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.

Rash

Feb 2, 2012 -Just a quick update:

Jacob saw an allergist and a dermatologist on Tuesday. Both are in agreement that it is not the Sildenafil causing his rash. The allergist thinks most likely a milk allergy. Jacob will be having blood tests to test for dairy, soy, egg, dust mite, and nut allergies. Maybe this will give us some insight. It is hard to say what is the cause since Jacob started the Sildenafil and breastmilk fortified with Similac on the same day. Hopefully, Jacob will be taken off the Sildenafil soon so we can eliminate one variable. He has been put on Zyrtec and we are using two steroid creams/ointments for his face and body. We will be doing two dilute bleach baths per week, and we are suppose to do wet wraps as well. The wet wrap consists of soaking tight fitting clothing and putting it on Jacob after a bath and his ointments have been applied. He is then put in a second dry layer of clothes. Preferably, he should sleep in the wet clothing overnight, but at minimum an hour. This seems like a cruel treatment. My babies (including Jacob) have always had fits when just their onsie was a little wet from a leaky diaper. I can't imagine completely soaked from head to toe! That will be my last resort!

New News!

Mar 26, 2012 -Jacob is FINALLY healthy and eating right!  It has been a long journey, but we've made it!  I always have these fears that we are going to go to the doctor and they will tell me Jacob is not doing as well as expected, thus I am failing as his mother. I know this may sound silly, but day to day I am always having to make decisions on Jacob's care and needs (which are constantly changing.) I always confer with Andy but he always defers to my judgement because I have had more experience when it comes to medicine (albeit very little experience.) This has put a lot of pressure on my shoulders because, as a perfectionist, I feel Jacob's failings will be reflections of my failings.

Two weeks ago we went to a follow-up appointment and all my fears were put to rest. Although Jacob has been very sick with a respiratory virus and the stomach flu, he has managed to grow and gain weight. The doctor and nutritionist were very pleased with his progress! They couldn't believe how well he was doing despite how much he has been going through. We were given the go ahead to let Jacob determine how much he wants to eat (or not). I can't tell you how much pressure that relieves! Since then life hasn't seemed so straining day to day with worry. Jacob is telling us when he's hungry and can actually push his bottle away with his hands now when he doesn't want it. (He's getting pretty good with his hand motor skills.)

We had another appointment today with Jacob's cardiologist and his echocardiogram looked great!  He is oxygenating at 100% on and off his oxygen. The doctor lowered Jacob's medication for pulmonary hypertension (Sildenafil), and if he continues to remain steady, I can discontinue it altogether in three weeks! She also said she was comfortable with Jacob being off his oxygen. WHAT?! Those are words I didn't know we would even hear his first year! Since the symptoms of having trouble with weaning the medication are the same as taking him off the oxygen, we decided to keep him on the oxygen for as least the beginning of trialing him at the lower med dose. Do you know how amazing it will be to be able to carry my baby without being tethered to a machine?!?!?! I was buzzing with excitement all the way home from the hospital!

We head back to the pulmonologist, surgeon, and nutritionist next week for check-ups and a chest x-ray. Jacob has had a chronic partial collapse of his right upper lobe of his lung. It has pretty much been this way always and no one is really sure why. Jacob's surgeon has discussed the possibility of a CCAM/CPAM (Congenital Pulmonary Airway Malformation)-more to come on that if it is the real culprit. If there is still no improvement, Jacob will be having a c-scan and possibly some other tests to see if they can determine the true cause.

For now, we are all SMILES!!! : )

Coming to the End of This CDH Journey

May 3, 2012 -Today Jacob had another echocardiogram of his heart. This was the first one since he has been off his pulmonary hypertension medication so I was a little nervous. I didn't need to be. He passed with flying colors! The cardiologist said the right side of his heart looked very good, no thickening and his septum looked good as well. She said they look very "happy"!  We also met with Jacob's surgeon and he is so impressed by Jacob each time he sees him. He said he looked better than ever. It was the first time he had seen Jacob without any tubes and the sensitive skin of his face all healed. Since being off the Sildenafil, Jacob's skin has vastly improved all over his body! We saw a difference within just days of him discontinuing it.  I knew that was a huge component of his skin rashes. I'm so thankful he can have a some relief from the hivey, rough rashy skin.

The next time we have to visit the cardiologist is in two to three months. Then we will follow up again in a year!  Our next trip to Seattle Children's is in later June for another swallow study and meetings with the pulmonologist, occupational/physical therapist, and surgeon. This will be the longest we have gone between visits to the hospital. We have pretty much been there at least every two weeks since being discharged at the beginning of January. Once we have the results of the swallow study, we can start feeding Jacob solids. Then we are pretty much on a maintenance plan. No more frequent visits! I can't believe we are finally seeing the other side of this journey.

This week was particularly tough with the news that a fellow CDH baby, Esther, didn't make it and passed away at 20 days old. I grew quite attached to this sweet baby girl through reading her parents' blog and Facebook page. It was the first CDH story I have been able to really follow and get emotionally involved in. It has really made me more and more thankful that we have our precious son who has brought us an abundance of joy. I can't say we are blessed because what does that mean? Does that mean other parents who lose their children are less blessed? No. What I can say is that I am so grateful that we were spared. Spared the heartache and the turmoil. Spared from a devastating loss that I'm not sure I would ever recover from. This journey over the last seven months has been faith building but also faith shaking. I have never prayed, praised, and pleaded with God so much nor asked so many questions. God works in such mysterious ways. He reveals himself through it all, even if it's not in the way we hoped or in our time, but His. I'm glad I've had my faith to carry me through these most difficult and most wonderful times in my life.