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

Upside Down

Thursday, Natalie had her best day ever. She was on room level oxygen (which is 21% oxygen, what we all breathe) and she had almost no blips of her numbers. The dips she had were super minor and we had an awesome session of Kangaroo Care where I did not have to tickle her feet once to get her to breathe. Her nurses were optimistic that her tylenol treatment was working and they did a new EKG that afternoon to see if her PDA was closing. While they were doing her EKG, she started spitting up all her feed. They figured it was the pressure from the probe on her distended belly (remember it is full of air from her CPAP), but they noted it in her charts and mentioned it to the doctor.

Jimmy and myself went home that night flying high because things were looking so good.

Cue Friday.

We woke up to a call from the resident doctor that Natalie had spent the latter part of the night throwing up all her feed and that they think she has an infection. Considering I saw her spit up the night before, I was not incredibly surprised that it led to something more. It was the 3rd time they thought she might have an infection, so we were concerned, but not too bad. Jimmy went to work and I got ready to go to the hospital to check out the situation when the doctor called Jimmy and basically reiterated the same news, but said they were going to have to intubate her (put in a breathing tube). At that point, Jimmy decided to come pick me up, and we would go in together.

Then Jimmy got a flat tire. (Because, of course).

I went and picked him up at his office and we headed out. From Chester to Morristown is a one lane road that goes through the country and this was the way we were going when we got stuck behind the slowest car ever. While stuck behind this car, Jimmy gets another phone call from the doctor asking how soon we were going to make it to the hospital because she might have to go into emergency surgery on her intestines. Needless to say, at this point we starting panicking and there was no safe way to pass the car. So I told Jimmy to honk a little. It did not do anything, but when we finally got to Morristown where it turns into two lanes and we passed the car...it was a little, old nun driving (no joke). So, this at least provided some comedic relief.

We get to her room and there was about 12 people in there. Multiple nurses, doctors, surgeons, respiratory therapists, and a social worker. She was a weird greyish color that freaked me out more than anything. One of the doctors spoke to us and used the term, "but I really don't think she is going to die, I think she will make it". I think it is pointless to say that I broke down by that point. The head nurse spoke with us. The social worker spoke with us. She had a breathing tube in, they were giving her blood transfusions. They were doing a whole bunch of things I cannot remember at this point. They showed us her x-rays from two weeks ago and then now to show us what was wrong. It was a lot of information and emotions all at once.

When they finished messing with her, we just watched her lay there looking scarily lifeless. The nurse then told us that they had given her morphine when they intubated her, so that is why she was so passed out. That made me feel a lot better. Slowly, between the blood transfusions and antibiotics, her color came back. They ran tests and x-rays every four hours, and they slowly started improving. We calmed down and then waited to hear what was going on. The problem is her intestines are so enflamed, they cannot tell if an infection caused it or a problem with the intestines are creating the problems. So, we had to abide by the wait and see approach as they continued to x-ray on a 4 hour (then 8 hour) basis. We waited to see how her 8 o'clock bloodwork came out, which was good, so we went home and would call in to hear how her midnight x-rays went (they said they would call us if there was a problem). They were very happy with her x-rays and we both passed out until this morning.

We arrived (optimistically) thinking it would continue in this direction, but were wrong. Her most recent round was disappointing, they said. They were not worse, but not much better. Also, today we have a different doctor and surgeon from yesterday, so it is a different point of view. We just had our second x-ray and there was no change. The surgeon came up and checked on her and was not happy with what he saw, but there is still no obvious need for emergency surgery because they really do not want to open her up if they are not sure. The doctor explained that the bowels in one area of stomach have not moved and that is what they are concerned about because something seems like it is blocking it.

Up to the minute news: she had a large stool and her stomach is a lot softer. This made the doctor happy, so again we are waiting until the next x-ray tonight and hoping for good news. It sounds like the surgeons are worried about missing a certain window of opportunity with her, so I hope they make their decision soon, but I trust them and we are hoping for the best.

So please pray for our sweet Natalie Rose and we will keep you all posted.

4 Weeks Later

Over 4 weeks have gone by and I cannot believe how fast time is flying, though if in a different mood, I would probably tell you it has been the longest 4 weeks of my life!

So, I left you all with the news about the PDA hole problem and to be perfectly honestly there is not much update on anything. She continues to have ok days (not great days, but not terrible) where she does well 90% of the time, and then has a couple of really low drops. I do not think this will change until her heart issue is successfully handled. They started her tylenol treatment Monday night and they will continue that for 7 days until they scan her again. Unless we saw a marked change for the better in the next few days (which doesn't sound like it happens that quick normally), we really won't know the status of the treatment until they scan her again next week. They did do blood tests to make sure she is accepting the medicine ok and all her results came back great so they can continue with it.

She is having a little bit of problems accepting all her feedings today. She always have what is called "residuals"that comes up a vent tube. Her residuals were larger than usual today. They warned us she might have to go on a breathing tube if this continues until her heart is healed. Basically they think the residuals are stemming from her respiratory problems (which stem from her heart problem), and it is so important that she gets her nutrition, they might put a breathing tube in to let her concentrate on that. Hopefully, this will not happen, but we shall wait and see.

Our little miss is growing like a weed and weighed in today at 2 lb 11 oz, which is amazing. She really looks twice the size compared to a few weeks ago. I feel like every morning I walk in and she got bigger. She was super tired today because the past few days have been crazy. They did her latest brain scan yesterday (which she whined and cried through) and it came out looking good. She likes to play with her tubes and swat at the nurses hands as they come into the isolette. She is such a feisty little girl and the nurses are all suckers for her.

She was moved to another room for the first time today. Her current roommate tested positive for an infection, so protocol dictated since she tested negative, that she be moved to a "clean" room. So, for the first time she is the new roommate to another baby. It was so incredibly weird after 4 weeks of being in the same room to be in a new one, but hey, I have a new view out the window (it is of a parking garage).

Jimmy and myself are doing pretty good. Yes, we're tired and yes, we're stressed, but we try to alternate who feels overloaded and who is the cheerleader for the day. It works half the time, but we're tough and we are very lucky to have a great support system with our family and friends.

So, not much new, but in general, a positive update.

And here is your daily dose of Natalie Rose:

Hanging out with Mommy

She always tries to move her head to get off her mask - here she got herself stuck with her face in my chest

Peek-a-boo! (Sorry its blurry, I do not have great selfie skills)

My sleepy girl

Straight to the Heart

A couple of weeks ago I found myself thinking the worst thing to witness was your child struggling to live. Well, watching them give up and not struggle is much, much worse.

Yesterday (Sunday), we walked in to hear she had another bad night and found her NAVA settings were raised again. She was still struggling a little and I made a comment about why her chin strap was off. Her nurse that day had never worked with her before and looked at me surprised because she did not know she usually wore it. It is funny because the night before one of our nurses gave me lecture about how I am my child's biggest advocate and I had to speak up whenever something seemed off because though the doctors and nurses changed daily, I was there every day to know everything going on. What is funny, is the example she is used was if her chin strap was off and she was struggling!

They got a doctor's order (they need one for most things) and put her chin strap on and she started doing better immediately. Through the night, they ran a whole series of tests and x-rayed her lungs again. Like last time everything came out looking good. She had a good day, but around 2 when I changed her diaper, I noticed she was being lethargic, but we thought it was because of the crazy night/morning she had and that she finally was relaxed and exhausted. I should have known better.

About an hour later, I experienced the scariest moment of this whole ordeal since they told me I was in labor. Her blood saturation dropped and stayed dropped for a long time. They do not like when she drops in the 60s, this time she hit 28. More concerning was how long it took her to come back up to normal levels. It felt like 20 years, but was probably only a few minutes. The nurse was in the room when it started, but when the baby starts dropping they always wait to see if they self-correct (which she usually does). When she didn't, the nurse put her hands in the isolette and stimulated her, which they usually do by either rubbing her back, moving her position, tickling her feet or anything that snaps Natalie back into it.

The scariest part was that unlike usual, Natalie did not fight or struggle to get her breath, she just laid there. The nurse was incredibly professional, but I could tell she was nervous. I was happy that we had visitors, so Jimmy was in the lobby and did not have to witness it because I know how much it would have upset him. I surprisingly kept my cool and just kept rooting her on to start breathing. She finally came back to normal numbers and the nurse checked to make sure her tubes/equipment were all in the right place and that they weren't causing the problem. They re-situated her and she seemed to even out nicely.

Jimmy and myself had decided we were going to leave early that day (3:30 - the earliest we would have ever left) to get some chores done around the house. He was waiting for me in the lobby with out bags and we were going to leave when our guests were done visiting. I went out there and told him what happened and (obviously) we decided to stay longer and make sure everything was ok.

20 minutes later, it happened again. This time Jimmy was in the room and I had a much harder time not succumbing to tears as I watched Natalie decline and Jimmy try not to panic. The second time was not as bad as the first, but still worse than any of her other episodes have been in her lifetime. So, the nurse called in the calvary. Seeing all these professionals gathered around my little baby was almost as hard as watching her breathing drop. They decided to run more expansive tests. They put in an IV to start antibiotics because blood cultures take up to two days to show infections and they did not want to wait. They took a bunch of other tests I did not understand, but I was happy that by the end of it, Natalie was extremely pissed off and fighting with them.

We waited a few hours and made sure she was still doing well and she was, so we went home. We called in a couple of times throughout the night and she did good the whole time. Today we got in and she was still steady. I was surprised to hear they were upping her feedings back to 22 (they got moved down during her troubles) and that they were doing her next EKG today. The last time they did her EKG (three weeks ago) it agitated her so much, she had her first bad day. She does not appreciate the gel they put on her or the pressure from the probe and she did have some problems while they did, but they did it as fast as possible.

When they did her first EKG, they were very happy with the size of her PDA hole (Patent Ductus Arteriosus) and thought it was close up nicely. Well, it is not closing up, it is growing larger. I was very shocked to hear this, since it was something they were so positive about when they did their first test on her. Because it is growing, the left side of her heart has become enlarged to compensate. This is (almost definitely) the reason for all the respiratory problems she has been having. They will first try to treat it with medicine and she is going on a 7 day treatment of basically just tylenol and they will check to see if closes up at all. Unfortunately, there is an age range of when this usually works and she is at the top of it. Yes, she is too old for something, go figure. So, we will wait and see, but most likely she will need PDA ligation surgery. It is incredibly routine, and I felt much better when they told me they do not even bring her to the OR, but do it bedside, but of course, I don't like it.

I am glad they found a fixable reason she has had a lot of trouble this past week, but the past 24 hours have been unbelievably stressful. I forget how stressed I am in general right now, and this just makes it so much worse. The tension of watching the two bad episodes definitely took their toll on both Jimmy and myself. I held myself together until we got to to the elevator to go home and then let myself burst into tears on Jimmy's shoulder. I literally felt like a rubber band about to snap, but felt much better after a good cry. I know, even with this setback, she is still doing extremely well. We have met other parents in much more dire situations and know we are very lucky. It is just incredibly difficult to stand there helpless and watch our baby stop breathing, wondering why I just can't breathe for her!

Otherwise, there is a lot positive going on with Natalie. Even with her heart trouble, she is still a feisty little girl who continues to grow and gain weight. When she was born she was 13 inches long and 1 lb 14 oz. She lost a few ounces in the beginning, but now at almost 4 weeks she is 14.5 inches long and 2 lb 8 oz weight! They are very happy with her consistent weight gain and said it will continue to help strengthen her lungs. She is opening her eyes a lot more often and I cannot get enough of those little peepers.

So, maybe this is not the boring long haul I was hoping for last week, but we have plenty to be grateful for tonight. We will wait and hope the medication works, but I will, of course, keep you all updated.

We did not get many photos (surprisingly, that was not a main concern), but here is one photo for your daily dose of Natalie Rose:

Sleepy after her bad episodes and getting an IV put into her arm

Happy Valentine's Day

This time last month, I joked with Jimmy that next year he would have two valentines. Well, we got to that a little earlier than we thought!

There is not much to update on with Miss Natalie. She is still on her higher levels of NAVA. They did up her feedings to 22 mls every three hours. They started diuretics for the fluid in her lungs. Yesterday they said she was puffy and it had something to do with some vitamins/minerals she is deficient of because she would have gotten them in the womb, so she is getting supplements for that. Today and yesterday have not been great days, she has been having more episodes with the bradycardia dips and desaturations. There is a lot going on with her all at once and it is hard for her to keep up. Basically she is acting like a normal preemie, but we have been spoiled with her all-star preemie behavior thus far. Almost every time she has multiple episodes at once there is something wrong. Usually either one of her tubes is out of place, she is filling her diaper, she has air in her belly or something like that. It is just one more thing for her to focus on and it is too much. It is good that it is usually happening for a reason and they are happy about the fact that she is not just doing it randomly.

Yesterday I was not able to hold Natalie because she was not doing great and the nurse wasn't comfortable taking her out of her isolette, which was a major bummer. Today I was able to do Kangaroo Care with her and she stayed out for about 3 hours. It was probably the best way to spend Valentine's Day possible. The nurse we had today is one we have had many times and we are very comfortable with her. She taught me how to tickle Natalie's feet (she does not find it amusing) when she starts falling in a deep sleep and her heart rate drops. I know I am doing a good job when she starts to kick me.

So now we are just waiting on the diuretics to do their job and for her to get strong enough for them to start lowering her settings and see if she can handle it this time. Nothing else crazy to add, but as I have said before, boring is the goal.

I hope you all had a wonderful Valentine's Day and stay safe in this crazy weather. We can't wait for the warmth of spring and for baby girl to be ready to join us at home!

Daily(ish) dose of Natalie Rose:

Kangaroo Time!
Also, my Valentine's present from Jimmy. July (Me) + April (Jimmy) + January (Natalie). Love our little family!

Stretching out while waiting to be tucked in.

Comfy, cozy baby girl.

They Said There Would Be Days Like This

When I walked into Natalie's room yesterday (Wednesday) morning, the nurse looked up and saw me then said, "Oh good, the doctor wanted to know when you got here, she wants to talk to you."

The concern must of shown on my face (none of the doctors have ever looked for me before) because the nurse was all, "No, no, everything is fine. Natalie just didn't have a great night last night and they had to run some tests, do xrays and adjust some of her settings."

She gave me a brief rundown, said all her tests came out great, but they did bump a few of her settings up and her xray looked a bit hazy. I decided just to wait for the doctor to explain everything. She told the doctor I was there, but she was still on rounds and would come by later in the day. That, of all things, made me feel better because she was not concerned with seeing me right away.

So, she had a great day. Her NAVA settings were raised to a higher level (they had gradually been brought down the more she could do on her own) and they lowered her feedings just for the night and put them back to normal during the day. The fact that she was doing really well on the changed settings was good because it showed there was not any large underlying problems, but she was getting tired of doing everything on her own.

Her doctor came and spoke to me and basically said everything the nurse did. She had a bad night where she was desatting and bradying often and deeply. They ran tests which her results came out beautifully. The xray of her lungs does show that there is some fluid in them which is not abnormal for a preemie. It has something to do with the hole in their hearts pumping oxygenated fluid out that gets into their lungs. I do not know, she kind of lost me medically, but I got the gist: her hole needs to close up to keep this from happening. She has a "medium" size hole, and it should close on its own, but they are watching it. For the fluid they are going to start giving her diuretics. They said some babies only need them for a few weeks, some babies go home still on them and some babies end up having to get surgery, but she does not foresee the surgery route for Natalie (though it could of course happen).

I told Jimmy that I know I have been tough and handling things well, but if they have to do surgery, even if it is super routine to them and they have done it a million times blindfolded, that I will not be tough that day! But so far it looks like we will not have to test my nerves and hopefully that stays the case.

The doctor said she was still doing really well, that this is not a real set back. They keep drilling into my head that she is still really young. Micro Preemies are babies before age 28 weeks, and she will be 28 weeks gestation this Friday. So, she is still really young for the type of breathing she is doing on her own and how little assistance she uses. Even though it is 3.5 weeks later, if she was born now, she would still be considered extremely early.

As for today, she had another great day. With her settings raised, I feel like she has relaxed a lot more and everything just seems easier for her. Obviously, they have to keep pushing how far the babies can go on their own. They cannot get comfortable letting the machines to the work for them, so it makes sense that occasionally they will push her a little past what she can keep up with.

I did not hold her yesterday. Since she had such a crazy night, I did not want to put the stress of moving her in and out of her isolette, so I just let her relax. I missed holding her like crazy though and was happy to do Kangaroo Care today.

Other changes: she is huge. She really looks gigantic. Anyone who has come to visit her this week is a little shocked when they see her. Yes, she is only 2 lb 4 oz, but somehow she looks twice the size of when she first was born. They do not measure her length, but she has definitely grown. She was 13 inches long when she was born, which actually is pretty long considering her due date, so I am curious what she is now.

She has progressed to slipping her fingers through the velcro straps that hold her mask on her face and I think getting very close to figuring out how to get it off. They said no matter how complicated they make the masks, these little guys find a way. She also swats at her tube that hangs above her (very like a cat) and sticks her butt up in the air pushing onto her knees. When she gets mad she yells at everyone and she seems confident that it is ferocious. It is pretty much the cutest little mewl in the world, but we will let her pretend.

I have been meeting Jimmy home for dinner and then he runs by at night and hangs out with her. I think he likes the quiet of the unit at that time of night and he just relaxes with her. He just got back from doing that and told me how she opened her eyes and really looked around again like she did the other day with him. Apparently, she opens her eyes for Daddy, though the nurses did tell me they will do it more when the room is darker because the brightness bothers them.

So that is the 411. Hmm I guess I am dating myself with the '411' term and anyone born after 1995 has no clue what I'm saying, but that is the info on Miss Natalie. I was stressed about her minor set back, but they told us since the beginning that it would be 4 months of a dance, two steps forward and one step back. So, we will she where she goes from here. She has had two such good days I would not be surprised if they started lowering her levels again. Of course, I will keep you posted.

On a completely unrelated tangent, I just have to say that yesterday this blog reached 10,000 page views. Not visitors, but how many times her page has been opened (they then break it down by blog entry, each one reaching 300-700 views per). Considering I created this on a sleepless night in the hospital to keep my family posted and as a journal for myself to chronicle this journey, I am amazed with how many people have read and continue to follow our sweet girl's progress. We are forever grateful and know you are all cheering for her. Keep up the good work - the prayers are working and will carry myself, Jimmy and Natalie through these months with more grace than we could ever achieve on our own.

And the real reason you stopped by, the daily dose of Natalie Rose:

Daddy and Natalie during the nighttime visit

3 Weeks

Day of Life - 21
Corrected Age - 27 Weeks 4 Days

That is how they start rounds every morning when they talk about Natalie. I find "Day of Life" both poetic and sterile at the same time, but I have gotten used to their language. The "Corrected Age" is what her gestational age is. It is also the term they will use while she is an infant to describe her age. So when she is 6 months old, her corrected age will be 2 months old. Even though she was born January 20th, she will developmentally and size wise follow along the path of a baby born in the beginning of May. I am learning so much through all of this!

Anyways, today (Tuesday) Natalie is 3 weeks old. I cannot tell you if the time has gone fast or slow, because it varies by day and sometimes by hour. On occasion, I still turn to Jimmy and go "so, we have a kid?" It is all so crazy. From talking to friends and family members, I know that is normal, especially with the first child, that it is almost unbelievable, but it is still a surprising feeling.

Natalie has been doing very well. We just talked to her night nurse (she is weighed at night) and her current weight is 2 lbs 2 ozs. They upped her feedings to 21 mls and they are very happy with her weight gain. She has been desatting and bradying more the past few days, but they said it is nothing to be concerned about (they say that a lot, but they promise they would tell me if it was otherwise).

One of the ways they keep her from having the desaturations and bradycardia dips is to keep her mouth shut. Since the CPAP goes through her nose, if her mouth is open, then a lot of that air is going straight out instead of into her lungs. However, at so young she really does not have the strength to keep her mouth shut, especially when there is air trying to escape (not to mention the 2 tubes they have going through her mouth as well). They tried a pacifier, but she has long since figured out how to wiggle away from that. So they often resort to a chin strap. Which is a nice way of saying, they take a piece of cloth and tie it around her head to keep her mouth shut (picture old fashion toothache care with the fabric tied around their heads).

When I came in yesterday (Monday) morning, her nurse mentioned that she had 6 bradys the night before, but they still left her chin strap off. See, a lot of people do not like the chin strap, they feel bad for the infant and I know nurses try to keep it off. One of the nurses even called it barbaric (she was joking, mostly).

So, I said "just keep her chin strap on, it keeps her numbers better, so she rests more. She has been alive for 3 weeks and has had one on for most of the time. She does not know it isn't normal, so I am not concerned about her not liking it".

The respiratory therapist and nurse both laughed real hard. The therapist pointed at me and said, "I'm going to like this one. Apparently, she's not going to take any crap".

So I asked if this was something mothers often complained about. They said this is easily something that would be complained about, and that I couldn't even imagine the things parents complain about with their babies. I should not have been surprised, people complain about the most ridiculous things, but really, if it is something that makes my baby progress and grow better, than why would I be against it? I am sorry if it causes some discomfort, but she really does not seem to notice. I mean her whole body has wires and tubes and a mask with prongs up her nostrils, I do not think this is doing any long term emotional damage to her.

Needless to say, they put her chin strap back on. But don't worry they do give her breaks without it.

Anyways, I caught her sucking on her pacifier today and see why Jimmy got so excited, it was adorable. Seeing her do such a 'normal' infant trait that she has been unable to do is extremely satisfying. She also looks gigantic, well in comparison to a few weeks ago, and I cannot believe how big she will get before she comes home.

As for Jimmy and myself? We are trucking along. Some days are better than others, and some days are amazing. I still burst into tears occasionally (something any person sleeping on a newborn schedule can relate to), but I think we have awhile before that goes away and honestly, I find those moments pretty cathartic.

That is the brief update on her day. Sorry if it is a little boring, but boring is exactly what we are going for right now.

And of course, your daily dose of Natalie Rose -

Here is a link to the little video of her opening up her eyes (she can only open them a tiny bit):

Natalie Opening Her Eyes Video

Sweet Natty Bear (see the white chin strap her mean Mommy lets the nurses put on her)

Kangarooing with Daddy

Yesterday (Sunday) we did not get in to visit Natalie until late, around 1 pm. I had left my car there the night before and drove with Jimmy, so I did not have my car and Jimmy has resumed his CCD teaching duties and had class from 10:30 - 12. I felt bad for being so late and then reminded myself that she has no clue whatsoever. It was actually nice to have a relaxing morning where I let myself sleep a little extra. Jimmy teaches CCD to 6th graders at Resurrection Parish and the CCD staff has been (unsurprisingly) very supportive the past few weeks. 

We headed out to the hospital and when we got there they said it was a good time to do Kangaroo Care if we wanted to. They like to do it during the 2-hour period that her food is going through her feeding tube, so they do not disrupt her otherwise. Jimmy has held her normally twice before, but not for awhile and never in the Kangaroo fashion. I offered for him to do it this time and he was all like, "oh no it's fine...blah blah blah". But after being together over a decade, I could tell he really wanted to. When I called him out on it, he said of course he did, but he did not want to take away my time with her. I put him at ease that I have the whole work week to hang out with her, and this really is his only time on the weekends. He happily jumped at the chance. 

She spent the first couple of minutes fussing, she is used to laying on me, so I am sure she was like "what is this hairy, flat chest?" But eventually she calmed down and spent a good 2 hours on Jimmy. I was in the waiting room since some of my family came to visit and there can only be 3 at a time in her room (including me and Jimmy). Apparently, she was super showing off for Daddy though. They give her a tiny pacifier to help keep her mouth shut (her breathing mask works better if she isn't letting all the air out her mouth). She immediately knocks the pacifier out of her mouth, so she really only uses it when we are holding her and we hold it in place. Well, for the first time ever, she started sucking on it. Hey, when your born 16 weeks early, every new development is exciting, even sucking. 

Then, since that was not enough showing off for Daddy, when they put her back in her isolette (I was still out of the room), she really opened her eyes. She only does it for a few seconds at a time like once a day, but this time she actually looked round and kept opening them for a couple of minutes before she went back to sleep. Jimmy took a video of it, so once I get that off his phone, I will post it here. 

So, Natalie and Daddy had some great quality time. I was happy to see how excited Jimmy was over everything because I know it has been hard for him going back to work and not able to be here for very long everyday. 

Otherwise, her progress is the same, going slow and steady like it should be. They raised her feedings, and she seems to be struggling a little adjusting and her numbers drop a little more often during them, but nothing to be concerned about. At this point we are getting to the long haul where there won't be major (or even sometimes minor) changes daily and we just have to sit back and wait as she continues growing and developing. 

The nurses have warned me that after around a month a lot of moms start slacking with pumping milk and I can understand why. It is hard work, no matter what you are doing or where you are you have to stop every 2-3 hours (and be near a pump, a hospital grade one at that) and all your body really wants is your baby there, not a machine. In the beginning, I was happy to keep Natalie here and go home knowing she was being taken cared of every night. But now, every night gets harder to leave her and I cannot wait to bring her home. So I guess the first couple of weeks was the sprint, where everything happened fast and changed constantly. We are settling into the marathon portion now and it is going to take a lot of patience (my worst attribute, but I am working on it) and support to get through the next couple of months without going bonkers (technical term, obviously).

But enough complaining from me. I know how lucky I am that I gave birth to such a strong girl. Every week the doctors rotate here, so every Monday a new doctor looks over her file and says a variation of the same thing, "so young and no incubation, only ever been on CPAP, you couldn't ask for better". We couldn't ask for better and we know it, and thank God for it every day.

And, of course, your favorite part, your daily dose of Natalie Rose:

My 2 favorite people in the whole world - Kangaroo time with Daddy!

She has gotten so big, but she is still so tiny

Hello World! Miss Natalie Rose opening her eyes for the camera!
(She hasn't opened them since, they say it is too bright for them)

Rosie Posie

Natalie had a phenomenal day yesterday (Friday). There is not much I can say. Her numbers stayed level the entire time other than at the end of her feedings where they would have little dips which is really no big deal. We did kangaroo care for over 3 hours and she was put back since she was out so long, not because she was having heart rate / breathing issues which is the normal case. I mean there is literally no updates there. They did not really change anything of her situation yesterday, feedings stayed the same and they kept the same level of NAVA (they have been slowly decreasing it until she does not need it). I think the fact that nothing changed was a large part of how well she did, she had a break from her environment changing which does not happen often.

She has such a little personality, I cannot get over it. Maybe it was naive of me to think she wouldn't at how young and underdeveloped she is, but I was very wrong. She seems to have a sweet disposition and the nurses tend to fall for her. At the same time, she is very determined to get her wires and CPAP mask off of her and she actively works at removing them. She is not strong enough yet, but the nurses say it is only a matter of time. Her resolve is quite impressive.

Today she had an average day. Her numbers were good, but not as solidly stable as yesterday. She had a new nurse today who greeted me with: "Oh I have never worked with her, but everyone knows Natalie. A 24-weeker who never got incubated? She's famous. That would be impressive even with a 25-weeker." So I really can't complain because she had a good day instead of an incredible one.

Her roommate she has had for the past few days got discharged today. This is the first time I have seen one of the babies discharged and I totally listened in on the process. I turned to Jimmy and asked how many babies do you think we will watch being discharged from our side of the room before we leave. It is our version of gallows humor. "Gallows humor" sounds sort of dark, but you know what I mean. I really liked this little family we shared our room with and totally created my own version of what their life is like in my head, but instead of being jealous of them excitedly buckling up their very healthy newborn and going home, I found myself being genuinely happy for them and wishing the best for them (I guess I am not as petty as I thought).

Otherwise, everything is just moving along. Natalie will not have any big tests for awhile because they need to be 30-32 weeks for a lot of them (and she just hit 27 weeks). It looks like she will go off the NAVA next week. She was not on it to begin with and it really is just a little bit of an assist when she forgets to breathe, but I am a little nervous about that. It is crazy to be too concerned considering how closely they watch her, but I can't help it.

For Jimmy and myself we have made a huge effort in the past couple of days to be more cautious of our timing. A few days in a row this week were just too long and I was bringing myself to the brink of exhaustion which is unnecessary, but it is easy to do if we are not careful. We made sure to leave at a decent time yesterday night and actually got around to tidying up some of our house (I can actually see my dining room table again!) And today we made our hours of when we would be there and really stuck to them. During the week we were just coming home and crashing, but as I reminded Jimmy, there is no "weekend" where we can get everything done, so we really need to make time at night to accomplish things or our house/life will get out of control. We are not 100% better, but we are making a conscience effort.

Tonight we had a 6 oclock date to see the Spongebob movie with my (almost) 5 year old nephew and some family. It was a fun 90 minutes of decompression and listening to that little boy cackle uncontrollably was an amazing balm.

So, here's to another great couple of days, and hoping for many more!

And of course, your daily dose of Natalie Rose:

And a bonus, Natalie's cousin Scott enjoying the finest Hollywood has to offer (he has a spider painted on his face from an event he went to earlier today):

Good Day

Yesterday was a great day. All her blood work came out good, so she has no infections. She is still a lot more passive, but they said she might just be feeling better without her IV line in and at the same time maturing and getting used to this new environment. They were happy I spoke up when I noticed a difference. As they said, she has a different doctor and nurse everyday, and I am the only constant, so if I ever notice anything off to let them know.

She officially weighs 2 lbs 1 oz, so we are moving in the right direction. They lowered the level of NAVA she is relying on and in a few days they will take her off entirely where she will be just on CPAP with no extra aids. They have moved her feedings up to 18 mls, which is great though I am feeling the pressure to keep up on making enough milk, but so far so good.

I was sitting in the lobby for a quick cup of coffee this morning when a woman came up to me who I haven't met yet and asked: "You're Natalie's mom, right? She's a stud." She said she recognized me from being in her room all the time and just wanted to tell me how amazing Natalie has done and what a special little girl she is. She is a NP in the NICU, she hadn't worked with Natalie but had just heard about her.

That conversation made me feel good. All the nurses and doctors have been telling me how good she is doing, but this woman would not have felt the need to make the effort to tell me if she did not believe it. 

We had not done Kangaroo Care in a few days because she struggled with it a couple of days in a row. I have been just holding her swaddled like a normal baby. We tried Kangaroo again last night at her 5:00 feeding and she did super well. She lasted over 2 hours until her stats went nuts, which basically means she has handled as much stimulus as she could and it is time to put her back. But we were really happy with how well she did. 

I was talking to a nurse this morning and she explained the whole heart rate / breathing issues and why this is normal until 32-34 weeks gestation. She said in utero the baby obviously does not have to breathe. That at around 32 weeks they practice breathing, but they do not need to and they only practice whenever they feel like it. They breathe in amniotic fluid and then go about their business. So her brain is not even remotely prepared to breathe full time before then. As of today, she is at 27 weeks gestation age so she is doing super well. 

As for myself, I have made myself quite cozy here in the NICU. It is not remotely lonely because I have become so friendly with the so many of the nurses. I am still juggling my schedule with Jimmy coming at night. My days have been a little too long this week and last night I crashed a little (more emotionally/mentally than physically) but it is okay as I expect to have my good days and bad days. I cannot believe that I am going back to work in a little over 3 weeks and cannot imagine how tired I will be then, but that is a worry for another day!

Today I am feeling very positive in general, I mean, she is doing so incredibly well. Now it is time for me to go to the dentist (lucky me), so thank you for checking in. Miss Natalie is an extremely lucky girl to have all of you rooting for her!

Not-so-daily dose of Natalie Rose:

Sleeping cozy

Kangaroo-ing

Getting work done and being mad about it

  

2 Weeks Later

Yesterday (Tuesday) I came in to a very passive baby. I was very positive having had two great days in a row and happy it was two weeks already because it made me feel that maybe 16 weeks would not be too bad. Then I changed Natalie's diaper and I joked about how she was not fighting me, she literally just laid there and let me do my thing. I noticed she was doing this with her nurses as well and to be honest it made me a little nervous. Where was my feisty girl? I told the nurse working with her for the day and she said not to worry because all of her numbers had been good. This was the first day of this particular nurse working with Natalie, so she didn't know her personality. She told me not to worry, her stats are good, and she was being a nice, quiet baby. I told her that was exactly the problem. When they did rounds that day, I made sure to mention it to one of the nurses that was on rounds with the doctors. She told me everything looks ok, but it is really good that I am noticing these things and they would keep an eye on it. So I felt better.

I got to hold her for two hours yesterday, I just held her regularly, not Kangaroo Care, because on Monday she kept desatting the whole time, but it was still really nice. Her desats and bradys are happening a lot less and seem to only happen at the end of her feedings, which they say is normal because her body is working hard to digest her food and loses track of her other systems. So we have been very happy with that. 

They took her pick line out and she is completely disconnected and off the IV. They also took her off humidity and raised her feedings to 15 mls. All in all, a lot has happened in a couple of days and it might take a few days for her to adjust. She lost 5 grams from her 2 lbs, but they said that was normal when they first go off their IVs and she should pop right back up. 

We had our first roommate yesterday. A pretty little girl who was born 6 weeks early who just needs some assistance because she gets too tired and decides to sleep rather than eat. She should only be in the NICU for a week or so. It seems they move these older babies often to accommodate the current nurses, so they are in the same areas of the wards and do not have to run around as much to watch their patients. I'll be honest when they rolled her in on Monday night as we were leaving, I started crying a little and Jimmy (to his credit did not go "Oh, what now?!") asked what was wrong. But just seeing that 5 lb, chubby, rosy, cherubic little healthy baby (who probably looks small compared to full term infants) made me a little sad and I will admit, a little jealous. Ah well, I am only human.

She was with us just for a night and a day before she got moved somewhere else. When I arrived on Wednesday they were bringing in a new, full term baby whose cry was quite impressive for his age. He was having eating problems though, so once he got his first taste of formula, he was happy. With his family things got a little crowded and I will admit a little stressful for me. I have been spoiled for two weeks with my own room where I could curl up in the only recliner and write my blog for you good folks. Luckily he was only with us for the day and when I came back tonight with Jimmy they were gone. 

Today, I was happy to see that Natalie was a bit more lively than yesterday. Still not 100%, but she put up a decent fight when I changed her diaper. The nurse promised she was being rude and hitting her, but it still was not full force. Later that day her doctor stopped by to check on her and I told her about my concerns. Her response?

"Well, I wish I knew you felt she was off yesterday. I was a bit concerned about her because her numbers were good, but just a little off. If I knew her behavior was different, I would have had them run tests to make sure she isn't fighting an infection." 

I kept myself really well composed, but in my head I was doing a bit of screaming about how I told my nurse and mentioned it to someone on rounds, but hey, I'm a pleaser, so I just smiled and nodded. We talked about how if I still felt she was off later today, they would run tests. So I learned my lesson that I should go directly to the source if I am concerned. I found her before I left and told her that she still wasn't 100%, that she was better than yesterday, but still a little off. The doctor says they have changed a lot for her, so she might just be adjusting, but they will run the gamut of tests tonight to double check. The NICU is big on "better safe than sorry". And I completely agree.

As for us, we are adjusting to our new schedule, or not adjusting, but surviving. I am trying to go in the morning until lunch time and then go home to get a couple of things done and meet Jimmy when he gets home for work so we can go back to the hospital so he can visit. I am probably not leaving early enough in the afternoon and going back after dinner is awfully tiring, but we will get used to it. I am already worried that time is going too quickly and in 4 weeks I have to go back to work (but at the same time I cannot wait for time to pass to she comes home - ahh catch 22).

Well, they are wheeling in a new bed, so it looks like we should be expecting a new roommate sometime tonight. Fingers crossed it is of the quiet variety.

Here is your daily (bi-daily) dose of Natalie Rose:

Daddy holding her hand as she gets her IV taken out