Eye-popping good day

Today was a pretty relaxing day. I don't know if it was because she had the same nurse for the 2nd day in a row or she just felt good, but we had a very low key day with a lot less of her alarms going off.

We got to do an hour of Kangaroo Care. And the nurse taught me that if her numbers ever started to go low, to rub her back and it would wake her up enough to get back up. It totally worked. Her machine would start beeping, so I would rub her back, and by the time she started whimpering at me (for annoying her) her numbers would be good again.

 

 

 

Enjoying some Kangaroo Care with Mama

The most exciting event of the day was when my aunt and cousin were visiting. We were peering into her isolette and all of a sudden her eyelid popped open. It was very exciting and we ran and got Jimmy who only saw it for about a half second before she closed her eye and went to sleep. We left about 20 minutes later and she was sleeping the whole time, but the way the eyelid unsealed, we should be seeing open peepers when we arrive tomorrow (I can't wait).

When she was born there was no pigment to her hair, so it was all white. Some of it still is, but we noticed the hair on her head is getting dark again. I love this because it is a sign that she is maturing and continue to develop like she should be.

You can sort of see the dark hair right under her cap

So, all in all it was a good day. We had another nurse tell us today she wants to ask to be her permanent nurse when she is in the unit. I am not sure more than 1 nurse can do that, but it is flattering that they all fall in love with our sweet girl (though considering she fights with her nurses every time they touch her, I do not think they believe she is so sweet).

As for us, we had a very relaxing day. The weekends are so low key, and without Jimmy's work we can keep a flexible schedule.

Side note: for anyone reading this who is or ever will be using a breast pump. The lactation consultant I spoke with yesterday gave me all sorts of tips, but the best was she told me about Pumpin Pals shields. Apparently some guy watched his wife struggle with those stupidly shaped cone shields and invented a better design. They are a smaller company so you can't get them in stores, but you can get them on Amazon. I had them overnighted and got to start using them tonight and let me tell you, this guy is a genius. A million times more comfortable and helped produce more milk, so I highly suggest, even if you do not have problems, to order them and give it a try.

Enough of my soap-boxing. I am very grateful for such a wonderful day and for being able to go to sleep feeling so positive. I know all days will not be this easy, but I hope most of them are.

Here is your daily dose of Natalie Rose:

  

10 Days Later

10 days down, 100 to go? Eh..we're not going to count!

First and foremost, we came home last night and look what we got in the mail:

We got really excited. She's official now. Birth certificates take a couple of weeks, so this was the first real document with her name.

We had a relaxing night. I had some problems pumping and got super frustrated (which apparently doesn't help the situation). So we called and made an appointment with the lactation specialist in the NICU. I will keep the details of that meeting to myself because I would like my friends to have children in the future and don't need to scare them off.  : )

This morning we had another good report. Not all of her food stayed down so they are not going to up her food again for another day. All her brain scans, heart scans, and blood work from the past week came out good. The doctor said that basically right now, they are going to try to leave her alone as much as possible and let her gestate.

We did not do Kangaroo Care today because of the problems yesterday and her food not staying down, they did not want to overstimulate her. But we will be back at it again tomorrow.

She has created quite a reputation for herself with the nurses. She seems to have charmed them with a mixture of cuteness and trouble. She actively tries to hold their hands away from her when they are adjusting her tubes and wires, and screams like a banshee. Today she has also started trying to pull her mask off her face, so we will see who wins these battles.

So, yes, check off another good day for Miss Natalie Rose. Jimmy and myself are doing well. We have found a rhythm and it seems to be working. Though I woke up today tired, cranky and weepy. I may or may not have started crying when Jimmy did not pull into the Dunkin Donuts parking lot (I really wanted coffee and going to the next one on Rt 10 was not acceptable). It was naive of me to think these days were behind me because I have had a really good week. It has only been 10 days, and this is exhausting even if we are really positive about it. I am just so unaccustomed to not having control over how I react to everything! We can all laugh at me when it is day 85 and we look back to day 10 where I was surprised that exhausted and weepy days were still ahead.

Until tomorrow, here is your daily dose of Natalie, lounging with her ankles crossed like she is on a beach chair:

Jan 28 - 29

I went home last night a passed out, so I am sorry if you missed your daily dose of Natalie Rose.

Yesterday morning Jimmy dropped me off and went into work for a 1/2 day. That is what we are doing for the rest of the week before next Monday when he goes back full time.

Yesterday morning's report was not great. She had a rough night. They ended up doing blood work that night that they were supposed to do the next day to make sure she had no infections starting. All her blood work came out good, so that is plus. They said it might have been as simple as one of her tubes was bothering her, and therefore she was having problems worrying about other things, like breathing.

Yesterday she had a pretty good day. She still drops her heart rate occasionally but the NIV NAVA is doing its job. We got to do Kangaroo Care for the 2nd time and she got some great quality time with her Mama, as she laid bare on me for 2.5 hours.

Apparently, these preemies have a hard time getting into a full REM sleep and that is part of why they do Kangaroo Care. While I was holding her she had a big heart rate crash that scared the living daylights out of me. However, they said, in its way, it was a good sign because while relaxing on me she got into a true deep sleep. The fact that she could do that was a great sign, but she was so asleep her brain shut off and it is not developed enough to sleep and keep her heart rate going at the same time.

Otherwise, she has a pretty uneventful day. By the time Jimmy came by in the late afternoon she was all settled back in her isolette and doing good. They usually do very well after spending time doing the Kangaroo Care.

Last night when we called in around midnight (we call in before we go to sleep for the night), we got a great report and this morning it has not changed. She had a great night. Very minor bradycardia and desaturations, they were able to up her feedings, and she had gained back all her weight from birth.

About 15 minutes ago, I luckily was in the room when the NICU team came to do rounds. So I got to hear them all discuss her stats and progress. They have everyone on these rounds, the main NICU doctor, the respiratory doctor, and other people I do not know what they do. All her stats were good, as they have been. They all raised their eyebrows and took notes at her numbers and steadiness. Asked me if I had any questions, which at that point I didn't. And Dr. Schenkman kept talking about how good she is doing and from everyone's reaction she really is. They are very happy with her progress and that by next week she should be getting full nutrition from milk and not need the extra tube giving her extra nutrition now.

So same old here at Morristown Medical Center. Here are some pictures, because that is the best part:

Kangaroo Care:

Just hanging out in her isolette:

Week 1

Happy 1 Week Birthday to Natalie Rose!

I cannot believe it has been a week already. This time last week, I was praying to make it through the first 24 hours and somehow 7 days went by. 

If you read yesterday, you heard about some of the heart rate trouble Natalie has been having. They explained it to us that when a baby is that young, her brain is not developed enough to keep all her systems working at once. So basically, she was just getting overloaded. They think part of it was the stress from all the tests they had to run (which so far have all come out good). They gave her an extra dose of caffeine, but she still struggled through last night, so this morning they put her on a different CPAP machine that helped her out more than she was getting. Her CPAP is now hooked up with what they call NIV NAVA.

NIV NAVA - Neurally Adjusted Ventilatory Assist is a mode of mechanical ventilation. NAVA delivers assistance in proportion to and in synchrony with the patient's respiratory efforts, as reflected by an electrical signal. This signal represents the electrical activity of the diaphragm, the body's principal breathing muscle. 

So basically it monitors her diaphragm and if hers doesn't contract in a 3 second period of time, the machine gives her a nudge. So she is still breathing on her own, but with a little help so she doesn't tire out so easily.

Jimmy was very stressed out by this development, thinking we were taking a step back. But after talking to the nurse, they told us this is completely normal and the fact she has not had to go on a breathing tube is a huge success. The desaturation that she has been experiencing (and still does while on NAVA) is completely normal and will continue to happen until close to 34 weeks gestation. So basically we just have to get use to this because we have another 9 weeks of it being considered "normal". I feel better that she has the extra assistance because it is so heartbreaking to sit and watch her little body struggle. 

On the extremely positive side, Natalie has been accepting milk in her stomach since they started feeding her. Technically her stomach was not prepared for it, so they introduced it very slowly. They started out just giving her 2 mls through a feeding tube. For scale, there are 5 mls in a teaspoon, so it is a tiny amount. Over the past few days, they upped it to 4 mls and then yesterday to 6 mls every 3 hours. Her stomach has been accepting it, with very little coming back. This is very good news and in the past couple of days her weight has returned to the 1 lb 14 ozs she was at birth.

Yesterday, with everything going on, we did not get to hold her, but today we got some good cuddle time while they were doing their weekly clean of her isolette. They always worry about the mother holding the baby, but I made sure Jimmy went first and got some good time in. The breathing problems have really stressed him out and I thought holding her would make him feel better, and I was right. The nurse seemed impressed that I was letting him go first and giving him the majority of the time, but I think sometimes people discount how much the father is going through as well. I could tell his time with her really helped and he left feeling a lot more confident about the situation. 

She loves sitting with us and whenever we talk while we are holding her you see her eyes moving around behind her closed lids. When I did hold her, she held onto my finger the entire time. There was actually pressure from her squeezing it and they had to unwrap her hand from it before they put her back in her bed. I cannot begin to explain how amazing it is to feel her using her strength to hold onto me. 

Here are some pictures from today:

Natalie and her Daddy having some quality time:

Jimmy changing his first diaper for Natalie:

Natty Bear holding on tight to my finger and not wanting to let go:

Pictures 1/25/15

Just want to say a big thank you to our good friend Kathleen Kamphausen for the beautiful pictures of Natalie Rose from yesterday (January 25).

Our first not great day

Today was our first 'Bad Day'. And to be perfectly honest, I do not think it was that bad of a day, but it was the first day there wasn't real progress. Occasionally, Natalie has been 'desaturating,' this is normal and expected of a preemie. Her heart rate falls very low and then it comes back up. The good news has always been that she can get it to come back up without assistance. Today it happened more often than usual and a couple of times it took a few minutes to return to normal. They said she is OK, but it was really scary to sit there and watch. The 2 times it took awhile to return, the nurse went and got the Doctor, which of course made us more concerned.

They still consider her doing absolutely excellent so far. They have warned us since the beginning that it will be a long few months of taking steps forward and the occasional step back. Luckily, we did not have to make any changes that could be considered a step back. The only thing they decided to do was give her an extra dose of caffeine. They think she is just really tired from breathing on her own and some of the tests they ran this morning.

I know we will have bad days that are much worse than today and we have been incredibly lucky that everything has been going so well. We are very positive because they are still so happy with her progress and comment on how strong she is. We are very proud of our tough girl.

We had to make the decision around 5pm whether to go home or stay overnight. The hospital urged us to go home, that she would be OK and we would be back tomorrow night after the snow was cleaned up. It was a hard decision, but we know she is literally in one of the best NICU's in the entire country and trust them to take care of her.

Here she is being cozy -

Kangaroo Care

Today was a pretty uneventful day. Natalie was similar to the day before (which is good). We had tons of visitors and now me and Jimmy are wiped. Some good friends have brought us trays of food and let me tell you, it is very much appreciated. Not having to worry about making dinner or just eating drive-thru junk is a blessing - thank you all!

The main event for today was we had our first session doing "Kangaroo Care".

Kangaroo Care - a method of holding a baby that involves skin-to-skin contact. The baby, who is naked except for a diaper and a piece of cloth covering his or her back (either a receiving blanket or the parent's clothing), is placed in an upright position against a parent's bare chest. This snuggling of the infant inside the pouch of their parent's shirt, much like a kangaroo's pouch, led to the creation of the term "kangaroo care."  This method has been proved to help in both emotional and physical ways for the baby (and the parents).

We will do this for around 1 hour a day from here on out, probably longer as Natalie gets older. The NICU firmly believes in the practice, but waits until the baby is stable enough to begin it.

I do not think I have been as relaxed during this entire experience as I was during my hour holding Natalie to my chest. She seemed to really like it too.

Otherwise, today was pretty uneventful. They raised how much milk they were feeding her, which is good because it means her body is accepting it. She even gained a few grams back to her weight.

Leaving her was extra hard today for me. I guess it just depends on the day, or maybe the fact that I have been able to hold her and be close to her, or maybe I am just rundown and tired, but I am eagerly awaiting morning.

Now we just have to contend with the blizzard we are supposed to be getting over the next couple of days. So, we are packing our bag and hunkering down there, so we do not get stuck home.

Saturday, January 24

Today was a big day. Well, to be honest, everyday is a big day, but a lot happened today.

Natalie was able to get her umbilical line out. They kept it in until they were sure they were not going to need it again because they would not want to have to replace it. The fact that she was ready to go off it is a good sign. It seems every day they are telling us progress that is "a good sign" and they decided not tell her what her gestation age is, because she is working on her own schedule and doesn't seem to know she is ahead!

Today started off a bit crazy with the snowstorm that dumped a half a foot of snow on the ground and then our house got super cold and we realized we were out of oil. So, after a hectic morning, we finally got to the hospital and both promptly passed out on the couch next to her isolette (what they call her incubator). We did not realize how tense and stressed we are until we get to her room and feel it all slide away. I really cannot say enough positive things about the NICU staff at Morristown Medical Center, but if we win the lottery one day, it isn't going to a beach house.

We had already decided to get Natalie baptized at the hospital. We spoke with our church and with the hospital to figure out the best way. So we scheduled a "mini" baptism today that executed the rite, but when she gets out of the hospital we will have the traditional church ceremony with oil and god parents and everything.

It was a beautiful ceremony and they relaxed the visitation rules to allow the grandparents to all attend. She held onto my finger with her tiny hand the whole time and of course I was a bawling mess. The priest welcomed her as the newest member of the Catholic Church and blessed her head with holy water and gave us a beautifully knit white prayer blanket to stand in as her baptismal white.

Because Natalie got her umbilical line out, both me and Jimmy got to hold her for the very first time. It was pretty much the most amazing moment of our life and I still cannot believe how tiny and strong our sweet girl is. Now that they can move her around like that, we will start doing what they call "Kangaroo Care" with her everyday. This is putting her skin against our bare skin for periods at a time for bonding. This is incredibly important for preemies as they are missing out on that extra time inside their mother's womb and spend a lot of time in their isolettes.

They were also able to lay Natalie on her belly for the first time tonight and that is how we left her sleeping. She absolutely loves it and curled up right away in this new position.

 Happy to be on her belly.

Lastly for today, I have to mention the main nurse that is taking care of Natalie. We were very lucky that Nurse Cathy is who was working the morning Natalie was born and she has been an amazing support and phenomenal nurse/caregiver every since. She has been with the NICU since it was created in Morristown and I always feel extra secure when I know she is on duty. She has requested to be Natalie's permanent nurse, so she will be assigned to her whenever she is at work. Not only good at taking care of the baby, she is an expert of taking care of me and Jimmy. Everyday she introduces more ways we can help and be involved and with her long experience, she seems to know our concerns before we voice them. Today she did something special and molded Natalie's tiny footprints into clay in a heart shaped box. She said since it was Natalie's baptism day, that we should have something special to commemorate it. I am pretty sure that is not one of her nurse duties, but she is just one of those special people.

Going Home - Part 1

Yesterday, January 23rd, I was released from the hospital. Usually that would mean being out by 11 am, but they let us hang out until 6:30 pm and use the room as base while visiting Natalie. Not having to rush out was such a blessing and I cannot stress enough how amazing/understanding/incredible the staff of Morristown Medical Center has been.

They told us leaving would be hard and they were very right. Even though we have been spending nights on a separate floor from her, we were always with in a 10 minute walk from her. I do not think I ever truly understood the term "heartstrings" until Jimmy left the parking lot and I felt a physical pull through my body at leaving her. Needless to say, it was not a happy drive home.

We know she is in the best care and that we really need to concentrate on taking care of ourselves (easier said than done). Last night was at home was hard, but I can already see our routine and schedule unfolding that we will live by. I still have to get up every 2-3 hours to breast pump so I can bring Natalie what the NICU calls "liquid magic". So, we are in every way exhausted parents of a newborn, just in a different way.

We called to check on her twice through the night. The nurses are super patient with us and gave us good updates. They do not just tell us she is doing good, but give us details of the treatments they are using and how much oxygen she is depending on and stats like that.

Today is our first day visiting the hospital in the normal way we will continue to do for the remainder of her time there. We will see how our schedule works out, but are anxious to find a rhythm. They said within a week or two we should be able to hold her. Yesterday, they even let me change her diaper, which was nice. The hospital understands the psychological/emotional needs of the parents being involved and each day give us an update of how we are going to help Natalie Rose progress.

I called this entry "Going Home - Part 1", because we have every confidence that by the end of April or early May, we can post Part 2 celebrating Natalie joining us here in her home to sleep in her nursery and meeting her big, hairy dog Willow!

Some pictures -

 Natalie is under the UV light to help to keep her skin from going jaundice. You can't see her face here, but you can see all 4 of her tiny fingers fitting through Jimmy's wedding band.

Grandma and Grandpa Bassett arrived from North Carolina to meet their first grandchild.

48 Hours Later

I do not know if the first 48 hours went fast, or if they took a lifetime, but sometimes it feels like both.

Natalie is continuing to do really well. They are very happy that she is breathing on her own. The only help she has is a CPAP (the same thing adults with Sleep Apnia use). It helps aid her, and she needs the help, but not having the need for a breathing tube is a very good sign for us.

She was born a little anemic, so she has had to have a blood transfusion, but that went really well.

She has a feisty little reputation already, and seems to yell at her nurses whenever they disrupt her from being comfortable. She is very eager for all of us to know who is boss.

The cultures they took from her when she was first born come in today. That will be very important to tell us whether she has any infections and how they need to proceed with her. We are anxiously awaiting word from her doctor. However, whenever we see her, we cannot help but think she is doing great.

I got to change her diaper today (which was terrifying) and Jimmy was able to help out with syringing the breast milk into her feeding tube. They want to keep us as involved as possible, which is the best for both us and baby. Hopefully, in another week or two, we will actually be able to hold her.

I am being discharged today. I have to keep remembering to rest, but don't worry, if I forget, my body quickly reminds me.

As for everything else, the outpouring of love, support and prayers has been absolutely phenomenal. It is humbling and deeply fulfilling to watch everyone we know (and many we do not know) rally around our baby girl. If she can feel your positive energy, than we have no doubts that events will continue to look up.

Here are some pictures from the past 48 hours...

Natalie Rose

Natalie Rose began with what we thought was a bladder infection, but what became a long night of a hospital transfer and scrambling to get ready for her because at 24 weeks 3 days, she was coming whether we were ready for her or not. Natalie was born on Tuesday, January 20th at 9:31 am, 13 inches long and 1 lb 14 oz. Doctors were pleasantly shocked, and Jimmy and myself were completely shocked, to hear her crying as they whisked her away for care. The fact that she came into this world breathing without aid was a huge boost and so far things have continued to go well. 

Within minutes we were hearing terms of "percentages of her chances" (the scariest words to hear in the world) and it was not until hours later that we heard her designation for the first time: Micro Preemie.

Simple definition: A micro preemie is a baby born weighing less than 1 pound, 12 ounces (800 grams) or before 26 weeks gestation. Because they are born months before their due dates, micro preemies face long NICU stays. Although many extremely premature babies grow up with no long-term effects of prematurity, others face severe health problems throughout life.

I promised my doctor I would stay off the internet, so that definition is all I will get from there.

After the NICU team got Natalie ready, they brought her over to me for about 15 seconds so we could see her before they took her off. We did not see her again for about 5 hours.

I will not get into the grisly details of how we went in "just to play it safe" at St. Clare's hospital at 10 pm Monday night and ended up with a newborn 12 hours later at Morristown Medical Center. I will just say how glad we are to live miles away from a nationally recognized NICU program, something we had never thought about or concerned ourselves with before. 

We got to see baby girl all set up in her new digs later on Tuesday. She looks a lot bigger in the pictures than she does in real life, but she is so content in her little nest they made, it makes us feel better every time we see her.

This is about 3 pm on Tuesday, January 20th. All happy and content in her new little home.

Only Jimmy and myself are a allowed to touch her and in very specific ways. For now just our presence, and her hearing our voices which she is used to helps big time they say. I have been trying to get my breast milk for her because according to currently held medical beliefs, nothing is healthier.

So, here is where you can get updates on the situation. God Bless Natalie Rose.