NICU bound

So, where were we? Vitals. Upon returning to my room, I was prepping Leighton to nurse. Something I went into the hospital with little intention of doing. Yet, being there, the maternal instinct kicked in like no other. As I was taking her clothes off to do skin to skin with her, I noticed that her hands were black and blue. I freaked out, called the nurse - who told me this was normal saying her feet were the same way. I let her know that was from the ink like in the pic below is right after birth. I begged to differ and told her to come look at them. She did and then immediately whisked her off to the NICU. Let the panic begin!

After about an hour or so, a pediatrician came in to talk to us. She asked a ton of questions about the heart and the testing that we had done until that point. I was so anxious and nervous - come on already lady! Please get to the point! She stated that Leighton's oxygen levels had dropped which was of concern and they would like to an echo cardiogram to see why this was happening. This would test the heart and lungs to see if there were any abnormalities. I was SO upset. We thought we were in the clear with the heart and that was the BIGGEST worry we had with our diagnosis of DS.

A sight no parent wants to see their baby in.

Now our little moment of family time was taken away. Our first night with our little gal wasn't going to be happy and exciting, but now filled with worry and stress. She would have to stay in the NICU for monitoring. We knew nothing and wouldn't until she had the Echo test. When I first saw my baby in that room with all the plugs and cords, my heart sank. It was instant water works. Exhausted and disappointed, I wanted to stay strong for our baby girl. My parents arrived late that night so there was some relief. However, my baby wasn't with me. To make matters worse, the first nurse we encountered in the NICU was less than friendly let alone pleasant. Yeah, it was 4 in the morning and she was just doing her job, but a stranger on the street shows more compassion than this one did.

Now, I am not one to judge, but if you aren't into people and trauma, a NICU nurse might not be a wise career choice. In my experience with folks in the medical field, it seems that they forget that they are still dealing with people. Live human beings. I get that there needs to be order and rules, but some empathy and compassion aren't going to be lost on people in this situation. This nurse not only had poor bedside manner, but she took her witchy ways a step further and scolded me for changing the diaper too slow then schooled me on how to give my baby girl a bottle - in the bed! She wouldn't even let me hold her to feed her. Seriously lady?! That was just in the first hour! Welcome to the NICU.

Day 2 was somewhat better. I didn't sleep of course, hence my floodworks of emotion. I spent most of the night walking to the NICU - after just giving birth. Probably not wise, but nothing was keeping me away from my baby. As family began to arrive, and shift change occurred, the day looked brighter. I can't remember the details but I do know remember meeting Lisa for the first time. What a ray of sunshine. Lisa was the next NICU nurse and she was amazing! She gets it. She's a mother. She knew that we were in distress and the last thing we needed was a bunch of rules and process clouding our ability to be strong for our baby. Lisa was kind enough to walk us through what was going on. She talked to us. She treated us like parents of a sick baby and not like intruders in her space. I unfortunately didn't get a picture of Lisa and Leighton. But she will forever be in our minds and hearts. Throughout our stay, Lisa went above and beyond her "duty". She got us into the family room so that I could stay at the hospital after they discharged me; got us in with the Lactation nurse, introduced us to Katy, another great nurse; helped set up our pictures and a physical therapist; showed me tips and tricks of the baby world- rather than scolding me; she was heaven sent. And we were spoiled!

The next great nurse we met was Katy. Jay was the first to meet Katy and he knew as soon as he met her that we would love her. Lisa knew too and let Katy know about us ahead of time. Katy is familiar with DS and has a friend with a child that has DS and is also named after Katy. We knew then we had a match. :) As with Lisa, we felt like people and not intruders. Katy was amazing and knew all kinds of little tricks to make our gal more comfortable. From bringing her socks, to hats, to saline in her nose post oxygen tubes. We were in good hands.

For the next 4 days, we spent our time in the NICU. The first echo showed that our princess had 2 wholes in her heart. I hope I get this right... but one ASD, one VSD and also PDA and pulmonary hypertension. Like, whoa... what does this mean?! Well, the ASD and VSD meant she has 2 wholes in her heart. One at the top between the top 2 chambers and one in the bottom. The top is very common and she could live forever with it there. The bottom isn't as common but not as serious as it sounds. However, if it doesn't close up on it's own by the time she's a year old, she will have to have surgery. The PDA was basically the way the blood was flowing to her lungs. The pressure was higher than they would like to see so that would have to come down to go home. The best news was that the blood was flowing the way it should be. The verdict is that they will have to keep her until Monday to do another echo and see if the issues were correcting themselves. On Monday, Echo 2 showed it would. This was great news but wasn't shy of a small setback. On Saturday, the day I was discharged, they let us know that her heart rate had dropped and that usually meant a mandatory 5 day stay. The good news was that the drop wasn't of significant time and she was at rest... yet we were now on pins and needles again. So, we wait until Monday to find out more info.

I remember seeing mom's going in and out or only coming at feeding times. Maybe they were the wiser and actually getting rest. But I couldn't bare to leave my angel's side. Especially if she were awake. Katy and Lisa were kind enough to allow my mom to stay in the room with the baby while I got a nap here and there. The other nurses wouldn't allow it. It wasn't until the last 24 hours we were there that we realized just how good we had it with these ladies. There was one nurse the night we left and another the day we left that almost pushed me over the edge. It was apparent to me that a nurse can make or break your stay in a situation like this. I don't think the night nurse said one word to us until she had to. She wouldn't allow me to change Leighton, take her temp or anything. The young lady we had the day of, well she is of a different kind. Her comment to me about working in the NICU (when I said it had to be so rewarding) "It keeps the maternal instinct at bay. I get to go home and sleep, you don't." Lovely, and you are caring for my child. Reassuring. She was just a pain in the butt. PITA. Mom wasn't allowed in there without me; She made us get our "things" out of the family room by 11 when no one was allowed in there until 9 pm. The list goes on and on. I have since tried to put it behind me and not hold a grudge. Dwell on my favorites and how lovely they were! But have learned that you have to stand up for your little one and what you want from the situation. If you don't speak up, they won't hear you and your baby can't speak for herself yet. Lucky for us, this nurse had someone training under her that had a heart so we had a buffer.

The day of leaving was CHAOS! She had a hearing test, eye test (sort of), carseat test, pictures, and her last echo. To begin the day, we had no idea if we were leaving today or a week from now. Anxiety isn't a strong enough word to describe what was going on in my mind. I couldn't have ran a marathon and probably only had about 10 hours of sleep in the last week. One by one, Leighton was taking on these tests and knocking them out of the park. She had her echo at 10 am. We got the results at 5 pm. Yeah... PINS AND NEEDLES! In the meantime, we filled out time with all the "other tests" and all went well. For her carseat test, she was to sit in her carseat for an hour and a half with her vitals couldn't drop. She literally rocked it! At the very last second, it was like she had her own watch and let out a squeal as if to say - "times up people!" priceless!

The team came in to deliver the news about her echo... all was great and healing on it's own. The let us know that these issues weren't a result of the DS as they could easily be because of her being 37 weeks. She was one day shy of 38 weeks, by the way. Yet everyone considered her 37 which put her in another category. She was considered 4 days over being a preemie. Talk about numbers. So her echo was looking good, the hypertension was gone, the PDA was looking better and her small wholes were adjusting themselves. She was doing this on her own and required no medication. FANTASTIC!

We are going home! Next step - loading the car and meeting the dogs!


  1. This post brought back SO many memories of Russells birth...I agree with how the Nurses on staff can make or break an entire experience! I was so angry reading about that one Nurse and how cold she was to you...I remember crying one day in the NICU after Russell was having his heart scanned...This Nurse got stern with me and told me I needed to stop reacting that way!!!!!! WTH...Stop crying because I am scared for my baby?!! I loved the Nurses who treated Russell like a baby and not just a "job" they had to do. I still keep contact with three of them and they follow Russells blog.
    Anyway...I am so happy to hear all is well with Leighton...She is precious!

  2. Congratulations!!! I'm not sure how I missed her birth?! I'm so excited that you are home with your sweet new girl and with any luck finally getting a little rest! She's absolutely perfect!!!!

  3. Wow Shona. What a welcome to mother hood huh? Let's just throw everything wrong at you that we can? And you know what, you are doing great. Your little lady is doing *great* and the NICU, while I agree there are good and bad nurses, is really only there to make sure she succeeds. Jane was in the NICU for 2 days and I was in there most of the time but I was sooo out of it. Steve was the one who spent the first day with her for the most part. I hope the move home will transition well. I hope you have a lot of help! Anyone who offers it - take them up on it!! Food?? Yes! Bring it over! Diapers? Sure! People want to help and those things can really help so much (if people hadn't brought us dinner, I would have forgotten to eat). I am so happy for you guys though, and so thrilled you are going home with this beautiful girl. And I love that you are blogging about it! You can print these off even and put them in her baby book!

  4. What a great idea! I think I will do that. I thought about doing the ebaby book like the google commercial. :) We are really blessed and I just can't get enough of her. :)


Post a Comment

Leave me a message.... I would love to hear from you.

Popular Posts