Owen and I had the pleasure of going to the Ladybug Run 2012 on August 12. This race was organized by Liz Dooley whose little daughter Finley was born with CDH, the same defect that Owen was born with. August 12 was her 2nd birthday. The Ladybug unit at Legacy Emanuel is the unit where the CDH babies are cared for after birth.
I had a feeling that this event would be emotional for me. I was right. I can’t describe being able to take my little man to something like this. Watching him run the kid race. He has come so far and is so healthy now. God has blessed us greatly and I am so thankful.
Owen running. After watching the Olympics for days, he was ready to run fast
and represent like Ashton Eaton! Go Ducks! (Don’t you love how I can make that
connection even on this post!)
Maddie shared the Ladybug room with Owen for the first week of his life. Seeing both of them together and healthy is such a miracle. Getting to see her family was wonderful. We don’t know them well, but we share a bond with them that we don’t have with many people. We had some of the scariest moments of our lives in the same room!
The race was a success and we hope to be there again next year!
We have been struggling with Owen’s asthma since he started school last September.
Well, this summer we seem to have finally gotten it under control. He has been using his nebulizer machine since early June and slowly weaning down on his dosage. He has been cough/wheeze free since just after Father’s Day in June. This is the longest he has gone without being sick since last September.
Seriously, it’s not even been 2 months and this is the longest stretch. But we’ll take it.
He had a check-up today with his asthma doctor and she said his right lung (his bad one) sounded normal. NORMAL! I think we have only heard that once in his lifetime and it was when he was around a year old!
So since things are going so well and we are only about 3 weeks from the start of school we are going to continue with our low dose on his nebulizer since it seems to be working so much better than his inhalers. He seems to get more of the medicine and breathe it in better. Hopefully this will help keep his lungs strong with no inflammation so he can better fight of colds and infections when he is exposed to them.
Owen is a go-getter and he has finally been able to run around and play like a normal little man. We are hoping this will continue!
Thank you for all your kind thoughts and comments on my post on Monday.
On Monday I took him to an Asthma specialist and she hooked us up. I told her all about how Owen had been over the weekend and how he has been in general every time he gets a cold and how he was responding to his inhalers, but they just weren’t enough. She said that he does have asthma. The fact that he responds to the asthma medicines confirms it even though he is too young to do peak flow or pulmonary function tests.
She gave him a nebulizer treatment in the office and it improved the tightness that Owen was feeling in his chest. She wrote out our “Asthma Action Plan” so that we know our target areas and when we need to shift his medications from inhalers to nebulizers for more of impact. And most importantly, what we can do if he has a crisis like he did this weekend that landed us in the ER (where oddly they did nothing for his breathing…but whatever, not bitter).
I feel so much better about his situation and he is responding to these new medications well. And thank God for insurance…We got over $1000 in medication (which is about 30 days worth of one and 8 days of another) for less than $100 in copays. Still expensive, but obviously worth it. And time will tell how much he actually needs with each episode.
So now we are working on getting this kid to eat. He has barely eaten a meal since Friday, he’s just surviving on instant breakfast and jello.
Again, thank you so much for your thoughts and prayers.
Little man has been under the weather again.
On Friday I took him to his pediatrician for his “well-child” check-up. Unfortunately he wasn’t very well. Owen had started a cough that he had been struggling with for the last couple of days. The doctor listened to his lungs and Owen had “diminished” breath sounds in his right lung. This is also the side that his hernia was on which meant that his right lung is already compromised compared to the left. But since Owen was about one his lungs have sounded the same.
This along with the fact that he was running a 102 fever made the doctor suspect pneumonia. He prescribed an antibiotic and we headed home. Owen got worse Friday evening and had a rough night Friday night. Saturday during the day he was okay. But by Saturday night he was struggling to breathe. He was retracting in his collarbone and ribcage (when those areas pull in severely when struggling to breathe) and breathing very rapidly. For every breath of mine, he was breathing 5 or 6 times.
After talking with the on-call service we headed to the ER around 9:30 on Saturday night.
They did a chest x-ray and found that he didn’t have pneumonia. They decided to do a blood draw and give him an IV. Not his favorite thing. Luckily they brought someone down from the pediatric unit and she got him on the first try. Owen dozed while he was getting his fluids and then after a while he got pretty upset and they gave him some Tylenol with Codeine to help calm him down. It worked.
We got home around 1:00 Sunday morning.
Grace was with us the whole time and she was such a trooper.
Owen slept until 11:30 Sunday morning. His breathing seems a bit better but he is still coughing so much that it gags him.
We are headed to the asthma specialist this afternoon to get him checked-out.
I have been doing a bit of “housecleaning” of links on the blog. One update that I thought I should note further is that I have removed the link under “CDH Resources” for Dr. Bliss, Owen’s surgeon at Legacy in Portland.
As of the first of the year, Dr. Bliss is no longer at Legacy in Portland. He moved to California, I believe the Oakland/San Francisco area but I am not positive. I would still recommend him with every ounce of my being and if you are dealing with a CDH diagnosis and are in that area of California, go to him!
As another CDH mom told me…I am now going to believe that this is God’s way of telling me that Owen doesn’t need Dr. Bliss anymore so it’s ok to let go.
There are other doctors in the same practice (Pediatric Surgical Associates) that I have heard good things about, I just don’t have any first hand experience to pass along.
I have been experiencing technical difficulties since last night and had hoped to have this up much earlier…
Please keep little Owain, his family, and his doctors in your prayers today as he goes through his FOURTH repair surgery for CDH. Doctors are hoping to use the latissimus dorsi flap to replace the gortex patch which seems to be one of the reasons for all of his reherniations.
Please pray that the doctors were able to use this technique and that Owain’s recovery is quick and uneventful!
I have been going through some things and I found these pics that my sister took of Grace when she came home from the hospital. We just had prints of them but I scanned them tonight…
We had just come home from the hospital with her so she was less than a week old.
When Owen was this age we were still days away from even holding him for the first time. He was still intubated, on TPN for nourishment, had a chest tube, a central line and IVs. Not to mention all the beeping and the major surgery.
I treasure these pictures. They make me happy and sad at the same time. Sad that I missed that sweet time with my itty bitty #2, but so happy that I had it with ittybitty #1.
As you may remember, Owen had surgery last July. Last Thursday we headed back up to Legacy for Owen’s 6-month check-up with Dr. Bliss.
As hoped, all was well and we were officially “released” from Dr. Bliss. He said that even though he wanted to come up with excuses so that we could come back for visits, that there really was no reason…What a blessing, but still sad to say goodbye to such a special man!
I don’t think that I have talked much about Owen health-wise since his surgery. He has been doing really well, but his surgery in July was very traumatic for him. In the months after his surgery he had to get flu shots (3 total). From July through probably mid-December every time that Owen and I would go somewhere he would say “no Owie get hurt?” I had to assure him with each errand that we weren’t going to the doctor, that he wasn’t going to get hurt. He seems to finally be getting through that, but it has been really hard to see him be so scared and worried that he is going to get hurt by someone.
Owen was apprehensive for his visit with Dr. Bliss, but Dr. Bliss is such a master at putting Owen at ease that they were playing trucks together within moments.
And of course we had to spend time in the Children’s Garden.
Please join me in praying for Baby Grant today. He was born on January 11 with CDH that wasn’t diagnosed in utero. He is having his repair surgery today. His mom Leah found my blog this week and left me a comment and we have been emailing.
Surgery day is one of the scariest and most exciting parts of this journey, so scary to send your baby into surgery when they are so young, yet this is where they get a chance at new life! Without surgery, you can’t move forward.
Please feel free to leave comments and words of encouragement on this post and I’ll make sure that Grant and his family get them.
For you created my inmost being; you knit me together in my mother’s womb. I praise you because I am fearfully and wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be.