Tuesday, March 13, 2012

Our rules for NICU - March Carnival


Welcome to the March 2012 Carnival of Natural Parenting: Parenting With Special Needs
This post was written for inclusion in the monthly Carnival of Natural Parenting hosted by Hobo Mama and Code Name: Mama. This month our participants have shared how we parent despite and because of challenges thrown our way. Please read to the end to find a list of links to the other carnival participants.

March's topic for the Carnival of Natural Parenting is: Parenting With Special Needs.
Hannabert was a NICU baby.
Some people were disturbed by this picture
While pregnant, I was diagnosed as having gestational diabetes.  Whether or not I really had it is a little debatable (passed the 3 hr test with flying colors but my AM fasting blood sugars were "high" for a pregnant lady although my A1C was normal...).  I followed a strict diet and took mediation daily to keep my blood sugars intact.  


I was induced (at risk for a large baby!) and eventually opted to have an epidural (rather, 3 epidurals as the first two didn't work).  As a result of the third epidural, I went into respiratory distress but Hannabert, he was a champ.  His vitals never waivered. I was wheeled into the operating room because they were concerned about me and they wanted to be prepared.  


As I faded in and out of consciousness, I remember my ob saying, "there is no need to section her, the baby is great!"  I stabilized and was brought back to my room to continue to labor.  Unfortunately, Hannabert got stuck and I then needed a c-section.  My ob didn't want to risk another loss of respiratory functions again so I elected to have him under general.


He was born at a perfectly normal 7lbs 6oz but his blood sugar kept dropping.  He served time for low blood sugar.  Horn told me that they tested his blood sugar at birth and it was 50 mg/dL and then it dropped to about 20 mg/dl.  He was given 2oz of glucose and 2oz of formula (chowed through both apparently) but he was unable to maintain "normal" blood sugar levels. 


Soon after I was in recovery (couldn't hold him because I was shaking), the decision was made to move him to NICU for additional observations.
One of the photos of Hannabert in NICU - the blanket is covering his  IV.  This is before his feeding tube.
I didn't get to see him for another 14 hours.  When I was finally wheeled into his room, the nursing staff was inserting another IV into his arm (he ended up with three:  he pulled on out, chewed on off, and the last one started to leak). It wasn't the best way to really meet my child...of course it was much better than walking in on them trying to insert a gavage tube the next day...


Hannabert is the first grandchild for both of our parents and needless to say, there was a quite a bit of excitement surrounding his arrival.  Unfortunately for everyone, no one was expecting any sort of complications.  Hopefully when we have our next child, we won't have to experience NICU again but if we do, we will be issuing (at the minimum) the follow rules to friends/family:


1) Don't ask either either one of use to make any decisions that do not concern the immediate medical needs our child is facing.  Ex of an inappropriate question:  Who will his Godmother be? (Yes, Horn was asked his while I still was recovering from general anesthesia).


2) Don't be offended if we do not want to visit with unexpected guests; our concern is spending time with our child and overseeing his medical treatment.  (Further, don't be offended if we really don't want to entertain any guests at all.)


3) Establishing breastfeeding is extremely important for a child in NICU.  My (or Mom's) breasts will be available at anytime for our child.  Your sense of modesty does not matter to us; our child's health matters to us.


4) Be specific with your offers of assistance; we don't necessary know how to respond to offers of help.  Suggest taking our car to get the car seat installed/checked; Offer to go to our house and stock our fridge, wash our dishes, or do a load of laundry; Bring in snacks for us or our nurses.


5)  Pray and/or keep us and our child in your thoughts.  If appropriate (and after talking to us) contact our minister/congregation/church and ask that they also pray.  While this might not feel like much, it helps to know we have people rooting for us.


6) Please don't ask us to constantly relive our child's NICU stay (or what might have been a very scary birth which led to the NICU stay).  We are thankful to the nurses, doctors, and respiratory staff that worked with our child.  We are well aware of how scary the situation was. 

Hannabert's first night out of NICU


While Hannabert was only in NICU for only days, it was emotionally exhausting for all of us.  


My parents were here from North Carolina.  They were expecting to spend time bonding with Hannabert, not taking turns, escorted by one of us, to look at him in a bassinet.  When I mentioned to the nurses that my parents hadn't even seen his eyes (he literally slept all the time), they took pictures of him with his eyes open for them.  They never actually saw him awake the entire time they were in Ohio for his birth.  


Horn's mom was over the moon at being a grandma and wanted to spend time with him in NICU.  We were only allowed 3 people at a time in his room which meant we had to make decisions as to who got to go when and how long.  The juggling act wasn't fund and some feelings were hurt. That was, and still is, perfectly fine by me.  


Luckily, he has been a pretty healthy guy since he was released from the hospital but I know that few rules that we developed from our NICU stay will follow us for all future sicknesses. 


To all of those parents that have a child with ongoing special needs, you are my heroes. 

***
Carnival of Natural Parenting -- Hobo Mama and Code Name: MamaVisit Hobo Mama and Code Name: Mama to find out how you can participate in the next Carnival of Natural Parenting!
Please take time to read the submissions by the other carnival participants:
(This list will be live and updated by afternoon March 13 with all the carnival links.)

7 comments:

  1. Your rules bring back memories of all the stupid things people said during my son's first days...the in-laws who wanted me to stay awake and talk to them while on magnesium, the great-grandmother who's first question was about what our plans were for a baptism, the people who thought the NICU's rules were "wrong."

    It's such a hard place to be, in the midst of so many urgent and unexpected things, and I think most people just don't have any clue of what to do.

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  2. It is truly amazing how people seem to have such little regard for the parents at a time like this. I hope that others can learn from your suggestions and you never have to use them again yourself!

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  3. Oh, wow, you really had to deal with some unneeded stress at such a stressful time already. I really love your rules and hope other families and friends take them to heart to make someone else's NICU stay a little lighter. So happy for you that you and Hannabert ended up healthy after such a frightening start.

    I'm just curious, why would anyone be disturbed at that first picture? I appreciate having momentous occasions documented, and I love how you're mirroring each other.

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  4. For whatever reason, I can't reply individually so here it goes:
    Kadiera - the best part was that my husband and I hadn't really talked about the Baptism yet and his family basically sat him down and used the "you are selecting X, right?" Indepedently of each other, we both baptized Hannabert in NICU.

    Brenna: we hope the same!

    Lauren: I was unconcious at the time so "some" people thought it was inappropriate to have a picture like that. My husband also took a picture of Hannabert's arrival (yep, you can see me wide open). Horn had initially posted it online for people to see and a number of people called him and "for my sake" asked him to remove it. I appreciated him taking the picture and it doesn't bother me but I really disliked the fact that others felt like they knew me enough to make request for to to MY HUSBAND (who probably knows me better than I know myself.).

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  5. Thank you for sharing your NICU rules, Hannah! Our newborn son requires extra medical attention — possibly even surgery — and your rules reinforce what my gut tells me is so.

    Also, that last photo is especially darling. Beautiful, beautiful eyes on your little one!

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  7. Hi Rachel - I think following your instincts are the most important part when you have a child in NICU. My prayers are with the doctors as they examine your little one. Keep strong mama!

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