One of the first hurdles that we had to overcome was a PDA, or Patent Ductus Arteriosus. He had surgery September 24th. It was the first of many. This type of defect is very common in preemies. It was the first of many Downs that Ty would have.( He had many ups to but the first couple of days were touch and go...)
Just one of those common preemie experiences!!!
To add to the long list of preemie things you will get this month .. Here are a few do's and don't of NICU parenting....... We had these posted on Ty's incubator. I thought I would share so you would get an insight into helping a preemie mom or dad.( Most are for the Nurses and NICU workers, but some work for everyone!!)
1. Ask me what I want to be called.I may or may not want to be called "mom." I would like to be called by my first name.
2. Send me a Polaroid of my baby when I can't get out of bed because I have had a C-section OR take pictures when I am not able to be there. For Tyler we had a disposable camera in his drawer all the time. LDS NICU also took pictures of them when we were gone.
3. When referring to my baby, please don't call him "your baby" (as if he is your baby) or "the baby." He is your patient, but he is my baby. The best possible way to refer to my baby is by calling him by his first name. ( this was huge. The Nurses would get use to having Ty.. he was still MINE!!)
4.Give me a tour of the nursery soon after I arrive so I know where the pumping room is, where to store breast milk, the lounge, bathroom, etc. (Remember if I am groggy or having a difficult time coping, I might need a second tour later.)
5. If you are the nurse caring for my baby, acknowledge me when I come in the room so I know who you are.
And some DON'Ts....
1.Don't Call me "Mom." Please ask me what I would prefer to be called. ( I didn't care so much about this one. I had Primary nurses that I just loved and they knew me after a day or two...but for some .. I am sure it was an issue.)
2.Don't Move the baby without telling me ahead of time, or at least meeting me at the door. ( when you get into the habit of having them in one spot going in and seeing your baby not in your spot is a little overwhelming. Ty was "kicked" out of his corner it was REALLY kinda nerve wrecking. Change during that time was SO hard.
Oh and Jenn.. I am glad you got our SPOT!!!
3.Don't Tell me how I should be feeling or that I "need to be patient." Even now hearing that it is "normal" is hard to hear. It is something we are dealing with. Not you. You have NO idea how I feel.
4.Don't dismiss or diminish my concerns. I am not used to seeing my baby have bradycardias or color changes. Having a sick baby was so different. You can't touch them or love on them like a healthy baby. Holding took a long time and he was sick. On some days he was sicker than others but he is my baby.
5. Don't assume that I don't care for or love my baby if I don't touch him. I may be very scared or overwhelmed. The first time I saw Ty I wanted to touch him but I remember being told not to rub. There were days when I was told not to touch him. But there were days I couldn't touch him. I was sad. I was scared. He was so precious but still so sick.
4 comments:
Between this post and the previous one...I'm bawling. I'm gonna have to NOT visit you for all of November! :)
Nancy, that is a good list. I would add to it please don't be sarcastic with me when I'm falling apart or really ever! I had one NICU nurse who I made sure was NEVER Jaxon's nurse again because of a comment she made to me when I asked if he would ever get off the oxygen. I felt like he was always attached to these wires. She replied well he wont go to kindergarten with them. I hated her after that. Don't be snotty with the mommies in the NICU! :) HUGS, Denise
Oh Nancy, boy did you ever hit a sore spot with me that I had forgotten.... I HATED when the NICU staff called me "mom". HATED it! It was always said with this patronizing tone too. ARGH!!!!!!!!
Our NICU would only allow Paige to be held once or twice a day. (while she was still fragile). The day that I arrived there (90 minutes away-on a good day) only to be told that I couldn't hold Paige because my step mother in law had held her for an hour... my reaction gave a whole new meaning to "going postal". When I approached the nurse I was told, "well, we didn't know if you were going to show up today and your MIL was here."
Great list! I wish I had thought of hanging a list like that on Paige's isolette!!
Keep up the good work!
Nancy, exactly. I just got tears in my eyes reading this. I think I will pass these on...I'm on a team at the hospital where Stella was in the NICU. Our goal is to help make the NICU experience easier for parents...thank you for these and for your blog. Thanks, also, for reading mine.
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