Tuesday, March 24, 2009

Hayden is 1 month old and needs another surgery

Our beautiful boy is now 1 month old! Much has happened this past month, but just yesterday we went to get Hayden circumcised from his SB urologist and while we were there, we learned that he is gaining weight like a champ now at 9.7lbs and I also pointed out a spot on his groin that I had noticed while cathing him. The urologist massaged it and said, there, now do you feel it. It had temporarily gone away and he said that it is definitely a hernia. I felt pretty overwhelmed at this point when the doctor said that he would need to have another surgery to repair it. He has been doing so well, that my heart ached.Now that we know he has a hernia, he will likely have an operation at 3-4 months and simultaneously get a circumcision while under anesthesia. A link to describe the operation I found at: http://www.cincinnatichildrens.org/health/info/abdomen/diagnose/inguinal-hernia.htm
As I reflect on my journey many thoughts come to mind. In the past 12 month period, while my blessings have been great, I have been stretched to learn the depth of my strength from trials. We have gone through the trials of fertility with IVF, the elation of getting pregnant with twins, the heart ache of losing one of the twins to Vanishing Twin Syndrome, the wonderful news of a baby boy, the heart ache of learning of Spina Bifida and all of the unknown devastating possibilities, Scott's hospitalization, Hayden's birth and recovery from surgeries. I think of the saying that you have to know sorrow to know happiness. I must say that my recent happiness is that much sweeter because of the sorrow that we have gone through and not knowing the blessings that awaited us.

I have made it through those rough times even though I thought I couldn't bear any more as I connected with other people that offered love, support and some had been there and triumphed like the blogs that I follow (Etchell's, Beamovi, lil Gibblet, Nate). The wonderful thing about a blog is that I hope that our experience can offer encouragement to others that may face some of our same trials. All our love~

Sunday, March 22, 2009

Another Video of Hanna Dancing Like a Star

video

Hanna Paints Our Carpet

Yesterday while Scott was mowing the lawn, Hanna got up from her nap. Adrienne was feeding Hayden and Hanna got a hold of some red nail polish. Then she decided to paint the carpet with it. Needless to say she used the whole bottle. So when searching on Google, we are obviously not the only ones that search this topic. Search results were in the millions.

So if your carpet is light use nail polish remover and you can use hair spray also. After using some polish remover and Oxy Clean Spray, we broke out the heavy duty Bissle carpet cleaner. The key is to keep the stain wet. Carpet looks pretty darn good. Hanna kept saying "oops, break." The good thing is I think we have some of the right tools and cleaners when this type of thing happens again. No matter how much you try to keep things out of your kids reach, they figure out how to get their hands on stuff.

Hayden is doing great. Last night he slept 8 full hours 11-7. Just like a typically boy he eats a ton and sleeps a lot. I think we are turning a corner where he is up more during the day and sleeping more at night. Our beautiful boy just loves to chill.

Wednesday, March 18, 2009

Hayden's 2nd and 3rd week adventures

Hayden has had a great past 2 weeks. He has had a week long visit from Grandma Anna from Montana and Aunt Melyssa from Arizona. It was very cold and rained all week so we stayed in and ate Grandma Anna's wonderful food while Hanna played very hard with Melyssa. Hayden had his 2 week check up with his pedi and had a great report for his health.
Week 3 has been spent with Kiki and Bear Paw from New Mexico and the weather has been beautiful. Today we all went out together to enjoy the sunshine. Hayden checked in with his neuro and they said he was doing great and weighed in at 8lbs 14oz, a pound heavier than birth. He is a good baby with a blessing of good health.
All of the help has been wonderful and Hanna continues to make the transition to big sister wonderfully. She has had no lack of attention from all of the fun helpful visitors. Here is a picture of Hanna getting washed offed after her attempt at gardening.We continue to count our blessings and thank you for all of your prayers that have attributed to Hayden's development.
We are also happy to report that Hayden's cousin Pierce was born on 3/16. We can't wait to meet him!

Friday, March 13, 2009

Hanna and Her Trampoline

Since the neighbors politely said that we could come to their backyard anytime and have Hanna jump on their trampoline, she has been asking everyday. While it definitely is a good time for her and we love our neighbors.. not so much fun for us at 8:00 in the morning when she asks to go jump with the fu-fu's (dogs). Then of course like any two year old, she gets a little mad , which is an understatement when we cannot go. So the new trampoline was the best $20 investment of all time. Now she can jump inside or outside and in any room in the house. It has come in real handy since it has been raining in Austin since Tuesday and we cannot take Hayden outside yet.

Hanna also figured out how to jump and pretend to talk on the phone at the same time as you will see in the video.


video

Wednesday, March 11, 2009









Hanna found her new playing place, a large toy bin with all her Dora balls. The funny thing is while Hanna is in the bin she points at what she wants to be put in the bin. Hmmm I wonder where she gets that from. She really loves Hayden, laughing when he cries (which is rare) and kissing him. Hanna is our big girl now. It is so amazing how much she has grown up in the last few weeks. Or maybe it is me realizing how little she once was. Time sure does fly.

Does Hanna Like Balloons or What?

Our good friend Brian Yacktman brought balloons by on Monday for Hanna. This video is a tribute to how much Hanna likes balloons. Thank you Brian for adding to Hanna's joyful spirit. It made our day.
video

Sunday, March 8, 2009

Friday, March 6, 2009

1st Day Home

Yesterday was a big emotional day for us all. After NICU staff rounds yesterday, Hayden was taken off all monitors and issued a discharge. Scott spent the morning checking out of the Ronald McDonald house and worked hard cleaning. The Neonatologist said that our stay was short (I don't want to think about what a long stay is) and that Hayden had recovered faster than any baby with meylo spina bifida in his memory. Praise God for answers to prayers! Hayden had the best surgeons and nurses. When we got home Hanna was sleeping taking her nap. When she woke, we recorded her reaction to introducing her to her baby brother. The video is priceless. She has been so sweet and excited.

Hayden did great his first night at home. This was also the first night that we spent with him. He ate at 1 and slept till 6am. What a good baby. He has transitioned without any problem.

Thursday, March 5, 2009

NICU Day 10: Hayden is Coming Home

Today is a very exciting day. Hayden will be going home. Thank you to all the amazing doctors' and nurses for taking such wonderful care of our son. The NICU at Dell Children's Hospital is beautiful place. You don't feel like you are in a hospital. The spirit felt their is very warm and friendly. Angels are present in this place.

Yesterday Hayden had his MRI to scan his brain and spine. We will get the results today. He received a diamond star award (I just made that award up) for the first baby that they did not have to sedate during the spinal scan. He slept through the entire MRI, which was about a hour.

Also Adrienne and I were both able to coach each other and successfully pass his catheter.

Blessings to all and we give gratitude every day to our Father in Heaven for this miracle and the continued blessings that we are receiving.

Tuesday, March 3, 2009





Hayden's 1 Week Old

I can't believe it has already been one week since Hayden was born. He is doing very well and expect to go home soon. The only thing that is keeping Hayden in the NICU right now is our parent training on cathing him. Today we had the Spina Bifida Clinic Coordinator come to help us cath him and teach us how to do it at home. Tomorrow both of us have to be proficient at it. This isn't that easy as every NICU nurse has had trouble with it as he has a small opening at the valve to his bladder. He hasn't lost much weight with his surgeries and has been a great strong eater, great sleeper and rarely cries. What a blessed time it has been to spend all of this one on one time holding him without distractions thanks to Grandma Mary taking care of Hanna.

So far our days go something like this. Wake up at 3 & 6. Go to hospital after getting ready, cleaning room and breakfast. Feed Hayden at 7:30, stay there all day meeting with doctors, nurses and many specialist as they make rounds, eat lunch, back to the room to cath and feed Hayden, more meetings with specialist and training, eat dinner and return to the Ronald McD House around 9 or 10 and try and sleep by 11 or 12. The NICU seems like a time warp.

While at the RMH we met another LDS family by chance while we sat next to them over dinner. They have been here for 6 months of their son's 1 year old life. Today was his 1st birthday and they learned that he will need another serious surgery tomorrow. My heart goes out to them. It is hard being here seeing so many kids that are suffering. God bless all of the people that work on these special little children. My heart couldn't take it.

Monday, March 2, 2009

Hayden's Neurosurgeon's

Hayden's Continued Success

Hayden is continuing to progress very well. The team of surgeons met with him today and stated that both his lesion incision along with his shunt are healing very well and performing as it intends to. He loves to eat, sleep and just look around the room when he is up. After a 1 hour feeding with mom, who is snorring away right now, he basically goes to sleep in 3-4 hour increments. I stand amazed, once again.

Today I was able to go get the oil changed in the car, get a car wash and run some other errands in the nearby area. I guess that want everything to be perfect for this little guys first journey home.

We also just met with the Urologist and he will help us test whether or not he needs a cath or not short term. As he said, we will get to know him quite a bit over the next year. Honestly at this point this is the least of our worries with all the miracles that have taken place so far.

Continued blessings to all.
Scott and Adrienne

Sunday, March 1, 2009

Happy Parents, Happy Hayden, Happy Home





Hayden is Five Days Old

Last night Hayden was a little restless and really showed us his strength. He kept pulling out the binky as we tried to put him to sleep. Today he is feeding really well (~3oz per feeding). Adrienne right now is working with Debi, the lactation consultant, here at the NICU for techniques not to disturb his head or back. Hayden has a really strong jaw and and is nursing really well. Mom is doing a great job and all the work. Debi keeps saying he is such a strong guy and eater.

Dr. Lee, our Neurosurgeon, and the plastic surgeon visited us today and said that Hayden would probably get to go home in about 1-2 days. Far ahead of what we anticipated. He said that the brain scan looked good, his shunt was working well and the back incision was healing nicely. We will still need to meet with the urologist to see if we will need to cath him. Today was the first time that there was urine coming out of the catheter. Now we just need to see if that was a random time or if his bladder is not emptying fully on its own.

We think Hayden is ready to meet his big sister outside the incubator and be shown to the world. We are having trouble uploading pictures on the wireless connection, but he is looking great!

Today is a day we set aside to worship and praise our gracious Father in Heaven for sending his son Jesus to be our Savior. We have been so blessed. Hayden has proven what a special spirit he is, in that he started his mission of drawing people unto the Savior even before his birth. Hayden helped unite our friends and family in humble prayer in his behalf. In the 5 days since Hayden's arrival, we have been comforted by those prayers and witnessed His tender mercies.