his medications in him too. So far so good. We have never put the feeding tube back in and Jacob is still gaining weight. Getting him to take all his medications was the biggest challenge at first, especially because he can't handle liquids that aren't thickened. We sneak most meds in his bottle unless they are quite tasty. Then we just add a little gel thickener to those, and he has learned to take them by mouth. Jacob's last two echocardiograms were normal, meaning he does not have pulmonary hypertension, so he may be off some of the medications soon. In the last week, we changed his omeprazole (Prilosec for reflux) to once a day then discontinued it all together. He has shown no signs of reflux since!

These are all the medications Jacob came home with.

One problem Jacob is having is suffering with a horrible rash. It started in the NICU when his Sildenafil was started. We aren't sure that is the culprit. It could just be a coincidence, but the rash has gotten progressively worse over time. Dermatologists looked at it while he was in the hospital but was diagnosed with heat rash or eczema. I'm pretty sure heat rash doesn't last over two months and there is no way this is just eczema. Finally at our visit last week, Dr. Avansino saw the full blown rash and was shocked. We have an appointment tomorrow to see a dermatologist at Seattle Children's (typically we wouldn't be able to get in until May!) Jacob is also going to Northwest Asthma & Allergy Center tomorrow to be tested for any allergies he may have that are causing his rashes. His skin looks horrific!  It is painful and itchy, bumpy and swollen, hive like, and his scalp is just gross at times. It oozes and then scales over. His ears also ooze a yucky white goo that smells yeasty. We treat Jacob head to toe with hydrocortisone ointment and give him benedryl. Those may help relieve some of the discomfort but the symptoms have never disappeared.

This is not even close to the worst it has been.

Notice on the back of his arm how puffy the hives are.

Loves his Baby Einstein!

Jacob has changed so much since being home. He likes to play with his hands and try to reach out or bat at his toys. He loves his Baby Einstein with a musical star. He has also been "talking" a little and has the softest voice, although he can wail with the best of them! I think I appreciate Jacob's cry more than most because I am so very thankful for those lungs that allow him to do so. He is smiling all the time and makes beautiful eye contact. After all Jacob has been through, it is a great relief to have him reach the "normal" baby milestones at the appropriate times. I always worry that Jacob might have some delays due to all the medical trauma he has been through. We continue to pray that Jacob is healthy in every way, including cognitively.
All tuckered out!

Friday is another little hurdle for Jacob. He is tongue tied and will have a frenotomy (clipping of the skin under the tongue) on that day. It is not suppose to be that bad and babies take a bottle or breastfeed immediately afterwards. I'm hoping for Jacob it is no big deal as he has had enough ouchies in his short little life.

Next week we meet with his pulmonologist to check his lungs, endocrinologist to check his thyroid (which had been too low), the nutritionist, and surgeon.  (I am really looking forward to a week with no trips back to Seattle!) Hopefully soon Jacob will be able to wean off the oxygen. Then we won't be tethered to certain areas of the house. He will most likely be off the oxygen during the day and on at night.

So that pretty much catches us up to date. It has taken me so many days to write this! It is now 3:30am and I need to be up at six for Jacob's next feeding at to get ready for our big day (just the two of us-my first trip by myself with Jacob~nerve wracking!) back at Seattle Children's.


  1. Dear Katy,
    Big hugs, CDH mama-warrior. Your post brought back sooo many memories for me. I could FEEL my body going through those very motions and feeling that same exhaustion. I still sometimes have that falling asleep and not able to wake up thing - I agree it is creepy, like being paralyzed. But much of what you describe is already fading away for us and Samuel is only a few months ahead of Jacob on this journey. You will get there - and sooner than you think.

    So I know that probably doesn't help when you are right in the thick of things. But really, this too shall pass. It is a very challenging stage - maybe as challenging as the hospital part because the sense of responsibility is, I found, so very overwhelming. You can do it, Katy. And your amazing children will be okay with a tired, impatient mommy for a while.

    Mama to Samuel, lcdh survivor, Feb1/11

    1. Thank you for all your support and words of wisdom. I know you have been through tons more than I have with Jacob. It's always comforting to hear that I am not alone in my feelings and that what I'm going through is what others have gone through. Then I am always reassured that we will come out the other side as you have! Lots of prayers for Samuel as well and wishing him another speedy recovery!

  2. Well, I didn't see you had posted this until after I commented on your previous one. Glad to see you are managing - although it feels like you are barely getting through each day and night. I'm so glad you have Andy. What a blessing our husbands are! I hope your appointment goes well and they find answers for the rash. Jacob is absolutely beautiful, and you are AMAZING! Hang in there... one step at at time... as you know. I'm still planning to send you a little something - hopefully soon. I'm finally starting to feel a little better physically, so I'm able to function more lately. Love & prayers!!!

    1. Happy to hear you are feelling a little better. You don't have to send me anything. Just take care of yourself! :) Continued thoughts and prayers for you and your family.

  3. Glad he's doing well. I'm sure in time you'll all get there, rested and with patience:) I wanted to chime in on the rash. I am by no means a dr but I would venture to guess that it is the Sildenafil. My daughter developed the same rash when she was started on it, only she would spike a fever and become inconsolable as well. Her cardiologist always said he knew alot of kids got rashes from it and that was just something she would have to do deal with, the benefits outweighed the risks. Only it turned out she had a very rare ( I guess like .1% will present with it..) reaction to it and the other things were it too. So, anyway our cardiologist told us it happens alot with it..Good luck!