What I Wish I Had Known Before Having a Preemie

I talked to a long time admired friend and loved one today (Steve). He had a grandson born yesterday that was 23 weeks gestation - similarly to Charly. Talking to Steve brought back so many emotions of that scary, very unknown first few days of Charly's life. I have thought a lot about my experience, and what I wish I could do or say to help his family get through their ordeal. I also thought about what I wish I had known before having a preemie. Here is what I came up with for now (and trust me..I am no expert - I am still in the middle of my journey). VanBibber family - My thoughts, prayers, and love are with you!

1) Celebrate the baby - With all of the uncertainty, it's hard to know what to do and how to react to having a premature baby. People don't generally know what to do. Most of them won't want to bring flowers because it might indicate sorrow, or a potential death. Some won't want to bring baby clothes because the baby's future is so uncertain. Everyone wants you to feel loved, and nobody wants to do anything that would even possibly offend or hurt you. Almost everyone won't know what to do or say, other than "I love you", and some won't do anything at all (and that's okay too). For me...I longed to celebrate the birth of my baby. I wanted to be able to live in NICU land and baby land at the same time. I appreciated those that brought baby gifts to celebrate, and flowers to remind me of the joy of life. In my opinion both of those are acceptable. It's okay to tell people you want to celebrate your baby, and the wonderful birth that has taken place. What is happening is definitely shocking, but it is NOT TERRIBLE. Things will be okay, no matter what happens - so celebrate your baby! (Preemie clothes are always needed at the NICU regardless if your baby wears them or not...it makes a great gift. Other things like a breast feeding cover up, books, bottle sterilizer (for pumping parts), and photography supplies are great gifts too).

2) Begin pumping right away - When the nurse brought in the pumping kit a few hours after Charly was born...I have to admit I thought to myself "why, why would I want to pump if my baby dies? Should I even pump? What should I do?" Well, the fact of the matter is - the road that you are on...is TOTALLY unknown. You are living your own pioneer experience. Nobody knows exactly what this road will bring for you. You will need something to do...something to make you feel like you are helping your baby, and at this point...pumping might be the only thing that you can do (not only to help your baby, but to give you a job to do). Additionally, you will become familiar with the term NEC (A gastrointestinal disease that affects mostly premature infants, necrotizing enterocolitis (NEC) can be extremely frightening for new parents). From everything that I have heard, and read in the NICU...breast milk is best for preemies. If you get milk...great...if you struggle (believe me...I have struggled) keep working at it...if you just can't - then move on...don't beat yourself up about it. Just do your best. Your breast milk can also be donated, so keep that in mind also.

3) Keep a record - As you know...I started this blog. It's not completely chuck full of medical documentation, nor is it worthy of the New York Times best selling list...but it's mine. You will need somewhere to vent, to cry, to celebrate, to ask for help, and to share (what you feel is appropriate) with all of those that care for you. In the first few days of having Charly - my cell phone messages were full, my text box was overloaded, and I felt overwhelmed by all the love, support, and concern that people had for me. I went to the hospital to "get checked" feeling sure "nothing was wrong" and that I would be home in a jiffy! Little did I know? I was NOT prepared. My suitcase was not packed; I didn't even have my cell phone with me! The bottom line is.. I simply could not recover from a C-Section, be in the NICU, and communicate to everyone what was happening at the same time. This blog has been a wonderful outlet for me to share, to cry, and to show everyone how thankful I am...at the same time...selfishly, it has given me time to recover, to cope, and to move forward without feeling pressure to call everyone in the world.

4) Take LOTS of pictures - It's okay that your baby is under a piece of plastic. It's still your baby. However you chose to cope with what is happening...will eventually work out. You may want to look back on the pictures and remember your sweet little baby. Your baby may be on ventilator support, it may need extra assistance, but it's still your baby, and it's okay to take pictures.

5) Take time to recover - You may be in the NICU for a long time. Days seem like months, and months turn into what feels like years. You can't live or die by the monitors, and you can't base how you are feeling that day...upon how your baby is doing. Try and stay positive...no matter what news you may receive. Take the appropriate time to heal (emotionally and physically). Let the Dr's and Nurses care for your baby while you sleep. I have spent many days (I still am) in a constant state of sleep deprivation. When you have a "regular" baby...they tell you to "sleep when the baby sleeps"...but when you have a baby in the NICU...what do you do? You pump every 2-3 hours and you sleep in between...just like you would when you have a new baby at home. This is something I wish I would have done from the beginning.

6) Ask for help - or if you can't - have someone you know read this blog! My ward was so sweet that they had meals set up for us for weeks. We scheduled a set time to be home in the evening (no matter what) and for the most part...we stuck to it. You will need at least 2 weeks of meals brought in (otherwise you won't eat at all...it's too easy to just stay at the hospital and worry, and not eat because you are worried. You need to eat. Your pumping habits will be improved with food in your system...I know, what a shock). Many people will be asking what you need, or if they can do this or that for you. If you're like me...you're first response is to say "we're fine"...but YOU ARE NOT FINE. You will need help, and sooner is better than later at learning this, because this will be a LONG JOURNEY. If someone wants to clean for you...let them. If dinner or pizza is brought over...thank them. Get used to having help, and know that those helping are being blessed in your behalf. I can't even begin to explain the thankfulness in my heart for those who have helped us, and continue to help us get through our NICU journey!

7) At some point - you could possibly be asked if you want to "withdraw" on your baby. This is a touchy subject for me, and we all have our own opinions and divine answers when it comes to knowing what to do with our own children. There is no right or wrong answer here. Use your judgment, faith, and prayer to decide what is right for your baby. Not matter what decision you make...you will be the one to live with it. This is a very hard question to ask, and an even harder question to face. Having a baby so early puts so much on yourself, and watching what your little one endures can be heart-wrenching (to say the least). I am thankful for my faith and belief in life after this life, and know that regardless of the outcome...I will be with my children for eternity (if I live my life correctly). I can tell you that I have not regretted for one minute to leave Charly on life support, and continue to pray for her good outcome. I also know that I had received my answer clearly, firmly, and have followed the priesthood direction that Charly and I have received.

8) Have HOPE - I can remember after Charly's delivery...that I hoped she would even be alive. Then, I found myself hoping that she would live the night, and then hoping she would live the week...the month...and so on. I have hoped that she would thrive, that she would be as close to normal as possible (as these babies are subject to many life altering disabilities). I am only just over two months into my NICU Preemie journey, and I continue to HOPE for Charly. It doesn't mean that everything has gone perfectly, or that we haven't experienced some very grim scary days already...but we became educated. We became aware of the "worst" that could happen (death, total disability, etc), and we HOPE for the best. Things don't always turn out the way you expect them, but they are easier to handle when you have hope.

9) You are Chosen - I have a firm belief that babies who are born preemies (or face other challenges or disabilities) have a special callings in life. They have been "protected" and have been sent to you for a reason. They need you, and you need them. You have special qualities that will develop through this journey. I also believe that these sweet little babies are sent to us in these last days for a purpose - a divine purpose in which we can't fully understand. They are special spirits who fight to live, for their purpose, and to help you fulfill yours.

10) Increase your faith - I am a member of the Church of Jesus Christ of Latter Day Saints (a Mormon). I have been given some choice experiences and have learned for myself that there is life after death. I know that there are people on the other side of the veil that are there to help us, to guide us, and to walk difficult paths with us. I also have gained a greater testimony in the Savior, Jesus Christ. I know that he lives - that he loves us. I know without a doubt that he suffered for the sins of the world, and has been resurrected. He is perfect. He has been my closest friend through this journey with Charly, and I am so ever thankful for his love for me and for her. I am so thankful that John and I were married and sealed in the temple - so that we can have a forever family if we live, serve, and do according to his will for us. I am a better person for going through this NICU journey, and feel so blessed to have little Charly (whether she is in my arms...or in her isolette at Primary's). I also know that in seeking out the Saviors "Robe" for a cure...that Charly will eventually touch the robe, or he will gently wrap Charly in it when she goes. I encourage you to find your faith, your beliefs, and strengthen your testimony. I know that everyday is a test for us...and it will continue to be.