November 25, 2009 (day before Thanksgiving), good news/bad news

November 26, 2009 mommytoabpluskb

We were getting excited the past few days because the repogle was pulling out significantly less secretions as when it was first put in.

Also, they put in an NG tube since she pulled out the NJ tube and they wanted to see how this worked and it was working wonderfully. She was slowly weaned off of the TPN and lipids and today her NG tube was removed because she was taking a 40cc bottle of formula at every feed and doing great, just a little spit up here and there.

The past couple of days she has been having trouble regulating her temperature once again hovering between 97.6 and 97.8 with clothes on and wrapped in blankets. The nurses started putting the bed warmer back on and she seemed to be doing better with her temperature.

The past two days have been crazy since the NICU has been very busy and closing a lot and yesterday we had to make two attempts to see her and after many tears, I was finally able to get in there and hold her and feed her. Parag also got to hold her so we had a great visit.

Tonight, Parag and I went back with Alex. I changed her and she spit up a bunch as I was doing that. So, I had to change her outfit again, this time a cute greet one with a matching hat.

While I was feeding her, she drank down the bottle in her usual 7 minutes flat and got her two burps out. The first burp some mucous and one brown spot came up with it and I called the nurse’s attention to it.

Well, just now when I called the nurse said she’s been vomiting basically since she came on at 7:30. I fed her at 5:30PM and there is old blood coming up too. So, she is NPO once again and the repogle has been put back in.

I am so sad and down to hear this news the day before a holiday where you’re supposed to be with your family, your whole family. It breaks my heart so much to hear this news.

I pray tomorrow we get some answers of why our baby is so sick and why isn’t she getting better so she can see the joys of our family and our home.

Yesterday was Kiran’s 100th day in the NICU. It was a really weird day for all of us because it was also Parag and mine’s second wedding anniversary. I just don’t feel like celebrating much. We went to see Kiran together and dropped Alex off at Marilynn’s house. So we spent some time together and hopefully one of these days we can actually have a regular date like dinner and a movie.

I want to take this time to thank people who have really been there for us. You know who you are. Thank you for all the kind words and offers of help, and some easy meals. Some nights I’m just too tired to cook or clean and just want to go to bed. It’s tough. It’s been the roughest last 101 days in our lives. Our whole family has been affected by it.

I’m going to post this and maybe it might help us a little bit more. I feel that sometimes people just don’t know what to say or do for someone who has a preemie baby in the NICU.

Survival Guide for the Friends and Families of NICU Parents.

This is just a quick brainstorming of ideas, not intended as a comprehensive guide though I may develop it more over time. As someone a little over 3 weeks into this rollercoaster ride I know there are a few things I appreciate from friends and family wanting to help.

- Frozen meals are one of the best helps, ideally in individual microwavable servings, good meals primarily for lunches. Something good and filling, your friend probably isn’t thinking too much about their diet (other than guilt tripping themselves occasionally). Giving them meals saves them eating expensive junk from the hospital.
- Lifts to and from the hospital without the expectation of seeing the baby if your friend needed to have a c-section, NICU’s often limit visitors.
- It feels a little awkward giving people money sometimes, but a donation towards petrol money or breast pump hiring can make a significant difference. If the baby was born prematurely the family may have been unprepared for the amount of leave they’d need to take so finances can be rather scary. And babies with disabilities often need a lot of extra help with equipment set up.

- Small amounts of social contact on their timetable, keep in mind that time is a bizarre concept when you’re not working and you’re spending so much time in the NICU. It’ll most likely be you making an invitation of “Do you feel up to coming over for dinner tonight? I don’t mind if you have to cancel at the last minute.” Thinking more than a couple of days in advance is a serious challenge, but they’ll need support to stay connected to their community and the real world. Burn-out is a serious risk.
- See if you can give them a night out as a couple to assert their relationship beyond being in NICU, or invite them to a small scale party where they aren’t the focus and they don’t necessarily have to entertain or repeat their story thirty times.

- Little text messages and emails to see how they’re going and tell them you’re thinking of them. Phone calls mean verbalising the same news over and over which gets exhausting. Text messages mean they can reply when they have time and energy for it. With their permission, forward on the baby’s and the parents’ progress on to others who are curious, and pass back well-wishes.
- Make something special of the photos they’ve been taking, like a web-based scrapbook or website where you can update where the baby is at for them so they can just direct family and friends to look at the website. If they don’t have a digital camera, see if you can find someone to loan them one or pool together with other friends to buy them one. Those photos will become precious treasures.
- Do your own research on conditions the child develops so they’re not having to answer the same questions over and over, and try to become a little familiar with the terminology and equipment used. If you do put together a webpage, put links to medical websites or summaries of the conditions to help others understand what’s happening.

- Help them celebrate the milestones, it’s so important to share and make a big deal of every little positive you can find with them.
- Offer to clean the bathroom or the kitchen for them. Asking what you can do to help is a little too broad and overwhelming. Offering something specific they can just agree to is so much more helpful.
- Give them something special and meaningful as a present to them. Let your friendship with them dictate what you give them, but it’s important to acknowledge them as a living human, not just a parent.

- Keep in mind this is a long term journey for them, they could be in hospital for a very long time. And it doesn’t end once they leave hospital. Touch base after the rush of everyone wanting to meet the new baby and wanting to see the new baby once they get home.
- If they seem to need space, give it to them, and see if you can help maintain their breathing space too by asking others to hold off on visiting just yet.
- Call before visiting, and be understanding if they refuse.
- Understand that if the baby is in intensive care then visitors will probably be severely restricted, probably just to the parents, siblings and maybe grandparents.
- If the family already has children, babysitting is always welcome as it allows both parents to visit their new baby together without worrying about an underfoot bored toddler playing havoc with the electrical cables and monitors.

- For all the complications, these parents will love their baby, help them celebrate the birth in a positive way, especially if it was traumatic. Put a birth announcement in the newspaper, make cards with photos to send out to share the joy at the baby arriving. It’s easy to get lost in the equipment and medical terminology and problems, anything to help them focus on the positives is important. Ask them for the precious stories of what their baby does to help step them out of the medical side of things and love their baby.
- Ask them what they need. There’s likely something I’ve missed here and every baby and family is unique, their needs will be utterly unique too.

This is a traumatic time for everyone involved, and it’s the little things that make a difference.

One thing that I’ve been doing the past several weeks is spending more time with Alex and I’m really enjoying it. I feel like I am getting to know her all over again and I am also seeing the anger in her. She is angry at not being able to see her sister and angry that she isn’t home yet and that they haven’t had any pictures taken together.

I was hoping to take the girls’ Christmas pictures soon. I have 3 Christmas outfits for Kiran and I was hoping to take some nice ones in the hospital. I was going to take a nice one of Alex outside in her Christmas dress and upload their separate pictures and put them on one card. I was just going to do that in the next few days since Kiran seemed to be doing so much better and the tubes were starting to come out.

so I will keep you all updated as we hear more and I hope you all have a happy Thanksgiving.