In response to Lisa-Jo Baker's beautiful post: It's time to tell the truth about motherhood, I thought I might post some things that, as a preemie mama, I wish had been shared with me. Truth be told, I would love to be able to return to the days when our little man spent 69 days in the NICU after arriving at 27 weeks 2 days and share what hindsight has so lovingly revealed through time.
A few of these things were shared with me by my cousin, who was also a preemie mama, and for that I am eternally grateful. I say that to say this - it cannot hurt to hear the "realness" from more than one person during those days that you just are not sure you can continue down the path that God has chosen for you as a mother to a premature child. This is not meant to be an all inclusive list by any means - just a few things that may help….even if it is just one….
So - here goes:
1. Do NOT get comfortable!
a. Stats - like heart rate, oxygen levels, blood pressure, everything - can change in an instant - for the better or the worse.
b. Your baby could be moved to a new pod, bed, etc., while you are away - it could mean your baby is doing better, it could mean that the NICU has a lower or higher head count and need the space in the pod they were in the last time you visited. Roll with it - it will be okay.
2. If the nurses and other NICU staff aren't panicked - it does not help for you to panic.
2b. By the same token - if the nurses and other NICU staff are moving quickly around your child - stay out of their way and ask questions later. They will give you an update when they can - until then - pray and remember to breathe (after all, it will not help if you pass out - that will take the attention they need to devote to your baby and direct it to you….).
3. If you wake up in the middle of the night and wonder how your child is - call. If the NICU nurse is not in the middle of an urgent situation, they will gladly give you an update on your child - even if it is to assure you that your baby is sleeping soundly. If they are not available, be prepared for them to maybe give you an estimate of when you should check back. It is okay to ask - it may just give you the peace of mind you need so you can rest.
4. Rest, rest, rest - and - get more rest…..I know this seems selfish - but really - it isn't. While your child is being cared for in the NICU, it is best for you to rest as much as you possibly can. Now, you should know that my preemie was my first child - so I did not have other little ones at home that needed me to care for them. My point is mainly to say - if you can rest, do so. Worrying in the middle of the night will not change anything related to your baby or the care they are being given while they are in the NICU. However, lack of rest for you could lead to feeling overwhelmed with the updates and information you receive about your baby - which isn't healthy.
5. Know that you will probably not understand 1/2 of the information that you are given regarding your baby and the treatments or care they are being given - and that is OK! Ask questions of the doctors, nurses, respiratory therapists, etc. If you still do not understand everything - that is OK! Know that the staff of the NICU are normally the cream-of-the-crop and have studied and cared for premature babies for years. I will say - stay away from search engines to research medical terminology and procedures. If you are like me, your imagination runs wild with the overload of information that can be found on the internet. Playing the what-if game regarding your child and their health is never a good idea.
5b. However, by the time your child "graduates" from the NICU, you may feel that you could go to school and easily become a NICU nurse because you have heard some of the same terminology over and over again and you know more than you ever wanted to know! It is worth noting, though, that no matter how much you think you understand as time goes on - you still aren't the expert when it comes to medical "stuff". You do, however, know your child - so if you notice something is off or different - it is okay to ask or bring it to the attention of the staff. You will be involved in your child's care and ultimately will have the final say on some decisions, but know where the line is drawn.
6. Be as involved in the care of your child as you can be - when you are able to visit (and hopefully that will be often) change diapers if you are able to, take their temperature, assist with bath time, if your baby has graduated to being bottle fed - feed them a bottle, kangaroo care (holding skin-to-skin) as often as the nurses and doctors will allow it, read to your baby often. Always ask the nurses if it is okay for you to assist in these processes - but know that they are happy to see the parents involved in the care of their baby, so, if your baby is ready, the nurses will help you with these tasks until you get the hang of them.
7. There will be noises - alarms, oxygen machines, babies crying, phones ringing, etc., etc., etc., - oh, there will be noises - but - try hard to drown out as much as you can and enjoy the time you have when you visit your child. Cherish each moment and each new milestone, no matter how small - each minute is precious and worth celebrating! Believe me - I am a little OCD when it comes to noises - it is HARD to ignore everything going on around you in the NICU - but it is so worth the effort it takes to enjoy your precious miracle.
8. Don't be afraid to ask the nurses if there is a social worker (or similar position) on staff at the hospital. You want to speak to the social worker to find out if there are any programs that can assist you with care for your baby. I won't go into the options we were given here because they probably vary by state - but know that the social worker is an invaluable resource for preemie parents.
9. Be friendly to the nurses! Get to know them - remember that they are humans, too, and more than likely have spouses and/or kids at home. This means….they have bad days, too! Know that they will have days that they may have had a disagreement with a close friend or family member before they came to work. They may have a day where their tiny, precious patients have a hard day physically - and that is emotionally and physically draining for them, as well. They want every patient to be healthy and happy, and they want to be able to celebrate milestones with the families of the babies in their care -- but, they know that, unfortunately, sometimes life in the NICU isn't all sunshine and roses. The health of their patients impacts them - good or bad - so, if they aren't as bubbly with you as they were yesterday, or something else seems different- remember they are human.
10. Remember to take one day at a time - remember #1? - don't get comfortable. Take each day as a new day. Celebrate that gram gained today (yes, I said gram), because tomorrow, it and two others could be lost.
11. Trust God and leave it to Him! He knew that your child would be born prematurely. He knows the plan He has for your child. Your worry is not beneficial to anyone. Your plans pale in comparison with His. Know that, good or bad, He will carry you through it all. Give God the glory! He can turn this NICU/preemie test into a testimony!
12. Remember - it is okay to be real. You know the people in your life that you can be real with - they may not have been through what you are going through - but they listen if you need to talk and can cry with you when you just need a good cry. You will need at least of few of those "ugly cries" - you know the kind - throughout your child's stay in the NICU - and it is OK!
13. You will be scared. My son was born at 1 pound 13 ounces and 13 inches long. I was scared!! He was SO little - I felt like if I touched him, he would just fall apart. But, you know what, he didn't. And your child won't either. It is daunting to see your child with tubes, c-pap masks, and everything else that is attached to them, but remember, beneath all of the equipment is your baby. Your precious miracle. Of course, follow doctors nurses orders on touch times, holding, and such - but know that you will not break your child. Preemies may be little - but they pack a lot of fight in their little bodies! It is okay to be scared - but, observe how the nurses interact with your child, and follow their lead if they give the approval - after all, they have tiny patients every day.
14. You will continue to grieve the loss of feeling your baby during the last few days, weeks, or months of pregnancy. You will continue to wish that those beautiful maternity photos of your friends could be yours. You will continue to wonder if you did something to cause the premature birth of your baby. You will continue to wonder if your child's development is where it should be for his adjusted age. You will continue to wonder if you will ever be able to carry a pregnancy to full term.
you will continue to have all these thoughts and many more…
I wish I could tell you that these thought stop - but, for me - my son is now 17 months actual / 14 months adjusted - and I STILL continue to have these thoughts….and you know what?! It is OK - you are normal for having these thoughts….. (see the following: What Being a Preemie Mom Means)
Just remember to enjoy the little things - celebrate every day and every new accomplishment, no matter how small! Our preemies might be pint sized, but they are still bundles of fight and energy!
(Again, this list is not meant to be all inclusive, and I know that every preemie's experience in the NICU is different. Please know I do not mean to diminish the pain and hurt that many go through with their preemies and in the NICU in any way. I simply write from my experience - for that is all I know how to do.)
What would you be real about as a preemie mama?