Inside Out

For the past few days I have been thinking about how I need to update the blog, but to be honest, the idea of reliving everything makes me so weary. However, if I do not do it soon, I am going to leave details out, so here goes.

Warning: this will be extremely long and may induce tears.

So, I left all you fine folk on Saturday afternoon where she was doing better, but they still were not happy with her x-rays. They were optimistic/hopeful that they would see the bowel move on her next scan and that would mean she would not need surgery. 

Cue the snowstorm. 

For all of you who do not live in the Northeast, this season has been the winter of over-forecasting (I think I just created a word, but I am exhausted, so go with it). So when they were calling for 1-3 inches of snow on Saturday, I went to the hospital unconcerned. Throughout the day, the snow did not stop, and it soon became 4-8 inches. However, her next x-ray was at 9 pm, and we really wanted to be there when it happened. To be honest, I was hoping it would come out changed and I could go home and finally rest easy. We start getting text messages from people warning us how bad the roads are getting and to go home soon, but we, of course, do not listen. Her next x-ray is done and the result? No change. 

She is doing better and better, but her x-ray was still not good. I was absolutely horrified of the idea of going home, getting a call in the middle of the night and not being able to get back to my baby because of the bad roads. We decided to hang out and hope the snow would slow down. It didn't. Around midnight we start tossing the idea around about getting a hotel room, which we ended up doing. I did not have my pump with me, so I used the hospitals before we left and then went for a 4 hour sleep to come back in the morning to use it again. Jimmy, my sister and myself walked into The Madison Hotel (picture mid-20th century grandeur) looking like we had been sitting in a hospital for 18 hours. The receptionist who was working heard our story and gave us the employee rate (her baby had been in the NICU for 5 days once). We slept like the dead and woke up to be back at the hospital at 6 am, when they were supposed to do her next x-ray.

My sister dropped us off, and then went home so she would be there when her son woke up on his 5th birthday. Natalie seemed to be doing the same as a few hours earlier when we left. They took her x-ray and I passed out on the couch in her room. I woke up to a white-haired man in a white surgeons jacket telling me that they were going to have to do surgery. Her x-ray had not changed and it had been over 24 hours. As much as they do not like to do surgery unless they are sure, he said it was not worth the chance of waiting for more confirmation. It was probably around 8:30 am when he told us and they decided the surgery would be at 10 am. They would bring the OR up to her room, so they had a lot of prep to do. 

I cannot even begin to describe how I felt. The moment he started talking, I started crying. It is actually probably better that I did not write this a few days ago, because it would have been a lot sadder. I feel like as the time goes by, that the details are getting blurrier and I cannot recall my feelings as well. I guess it is my way of coping. So, I tried to hold it together long enough to walk the 15 steps from her room to the NICU lobby and called my sister to break the news. Then Jimmy and I sat there holding hands, crying on and off, and watching them prepare Natalie for surgery. The anesthesiologist showed up with his supply cart, the surgeon arrived with his team and multiple supply carts. We were told we could stay with her until they started opening up sterile equipment. The NICU doctor and her nurse prepped her for the surgery and then there was about 10 minutes where she was all ours. 

What thoughts go through your head as you stare down at your 2.5 lb, 5 week old baby who is about to go "under the knife"? Is this the last time I'll see her? The last time I'll touch her? The last time she will open her eyes and look towards me? Will I ever hold her again and feel her warmth against my chest? I give her my finger and she squeezes with her tiny hand. I tell her how much I love her, how strong she is, how proud we are of her and how she cannot ruin her big cousin's birthday! I give a last squeeze to her hand, a quick kiss on her little head and we step back to watch as they continue to prep her. We stood there and watched for a few more minutes, but I have to admit, I was ready when they kicked me out. 

We went out to the lobby to sit with my family and wait. We let them know we were going to the cafeteria to eat and would be right back. I thought I would go crazy sitting in the lobby, but the moment I got to the cafeteria, I wanted to eat fast and get back as quickly as possible. I thought it would feel like forever, but it really didn't. 

A little over an hour later, the surgeon came out to see us. I have always seen these moments in movies or on tv, where the surgeon comes into the waiting room and the family stands up, wringing their hands and nervous...so yeah, those are really accurate depictions. He reported that she did very well during her surgery and they were right in thinking she had NEC. 

Definition of NEC from internet:

Necrotizing Enterocolitis (NEC): the most common and serious intestinal disease among preemies. NEC happens when tissue in the small or large intestine is injured or begins to die off. This causes the intestine to become inflamed or, in rare cases, develop a hole (perforation).

When this happens, the intestine can no longer hold waste, so bacteria and other waste products pass through the intestine and enter the baby's bloodstream or abdominal cavity. This can make a baby very sick, possibly causing a life-threatening infection.

They removed a dead section of her intestines, that if left could have perforated and caused deadly serious complications. However, he was not happy about the position of it because it was higher on the intestines. To simplify the procedure, they cut out the dead suction and then cap off each side of her intestines while she heals. Preferabbly, they wait around 6 weeks to do the next operation where they connect them back together. This gives them time to grow and gain weight, but is always better for this situation. They put her on IV nutrition, but in a week or so will start introducing milk into her system again. The problem arises that since her break is so high, that the milk will only be in her system for the length of the first section and that is not long enough to get the full nutrition to her body. This means, unfortunately, that they will probably have to do the surgery earlier than they would like. But again, we have to wait and see (this is quickly becoming my least favorite phrase).

He continued to tell us how dangerous the first 24-48 hours were after her surgery. This is true with any serious surgery and that they had to look out for all complications. He then continued to tell us that she was much sicker before the surgery (because she needed it), but was currently the sickest baby in the NICU and probably one of the five sickest people in the entire hospital. We got it, thanks. He was just being honest, which I appreciate, but you never feel ok hearing those things.

We got to see her and she already looked better. She was completely out between the morphine and the drug they gave her that paralyzes her for the surgery, but the color and the swelling of her stomach was already looking better. She spent the next 24 hours not awake or moving much and getting test after test run on her. We spent those 24 hours spontaneously bursting into tears. And even now, over 72 hours later, I still find these terrible thoughts entering my head that I cannot get out, and I won't tell you or you will think I am trying to make you cry on purpose. 

The only real complication she had from the surgery was a collapsed lung, which is normal (to the medical staff, not to me) and though it did not fix itself in the first day, they are confident with her breathing strengthening as much as it has, that it has fixed itself. They took a culture during the surgery and found that there was an infection in her intestines, so she is still staying on the antibiotics through the week. 

They put a pick line and an arterial line in her scalp after her surgery, so she has needles taped to either side of her head. The pick line is used to give her nutrition, so she will be on this until she gets and accepts milk. She is not allowed to be held while her pick line is in, which means I have a good 4-6 weeks without being able to hold her. This fact has been incredibly hard for me, I haven't held her since last Thursday and it already feels like ages. When I think about it, I almost feel the heat on my front where her little body used to curl up against me and then I start crying (shocking). 

She is doing better everyday. And today, they really seem happy with her progress. She woke up yesterday and was very alert, but seemed a little uncomfortable. Today she has been resting soundly most of the day, is a little calm, but still fights with her nurses whenever they annoy her. They attached her stoma bag today to collect her stools where her intestines come out of her belly (she has two rosebuds where her intestines were cut that stick out of her tummy until they will eventually reattach them, yeah, gross, I know). She is doing a lot of breathing even with her breathing tube, and they think they will be able to take it out and put her back on CPAP either tomorrow or Friday.

We have been doing well enough, I won't say good, because lets face it. I have definitely cried more since last Friday than I have in my entire life. I had my weaker moments, where I was just so angry that this was happening to my sweet baby who has been fighting so hard. I still have to bat away the negative thoughts of "what if"occasionally. I am almost worried about getting too comfortable about how well she was doing, like it will jinx something, but I think feeling that way is normal. Our family and friends have (like always) been very supportive and it was really nice when our priest that we grew up with at St. Matt's in Randolph, Father Dave (who is now at Our Lady of the Lake in Sparta) came and visited with us yesterday.

But all and all, I am just so proud of my little girl. Her resilience is inspiring and her spirit humbling. She is beautiful and strong, and is working so hard to stay here with us. Her progress everyday is amazing and I thank God a hundred times a day for blessing us with her.

I am probably missing a lot from the past few days, but this will have to do. Excuse all typos and awkward language, as I am way past exhaustion.

Thank you all for your continued support.

Here is your dose of Natalie Rose, without her CPAP mask, you can actually see her face:

Me with Natalie right before her surgery

An hour after her surgery

After surgery

Jimmy reading some Winnie the Pooh to his little girl while she recovers