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.

Just a Cold?!

Feb 13, 2012 -After Jacob's appointments Thursday, he went to bed at 8pm and woke up at 6am. We woke him to force him to eat but otherwise he did not wake on his own. Throughout the day Friday, he slept almost all day except when he was awakened to eat. Even when he was awake, he was very drowsy (although in good spirits.) He is very pale. The nurse from the Dr. Marshall's office called to discuss lab results just about the time I hooked him up to the oximeter due to such poor color. (He was still saturating at 100%.) She consulted with the doctor and called back saying we needed to take Jacob to his peds office. I was sick with a cold and fever so Andy took Jacob in. The pediatrician said Jacob had no blood return in his hands and feet and they look blanched so he felt taking any more blood for testing was unnecessary as he could see Jacob was anemic.The pediatrician felt Jacob should have a larger iron supplement along with his multivitamin and be seen again in a week.

At Jacob's follow-up visit on Thursday, the lab tech told me for Jacob's weight he should not have more than 20 mLs drawn in thirty days. Jacob had 27 mLs in just six days not including the frenotomy in which he bled off and on for two days. He has also had other blood draws this past month.

Jacob was struggling to eat. He was only eating  about 50 mLs per bottle (was taking 80-100 previously). After about that much, he would suck on his bottle and appearing to be eating but when we would check to see how much he had eaten, we'd realize he had eaten very little or nothing more at all. Saturday he ate only 460mL when he should be eating at least 640+. The day before was worse. It was taking about an hour and a half to get one bottle in him when it used to take 15-20 minutes. This obviously just tired him out more but I was so concerned about him getting enough fluid in and nutrition.  He was quite pale and very tired, although not as sleepy as he was the last couple of days prior. He was not fussy. His urine seemed more concentrated. He was still breathing easily, oxygenating at 100%.
Kids never fail to get "sick" when it's the weekend! At least Jacob is a typical child in one way! : )

All these symptoms had us in the ER with Jacob yesterday for 6 hrs. A few tests were done and we confirm Jacob has caught the family cold virus. The blood draw seemed to kick off his exhaustion along with contracting the virus. A simple virus like this easily wipes out a body like Jacob's that is working so much harder in so many ways. He isn't even showing the common cold symptoms yet, but his exhaustion led to him getting more and more dehydrated. The surgeons really wanted to admit Jacob overnight because kids like Jacob can take a turn for the worse so quickly, but I knew there was nothing they would do for him that I couldn't do at home (except I won't be bugging all hours of the day and night with blood pressure and temperature checks keeping him from resting soundly.) Plus, there are more germs at the hospital for him to catch. They started an I.V. to check his electrolytes and then gave him a bolus of saline to boost up his hydration.  We had to replace his feeding tube last night to be able to feed him what ever he can't take by mouth and to keep him hydrated. He is being more closely monitored with his oximeter to make sure he is breathing ok. He just started getting stuffy sounding today and unfortunately got a bloody nose too. (Feeding tubes are no fun!) One bonus of the feeding tube is being able to get all his meds in without a fuss. The down side is it is just that much more work again to prepare his milk for oral feeds and also tube feeds. We are also back to having to prepare bottles and then hook him up to the pump afterward. All the steps that are involved in all that are so time consuming. (As if I have more time to spare!)  And of course like any sick child, Jacob just wants to be held and cuddled.

The house is a disaster, I haven't found time to shower, and Landon and Hazel are yearning for attention. Jealousy and the need for special attention is really setting in with them. I wish there was more of me to go around. I feel so guilty not being able to give my all to each kiddo. Each of them has specifics needs that I can see need to be addressed, but I feel I am spread to thin to adequately take care of them. It hurts. It's also a blow to see Jacob's face with more tape and a tube coming out his nose again. I know this is temporary but it feels like a scary step backwards. I can only imagine how parents must feel when their child reherniates.

Hoping this cold passes quickly and we can get back to "normal." Please pray we don't end up back in the hospital for a stay. With Andy unable to take anymore time off work, I just don't know what I would do if we have to go back. I was just starting to feel like I was getting my feet under me and was going to be able to start putting our lives and home back together. I guess we'll get there someday. Here's to taking it day by day!

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