PDA Ligation Surgery - Part 2

Sorry for the delay in posting. I have been so exhausted between going back to work and having her surgery. I think I was more stressed than I even realized because once I got over the worry I just felt absolutely drained. I hope you all saw through Facebook that the surgery went well and were not concerned this whole time. 

Natalie was the first surgery of the day, so we arrived on Thursday morning bright and early (before 6AM) to hang with her until the surgeon got there to brief us and get our consent. When we got there, the night nurse (their shifts change at 7:30) was getting all her stats and prepping her to go to the OR. They have this rolling isolette that is really a heated carrier that also holds all the respiratory and monitoring equipment for when the babies are being transported. Before they put her in that they were taking her temperature, her blood pressure and general stats. Her blood pressure mean came up in the high 20s and her low number was in the teens. The nurse frowned at that outcome and then did it again thinking it was a mistake, but again came up with a low number. I did not know until later that this was cause for concern. When her day nurse walked in and was told, she just went over to her crib and asked her to stop being a silly rabbit. I do not know why people pay for acting school, they should just go into nursing where they have to shield family members from concern until they are certain what it is, but I certainly appreciate their talents.

The surgeon walked in and I asked him if he was ready and he said he was and then held out his hands and pretended they were all shaky (do not count how many times I used "and" in that sentence, I lost about 40 IQ points when Natalie exited my body and I have yet to recover them), which I am assuming is the oldest surgeon joke ever, but it still helped crack our tension. So then began the process of where he tells us everything that could possibly go wrong because he has to. Most of the issues were minor, but he said the most serious is if when they went in to close the ductus that it could rip and then you would holes in two areas (or something like that) and when that happens that there is a 50% chance of survival. He promised that he had performed over 300 of these procedures where he had only seen a serious complication once, and he was not planning on seeing it for a second time that day. He continued to explain how though she was not showing terrible symptoms, that she was not getting better and, more importantly, they needed her in the best shape possible for her reconnection surgery (there is a very fancy medical term for reconnection, but I am all you got) which would be in a couple of weeks.  

So, I read and signed the form that basically said "if something terrible happens to your child, it is not our fault" and they moved her to her transport crib. It happened so quickly, I did not get to really say anything to her or touch her before she was already packed up and before we knew it we were following them down the hallway. They take a back elevator to the OR and we are allowed to walk with them until they enter the operating room. I would like to state for the record that I did not start crying until we got onto the elevator. We went down a few floors and the room was directly outside the elevator door, so I peeked into her box she was in and found her sleeping soundly, so didn't worry about saying anything. It is silly because she cannot understand anything I say, so it is really for me, but I was at a loss of words. They told us to take the same elevator right back up. We did this and then were told by some young nurse (who I do not think was reading the situation well) that we were in an employee only section and had to go back down to another floor and walk around to a different set of elevators to come back up. This actually made me laugh because all she had to do was come in through her employee entrance to where we were standing then let us through the door to the public side, but whatever. We went down, grabbed some Starbucks coffee and then returned to the NICU lobby to wait with some of my family.

I want to clarify that I had the utmost confidence in the outcome of her surgery. If I was a more whimsical person, I would say her surgeon is a miracle worker. This is the same surgeon who did her first surgery. He is the one who called the shot that though she looked better, he still was not sure about her x-ray and he wanted to open her up where he found the NEC in time before it perforated and wreaked havoc on her system. Though the other medical staff probably is not supposed to say anything, many of them had dropped hints about this particular surgeon and that if it was their kid, he is the one he would want in the operating room. So, no I was not worried about this semi-standard procedure even though it was serious. I was more worried, and I do not know if this is something that can even happen, but I was more worried that this was too much for her. I felt like we have asked so much from this little angel who is still six weeks away from her due date, and that she would finally reach her limit and give up. I know they intubated her so she was not breathing for herself and that they had a whole support staff, but the nagging worry was that she just might not be able to pull through. She has given me no cause for this concern. Every time she is faced with a challenge, she has fought so hard and beat it back faster and better than the doctors would hope. Maybe it speaks to my faith in the people working on her that my main concern had nothing to do with human error, but something outside our control.

They told us it would take about an hour to prep her, 15 minutes for the actual procedure and then more time to get her ready to go back to the NICU. I am assuming they pad their timing so they do not worry the family if it is not exact, but she was done relatively quickly. She probably went down there at 7:45 and the surgeon was up by 8:45 to tell us she did great. If you remember, they went back and forth for weeks about what to do with her PDA. This is because she had a very loud murmur and on her echo scans they could see the large PDA. However, one of the main symptoms is problems with respiratory and she had been doing well, almost always on room air, so they felt confident they could wait it out until it closed on its own. Finally they decided to just take action, it was not getting any smaller and they felt she would not progress as well until it was fixed, but she still was not sick from it. Her surgeon reported that what he found showed it very much needed to be ligated. Her hole was very large, around the size of her aorta, and up to 50% of her blood was off-shooting into the wrong direction. Eventually this could have made her very sick and then they would have to do surgery on a weak baby instead of her being in good health for this scheduled procedure. He then went over her next surgery with us then talked some Sonic with my five year old nephew before he went to continue his day of procedures.

We got to see her a few minutes later and she looked great. She was still completely out of it, but she was comfortable and within hours we saw the edema dissipate. When her regular doctor rounded I found out that her blood pressure earlier was a concern. The resident remarked how it was ironic. When I asked why, he explained that they had been going back and forth on her treatment and then the morning of her procedure she gave them what would have been a red flag that she needed to have the surgery done. I am thinking she has a flair for drama or just really convenient timing.

Since then they waited until she woke up enough from anesthesia to extubate her and get her back on the CPAP. They were thinking in less than 24 hours, but my baby rode that vent for as long as she could until finally on Saturday they weaned her off of it. I cannot blame her. She has spent 10 weeks fighting for every breathe, why would she give up a machine breathing for her. Of course this is the exact reason they need to get them off fast so they don't get lazy. I have not seen her pitch a bigger fit than when they put her CPAP mask back on. She was breathing at 100% saturation on room air within in 20 minutes, so she was very ready to get off the vent. 

Jimmy and myself were really touched by the amount of nurses and staff that came in a checked on her throughout those following days. These are people who have worked with her a lot or only a couple of times, but they took the time to come see how she was doing and to check in with us. Yesterday (Saturday), we said goodbye to one of her respiratory therapists that have been with us since the beginning. We knew since February that she would be moving out of state, but that did not make it any easier. Until this past week, I was spending 6-10 hours a day sitting with her and interacting with everyone in the unit. I quickly formed good relationships and even friendships with many of the people there. I cannot help but have a soft spot to begin with as they are helping my baby thrive and at times saving her life. Many people have asked me about the type of person who works in the NICU because it seems like such a hard job emotionally. It is a hard job, both emotionally and physically, they barely get to sit on some days. They have to guard their own emotions when a baby they have grown attached to is having a scary moment and keep a clear head. They understand more than anyone that not all babies make it and yet they open themselves up to them and their families every time. I think they sometimes forget how amazing and important they are. They know we are grateful, but I wonder if they can ever understand the level of gratitude, respect and awe we feel for them. Though I joked with the therapist last night about abandoning her favorite patient to move, I was very sad to say goodbye to someone I have come to look forward to seeing throughout my week and who I respect greatly. She gave me her email address and made me promise to send her updates and pictures. I figured a day later was too early, but she will get email from me soon. I did not tell her about the blog because if I knew anyone that works at the NICU was reading it (which, who knows, maybe someone found it and is reading it right now) that I would edit myself and I do not want to do that. I know I sometimes confuse information and I know they would understand, but I would worry about it and worry about saying something that could offend someone. I think I will tell them afterwards. I am assuming some of them might find it interesting to see the journey from the parent side.

I have been thinking a lot about Natalie coming home recently. With two of her three surgeries down, I am starting to see the light at the end of the tunnel and cannot help but get excited. We cannot wait to bring her into her home and start our new life together. However, I am already sad that my days with my NICU family will be ending. I would be happy if I never set foot into Morristown Medical Center ever again, but I have met some amazing people that I will miss running into. I was talking to our nurse today about it and she told me that the doctor group, MANA, holds a picnic every year. She went for the first time last year and said about a thousand people were there and it was pretty amazing. That made me feel better that I would have a chance to catch up with people and show off my NICU graduate one day.

So until next time, here is your dose of Natalie Rose, thank you all for your thoughts and prayers, you are more appreciated than you know:

Jimmy hanging out with Natalie before her surgery

Right after her surgery

Resting cozily the day after her surgery

Back on the mask and not happy about it, but relaxed to be back in Mommy's arms

The transport isolette that took her down to the OR

PDA Ligation Surgery - Part 1

I left you right before I went back to work and after three days I am completely beat, but am dealing ok. It is just a very long day, but I do not spend my hours at work upset. I think that will come when I go back to work after being home with her for a few months like it does to all working Moms who return to the daily grind.

Enough about me, what we all are really concerned with is that after over a month of deliberating over treatment, Natalie is getting her PDA ligation surgery tomorrow morning. 

I have explained what the PDA (Patent Ductus Arteriosus) is in an earlier post, but I stole these images from Stanford's Children's Hospital website:

OK, science lesson over

As it was explained to me, they go in through the left side and "smush" the lung aside (obvious medical terms they use for us laymen) and then they tie or clip the ductus closed. The actual procedure takes less then 15 minutes, but it takes over an hour for them to prepare her for it. They said a large factor is how the infant handles having their lung smushed (smooshed?) since there is already so much pressure on their lungs and heart because of the PDA strain. Luckily, Natalie has always done excellent in the respiratory area, so they are confident this should not be a problem.

So, that is all for now. She is the first surgery of the day at 7:30 am, but it will probably take a few hours before she is back up in the NICU and we are with her. We are getting there at 6 am to sign consent forms and all that legal stuff and to sit with her before she goes down. I have been in positive spirits, but I would be lying if I said I did not hate every single minute of this part. However, I am very excited to get this behind us. 

For the first time in awhile, it was very hard to go home tonight. She was all cuddled up and going back to sleep after being awake for a few minutes while she was changed and cleaned up, completely ignorant of what was to come in the morning. I am grateful for many things, but one of the major things is that she will have no memory of all of this. She has the same surgeon working on her that did her NEC surgery a month ago and who will do her reconnection surgery in two weeks. He is the best (and I am not the only one at the hospital who thinks that). I hope he truly understands the impact he has on so many lives and not just the little children he works on, but everyone connected to them. 

So until tomorrow - prayers for Natalie Rose. She has proved countless times she is a fighter and we are more proud of her than I can express. I have every confidence that tomorrow will be a success. However, I am human and it will be a long night and an eternal morning while we wait in the lobby tomorrow. We will update you all as soon as we hear the good news.

Here is your dose of Miss Natalie Rose

How I found her when I arrived at 4 pm on my first day of work

Kangaroo Time (Mommy needed it more than her that day)

We were there late enough we saw her get weighed. She does not enjoy this process.

2 Months Later

We passed the 2 month mark for Natalie on March 20th. I cannot believe it has been 2 months, but at the same time, I feel like she has been a part of our family a lot longer. She is loving her open crib and so are we since we can touch her so much easier. She is becoming a pacifier pro and tries to hold it in place with her little hand, but only manages to keep it for a couple of minutes before it inevitably pops out. 

She has lost all her puffiness and lost the water weight like she was supposed to. However, she continued to lose and after the fourth day in a row of weight loss, they were concerned because too much was being outputted into her bag. On the last day she was outputting as much as her feeds were and it was all liquid. So the surgeon was right all those weeks ago because she had started dumping her food because of how high in her intestines her disconnect is located. So they put her back on IV nutrition and lowered her feeds to try to find a happy medium because they need her to keep growing. Yesterday did not make much of a change and she still lost weight, but today her bag contents were much less and much better, so hopefully they found the magic combination. They weigh her during night shift, so we will find out later tonight if she lost or gained.

As for us, Jimmy is plowing through tax season at his job and preparing for his final CFA exam in June while visiting Natalie every night. So far he has not had a (major) meltdown and is keeping up a decent balance, but I know it is very hard on him. Tomorrow, I go back to work until she comes home. My work has been very helpful and supportive throughout the past couple of months and have worked with me to figure out what will work best. It will be hard for many reasons, but my main concern is that the weekly attending doctor is only there until four every day and I will not be there in the morning when they do rounds. I have always been there for the majority of each day so I was able to give good feedback or answer different questions the medical staff had so they did not have to go searching through records. I went down on my weekly hours, but am maintaining full time so I will be able to get out by three each day. Then I will rush there, check in with the doctor, do kangaroo (which we do for three hours) and then hopefully get home between 8-9 at night. I am pretty sure I will be exhausted, but I keep reminding myself, this will give me over three months to be with her when she comes home which is crucial. I will be very happy I made this decision then (I am going to be repeating this to myself a lot in the coming weeks).

Otherwise, her surgery schedule is still on with the ligation this week and her reconnection two weeks later, so we will have a busy few weeks and I am able to take off work for her surgeries. I am excited that soon these issues that have been hanging over us will be resolved and she can just work on growing and getting ready to come home.

A special dose of Natalie Rose today with some beautiful pictures taken by my friend, Kathleen, when she visited this past weekend.

 

Pencil Us In

Ladies and Gentlemen ... we have a plan.

I cannot fault the NICU team of doctors in any which way. They have to make very difficult decisions and think about the endless variables and possibilities which means they do not make these decisions lightly. I have nothing but respect and downright reverence for these people and the difficult profession they decided to enter into and excel. But as a parent of a patient, it has been incredibly hard waiting for them to make a final call on Natalie's PDA. She has another surgery coming up and I want her in the best possible condition when she goes into it. Of course, we all wish her PDA would just close on its own, which they have been waiting for because you never want to do a unnecessary surgery on anyone, but it has not. The past couple of weeks she has had little issues, nothing serious, but they seemed to be pointing out that the PDA was affecting her. So, they decided that they will pencil her in for the PDA ligation next Thursday. If by then she is doing amazing and there is signs it is shrinking then they will not do the procedure. Otherwise, they will take care of it once and for all.

I have mixed feelings about this. Actually, that is a lie, I want it taken care of because it has been nagging at us for weeks. It is a common preemie problem, so it is a procedure the surgeon has done many times, so I have confidence in the outcome. However, there will always be a concern of her having any kind of surgery because as they always say, there is always a chance of complications. But we are being positive that this will be a major step in bringing her to the next level of healing and development. Remind me I said all this when I am sitting in the waiting room petrified (yet again).

As I have written about before, there is a new doctor every week so things tend to change. When the doctor went over the plan with me she let me know that she made this decision with the whole team and the doctor on call next week is completely onboard.

As for Miss Natalie? She has grown up so much in the past few days. She has lost weight the past few nights because she is losing the water weight and her foods are finally more than they were before she got sick a month ago. They had been talking about moving her out of her isolette because the only thing it does at this point is keep her warm. I was surprised they could move her into a crib still on support, but the isolette really has nothing to do with it. Once they get old enough to maintain their body temperature the isolette does not go cool enough for them to not overheat. So after two days of her isolette heating up because of her, they decided it was time to move her to the next step. It was a little weird at first because she is so exposed, but they said we would love it and they are right. I can touch her and see her so much easier and I hear all of her little noises while she is resting that I never really did before. It is also easier for them to take her out, so I can hold her more often than the once a day for kangaroo care. I cannot wait until she is off the IV and CPAP and I will be able to take her out myself! It is these little things that make a huge difference.

Your dose of Natalie Rose:

Her new digs...the isolette in the background is for her roommate

I thought she would be bothered by the light, but she has been super content

They put her in her first shirt to help keep her warm. One size fits all does not fit her.

Now they can just take her out and plop her on me for some quick cuddle time

Our Puffy Princess

So, things have been going OK. Unfortunately, our little darling has resembled the Stay Puft Marshmallow Man from Ghostbusters the past few days. (I say that with all the love in the world, but it really is an apt description). She was pretty puffy on Friday and then overnight she gained 140 g, which even though we are rooting for her weight gain were concerned with and went in Saturday morning assuming we misheard over the phone. They weigh them during the night shift, so we always get the daily weight when we call in to check on her. We came in the next morning and she was even puffier. Otherwise, she has been doing real well, but this was a very obvious change. They did not seem super concerned so we knew not to freak out, but later in the day we did get a science lesson.

This is a normal issue for preemies. In utero, they would be getting all the nutrients they needed through amniotic fluid, including tons of protein. They cannot give her straight protein because she can't process it, so the best thing is her to get it through breast milk. With her surgery then partial blockage, she has gotten really behind on her feeds, so she is not getting enough. I did not know that protein was important for how your body handled fluids (apparently it is). Here is a basic description:

Low protein levels in the blood can cause edema. The proteins help to hold salt and water inside the blood vessels so fluid does not leak out into the tissues. If a blood protein, called albumin, gets too low, fluid is retained and edema occurs. - www.drugs.com/healthguide 

They are not cavalier about it, but they do not get overly concerned unless they think her lungs are being affected. They gave her a diuretic on Saturday, but they have to be careful to make sure they do not give her too much because it can then affect her bone health. Literally every treatment with these babies have some sort of alternate consequence and the doctors continuously have to perform a balancing act. They said the best thing for her is to get more food than IV fluids into her, so they have been aggressively upping her food every day. So far is has been going well and she gets a little less puffy everyday.

It seems like this is going to work though we had a scary moment yesterday when they upped her feeds and she was laying on me for about 10 minutes when she must of spit up a little. Now I did not think I ever paid much attention to the feel of her breathing before, but I did notice when her little body got completely still on me. By the time I looked up at her monitor, it was starting to alarm like crazy and her face was turning blue. The nurse came in and whisked her off of me and gave a pretty convincing act that all was cool. After a couple of minutes back in her bed with her spit up cleaned up, she was fine again. We have to remember that she still cannot perform multiple functions at once and when she throws/spits up her whole little system gets caught up. They realized that she was not going to be able to handle the larger feed over the short amount of time and they lengthened it so she got it over an hour instead of 30 minutes. Unfortunately, that is her only way of telling us she couldn't handle the food, but she was really ok within a couple of minutes. Jimmy was in the city that day for his CFA class and I automatically went to call him right away, but then realized it would do nothing but stress him out and she really was fine. I have to admit I sat frozen in my chair for a good 5 minutes before I felt calm enough. Everything probably happened and was resolved within about 2 minutes, but it felt much longer than that. After that her numbers were better than they had been all day so I felt much better though the nurse admitted later that night that Natalie did scare her there for a sec. These nurses truly are amazing.

Today brings another week which brings in a new doctor for the next five days. I had my own doctors appointment in the morning, so got in late and missed rounds. However, it sounds like between the bloating and some minor other issues she is having, that it could point towards her heart needing to be addressed soon instead of waiting to see if it closes on her own. She is still breathing well so it is by no means an emergency, but I think in the next few days they will take a serious look at whether to do the ligation or whether we will continue to wait and see. Her surgeon is back from vacation and was happy in general with her progress. He plans on doing the reconnection surgery in the next two to three weeks. As much as I do not want to see her go through more procedures, I am almost rooting for them to decide to do the ligation because I hope it will resolve some of her lingering problems and have her as healthy as possible for her surgery, but we will have to see what happens this week.

As for me, I went to my doctor today to get cleared for work. I was also hoping to find out the great mystery of why Natalie was born so early. It sounds like there are signs towards a couple of different possibilities but not one definite reason. Basically, he said we will just have to make a game plan when we want to have another child (I kind of felt like it was just a different version of wait and see, but am quickly understanding there is not much black and white answers in the medical world). I am cleared to go back to work next Monday which will be really hard, but it is important to make sure I have enough time with her when she comes home and I know I will be happy I did it in the long run.

I don't proofread these anymore because I am just too tired, so I hope they are not littered with typos and grammatical errors! Hopefully we will know more about her heart situation by Wednesday/Thursday and I will be sure to let you all know. Keep Miss Natalie in your prayers, she has a long road left to go and we could use all the help we can get for our wee warrior.

And here is our girl:

Natty Rose - Day 52

Boring days. We have had a few boring days which is really exciting. I hope to have many more. She has continued to do very well and they have been bumping up her feedings. She is about halfway to where she needs to be to take out the IV so hopefully she continues to keep her food down, knock on wood. By the way, the doctors/nurses say 'knock on wood' here all the time and then they spin around looking at all the sterile plastic and then just shrug and knock on it. 

It seems like if she continues to keep her food down and there is no signs of a partial blockage anymore then they will hold off on fixing her PDA. Her surgeon is back on Monday and I think they will have a consult with him and see what he thinks, so we will see what happens then. 

It has been almost 3 weeks since her surgery and they said it would be about 6 weeks until they did her second surgery where they reconnect her healthy intestines. So, I guess we are halfway there. I know they mentioned that they wanted her to be at least 4.5 lbs. She is currently 3 lb 11 oz. They had to give her a diuretic to get her to lose some of the water she was holding onto, so it is hard to say what her real weight is, but it brought her down from 3 lb 13 oz. 

I have been holding her everyday. I really have to plan out my days, because once they put her on me, I am down for about 3 hours, which I love of course. On Wednesday, I was holding her and it had only been an hour when she freaked out. She usually just passes out on top of me, but she woke up and started screaming. She had a full temper tantrum with her face turning red and banging her fists on my chest. Her heart-rate skyrocketed which I guess happens to anyone who gets real upset, but we just aren't hooked up to a monitor to know. They checked to see if anything was bothering her and moved her position, but she was not having it. They moved her back to her isolette and she calmed down immediately. I assumed she was just mad I ran into work to visit for a couple of hours, but who knows. The next day she hung out with me for almost four hours and they had to peel her off of me, so I guess we'll never know what was bothering her that day.

So, all in all, a good report for the little miss. I hope I am reporting the same in a couple of days.

Everyone enjoy their St. Patty's Weekend!

And here is your dose of the ever growing Natalie Rose:

Being Angelic.
One of her doctors joked that they had to keep the boy babies from sneaking into her room because she's so pretty.
He probably makes that joke to every baby girl's parents, but I think she's pretty cute.

7 Weeks

We should be about halfway through Natalie's stay in the NICU this week, but with her complications of the past few weeks, our timeline has changed. To be honest, I do not care if she is in there for a year, if it means she comes home with us one day. They are not giving exact dates, but we know she will be in there past her May 8th due date.

She has been doing very well the past couple of days. She is getting output into her bag and they were able to take out her Anderson tube yesterday. Tonight they started reintroducing food very slowly. She is getting 1 ml every 3 hours, not continuously like they did last time, but all at once. If she does not throw any of it up my tomorrow morning then they will try some more.

She is weighing in at 3 lb 10 oz, but she is a bit puffy and they think some of that is retaining water so she might get a diuretic sometime this week. Either way, she looks bigger every day. Today I noticed how old her cry sounded, she sounds more like a newborn and less like a baby goat.

Every week has a different doctor who works the floor. There are 10 doctors and we have worked with most of them. They have all been great, but it is getting a little hard to readjust every Monday when the philosophy changes. They do not make large decisions differently from one another, but the day to day little things change. I did not really mind before Natalie got sick because I did not deal with them as much or see their influence as strongly. Last week my nurse told me I should think about requesting a primary doctor so we are always talking to one person and the NICU team will consult with that one doctor when needed. I think this is a great idea, but we have no idea who to pick! We have really liked all the doctors, they have all been phenomenal, but we just want to streamline the information. So we will probably making that decision soon. Our nurse made a good point that since they all are fantastic doctors, just to pick who we felt communicated/explained things the best to us. So, we'll see.

The doctor on call this week has been around for a long time and is semi-retired. Unlike the past couple of doctors, her main focus is the PDA in Natalie's heart. Don't get me wrong, the other doctors did not ignore it, but they did not want to entertain the idea of the ligation surgery for awhile to let her recover. After last weeks partial blockage, I was wondering if they would bring up the PDA again because it has been explained to me that it can cause all kinds of problems. I heard nothing last week, but this week it seems like we are closer to moving forward with it. As much as it is another surgery, it may go a long way to help her get healthier and stay healthy enough for her last NEC surgery. It sounds like we are waiting to see what her surgeon and cardiologist thinks in the next few days. It is a much smaller procedure than her first surgery, so at this point, I am anxious for it to be just taken cared of and one less stress on her.

That's about it for now. I hope you all have been enjoying the balmy 45 degree weather up here. I have noticed everyone just seems happier ever since that snow began to melt!

Here is your daily dose of Natalie Rose:

Getting all cleaned up

Passed out on Mommy

Giving her nurse the stink eye

A Kink In The Road

This dear baby of mine is going to turn my hair grey!

Sorry I have not written in awhile, but we have had a stressful few days, and today is the first day that things are looking up and I could summon the energy to write.

On Wednesday, Natalie got her EKG and everything showed that her PDA is still the same size, but it is not growing larger and not bothering her, so that is sidelined. For now.

The nurse taught me how to pick her up (while she held all her tubes/wires) and let me position her on me. Up to this point, I would always sit down and they would place her, very carefully, on me while making sure all her devices were in the clear. It was pretty crazy, that over six weeks later and it was the first time I was picking her up. I feel like we have a lot of those moments to look forward to in the future. The simple, everyday actions we all take for granted, but will feel momentous to us.

After that, I held her for a few hours and she was really fussy which is unlike her. Usually the moment she hits my skin, she curls up and passes out. She did eventually fall asleep, but she just did not seem as relaxed as usual. I put it off as one of a million little things that could be bothering her and did not worry about it. When we put her back in her isolette she was all relaxed like usual, but after a few minutes I noticed there was green, mossy looking throw up on her face and neck. I was immediately concerned because this was the same substance that was being suctioned out of her belly when she was very sick. They told us not to panic, that it could just be her body not accepting the new level of feeding and be something simple. Her numbers were still great, as was her color and her belly was soft (which is a major factor in these intestinal problems) so they were not concerned about an emergency, but were concerned about what it could be turning into.

I think we called a thousand times through the night to check on her. Once she threw up, they paused her feeds and they decided they would do blood work and an x-ray in the morning. She continued to seem fine and her numbers were good; this did not seem like a sick baby. Of course this was during another snowstorm, so we left real early the next morning to get in knowing the surgeon would be looking at the x-ray early. Natalie's room is the first room you see upon entering. Actually, it is the only room you can see through the door from the lobby. That morning we came in to hang up our jackets and wash our hands before entering and could see the head doctor and surgeon outside her room (this is never a good sign). They seemed relaxed so I knew we were not in immediate trouble, but I am really tired of finding these people outside her door!

The surgeon explained that it looked like there was a partial block or a "kink" in her intestines. This could be from scar tissue or swelling or other medical terms I have forgotten. He assured us this was purely a "mechanical" problem and if she could still pass through the partial opening then it would not make her sick. This is something that can happen and they told us that it is possible for her body to fix it itself. Otherwise, they would have to fix it surgically and it would have to be dire circumstances to get him to agree to open her up so quickly after her last surgery. He said if she does not heal herself, best case scenario is she can live with it for a few weeks and he can fix it when her does the surgery to reconnect her intestines. So far, she was still outputting into her stoma bag and her stomach was nice and soft, so they were hoping it would not make her sick and that if they let her gut rest (take her off food) that it would heal on its own.

Then he told us he was going on vacation the next day and would be skiing for a week, but one of his partners would take care of us.

I guess these people are allowed to have lives and plans and such, but obviously I would prefer they revolved their lives around not just their patients, but one particular (and very cute) patient.

So, Thursday went on with no incident. Good numbers, soft belly, out putting some in her bag, not a ton, but some. They had an Anderson tube in coming out through her mouth to keep suctioning out the green bile in her belly. She hates this tube. It is really big compared to her mouth so this is completely understandable. She seemed a little sleepy, but they had been messing with her a lot, so it was hard to tell whether this was a symptom of something or not.

We called on Friday morning, and she was still doing good and everything seemed the same so I went back to sleep and let myself go in late that day. I got in around noon and did not see her nurse, so I went to take care of a few things and when I came back she was doing her "care" (this is what they call it every 3/4 hours when they change them, take their temp and just generally check in on them). This was the same nurse as the day before which is always good because they can notice small differences in comparison. She looked up and told me she was concerned. My stomach dropped. That nothing was really coming into her bag. It dropped further. And that though her stomach was not hard, it was firmer than it had been the day before. I was crying at this point.

If you know anything about NEC (the dangerous condition that she had the surgery for) then you know that they are all symptoms for this. I know they were beyond mild in comparison and she was still seemingly healthy, but just hearing the slightest possibility was very hard. The nurse was not alarmed, but just wanted to make sure she was being watched carefully so instead of writing it in her chart, she just walked into the doctors lounge and told them directly. The doctor came right out and took a look at Natalie and decided to do another x-ray again. I basically just sat there a quietly cried until after they did her x-ray. I think it was more of me decompressing than anything and by the time the results came back I was composed. The x-rays showed no change which was good and bad. Good that it had not deteriorated into a dangerous situation, but bad in that things were not moving around as much as they should be.

We went home a little down, but hoping for the best. Every time there has been an issue, they have told us it is possible for it to resolves itself, but so far that had not happened, so I was not holding out hope. We called throughout the night (every time I woke up to pump) and got positive reports on her numbers and everything so we felt pretty good. We actually had some plans we were trying to work into our Saturday and were hoping to keep them. We woke up Saturday morning and called in to find out that she did have some output into her bag (yay!), but it was rust colored (oh no). Otherwise, she was doing good, but they were going to do another x-ray (I assume Natalie will glow in the dark sometime soon).

The last thing that happened before they decided to do surgery on Natalie a couple of weeks ago was she had rusty colored stools (which meant there was blood). They were cautiously optimistic that this was what needed to pass and it was not. We went straight to the hospital (who needs to ever run errands anyways) and got there to check with the doctor. The doctor was on rounds when they told her we were there and she said she would talk to us after. That is a good sign. If there was a major problem, she would have stopped what she was doing and come right over considering rounds takes a couple of hours.

I got to kangaroo with Natalie for a couple of hours which was great because we had not since Wednesday. She would squirm a little, but ultimately relaxed. The doctor came by and said the x-ray looked the same (again, good and bad news). That her stomach was soft, but now it was a little distended, though she was happy that she would put pressure on it and Natalie did not seem to feel in pain, so it was not tender. She told us she asked for the surgeon to come take a look at her. He gets all the x-rays as soon as the NICU doctors get them and ultimately they are deferred to when it comes to future action. She really wanted him to do a physical examination so over the days he could see the differences in her. Since these babies cannot speak up on what is bothering them visual cues are the biggest factor the doctors can use to diagnose.

We were happy to see that Natalie was passing some more liquid into her bag than the day before but it was still very low amounts. The surgeon came by and really was only there for a few minutes. He basically reiterated what our doctor said. He explained how 80% of the battle for them when it comes to a baby in Natalie's state is knowing when it was the right time to intervene. He did not seem too positive but told us, like always, we would have to wait and see.

We went home last night in pretty low spirits. We were happy that she had a little more fluid and that she seemed a little more awake, but between the doctor and the surgeon felt like we should just accept that surgery was in the immediate future and hope that we were wrong. We went out to dinner with our friends who are getting married this week with pretty heavy hearts and the moment we got home I had Jimmy call in to check on her.

She had a fever and was squirming around, but, great news, she passed a ton of gas into her bag (this is really great news). They assumed the fever and squirming were from her having to work to get it out, but they were going to wait an hour to take her temp again to know for sure. We called an hour later and sure enough her temp was normal and she had passed some more liquid into bag. It is amazing how fast our moods can change. I never thought I would be so excited to hear that my beautiful little girl was farting out her stomach.

We called throughout the night and kept getting good reports. We went in nervous to see what the next x-ray would say since we were so happy with the little progress she had made. As they day continued she kept getting more into her bag than she had for the past few days. We kangarooed for over four hours, half with me and then half with Jimmy and she seemed like she felt a lot better. She was awake more often and seemed more relaxed. You can tell when she is working on passing something because she does curl her body up tight and whine, but it was still passing. They came in to tell us that the x-ray barely looked different, just barely enough to say it is very slightly better. Between all of this they decided to take our her Anderson tube tonight and resume feedings in the morning. They would not do an x-ray in the morning and would see if she would keep progressing in this positive manner.

These days have been extremely stressful. I started getting into the "this isn't fair" mindset that while my sweet little baby has been working so hard and recovering so well from her surgery that we would hit another road block. We know we are far from in the clear from this situation (among others), but hope she will continue getting better on her own.

Sorry this was so long, but that is what we have been doing for the past few days.

Here is your dose of Natalie Rose:

Feeling better and hanging out with Mommy 

A quick look at her pretty face (though she is not happy here)

Under the weather, but her eyes are open (and here is a nice {gross} look at her stoma bag)

6 Weeks

Yesterday was six weeks since Natalie was born. Which means it has been six weeks of her in the NICU and over 40 days straight of us visiting everyday. I should probably just start volunteering here and giving directions to lost guests (which I already do when I see a confused/distressed person roaming the corridors).

Natalie is 30 weeks gestation (will be 31 this Friday). She is 16 inches long and is 3 lb 3 oz, though her weight fluctuates a lot depending how much fluids are in her at the time so her actual weight is hard to figure and is probably a little bit less. The hair on her head gets lighter everyday and she still fights with her nurses. She loves her pacifier and it seems any agitation in the world can be fixed by popping it in her mouth. She was old enough last week that they took the temperature probe off of her (they can just rely on taking her temp every 4 hours, they do not need constant measurements), which means they can now swaddle her. She absolutely cannot fight sleep once she is swaddled real tight (add that with the pacifier and oh man, it is like she was given a sedative). She is acting more like a newborn in the fact that she stays awake/aware for periods of time and then passes out for a couple of hours. And like any baby, she does not like getting her face wiped (video below).

Last week I noticed she was twitching a lot and I told the nurse. Because of this, on Monday, she was subjected to a brain ultra sound and then an EEG. You should have seen the look on the EEG tech's face when he saw how tiny her head was which also included her PICC line and her strap for her mask that had to stay on. He had to fit 11 electrodes onto that tiny head, but I have to give him credit for being so gentle that she barely noticed. They ran it for an hour and then she did not enjoy having them removed. They usually wash her up during the night, because of gunk from the tests I got to see her version of a "bath" and it was, of course, adorable.

The neurologist came down right after and told us the tests came out good. They did not see any activity of seizures (which they can't promise there is none, but it is a good sign). I described the twitching and the doctor flailed his arms in a jerky motion. I exclaimed that that was exactly what she had been doing. He responded, "I know, I have been a neurologist for 35 years." He said she is just a tremulous baby which can happen with preemies. However, at around 35 weeks she will have an MRI because all early preemies here do before they leave.

Yesterday (Tuesday), she continued with her good days. However, her Bubble CPAP machine was not bubbling. The bubbles add a certain amount of pressure that she was not receiving. They tried all their tricks and it was not happening, but her numbers were still really good. They think they will be able to move her on to the next step in her respiratory journey which is the Nasal Cannula, which I would love because then I could see her pretty, little face again. Today her bubbles are working, so I guess we are going to wait and see. But it looks like she is moving in the right direction either way.

On Tuesdays, all the doctors from the NICU group (their practice is called MANA, MidAtlandic Neonatology Associates) meet at once for their weekly war planning session. There are about 10 doctors, and I have worked with almost all of them. This meeting lasts for hours (from Natalie's room I can see the conference room so I know) and they discuss all the patients and make a game plan for the week. Afterwards, Dr. Levi, who was on shift when she got really sick and then had surgery, stopped by to check in. He said he hasn't heard much about her, so it sounds like she is doing well. That she is feisty and is lucky to not have had a roommate in awhile because "she is what we here call, a diva." (We already knew this). He reminded me that as hard as it is, everything that has happened with her so far has been fixable and that is not always the case. He said nothing is harder than there being a problem and there not be a procedure or known treatment for it, which of course happens. I really appreciate the fact that these doctors take the time to come in and say hello even if they are not on shift, but walking through the unit. They always ask how she is doing and then also how we are holding up and I never doubt how much we are cared for here.

Now we are just waiting on a new EKG to be done this afternoon to see where we are with her PDA. This is going to determine whether they need to do the procedure soon or whether they can keep holding off. Hopefully, we should hear by the morning. Obviously there is no emergency need for the procedure since she is doing well, but I'm hoping they can give us some timeline.

Since it has been six weeks that means I was supposed to return to work or start my Family Leave. Oops. Obviously with her complications this schedule has been delayed and I will probably be out for this week and next week as long as things go well. In New Jersey, we get up to 6 months family leave, so I have to make sure I have enough time to be home with her when she gets out of the hospital which means I will return for some time while she is still here. I have not figured it all out yet, but am confident it will work out.

On another note, over the past few weeks I have gotten many private messages, calls and texts. I do read them all, but have not been able to respond to most of them. Please know I appreciate all your love and support and will get back to you when I can.

And now for your dose of Natalie Rose (no photos, but a video of her getting cleaned after her EEG which she is not happy about as you can see):

Right Side Up

Natalie Rose is a rockstar.

We are exactly a week out from a surgery that would put adults out for weeks and she is doing great.

They extubated her and put her back on CPAP on Thursday. They wanted to do this as soon as possible for multiple reasons, but she was starting to breath enough that they were over-venting her and she sort of decided for all of us that it was time to come off the ventilator. Since then her numbers have been so stable, she is like a completely different baby from a couple of weeks ago. Apparently, there are specific symptoms that a baby will normally show when they have NEC, but Natalie was not showing any of these, so they had no idea anything was seriously wrong until she got extremely sick.

They had said they would probably start introducing trace amounts of milk back into her system on Monday, but they actually started this past Friday. So far she is accepting them, but it is such little amounts, that does mean too much. For reference, before she got sick she was gettings 25 mls every three hours. On Friday, they started giving her 1.5 mls every three hours just to reorient her body to it.

This is really our next big hurdle and hopefully the biggest one we will face from here on out. As I mentioned before, they are concerned with how little of her intestines will store the milk before it exits her body. There are not many scientific/medical ways for them to monitor this other than a very simple observation. When she starts getting milk in larger quantities, they will constantly check her output (which they are already doing). If she starts to "dump" her milk then they will have no choice of waiting until she is the ideal weight to do the reconnecting surgery. Dumping would be if her milk comes back out intact, not broken down, which means she is not absorbing the nutrients. They said sometimes, even though the intestines before the break is very small, it is just enough for the baby to get what she needs, but they have no way of knowing other than observation. We are, of course, hoping for this to be the case so they can wait until she weighs 4.5 lbs which is where they surgeon prefers.

The PDA in her heart still needs to be addressed, but as it has not been causing issues, they are leaving it alone. With how well she is breathing and heart rate staying so stable, they do not think it is a problem right now. They very much follow the medical creed of "Do No Harm" here and feel doing the surgery at this moment could cause more problems than it solves. Right now, they are continuing to monitor it and hope it somehow starts to close on its own (which is technically possible), but we will have to wait and see.

In my stress haze that I have been living under for the past couple of weeks (well really since January 20th, but these past days take the cake), I was completely remembering certain details wrong. When she was first born, it was not her pick line (which is actually spelled PICC) that had to be out for me to hold her, but her umbilical line. They happened to come out around the same time, so I remembered it that way.

Which means, on Friday, to my very great surprise, I was able to hold her. They needed her off the breathing tube and then she was all mine. I held her normally, not kangaroo, but it was absolutely amazing. The nurses and doctors keep talking about the resiliency of these little babies, and it is absolutely miraculous to witness. They heal so quickly and fight so hard, and it is truly phenomenal. Holding her was a gift, that only a week ago, I was not sure I would ever receive again. Between the fear of the outcome of her sickness and surgery, and then the fact that I convinced myself that I would not be able to hold her for weeks, this was a huge moment for me. When I told them I thought I wouldn't be able to hold her for awhile (which at that point it had been over a week) they responded with: "well that would do no good for you or her". They wanted to get her back in my arms as soon as safe for both her and my own well-being.

Yesterday (Saturday), I was able to do Kangaroo Care and we spent 3 hours all snuggled up together. She happily curled up and promptly went to sleep for almost the entire time and did not have one moment where her numbers dropped. She seemed gigantic compared to last week and feeling her warmth against me was magical. Jimmy joined in and passed out on the couch next to us. After over a week of stress and fear, having my little family sleeping and curled up beside me brought an enormous feeling of contentment.

As for Jimmy and myself? We are dealing. To say we are ok would be a lie, of course we aren't. Anyone who knows me will tell you I am an ace for details, and I have found I am having a hard time remembering the simplest things. Simple tasks seem extra hard sometimes and sometimes I feel fine. Yesterday, I actually did something beyond going to the hospital and going home. I attended a memorial mass for the passing of my step-siblings father. On the way there I almost had a panic attack while driving on Rt. 3 because some guy cut me off and when I slammed my brakes my stuff went flying, including the phone with the directions. I completely reacted irrationally considering and it was not until later that I could look back and think, "hmm I am more stressed than I thought." As for the mass, I was more concerned with being there for them that I really did not stop to think if I was in a good state of mind to sit through that kind of event. Well, about five seconds into the mass they started singing "Be Not Afraid," and I completely lost it. I mean absolute hysterics. Which just teaches me I am not as cool and calm as I deceive myself (but honestly, for all you non-Catholics out there, this was probably the worst song for me to hear).

In general, I feel better only when I am at her side, my whole body relaxes and I find my most peaceful moments there. Her doing so well is making us both a little nervous in our own way of waiting for the next shoe to drop and hoping it doesn't. We know there is a long way to go, but are cautiously optimistic.

One of her respiratory therapists was just in here and mentioned nonchalantly how the OR was transported to her room last week because the surgeon did not feel she was stable enough to be moved downstairs. The NICU rooms were set up for this, but it does not happen often I am told. Every time I hear something like this it gives me the chills because it just reinforces how serious the situation was last weekend.

As for the last long entry I did on her surgery, I realized after I posted it that I had missed a million things. I had actually written down a list of points I did not want to forget the day before I wrote the post, but when the time came I decided I was too tired to double check everything because I do things like that. When I looked later, I saw I missed about half so maybe when I have the time I will flesh out the event. We'll see.

One thing I did leave out, that I wanted to add today, was a really cute thing the doctor did. After her surgery when they were putting in her PICC line and arterial line, they both them both in her scalp. Doing these took over an hour and a half, she has bad veins like her mother. Anyways, afterwards the nurse handed me a little packet. They had to shave parts of her head to put these in, and while in the midst of this, her doctor thought of keeping the hairs and putting them together for us. He labelled the packet "1st Hair Cut - 2/22/15". I just love how they are so busy, but they stop to take the time to do things like that for the family.

So, this entry was a little choppy I know, but we can look at it as a really great example of all the different directions my thoughts go as they run around my head all day. So, yeah, totally did it on purpose.

Here is my sweet girl and your not daily dose of Miss Natalie Rose:

Cozy Girl

Both Mommy and Natalie extremely relieved to be back to Kangaroo Care

Hello world, I'm adorable. Happy and awake going back into her bed after 3 hours hanging out with Mommy.