Preemies & your personal NICU Experience... - Page 2

[Zangua]

My daughter was born at 34.5 weeks. I was planning a home birth, so when my water broke early I was in deep conflict about what to do. I decided to stay home because I have worked in hospitals before and knew that if I went to the hospital she would be immediately whisked into NICU and probably kept there just based on her gestational age. My midwives agreed to support me (I am also a midwife). I knew that chances were she would be absolutely fine and trusted that if she was not, we could transport. The birth was fast and she was fine- 5lbs 11oz, came out crying, latched right away, etc.

But, she lost a full lb in the first week and despite vigorous breastfeeding and exposure to sunlight, she developed severe jaundice. So at 7 days old we had to bring her in to the NICU to be under the bilirubin lights. The experience was horrendous from start to finish. We went to the hospital that my pediatrician has privileges at, instead of the one with the best NICU- so this was mistake number one. We should have just walked into the ER at the better hospital. Anyway our NICU stay went like this:

1. When we walked in they brought her into the back, wouldn't let me go with her, and gave her an umbilical line without my permission because they thought they 'might' need to do a full blood transfusion. I understand that it gets harder and harder to put in and was basically a miracle that they got it in at all at 7 days old, but I would have preferred to put her under the lights for 5 hours and then retest her bilirubin to see if it was going down enough to avoid a transfusion- which is exactly what happened. Her numbers went down steadily and she never needed the transfusion.

2. The NICU did not have CHAIRS in it for parents to sit in. Nor did they have a waiting room. They simply had a few chairs in the vending machine room down the hall. So there I was, 7 days post partum having to stand for hours on end and my mother was sleeping on a chair next to the pop machine.  I was the only parent who refused to leave the room when visiting hour (singular) was over, so the nurses hated me, but I really didn't care. I felt like if my baby was going to experience this trauma, I needed to at least be there with my voice and smell as a constant presence. We had already had a week of breastfeeding and cuddling under our belts. I stood for 12 hours the first day that she was there. That is just cruel. One of the nurses asked why I didn't just go home and sleep and I explained that I felt my presence and constant touch (albeit one hand through the incubator) was comforting for her and crucial to attachment in this early phase. The nurse said "you don't actually think she knows you are here or can hear you and recognize your voice, do you?"... uh, she has jaundice, not deafness. At that point they called in some random midwives from the L&D floor to try to coerce me to come hang with them- anything to get me out of there so they could talk shit about the patients/parents in peace, which is what they did with me in the room anyway.

3. While pumping was encouraged, I was not allowed to breastfeed. Ridiculous. She wasn't hooked up to any machines other than the lights so they could have just shone the light on her while she nursed but they were not having it. Not that I could have breastfed- there were no chairs! I remember one day I walked into the pump room (basically a closet with a curtain) and the pump wouldn't turn on. I popped my head out to the nurses station to ask for help and the nurse said verbatim "Even if I wanted to help you, I wouldn't know how".

4. After my making a fuss about the umbilical line being placed unecessarely and without consent, the doctor tried to convince me that the up side of the line was that they wouldn't need to do a heel stick every time they had to take her blood (every 4 hours)- so she would be spared a bunch of needles. This was comforting until the nurses started coming in and sticking her heel. When I asked them to use the line since that is what it was there for, they said they were told not to use it because it increased risk of infection. I asked that they then remove the line, but they refused. So basically everyone was full of BS and everyone hated me because I was the only parent who questioned what they were doing to my baby and attempted to advocate for her. I felt like everyone else was just in too much shock and did whatever the doctors told them too because they just wanted their babies to be ok.

5. Her numbers went rapidly down. By day two they were at a reasonable/normal infant level. By day three they took her off the lights. They wanted to keep her in the hospital another day so that they could observe her and make sure her numbers continued to go down. I requested that since her numbers were low and they weren't going to test again for 10 hours, they let me bring her home where I could breastfeed and hold her and I would bring her back they next morning so they could retest her. To me this seemed perfectly logical- but the doctor refused to sign off on it because once they discharge her I couldn't bring her back into the NICU for testing. I told them I would bring her to my pediatrician for testing, or outpatient or ANYwhere, just let me hold and feed my baby and get some sleep! I had been awake for 3 days and standing basically the whole time at a week post-partum. The doc refused, so after consulting with my pediatrician and my sister who is an internist who both thought it was insane that they were holding her, I decided to take her out AMA. Apparently this is against hospital policy, so they told me if I took her they would call the police and child protective services on me. They then literally locked me out of the NICU saying there might be a fire drill and I couldn't be in there if there was. WTF???

This really set me into a post partum, hormonal, mama bear rage. I called a friend who is a lawyer and she got in her car to come down. I called a friend who is the editor for one of the cities largest newspapers to come down and write a story on how this NICU was completely un-mother/baby friendly. I called a friend from medical school who is the head of child protective services for the city to come down, so that when I walked my baby out they couldn't threaten to illegally arrest me (it's not state law that you can't sign a baby out AMA, just hospital policy) or call cps, because they were already there.

So when these three people walked into the NICU, the doctor immediately signed her out and made arrangements for me to bring her in the next morning for retesting. I was followed out of the hospital by some super apologetic administrators who kept saying "we can't have a newspaper article about this".

We went home, got skin to skin, nursed to sleep, and came back in the morning to retest and her numbers were great. She had an umbilical hernia as a result of the line for several months, but it eventually went in. I think in the end, I was way more traumatized than she was.

[CGsMom]

I am sure you have already had to turn in your paper by now, but thought I would respond anyway.  My DD was born at 27 weeks and was in the NICU for 11 weeks.  My biggest issue was continuity of care.  We were there long enough that by the end of her stay, we had primary coverage for most of the time, but in the beginning, we saw new nurse after new nurse and it was frustrating.  The best nurses were the ones that realized that my DH and I were there everyday and that our information was reliable (like when her new feeding orders were transcribed incorrectly).  The worst nurses most assuredly went out of their way to prove they knew what was best over some lowly parent.  I came to blows with at least two nurses and had them removed from my daughters service because of this type of behavior.  In both cases, a simple call to the Attending would have cleared up the problem, which I suggested and the nurses in both cases refused. 

The attachment process was difficult for me.  I felt like I wasn't doing enough, I am sure there was some level of depression at work, and I was absolutely exhausted.  After day 10, when the humidity was turned down and we were able to hold her, we had one of the best nurses working with us that day.  She was so excited that we were going to hold DD and that made me excited.  Her enthusiasm may or may not have been genuine, but she could see I was in need of a boost and she took it upon herself to give it to me.  She let me hold her a bit longer than the prescribed time because all of DD's stats were holding fine or improved and she kept a watchful eye from a distance and let me have that time with her and my DH.

Overall, my NICU experience was pretty special.  We are 10 months removed from discharge and I can see now that I was changed for the better.  It was trying, difficult, exhausting, terrifying, and by no means a picnic, but we pulled together and made it through.  My marriage is stronger, I am stronger, and my DD is most certainly the beneficiary of that.   I remain close with several of the nurses and doctors, along with some support staff.  I send emails with pictures and updates of DD and occasionally we stop by the NICU to say hello and show off :)

Things are what you make it, this is true for parents AND nurses.

[BellaBearsMommy]

I am glad to find out that I am not the only one who felt "not connected" with my baby.  I am a mom of a 23 weeker who was in the NICU for 4 months and 1 week.  They all looked at me crazy when she was getting discharged and I told them I didnt feel connected to her.  It is getting better now.  I didnt get to kangaroo with her often because she was on the high frequency oscillator for 2 and a half months.  Even afterwards I could only hold her for an hour and it seemed like a big process to take her out of her isolette.  I dont know if that had anything to do with it but it could also be the fact that I didnt cary her for very long.

[maburket]

I am still in the NICU experience.  My daughter was born at 28 weeks gestation and she is 36w 1 day today.  She is moving forward.  She has no more tubes and she eats from a bottle, she just needs to be desat free for three days and we can bring her home.

The first time we did Kangaroo care was very special.

The nurse that bundled her so she could hold her own paci was great.

The time the nurse sicked lactation on me because I was crying next to the isolette when my milk had dried up ticked me off because duh of course I had already tried everything and had talked to lactaion a million times.

We moved her to a smaller hospital closer to home where they each get their own room.  It has been great.

Until today when the nurse wouldn't even let me help bathe her (I have done solo baths the last three times).  Then took over feeding her twice when I really do know better.  And when I did need something from her she hadn't even written her name and number on the board so I knew who to call.  Then when I was upset she told me that if I was stressed out I could just call for an update instead of coming in everyday.

I know I am stressed but I need to be with her everyday and she needs me there.  I do feel bonded to her I feel like I physically need to be with her.  I sometimes get frustrated that I can't do anything to help her sometimes I get angry because the nurses act like I don't know anything.

Today I did call the charge nurse.  I hope to never see that nurse again.

[Mrs. MAT]

Our first day in the NICU a nurse told us how much she loves taking care of her babies.  That really says it all -- parents didn't seem to have a role there.  The babies didn't belong to the families - they belonged to the nurses. It was very frustrating because we had a healthy preemie.  We slipped through the cracks.  They didn't get around to writing a care plan for her until the 3rd day.   Every time we went in, a nurse would tell us something different.  The day nurses always seemed to want us to leave.  Night nurses seemed to like us there - we were the only parents who were ever there and they seemed to enjoy the company.

The hospital told us that we would have to accept leaving our baby there and go home.  I told them that I was staying as long as my child was in the hospital and refused to leave.  We knew our stay was short term - it ended up being one week.  Our preemie was a 35 weeker with an apgar score of 9.  They deducted a point for oxygen, then decided that it hadn't been necessary.  She was rolling over in the NICU.  To be honest, the only reason we were there was her weight - 4 lbs.  In another hospital, they would have had us room in, breastfeed (and pump if necessary) and kept us longer until our daughter gained weight.  I knew that she didn't need to be there, but they made us so scared.  She never had a single spell or episode, yet they enforced their standard policies around feeding and how long we were allowed to hold her/be there.  It was really hard to look at her in the crib and know that she wasn't being held and cuddled the way newborns are designed to be.

Lactation refused to work with us because we were in the NICU and NICU wanted us to pump and bottle.  No one supported breastfeeding (which should have been possible to try at 35 weeks).

I ended up having an intense amount of resentment towards the hospital and the NICU.  The communication was abysmal and I felt like I had to constantly fight for everything - when I was recovering from giving birth.  I didn't feel like they were helping me or my daughter.  I felt like they were separating us. 

If I could do it again, the first thing I would choose is a different hospital!  I would demand meetings with a nurse supervisors and doctors on day one.  Setting up communication and understanding the policies and what could be done differently in my daughters case because she was healthy.  (IE - rooming in, more kangaroo care, lactation assistance).

I feel like the hospital set us up for a rough 3 months that was unnecessary.  They are so much about measuring and controlling everything that they forget that there are people and families involved.  The superior attitude is so frustrating.  Parents are already scared.  They need warmth, support and knowledge - not attitude.  

Now, I am pregnant with my second child and I will be at a different hospital.  Hopefully, we will not have to do the NICU route again.  We have checked their policies, just in case. They do rooming in and encourage parents to stay as long as the baby is there.  If we encounter problems, I would not hesitate to look into other hospitals to transfer to.  I will again never be treated the way I was at the first hospital.

ETA:  After 4 years, I am still angry about our experience.  It makes me so sad that so many families have to start this way.  They really need a lot more support for parents to be involved from the beginning - as much as the parent wants to be involved.  If they want to sit next to the crib all day, let them.   If there isn't a medical reason preventing it, let them kangaroo care as much as possible.  Don't try to tell a parent how to be a parent.  The NICU is there for medical support, not to replace Mom and Dad.