Parkland NICU Nurses Rock!

>> Friday, July 31, 2009

As you have probably figured out by now, Stephanie and I couldn't be more pleased with the care Kamryn has received while at Parkland and Children's. Tonight, I wanted to blog about the incredible medical staff that saved our daughter's life. I truly believe that they influenced her survival tremendously and our end result may not have been the same had we chosen to deliver elsewhere.

The nursing staff in the Parkland NICU has literally blown us away. We expected that they would do their jobs and fulfill their responsibilities, but we never thought or expected that they would care for Kamryn like she was their own. Yes, the doctor's at Parkland and Children's are among the best anywhere and have so much knowledge and experience. They setup the strategies for Kamryn to pull through, but we truly credit the nursing staff with saving our daughter.

While we encountered nothing but excellence from all of the nursing staff in the NICU, there are four ladies that exceeded every expectation we had and have truly become our heroes. Kamryn has four primary nurses that not only cared for Kamryn, but for our entire family. I would like to introduce two of them to you tonight, and then the other two tomorrow night.

Monica was one of the first nurses we encountered as we started our journey and we both remember saying "Wow" after we saw her work with Kamryn - and with us :). We credit her with allowing us to actually sleep in the very beginning. Monica was quick to pick up on our situation with Hollie being scared and confused and I swear she was on a mission to not only care for Kamryn, but also for Hollie. I have shared many of the notes and pictures that 'Kamryn' sent to Hollie which allowed Hollie to write back and really feel involved in the whole situation. We have an entire scrapbook of those notes that Kamryn will treasure as she gets older. Monica quickly picked up on what put us at ease and she was always right there to make it better. For instance, it drove us crazy to see the saliva build up on Kamryn's lips due to the ventilator and honestly, this wasn't an issue medically. For Stef and I, it was huge because we just felt like it might make her uncomfortable. Monica tackled this with a passion and put up a note to other nurses that said "I like to be suctioned a lot". We never asked for this, but she knew it was important to us and therefore it became critical to her. Every time Monica was with Kamryn, she never 'just completed the job', but took every opportunity to make Kamryn's and our quality of life as good as possible. Monica, I hope you know how much Stef and I appreciate you and your compassion with our entire family. You have been nothing short of amazing. Here is our hero Monica with Kamryn (see her sporting Kamryn's CDH bracelet):

The next amazing nurse to enter our life at just the right time was Traci. Traci and Monica complimented each other so incredibly well. With Traci working days, we were able to spend much more time with her and Traci's mission was to not only learn Kamryn, but she was determined to learn about Stef and I and all our craziness. In a very short amount of time, Traci had us figured out which allowed her to anticipate EVERYTHING that was on our mind. She became our advocate during rounds and spoke on our behalf whether we asked her to or not. She knew what we wanted and was on a mission to get it. One of the greatest milestone's during this journey was to hold Kamryn for the first time. Kamryn was still hooked up to every tube possible and holding her would mean disconnecting the vent, moving the vent, having additional nursing staff there, and the list goes on and understandably, the doctor's weren't real excited about the idea. Traci knew it was important for Kamryn and for us and sure enough, she fought for it and got it. Traci is Stef's comfort in the NICU and the one she is drawn to whenever she had a question. Traci was not only a gifted nurse, but she became our friend and fellow advocate for Kamryn and we credit her, like Monica, for getting Kamryn through the setbacks and to a point where she is ready to come home. Traci, thank you for your friendship and being our partner through this journey. You are absolutely incredible! Here is another of our heroes, Traci:

We had a lot of choices when it came to where we would deliver and have Kamryn's care. We made the choice to deliver at Parkland because of the team approach, expertise in CDH, doctor's who were passionate about winning, and a dedicated resuscitation team. We had a gut feeling that this was the place that would give Kamryn the best chance of survival. We never could have imagined the role the nursing staff would play and that in the end, we would credit the Parkland NICU nursing staff so much with saving our daughter's life. To all the NICU nurses that we were blessed to have work with Kamryn, thank you. You all are amazing!

Tomorrow I will introduce you to two other superstars, Gretchen and Tamara.

Kamryn is still doing well and we are still looking at Monday to take her home! Just a few more days!

Take care,


Terri L. Helmick July 31, 2009 at 8:17 PM  

Hi Shawn I just read your post on Ava's blog. AND the sad new is kids DO reherniate and it happen alot. Don't let the doctors tell you this. It is SO wrong. When we left CHOP they said the chances were very low. His exact words were, "Watch her until she turns 18 months and then all should be okay." That was very bad advice. We even traveled 16 hours to Children's Hospital of Philadelphia one of the best cdh centers around. Plus in my experience with cdh parents there is ALOT of kids that not only reherniate once but 4 and 5 times. I don't want to scare you just make you aware you MUST watch for sign. Many signs. Let me know and I can send you Ava's signs. The docs told us she had not reherniated. They were wrong and Mommy was right. Stick with you gut instinct and you should be okay. Congratulations on how well everything has been going. If you need to talk I am here.


Tracy Meats July 31, 2009 at 9:47 PM  

It sounds like you have amazing care there in Texas!!! That is wonderful they took such good care of your princess and family and Kamryn is so close to coming home. One of Ian's primary nurses has become a life long friend, a bond that will last forever. Nurses do help work miracles.

I read Terri's comment above and do watch for reherniation symptoms. Whether a CDH baby has a patch or not, reherniation does occur. Even though many doctors say the chance is very small, it goes up a great deal when a patch is used. Kamryn will have a weak spot in the diaphragm too. At the CDH conference, there were many children there that have had reherniation surgeries. Also, another thing to watch for is bowel obstructions, just due to the nature of how our babies organs grew and then were repositioned during surgery. Not to scare you, just something to keep an eye out for. Always trust your gut instinct and it sounds like you are in good hands if a problem does arrive. However, I think Kamryn is going to just thrive at home!!

Have a great weekend!

kmm0305 July 31, 2009 at 10:02 PM  

What a wonderful tribute to your amazing nurses! It makes such a difference in care to have nurses that are so supportive, understanding, and proactive. It sounds like your family had a great experience with the medical staff.

Our daughter had a relatively short, "easy" NICU stay. She did come home with an NG tube/feeding pump for about a month, but no reflux and no major feeding issues. She did have a gross motor delay which was caught up by 2 years. No re-hospitalizations for illness, not even a cold her first winter. Imagine our surprise when she re-herniated on her 3rd birthday. You may always have that feeling of "what if this is related to her CDH" when little things come up--99% of the time the answer is probably no, but that 1% of the time you just have to listen to what you may think is going on and don't rest until you feel comfortable.


Jaime's World July 31, 2009 at 11:36 PM  

If we have learned anything having Jaime in the NICU for 93 days, we've learned that the NICU nurses LOVE their jobs! They are all so passionate and wonderful at what they do! We could not thank our primary nurses enough. We bought them pastries for Nurse's Week and lunch on our discharge day. Even those little things can not repay them for the what they did not only for Jaime, but for our entire family!
Glad you got to experience a great team, just as we have! They sure make the roller coaster much more tolerable.
Wishing you an uneventful weekend and a beautiful discharge day on Monday!
Love and prayers,

Chanda D Brady August 1, 2009 at 10:34 AM  

I can only pray that we have the amazing experience you guys have had from what seems to me, the start. What wonderful nurses. I am especially impressed with the attention to detail and care for Hollie as well.
So glad to hear that Monday your family will be returning to a "normal" life again. ....well, somewhat normal, I hope.
Love and prayers from Utah, Chanda

Anonymous August 1, 2009 at 11:40 AM  

Shawn and Stef,
Just watched the beautiful news video you posted. How special it was to see, and hear your voices. You are such a VERY special family, and you all deserve to enjoy you new happiness, in bringing Kamryn home. Your sincere compassion for others is to be commended. The updates you are posting about Baby Jackson, just shows the love and kindness that you reflect. may God continue to bless your beautiful family. You will all remain in my prayers. Thank you for letting us be a part of your journey. I was just blessed with a new grandson on the 28th, and after having lost his sister at 4 months of age, I am so grateful that we have this new little guy to bring us joy.

Many Hugs,
A Mom-Mom from NJ

The Adler's August 1, 2009 at 1:39 PM  


Very happy to hear Kamryn will be going home very soon. We have followed your journey from the start while going through our own at the same time with our son Carter. We have even communicated a few times earlier on.

Our only hope is that someday we can get those magic words too... "discharge" Carter is not having the best go of it after nearly 100 days...but seeing Kamryn struggle early on and then do so amazingly well is definitley inspiration as to how strong these babies can be.

Hope your transition home goes smoothly!

Jeremy & Carrie Adler

Sallie Mercer August 1, 2009 at 2:25 PM  

Oh my gosh... the news video gave me goosebumps. Praise God for all that is good and wonderful! Stephanie, what an amazing birthday you have in store for you! I think it's so wonderful that you've created this tribute to Kamryn's nurses. I have a feeling they love you all just as much as you love them. I was showing my husband the news video, and he said he used to love eating lunch at Anderson's BBQ, right across from the hospital. He took me there when we were in Dallas, so now I can visualize exactly where you've been all these weeks. Have a great weekend, and keep up the good work! Next week, a new chapter begins...


Rene August 1, 2009 at 3:21 PM  

Hello, I'm so happy to hear that Kamryn is doing better and will be discharged soon!

Nurses really are hero's aren't they? They really were so supportive during my son's life experience in the NICU.

If you want to learn about us, here is my angel Gregory's website.

Many blessings to you and your family.. I'll be keeping your daughter in my heart. She's a sweetie.

Love and peace.

Christina Jones - dpsg August 1, 2009 at 9:28 PM  

Nurses really do make a difference!! We have not experienced NICU nurses, but there have been a few times we have had extended stays in the ICU at Baylor Dallas - they become such an important part of your life while your loved ones are there and they really do determine whether you keep your sanity or not. I am so glad to hear that your family had such an amazing nursing staff and they helped yall out so much.
I saw the news clip - how awesome is that ?!?! Kamyrn is a big star already !! LOL
I hope everything works out for discharge on Monday - I am still pryaing for all of yall !!

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