Look closely… Closer… Closer…. What’s missing??? I’m breathing ROOM air!!!!! I had to wait till my 11 week birthday to be a total show off!!! I love love love to eat and doing great! I’m up to 30cc every 3 hours now through my NG tube. They want to move me to CVacute but there’s no room. I’m happy to stay because I LOVE all of my friends here! Mommy and Daddy have to meet with Dr Tran, my Oncologist, today and decide what tests I need for my 6 week follow up. Please pray for that as they are pretty nervous. Whatever they say I know I can kick cancer’s booty too! Hope you have a great day! Love you!
Joy, Peace, Fear, and Hope. These are the emotions that we feel everyday in the CTICU. Our journey has been long and we are realizing a little more every day that it will never be over. We are parents! We are parents to a child with a congenital heart defect (CHD). 1 in 100 children is diagnosed with a CHD. The numbers are astounding. Studies are still being done to see if CHD’s are genetic. So many questions flood our heads because of this. Will our next child have a CHD? If we knew if he/she would, how could we even consider growing our family? How could we put another life through all of this? How could we not ask these questions and how could we play the odds? At the end of the day, we can’t answer any of these questions. For now we take it a day at a time. We wait for more research to be done and technology to advance. We celebrate every day with Owen. We live each day like it is our last. We laugh, we cry, and we pray! We are thankful and feel blessed! Owen is 10 weeks and 6 days old! What a victory! He has survived two life saving heart surgeries! He is a mighty warrior; a miracle! In fact, I wish that there was another word to describe him. In our eyes he is that and so much more. His heart conditions combined are incredibly rare. Partner that with his neuroblastoma tumor and it’s nearly impossible to find another kiddo just like Owen. He has surprised the medical professionals with every turn and daily surprises us with his resilience and fight. Owen is our HERO!
There is a funny thing you feel being a parent in the CTICU. It is like a “Survivors Guilt”. If anything our 76 days in the CTICU has given us an empathy and understanding for each and every family in here. We have felt in the hallways the emotions of lives being lost, lives being saved and families in limbo. You can see the exhaustion and sadness among the staff when a child is so sick and a family is so lost. You can feel the joy and excitement from that same team when a child rises above all obstacles and defies the odds and barriers in front of them. That is the CTICU. Every day you are aware of the other parents around you. You become cautious celebrating a victory, a line or med being removed, or your baby being extubated too loudly because you don’t know what your neighbor is dealing with. You are also cautious not to show too much sorrow because you want your neighbor to keep the faith that all of our children will be okay.
We started this blog when I was pregnant mainly to update our family and friends on Owen’s condition. We never expected to be in the hospital as long as we have. We never imagined that this blog and Owen’s story would touch so many lives and inspire so many people around the world. We are so encouraged by the love we have received and are so happy that our journey will someday help a family tread the waters when they receive the news that their child has a congenital heart defect. With that being said I would like to give some words of wisdom to those families. Consider it our coffee break together. One heart Mom to another.
#1 – Empower yourself! The CTICU is scary. They speak CTICU Chinese in here and you will be lost. You will walk in with your sick child like a deer in headlights, fear stricken, and overwhelmed. Those feelings are okay. Feel them, process them, and then get OVER them. Bring a journal. Write down your questions (trust me you won’t remember them by the time you meet the correct professional to ask them to). Take notes during rounds. Reading these notes will really show you how much your child has improved. Utilize the whiteboard in your room. Write questions on it, goals for your child’s care, and details on your child’s condition. Note: Ask your nurse first! You are sharing your room with him/her. Think of it as his/her office. Don’t just show up and try to take over. That’s NOT how you make friends!
#2 – Research & Ask Questions – I can’t stress this enough. You have one patient. God is the best Doctor but you are the best advocate. You know your child. Whether your baby is one day old or 4 years old, you KNOW your child. Trust your parent intuition. 9 times out of 10 it is right! Ask questions. Use the tools above, do the research and be involved.
#3 – Heart Dance – Be prepared it is very common during our child’s recoveries to experience what many heart families call the heart dance. They sometimes takes two steps forward and one step back. Refer to your notes and you will see that they are still improving.
#4 – Be Positive – Attitude is everything. Try your hardest to keep a positive attitude. Focus on the victories. There will be many. By having a positive attitude you will be able to see all of them. Though some days it’s hard, they are not all bad.
#5 – People will say stupid things. – They will seem stupid because you are under a lot of stress. Try not to explode on kind people. Nurses will ask you all the time if you need water. It’s all they have to offer. Believe me, if they could offer you a stiff drink they would! They are not in the business of torturing stressed out parents. You will be asked “how are you holding up?” and “how are you doing?” multiple times a day. Figure out a response and be prepared. They only ask because they care and don’t know what to say. Before you were a heart Mom you did not know what to say either. This leads me to the next and last bit of advice.
#6 – Friends and Family – They LOVE you! They hurt with you! They want to help and fix your pain but don’t know how. They don’t know what to say because no one knows what to say. Tell them what you need from them. If they can give it to you, I promise you they will. Whether it is a text message every day, a joke, a hug, a shoulder to cry on, a warm meal, anything. They want a job! Reach out to other heart families. Find a support group specific to your child’s condition. BUT, still keep in touch with your friends. They will remind you that life goes on. How great is that? Your life in the CTICU is not forever! You will be home with your friends and family just living life before you know it.
#7 – You will never be the same – Becoming a parent changes you. Becoming a parent to a heart baby makes you look at the world in a much different light. You have been blessed to be your child’s parent. God chose you to watch over this precious child. God knows that you can handle it and you can handle it well.
#8 – Cling to your spouse – You are the only two that get it. He is your best friend, your lover, and your partner. Make decisions together. Do not make a change for your child’s care unless you are both on board. Respect each other. Take breaks, go on dates, and try to connect. Its easy to fall into a routine. Don’t let the stress of it all get in the way of the love you have for each other. Your love is the rock that will get you through.
#9 Have Faith – God chose you. Its as simple as that. Jeremiah 29:11 For I know the plans I have for you says the Lord. Plans to prosper you and not to harm you. Plans to give you HOPE and a FUTURE.
#10 You can do it!!!
I would like to end this with Top Ten benefits of having your child in the CT ICU for 11 weeks
(please read with the sarcasm that I am typing this in!)
10. You can have a glass of wine and fall in to a very deep sleep and not have to worry about not hearing your baby cry in the middle of the night. Thank goodness for night nurses
9. You can finish an entire meal without being interrupted by a screaming baby
8. No one disturbs you while you are trying to pee
7. Diapers are free (if you don’t count them towards your outrageous insurance deductible)
6. You have access to a “babysitter” every night of the week. Added bonus they are fully trained in CPR and advanced life support and they’re free
5. You have access to a Pediatrician 24/7. Don’t have to second guess a slight fever and rush to the ER for having a baby swaddled too tight
4. If you don’t want to change a stinky diaper, you also have a 24/7 diaper changer who is happy to do it
3. You can wear the same 5 outfits over an 11 week period and no one will judge you
2. There is always coffee made and someone else makes it
1. Stress coupled with not so delicious hospital food is a fabulous way to drop the baby weight!
Owen’s realized that there’s tape on his nose and keeps going cross eyed! He cracks us up. We feel so blessed to spend so much time with him and watch him discover new things. He’s doing great today!!! He is so happy that he is getting fed…. We started at 10cc every 3 hours this morning and have been raising the amount by 5cc every other feeding. He is currently up to 20cc and tolerating it great! I’ve asked to meet with the occupational therapist again and going to get him working on his sucking and swallowing reflexes. We aren’t going home with a feeding tube if we can help it! They’ve also started weaning the oxygen support again and plan to go as low as is comfortable for him and as long as his saturation levels stay above 92. So far he is at 1.5 liters with sats of 100! Go Owen! Owen was placed on a medication for his arrhythmia over a month ago. The medicine has kept the arrhythmia under control but recently has lowered his heart rate. We spoke with his cardiologist and since we are still in the CTICU they feel like it is a good time to test the waters and discontinue the medication. Please pray the arrhythmia do not return! They are going to give him a break today on the Dilaudid wean and try to wean him again tomorrow. Dilaudid is a very heavy narcotic and since he has been on it for so long it is going to take him a while to be comfortable without it. There is a wean protocol that must be followed and unfortunately like other parts of Owen’s recovery will just take time. We are so happy to report that our prayers have been heard. His WBC and CRP went down again! We don’t have an infection!!! Yay!!! His BUN and creatinine are up a bit so we are pulling back on the diuretics and going to give them a little break. Can’t have our tiny prince looking like a California Raisin! Lastly, he’s doing so well they put him on the list to head back to CV Acute when a room is open! While we are nervous, we are so excited with how well he is doing! Owen Version 2 rocks!!!
Day 75 and don’t let that smiling lion fool you! Our lil’ man has had a tough day. We have a good, bad, and ugly times 2 to share with our little heart family. The GOOD- Owen was weaned off of high flow and onto the regular nasal cannula. He has done great! In fact, his respiratory rate is better than when he was on the high flow support and he had the best blood gas that we have seen in a while! The BAD, Owen is FUSSY!!! He had a big win today and started 5cc every 3 hours directly into his tummy! He has not vomited and seems to be tolerating it well; except we think he wants MORE! He seems to be VERY hungry now that his stomach remembers what food is. In comes the UGLY- Mom is still wearing the same two Maxi skirts she’s worn since she showed up in LA, is very tired from 8 hours of a crying baby (although I love love love finally hearing him cry), and is hungry (note: I’m not a nice hungry person… Now we know where Owen gets it from). Couple that with Owen dealing with the second UGLY – possible withdrawal and there is just one ball of fun in the CTICU today. Pray Owen continues to tolerate his feeds so we can give him what his tummy wants and that he can be weaned from the hydromorphone with little to no withdrawal symptoms. Also, pray for mom’s sanity. Somedays I wonder where it went on vacation and when it plans on coming back!
Keep the prayers coming! My WBC and CRP are starting to trend down and my preliminary blood culture is showing negative! They’ll watch it for 72 hours but so far so good! My high flow has been weaned to 2.5 liters and they’re giving me Pedialyte today to get my gut ready for feeds tomorrow! Please pray I can tolerate the feeds NG, mommy doesn’t want me to have to get them NJ. I also got a wean on my narcotics and I’m praying I don’t have any withdrawals! Withdrawals stink and make everyone really sad! I was really active this morning so mommy kept putting that darn camera in my face. She loves to show me off. Mommy posted a video of me on my Facebook page at http://www.Facebook.com/lionheartowen I wanted her to share with all of you! Hope you have a great Sunday!
One of the scariest words you can hear in a hospital is infection. Owen’s WBC and CRP came back elevated this morning. They did a recheck and they are still up. He does not have a fever or any other signs of infection but you can never be too cautious. He was started on antibiotics and his blood work will continue to be watched. Please pray that this is nothing and his levels go back down!
Bruce and Owen are the best of buddies!!! He’s been babbling to him all morning. Music to my ears! Owen is doing awesome today. He had the best X-ray that we have ever seen! Who knew all you needed was some working pulmonary veins!?!?! He is going to be weaned on the oxygen today and get his art line out too! Yay! Every line out is a huge victory! Please continue to pray for healing. Your prayers are working! Also, rejoice and be thankful along side us for all of the blessings we have received!
I’m feeling much better today so Mommy said I could send an update to all of my friends. Mommy and Daddy learned their first BIG normal parenting lesson last night! Babies squeak, they can appear restless, and they squirm BUT they are sleeping!!!! Leave them alone!!! They thought I was having a tough night and were very jumpy. They’re still learning that even though I have a special heart I am still just a baby. They started making me anxious so I began to breathe really fast and needed some extra support. Then at midnight mommy told daddy that they needed to leave and they gave me a big kiss. They knew my nurses would take good care of me but were still worried. Right after they left I settled in, slowed my breathing and slept all night! Sometimes I wish I could talk so I could tell them I’m ok! Everyone is really happy with how good I’m doing and comes in throughout the day to look at me and smile. I love all of the attention and Mommy has been calling me Casanova and a show off… I told her its tough being this cute and I just can’t help it! I’m on 6 liters on the high flow now and once I’m down to 4 they can start feeding me again. I can’t wait! Milk rocks!!! I’m also hoping they can figure out how to get the nasal cannula to stay on my tiny face without this goofy tape on my nose. It’s really making me have to up my game with the ladies. Thank you for all of your roars. I could feel the ground rumble with all of your support and prayers. I think we all made God smile with all of our prayers. Love you hope you have a great Friday!!!
Aka… Lion Heart, Mighty Warrior, Baby O, O Dog, Boo boos, OT, Lion King, Lil’ Man, Lil’ Buddy, Rockstar, Mama’s Boy, Strong Fighter, Lil’ one, Handsome face, Hamburglar, Cutie Pitootie, and many more!
Somebody’s tubeless! Owen was extubated at 2:35pm today! We are so excited and scared to death. Things are moving so much quicker than we are used to and we fear our lil’ lion can’t keep up with all the changes. He had a very exciting afternoon and is finally getting some much needed sleep. Please pray that he has a restful night and is able to breathe well on the high flow nasal cannula. Please pray for Mommy and Daddy’s nerves as all the changes make us a nervous wreck!
He had an interesting night. He got his chest tubes removed yesterday and looks great. Mid afternoon he woke up and was very uncomfortable. He was agitated and his blood pressure went up as well as his heart rate. Jeff and I were very concerned and asked for the doctor and then talked with the fellow as well. They all believed he was dealing with some withdrawal and pain. We weren’t convinced. 4 hours later and one very upset daddy, Jeff bumped into the surgeon in the hall. Jeff told him our concerns and he came in to check on him. When he saw Owen he asked “why is this lil one awake?!?!?” He ordered a stronger pain med and felt our lil’ man was just dealing with pain from it only being ONE day since a life saving open heart surgery! Well, pain meds were given in a separate line and our little man calmed right down and had a restful night. Fast forward to this morning and one very comfy baby later we come to find out his picc line was kinked AND he wasn’t receiving the original pain meds last night!!!!! That’s why he was so agitated and upset! It has since been resolved and he has been weaned from all of the extra pain meds that were given but not received! He was intubated nasally during surgery and I hate it! His poor nose is way too small to have a big tube coming out of it. He is breathing great and they are going to start him on some workouts today! His heart rate and blood pressures are great as well! Our lil’ man is a champ!