Reflecting on My "Trip to Holland"

(This is in regards to our blog post on September 15, 2011:

 http://babyjacobrondeau.blogspot.com/2011/09/septeber-15-2011.html)

 

"The pain of that will never, ever, ever go away,

because the loss of that dream is a very significant loss.

But if you spend your life mourning the fact that you

didn't get to Italy, you may never be free to enjoy

the very special, the very lovely things about Holland."

Although Jacob's birth was beautiful and wonderful, it was overshadowed with fear and sadness. I am so thankful to have had two amazing and beautiful birth experiences with Landon and Hazel that went as natural and planned as could be. I mourn the loss of the bonding and sacredness experienced immediately after birth, but at least I was able to experience that not once, but twice, with my first two babies.

I also mourn the loss of Jacob's "newborn-ness" that we weren't able to enjoy, but I rejoice in the life that we have to share in Jacob. I am learning to let that go because Jacob brings such immense joy to our life every day. The joy I speak of is much greater than that of my other two kids, not because I love them any less, but because the spectrum of despair and joy was stretched greater than I have ever known. In that, I am able to recognize pain and despair more intensely, and therefore, I experience joy more intensely.

I didn't get to "go to Italy" this time, but at least I have been there before. My trip to Holland has made me wiser, love deeper, and appreciate life in a way that I never would have been able to.  I am also thankful that I was able to at least go to Holland and not some wasteland.

Welcome to Holland

By Emily Perl Kingsley
 

I am often asked to describe the experience of raising

a child with a disability--to try to help people who

have not shared that unique experience to understand

it, to imagine how it would feel. It's like this...

When you are going to have a baby, it's like planning

a fabulous vacation trip--to Italy. You buy a bunch

of guidebooks and make your wonderful plans. The

Coliseum, the Michelangelo David, the gondolas in

Venice. You may learn some handy phrases in Italian.

It's all very exciting.

After months of eager anticipation, the day finally

arrives. You pack your bags and off you go. Several

hours later, the plane lands, the stewardess comes in

and says "Welcome to Holland."

"Holland?!" you say. "What do you mean, Holland? I

signed up for Italy! I'm supposed to be in Italy.

All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've

landed in Holland and there you must stay.

The important thing is that they haven't taken you to

a horrible, disgusting, filthy place, full of

pestilence, famine and disease. It's just a different

place.

So you must go out and buy new guidebooks. And you

must learn a whole new language. And you will meet a

whole new group of people you would have never met.

It's just a different place. It's slower-paced than

Italy, less flashy than Italy. But after you've been

there for a while and you catch your breath, you look

around, and you begin to notice that Holland has

windmills, Holland has tulips, Holland even has

Rembrandts.

But everyone you know is busy coming and going from

Italy, and they're all bragging about what a wonderful

time they had there. And for the rest of your life,

you will say, "Yes, that's where I was supposed to go.

That's what I had planned."

The pain of that will never, ever, ever go away,

because the loss of that dream is a very significant

loss.

But if you spend your life mourning the fact that you

didn't get to Italy, you may never be free to enjoy

the very special, the very lovely things about

Holland.

Coming to the End of This CDH Journey

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.

Happy Half Birthday, Sweet Jacob!

"The Lord is my strength and shield. I trust him with all my heart. He helps me, and my heart is filled with joy. I burst out in songs of thanksgiving." Psalm 28:7 

The Lord has been so good to us!  We are so very blessed to have our little Jakey! His smile is infectious and oh, so heart warming. His eyes are so full of love. I can't tell you how he melts my heart every time I look at him. He is changing every day. He just started putting weight on his legs a little over a week ago and now he is pushing himself up constantly while we are holding him. He has a long way to go when it comes to rolling over or sitting up, but he spent two months in a hospital bed so we'll give him a little more time to catch up. He is getting so good at using his hands to play with his toys and grab things he sees. He squeals with his brother and sister and thinks Hazel is hilarious! Hazel was the one who got Jacob to really crack up for the first time. We managed to get some video, but it just isn't as great as the very first laugh before we could grab the camera.

 

I'm just so grateful for all that we have. Although the last six months have been the toughest of our lives, we are lucky because it could have been so much more worse. God has blessed us with many small miracles along the way, and this journey has only brought us closer to Him. 

"You have turned my mourning into joyful dancing. You have taken away my clothes of mourning and clothed me with joy." Psalm 30:11

Good News! Good News! Bad News?

Just chillin' like a pro in his tiny hospital gown!

Jacob had the CAT scan of his lungs and bronchoscopy done today. First good news...he gained almost a whole pound in just two weeks! That's always a relief. Also,  he did awesome today! He was a happy trooper! I was able to carry him into the scanning room where I laid him down and they put a mask on putting him to sleep. He was very relaxed being that he had been asleep on my chest (one of my favorite things!) prior to laying him down. No fussing, a kiss just before he was out and then I left the room. About an hour later the pulmonologist came out and shared more good news. Jacob does NOT have a CCAM (a growth or malformation) which would have resulted in Jacob needing to have a lobe of his lung removed. We do know what is causing his abnormal lung x-rays though. His thymus is large (normal) and misplaced placing pressure on his lung. Is this really bad news? Well, I'm not exactly sure. He will not require surgery (a plus!), but because his lung is squished, his right upper lobe is full of secretions that inhibit proper oxygenation to some extent (although, overall Jacob is breathing almost perfectly.) The pulmonologist and Jacob's surgeon seem to have different takes on this new development. I'm not quite sure what to make of it. The pulmonologist was happy it wasn't the CCAM but concerned about the thymus pushing on the lung and the amount of secretions in there. Also, Jacob's anatomy was abnormal but that is understandable considering his liver was up in his chest cavity pushing things around. She said she had to talk more with the radiologist but Jacob may require an MRI to give us a better understanding of what's going on and what to do about it, if anything. She said the ct-scan provided a much clearer picture of what's going on with Jacob. Jacob's surgeon seemed to think we just ride this out for a while and keep an eye on it because Jacob is doing so well. He doesn't seem to think we have to do anything.

So what is the thymus?  The thymus gland is one the the seven major endocrine glands. Located in front of the heart beneath the breastbone, the thymus glad regulates the immune system. It is largley composed of lymphatic tissue. In our younger years, the thymus gland is quite large and active. It helps program our immune system to resist various infections by helping lymphocytes to mature and be programmed to attack specific microorganisms and invading irritants.

We head back to the pulmonologist in two weeks. At that time, I'm sure the doctors will have put their heads together, figured all this out, and made a plan. In the meantime, we are feeling very blessed with how great Jacob is doing. When talking with his surgeon today I asked if he ever was more worried about Jacob then he led on. He said he was sure Jacob was going to end up on ECMO and is amazed he didn't considering just how sick he was. We are so thankful! Although ECMO can be a wonderful thing providing rest for the heart and lungs allowing for development and growth, no one wants to see their baby on it nor subject their baby to the risks if they don't have to. Jacob is lucky he did not have to fight that fight as so many little warrior CDH babies do.

Jacob's plan now is to stay on daytime oxygen for the weekend since he had to be sedated today, and then be off during the day, on during the night. Jacob will then have an oximetry study during the night where they record his saturation levels while he sleeps. If he passes, he can be off oxygen altogether!

He is risen! Happy Easter! (Jacob's Baptism)

My Cup Runneth Over!

Every time I see this picture my heart (and sometimes my eyes) is overflowing with joy. Easter was a milestone day I had been waiting for. Almost half a year has gone by. I had been envisioning the day we would take Jacob to church for the first time for all to see. (We figured it would be an appropriate age and time of year to take him into a crowd seeing as flu season is about done and he is doing quite well.) Life has pulled us away from actually attending Mass and I have been yearning for it. Well, the day didn't quite go as planned. We arrived at church too late to find seats. In fact, we couldn't even get in the doors and returned home. I was so disappointed. I wanted to show off my own little miracle. Oh well, instead I got to enjoy his smile in the sunshine as my other little ones searched Nana and Papa's yard for Easter eggs. I soaked in God's glory in a different way with my beautiful family which I have been so blessed with.

Many have asked if Jacob was ever baptized. He was at UW shortly after being born. Sadly, I could not be there but Andy was. The lasting reminder I had was that Jacob smelling of the holy oils for a couple of weeks because he wasn't getting bathed at the time. It was like his own personal holy cologne reminding us that God's hand was on Jacob. I think that smell will always take me to a different place than most people. The priest didn't give a cut and dry version. He went through the whole ceremony which was strange considering Jacob's condition at the time. It was comforting to Andy that the nurses participated in the ceremony and someone (Andy thinks it was PJ, one of the transport nurses) kept there hand on Andy's shoulder the entire time.

Jacob has been doing so well. He was off his oxygen for a week but had to be put back on because he lost weight that week and the doctors are concerned it is because he is burning too many calories while working harder to breathe. The pulmonologist disagreed but Jacob does have an easier time eating when he's on the oxygen so I'm fine with him back on. (For Easter he was able to take a little break though.)

Today was his first day off the Sildenafil for pulmonary hypertension. If he continues to gain weight, we will take him off oxygen during the day only for about two weeks then do an oximetry study overnight to make sure he is oxygenating well enough during his sleep. If the results are favorable, he will then be taken off oxygen all together.

On Friday, Jacob will have a CAT scan of right lung and a bronchoscopy as well. These will be done under sedation. That's the part I am thankful for but also nervous about. Please keep Jacob in you prayers. I worry about him being scared and in pain. He has terrible separation anxiety as it is and I hate to think of him uncomfortable and feeling abandoned. We will also see his surgeon after the studies so hopefully we will have a better idea of what is going on before the weekend.

New News!

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!!! : )

Weathering a New Storm

So yesterday Jacob had an awesome eating day!  He took all his goal feeds by mouth and did so in a reasonable amount of time. The solution: New bottle nipples that are a size up. I think that after being sick, Jacob just didn't have it in him to bottle feed effectively with his thickened milk. Because of aspiration problems we couldn't thin the milk out, so I just thought we would try a larger size nipple. He did soooo much better. Besides that, he had a much greater appetite as well and was waking right on time for all of his feedings. Now the question is: Was that just to prepare him for the stomach flu??

Yes, that's right. We have had a 24 hour stomach flu in our house. We were hoping Jacob would be spared but with Hazel infecting everything in site and putting his paci in her mouth then his, Jacob didn't have much of a chance. About 4:30 this morning Jacob starting throwing up. He threw up about 4 times in thirty minutes so I knew it was not just the normal thing.

I called his pediatrician's office (who always has one of their doctors answering any and all calls-no answering service or nurse to go through first!) The doctor suggested to start Pedialyte right away in small doses and breastmilk. Another miraculous feature of breastmilk is it doesn't upset the stomach like formula or anything else for that matter. The doctor stressed breastmilk was okay but not formula. It was the first time I have been truly thankful for the NG tube. If Jacob didn't have the tube we would have to thicken any liquids he was to swallow, thus increasing his chances of an upset stomach and more throwing up. We have been able to keep Jacob hydrated and content. He has thrown up a few more times, but for the most part, he has been able to keep down his fluids. Now I expect a fever to follow for about 12-24 hours like Landon and Hazel had, but that is easily managed. It's always scary when an infant gets the throw-ups and/or diarrhea. It is especially scary when a baby like Jacob gets sick. Hopefully, we are weathering this storm and won't have to go to the hospital as Jacob seems to be in good (however sleepy) spirits!