For Expecting CDH parents

I have typed up my NICU advice list a few times, so I thought it might be helpful for other parents to see my NICU must-have’s list.. I’ll add to this as I think of more things.

          For Mama: 

  • Books, magazines, journal, laptop, bible.. for the first couple of weeks I couldn’t read, but I did spend a lot of time journaling and blogging.. it was very therapeutic. Plus it is incredible for me to read back through it now and see how far she has come.
  • Hands free pumping bra and nursing cover – so I could pump right next to Finley but could have my hands free to surf internet or read.
  • A little notebook with inspirational verses/quotes.
  • Hand lotion. Washing your hands and sterilizing a million times a day really dries them out.  My hands were bleeding at one point.
  • Compression stockings. I had really bad swelling from the Pitocin drip and not being able to stay off my feet. I wore them for 48 hours and my swelling finally went away after a week of painful cankles.

  • For Baby:
  • Call NICU and ask if they have the Frederick T Frog for the babies- ours did not and the company won’t sell to parents so I went to the store and bought a couple of the beanbag-like hot/cold pack things that are really similar to this http://freddy.respironics.com/ This was great for containment and positioning and Finley LOVED it. It would help when she was recovering from a de-sat. If you are crafty, you might be able to make them.
  • Blankets/Clothes. If you live close to the hospital it is nice to bring in your own blankets and clothes – Soft snuggly blankets for them. But then you bring them home and wash and bring back. If the hospital washes them they usually get lost.  Once they are ready for baby clothes,  snaps only, or wrap around tops with pants.  You can also sleep with a lovey or blanket for a few nights and bring it in and leave in the Isolette so baby has the smell of you close, even when you have to leave.
  • Eye mask for baby… babies with very reactive PH need outside stimulation kept to a minimum, so the nurses would put a folded up wash cloth over Finley’s eyes. I had a soft terry cloth burp cloth my crafty friend Jenny made that worked nicely too. I have seen some other pictures of babies with baby sized eye masks on in the NICU, not sure where you find those.
  • Black/White Photo of your family for the isolette (this is nice for the nurses too to recognize you), maybe a quote, bible verse to put up for baby (and you). I had Jeremiah 29:11-13 up. I don’t think I will ever be able to read that verse now without crying.
  • CD player with lullaby music for when they can tolerate it – Finley really enjoyed music and it helped drown out the other babies. Our NICU had one we could we use, but they didn’t have many and I saw other families that had to bring in their own.
  • Disposable camera to leave when you aren’t there so the nurses can snap photos of cute moments. This was advice from one of our nurses and I am so glad we did it.
  • HOPE.
  • Resilience. CDH is very much a roller coaster ride. Celebrate the little victories.. ride out the rest…
  • Look at your baby not the numbers. The nurses will keep saying this to you.. You can fixate on the numbers going up and down and it will just stress you out. If something is going wrong you can tell by your baby’s coloring or temperament. When your baby tolerates it – read to them, lay hands on (stroking them tends to agitate), prayer over them, sing… your baby will know you are there.
  • Trust your mama gut. Don’t be afraid to ask questions. If you don’t think someone has washed their hands- ask. Want to double check that med before someone administers – ask. This is your baby.

Other things that helped us –

If your friends ask what they can do – letting them drop off food at the hospital was really nice.   Hospital food gets old fast.  Just set the expectation that it may be helpful for them to just bring the food and leave, in case you aren’t up for visiting.

Spiritual support – having pastors, chaplains, strong friends of faith come and pray with us.. having friends that could pray with me over the phone when I couldn’t – Having people pray over Finley in the NICU was such a blessing. There may be times when you are angry or scared and that doesn’t mean your faith is any less strong. Be honest with God and yourself. Keep telling yourself that God is good even when you may not trust it.  Lean on your spouse.

Don’t be afraid to ask your friends/family for whatever help you need- people REALLY want to help and it gives them something tangible to do (besides praying) and it is a blessing to them as well as you. Errands – shopping, food, helping with your other kids, etc…

A nurse also told me early on to make sure you leave the NICU atleast once a day and go outside. Remember there is a world going on outside of this NICU experience and you have to take care of yourself. Eat, sleep, drink water, take your vitamins. I told myself that the only thing I could do to help her was make milk, so that was the only way I could eat and take care of myself because I knew it was for her. I pumped every 2 hours post birth and my milk came in FAST.  I ended up making enough milk for twins, or triplets I think. Pump near your baby if you can.. I had been told that it can help with let down, supply etc..  Also, you need to take care of yourself because if you get sick, you aren’t allowed in the NICU.

You are going to feel guilty every day for time away from your other kids, and when you are away from baby – you will also feel guilty – I won’t tell you not to feel this because there is no way around it. Just give yourself grace and know it is just a season. There is no way around this. If you have other children, you will forever be torn.  I tried to spend one on one time with her as often as I could, even if that was just reading stories and cuddling in bed before heading back to the hospital.

Other parents – have I missed anything?

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