at home at last

Little Miss loves her little Curly Q! She's so helpful!

Tummy Time!

Taking a little nap

How wonderful it feels to have Curly Q home from the hospital! I feel like we can finally move on and get on with our normal lives. We were at the hospital daily from Thanksgiving to Easter. Pretty crazy!

As you can see, Curly Q is still on oxygen. She also has an apnea monitor that alerts us if she stops breathing or her heartbeat stops. This has helped me feel a little secure with the whole thing. Even with Little Miss, I was a paranoid first time mother and I checked to see if she was still breathing all the time!

I have a lot to blog about, but my time is limited. I just wanted to share some cute pictures and say that we are LOVING our time together as a family!

I'm Home

On Tuesday, April 10, Curly Q was released from the NICU and came home to be with our family. What a happy day!

Day 81

Curly Q is eating her way out of the NICU. She is a champ at nursing and she is constantly amazing her docs and nurses with how well she is doing. Wednesday night, she did awesome again. Her test weight revealed 54, even better than the morning. Then yesterday, we got bumped up to nursing 3 times a day. In the morning, she got 48, a little less than before but still awesome. Her afternoon feeding, she got 61! Then in the evening, she got 61 again. This was pretty much her full feeding. I'm so excited! This morning, when I got to the hospital, the nurse was holding Curly Q - she was trying to keep her happy. Apparently Curly Q was starving and was getting frustrated with her pacifier. She just wanted to nurse. Yay! She had no problems latching and ate 68! She's getting the hang of it. It's been cute to watch her experience eating for the first time. The past couple days, she has been wide awake and gets most of her milk in less than 10 minutes. And she stays wide awake after - like it is new and exciting. The last couple times, she paces herself a little better and gets drowsy afterwards. She's so stinking cute and we are so excited to have her home.

Day 79

I am so excited: Curly Q is doing FANTASTIC! Yay! Finally! So, on Monday, they lowered her oxygen down to 1.5 liters which shocked me. The day before they lowered her to 2, and I fully expected her to be bumped back up to 3 to recoup (because she's done this in the past every time they lower her less than 3). But she did great on 1.5 liters of oxygen pressure. Basically, she's just on oxygen support, without the pressurized oxygen. This is finally low enough oxygen for her to begin oral feedings!

Yesterday, the Doc gave the okay to begin nursing. Last night, we did a trial run to see how she latched. The occupational therapist was there to consult and help. Curly Q latched immediately with no problem and began nursing like a pro. The OT lady was shocked. She said she's never seen a baby do so well. She grabbed the stethoscope and listened to her throat to hear her swallowing. She was gulping milk and breathing fantastically. The OT lady stopped Curly Q before she was finished because this was supposed to be a 'dry run' and she didn't expect her to do so well. Afterwards, Curly Q was not happy we stopped her. She didn't want a pacifier and she was getting upset. She just wanted to keep nursing.

This morning, we tried again. We weighed Curly Q first to see how many grams she weighed. Then we weighed her again after she ate and that's how they determine how much she ate. Once again, she did fantastic! I was so proud of her! I could hear her gulping milk and breathing great between each swallow. The nurse asked if I could feel her swallowing, and I told her I could hear it. We weighed her and she weighed 50 grams more. 50! 66 is her full feeding. I asked the nurse if that was good and she was shocked and said it was absolutely awesome! I'll go back to nurse Curly Q tonight, and if she does well, then tomorrow we can bump up to 3 times a day. Then maybe 4 times a day. Then try back to back feedings. Then 12 hours at a time, then 24 hours, then HOME! If she continues to do as well as she is, she could be home next week! Hooray!

Day 77

Curly Q is doing so good. I get kind of excited because for once it actually feels like we are taking steps in the right direction. We've been standing still or moving backwards for so long, that it is hard to believe we're progressing.

Curly Q is starting to do better with her breathing. She was doing so well on 3 liters of oxygen so yesterday, they lowered her oxygen pressure down to 2 liters. She hasn't been that low, so hopefully she does okay on it. She needs to be down to 1.5 liters to start oral feedings. We're close!

Curly Q no longer has her special feeding tube that empties into her intestines. They've been slowly emptying her feedings into her stomach to get her used to it again. She's doing great. She's eating a little over 2 ounces (66 mL) every 3 hours. Yesterday, they put her feeding tube up through her nose instead of down her throat. It sounds a little gross and weird, but it is so much better. She can't pull it out as easily and there is less tape on her face to hold the tubes in place.

She's becoming a lot more awake and alert. She actually stays awake a lot longer and looks around. We brought a couple toys to hang in her crib to give her something to watch. She's so stinking cute. Her eyes are turning blue. And I think her hair is a lighter color than it was when she was first born. One of her nurses called Curly Q the 'big sister' on the block. She's in the little corner of the NICU with 3 other babies around her. All of them were born in the last week. One day when one of the babies was born and admitted, it was kind of crazy in that corner. Lots of people coming and going, lots of bright lights and machines being moved around. Curly Q's nurse propped her up in her crib so she could watch all the excitement. She just sat there, wide eyed, watching all the excitement. So cute! Anyway, things are going well. There might actually be an end in sight.

in love

This picture was taken today. I LOVE IT! Curly Q had just pulled out her feeding tube, so I asked if I could take a picture before the nurse put it back in place. That way you can see her massive double chin! She has a "tape mustache" that helps her nasal cannula stay in place.

Due Date

Yep, that's right. Today was Curly Q's due date. Tomorrow she will be 10 weeks old. I have mixed emotions about this day. Ten weeks ago, the NICU staff told us to tentatively plan on her expected come home date as her due date. I thought in my mind that 10 weeks was so long, Curly Q would be home long before that. Here we are on her due date and she isn't even close to coming home. Curly Q has made some progress (see previous post), but there are so many steps that she still needs to take before she comes home.

The last several weeks, I've noticed my attitude shifting. I've felt a lot more frustrated. I found myself several times a day saying that Curly Q was "never" coming home. This was compounded by the fact that everyone always asks "So, when is she coming home?" or "I thought you said the end of March. Why isn't she home yet?" I honestly appreciate everyone asking how we and Curly Q are doing, but I sometimes need to bite my tongue to prevent from screaming "I don't know when she's coming home!" The last 10 weeks have been very emotionally taxing on me. I personally think it is more difficult on me than when I was in the hospital.

Last night, I was at Curly Q's bedside holding her against my chest. She was completely relaxed and sleeping while I rocked her. I was overcome with a feeling of gratitude for this little baby. I have forgotten how lucky we were in this whole ordeal. There was a very real possibility that I was going to lose the baby. Then even after she was born, there were tons and tons of risks of things that could go wrong. And she seems completely healthy except for underdeveloped lungs. I have spent too much time with being negative and frustrated that I have forgotten to feel grateful. So last night, as I rocked my baby, I felt so grateful that this baby was protected and looked after, that our prayers were answered. So, my new goal is to be grateful Curly Q is in a fantastic facility with experienced doctors and nurses taking care of her. I need to stop focusing on time and be grateful she's doing as well as she is.

Curly Q is now weighing in at 7 pounds 4 ounces and is 19.5 inches long. The doctors and nurses always comment on how big she is. She is a happy baby, but when something is wrong, she lets you know. One of the nurses called her a Princess that often sends them looking for the little pea hiding underneath stacks of mattresses. I'm glad she has that feisty side that lets them know something isn't right. She is still fairly stable on breathing. She is still on a high flow nasal cannula with an oxygen pressure of 4, instead of 3. They're going to try to wean her back down to 3 sometime this week. They've started the transition of putting some milk in her stomach instead of only in her intestines. Hopefully things are healed from her acid reflux and hopefully she doesn't breathe any into her lungs. They are monitoring her closely as they slowly transition. Overall, she's such a sweet girl. Yesterday afternoon as I was holding her, she was smiling most of the time. Of course she was sleeping, but it was so sweet to see her happy. She's been through a lot for such a small baby.