Tuesday, July 19, 2011

My story as a preemie mom

I've been wanting to write about my experience with having a preemie in the special care nursery for quite a while now, but having 2 little ones at home, I haven't been able to catch enough brain power to write about it. :)  This is meant to encourage other moms who may find themselves in this situation unplanned.  I'll put out a warning that there is going to be some breastfeeding info going down in this post, so if that does not apply to you, feel free to skip it!  I am by no means an expert, but I do think I learned a few lessons that could be helpful to someone else in my place.

The story:
When my son was born at 35+ weeks, I figured he'd have a lengthier hospital stay and perhaps be put in a special nursery.  Since I delivered at a hospital without a NICU, I was praying that he wouldn't move to the children's hospital downtown, and thankfully the Lord answered that prayer!  My hospital did have a special care nursery, however, and babies taken there are obviously guarded more rigorously, but not having been in that situation, I did not know what the set up would be.  He had to stay in the SCN and I could come to visit him there, but he was not able to come to my room with me.  After my c-section I held him and nursed him in recovery, and then he was admitted to the SCN.  My husband walked down to see him later that night since I could not go in my big bed since it was during a shift change.  I told my nurse that I'd like to go down as soon as I was allowed out of bed the next morning (like at 4am), so that is what we did.  I was still hooked up like crazy, and pushed in a wheelchair, but the aide cheerfully took me down to see my baby.  He had an NG tube down his nose where he was given formula, and the nurse caring for him was about to give him a bottle.  

Let me interject here that I do not think poorly of those nurses.  I LOVED most of our nurses!!

 This young nurse briskly told me that after I had been there for a while she would show me how to do the bottle. . . I was aghast!  In my foggy early morning state of mind, sitting there watching my tiny baby, I felt sure that something must be wrong with him and that was why they weren't letting me nurse him again.  Out of fear to hear bad news I shied away from asking to nurse him, which I see now was completely foolish!  This same nurse told us that most babies in the SCN stayed until their due dates.  We were dumbfounded.  We assumed that since he wasn't on oxygen, we'd be ok MUCH sooner than that!  This experience leads me to

Lesson #1 -- Many nurses are wonderful, but get the info from the neonatologist.

We were blessed with some amazing and kind neonatologists.  I immediately got a completely different vibe when Dr. Obi assessed my baby and spoke with me (a few hours later).  She assured me he was fine, just small, and that she was going to order some tests to rule out possible problems.  She was thrilled at his ability to nurse (a refrain I never tired of hearing, but heard quite a bit over the next week) and was incredibly pro-breastfeeding.  She encouraged me to do kangaroo care and come to the SCN when he was going to have his feedings through the NG tube so that he could "nurse" at the same time and get the sucking/getting full belly sensation.  She even wrote that into his orders (which I overheard) so I could refer to it when other nurses were present.  Many of our nurses were pro-breastfeeding/kangaroo care, but every few shifts someone would cycle in that gave this mom the feeling that I was in the way.  They may try to talk me into skipping a feeding (true, it was a hassle for them to have me stumble in every few hours and need screens set up around me so I could nurse) or question why I was trying to take him to the breast since he was early (apparently preemie boys have a bad reputation of being poor nursers).  Since I had connected with my neonatologist, I was able to gently but firmly establish my plans for teaching my baby to be exclusively breast fed.  
I could go on and on about Dr. Obi and the other neonatologists I encountered.  They were simply wonderful, and I see God's hand in giving them to me!  I also have a friend who works in SCN (though she was off the week Chip was born) who gave me the 411 on the other people who worked there!  It was great to have that insight!  However, I know that might not be a possibility for other people, so I want to share another lesson I learned:

Lesson #2 -- embrace the lactation consultants, because they are in your corner!

When so many people are telling you what to do, it's natural to sort of avoid more input, but do not skip over this one!  I probably met every LC that worked at my hospital because when I was asked if I wanted to lactation to come by I always said yes, if they were available.  Everyone has different personalities and it's likely you won't just click with everyone, but those ladies were extremely helpful to me.  They made my seats comfortable, got me drinks and pillows, and most importantly, they were my cheerleaders.  I knew we shared a goal in getting to exclusive breastfeeding, so I could depend on their help!  Here are some tips I got from them:
  • pump, even when you don't feel like it, especially right after holding your preemie.  It's a hassle but it will help your milk come in. (I HATED pumping, I wanted my baby instead!  But DO IT!)
  • call them to help you and don't be afraid you are interrupting.  
  • proper holding of baby and breast to make latching work (esp. helpful if you are a 1st time nursing mom)
  • let people take care of you so you can rest.
  • ways to wake up your sleepy preemie:  wet wipes on bare skin (ohhhhhh!!), pumping little arms, rubbing under chin when he pauses eating, or just holding skin to skin for a while.   
Since I had already successfully breastfed my first baby, I felt just a bit more confident about asserting myself when it was time for a feeding, but in such an emotional time, you need someone in your corner, and the lactation consultants are great for that!  

Lesson 3 -- be winsome, but make your baby your priority, not having everyone like you.
I wanted all of Chip's nurses to like me so they didn't groan to see me coming every hour or two.  I tried to be conversational and complimentary to them -- those were some hard working ladies and many of them appreciated conversation with a mom in the middle of the night (esp. since there was often only one nurse working in the SCN during our time there).  However, I learned the hard way that that was not my greatest priority.  One day I left the SCN after chatting with the nurse about her hair color, and feeling like she really liked meLater when I returned, a new nurse was working (Teresa) and told me that Chip's feeding schedule changed because that nurse gave him a supplement of formula through his NG tube about an hour after I'd left.  I was totally dismayed, and expressed to Teresa that I wished she would have called me to come back and feed him again if she thought he was hungry!  I had started storing up a bit of breastmilk that I wanted him to have, but for whatever reason, she didn't use it!  I guess I'd hoped that since she liked me then she would automatically be super pro-breastfeeding mom, but I didn't exactly spell out my wishes to her either, so it was just as much my fault.  Teresa and I were much better at communicating, and she was fantastic about calling me as soon as Chip started to act hungry, even if it were a bit early for his scheduled feeding.  This was as close to "on-demand feeding" I could get in this situation, and I was very thankful for it!  After that night when a sweet sister from my church cared for Chip, and called me when he acted hungry not an hour after I'd left, we turned a corner.  He gained a few ounces every day, and best of all they removed his NG tube!  

Lesson #4 -- Trust the Lord for He IS good.
Many people will tell you that life with a preemie is a roller coaster.  You get all excited as they do very well, but then devastated with a set back.  Certainly postpartum emotions and hormones play into this roller coaster experience as well!  You absolutely must continually reaffirm in your mind that God is good and he is caring both for you and for your tiny one.  He gives life and breath and all things.  Steep your mind in Scripture, maybe even just one passage that you can read over and over and embrace.  Or listen to good songs that will comfort your heart.  For me, the song "Oh the Deep Deep Love of Jesus" by Sovereign Grace was an immense encouragement.  I played it over and over on my MP3 player, and then when the batteries died on it (probably because I'd fall asleep listening to it), I just hit replay over and over on the YouTube video.  The last few days of our hospital stay Chip had a less than helpful nurse that enjoyed giving me news in a way that made it seem like more of a dire situation than it was.  Right after I was allowed to have Chip come to my room, he "desatted" in the early morning hours and I had to keep him hooked up to a monitor when he was with me even.  This meant I couldn't sleep with him in the room because it made noises on a consistent basis and frequently sounded false alarms (so scary!).  It was such a blow to have this happen when things were going so well, and you can imagine I cried many tears to the Lord at that time!  But my faith was rock solid in the Lord's goodness to us -- sometimes you must fight for that faith!  

I'm sure there are many other people out there who have experienced far worse situations and have stories to tell, but this is mine.  I hope someone is encouraged by it, and I'd love to pray for you or help you with any insight I may have!