82 Days - Not That I'm Counting

I was waiting for Natalie to wake up and be extubated to do a new update because otherwise, there would not be much to say. Like last time she rode her ventilator for almost three days. On Friday, I was disappointed to find her still on it and was told the doctor wanted to let her dictate the schedule. I told them, I am not doctor, but in that case, she would be on it until next week. When she is on it she cannot make noise, so I would just see her squirming, go and check and see her face scrunched up like she was crying real hard, but no sound would come out. It is so pitiful, it is probably my least favorite aspect of the vent.

So to our surprise when we called in that night we were told she was extubated and back on her nasal canulla. It was a different doctor on that shift, who is a little more aggressive, and also Natalie almost pulled it out herself which could have proved dangerous if there did not happen to be a nurse in the room at the moment. We also got the good news that she was starting to get some output into her diaper. All good news.

We arrived on Saturday morning to a wide awake baby who had just had her first ever bottle. We were happy to hear they were starting her food again and to have it not in a feeding tube was just icing on the cake. It was only 5 mls which is like a teaspoon, but it was still something. These preemies have a really tough time coordinating sucking, swallowing and breathing all at the once so the nurses have very specific instructions on how to feed her. She was struggling a bit yesterday, so just the nurse fed her. I was so proud of her while watching her eat and at the same time thinking about how far she has come since that little 24-week squeaker she was a few months ago.

We spoke with the doctor, assuring her that we understand that nothing is guaranteed, about when she might be able to come home. We just do not want to be caught off guard if she comes home sooner than expected. The doctor said 3-4 weeks is a safe bet, which means we are back on schedule for around her due date in May. We are very excited, nervous and starting to scramble to get the house ready.

Today I got to feed her myself. There are all these little tricks on how to do it so she can learn to pace herself and she acted like she has been eating for months. It was such a nice feeling to feed her even though it only lasts for about two minutes. A little while after both feeds her heart rate dropped drastically. The first time freaked me out because I was holding her and not expecting it. She turned blue and the nurses had to come intervene. I was really hoping these things wouldn't happen anymore, but she is keeping me on my toes. Once it happened after the next feeding, they think she is having some reflux but promise that happens to a lot of preemies and they will keep an eye on it. 

Here is your dose of Natalie Rose:

After her surgery, on the respirator and resting

The Holy Grail, this is 5 mls of milk in her second bottle of her life

Not sure about this, oh wait, this is the best. thing. ever.

Resting on Mama for the first time post-surgery

My sweet girl

Quick Update: Successful Surgery #3

Here is just a quick update for those of you who are not connected via Facebook:

Successful surgery #3! So happy to finally have this behind us. She did very well. They reconnected her and also took out her appendix while they were there to prevent any complication in the future. She is resting comfortably and once her intestines heal we will be able to feed her for the first time not through a feeding tube. Thank you for all the well wishes - today was a huge step towards bringing her home!

 

11 Weeks

The last surgery is tomorrow morning at 8:30 am. Natalie is having her intestines reconnecting and put back inside her (yippee!!). It has been seven weeks since she first got sick and it has been a long road, but once she heals she will be able to eat and make dirty diapers again. We are very nervous about tomorrow. This is the healthiest she has been before any of her surgeries, but I just hate the whole idea of her being on the operating table.

Natalie is 5.5 lbs and 17 3/4 inches long. She looks like a newborn now, not like a preemie. Size-wise she is more than ready to go home and I feel like every day I walk in she gets bigger. She is still off her CPAP and doing really well. They started her off on absolutely no breathing assistance and kept her that way for about 36 hours. The second day, she was still doing good, but they were seeing how much work it was for her and figured it was not worth stressing her body a few days before surgery. Since then she has been on "high flow" which is basically just a nasal cannula. She likes to play with it and fit both little prongs in one nostril because she is sassy like that.

After her surgery they will slowly reintroduce food to her as her intestines are healing. Then she will finally get to eat. All of her food up to this point has been given to her through a feeding tube. Last week they gave her a little sugar water (which she loved) when they did her vaccinations. It must have worked because she did not mind the needles at all. Other than that, even though she is 11 weeks old today, she has never had any sort of taste in her mouth. We are very excited to see her eat for the first time. I read online about NICU parents really appreciating the little things and it is seriously true. I am excited about getting dirty diapers again and watching my baby eat. I never would have thought that this was something I would be thankful for when I had a child.

I will update you all when Natalie is out of surgery tomorrow. Keep the prayers coming - they have done wonders so far!

Here is your dose of Natalie Rose:

Awesome picture that Grandma got this weekend

First time wearing real clothes! (preemie sized, not newborn)

Last photo with her stoma bag! And her just being adorable.

Waving to all her fans

Cozy girl with her Mama

Face To Face

Since I have returned to work, it has been hard to find time to write here, so I am sorry my posts have been less often.

Natalie has been doing really well and it has just been sort of a holding pattern until her final surgery. Her reconnection surgery is scheduled for this Wednesday. I am excited to get this done and get her ready to come home. When she had her original surgery they cut out the dead part of her intestines in the highest area, but they also saw a decently sized portion of dead intestines lower. They obviously could not cut her intestines into three pieces, so on Wednesday, they are not only reconnecting her, but also cutting out the lower problem area and reconnecting there. I am just ready to have her put back together again (it sounds like I am talking about humpty dumpty), but soon after that she will finally be able to eat. I am excited to see her taste food for the first time, since it has only come through her feeding tube, but I am sure she will love it.

I cannot believe that this past Tuesday marked 10 weeks at the NICU. Today was day 73 and she is now 35 weeks gestation. It is just a crazy amount of time and I remember how far away it seemed back in January.

Natalie has officially hit the 5 lb mark, she is currently 5 lb 1.7 oz. She does not look like a preemie anymore, but just a small baby (trust me, there is a difference). She is still loving her pacifier, will grab and clutch any finger that comes close enough to her crib and chews on her shirt sleeves.

Her most recent roommate was born last week and ironically has the same exact due date as her. They were both due on May 8th, but obviously neither of them made it even close. It is amazing to watch how different it is to be born a 34 weeker compared to a 24 weeker. He is eating really well and needs no support otherwise. Them being the same exact gestation date is pretty unique and the new doctor that came on started talking to the mom about both of them (I was at work) assuming they were twins.

Natalie has always had pretty good respiratory stats, but since her PDA ligation, she has been even better. They had been talking about moving her off her CPAP and onto High Flow which is the next step. Yesterday, they discussed it and decided since she would have to go on the respirator for her surgery next week that they would just wait. So, I was rather surprised to walk in this morning and see that she wasn't just not on her CPAP, she wasn't on anything. Her nurse said when she took her off her CPAP for a couple of minutes to clean up her face and equipment (this is normal) that her stats were so good, she kept her off the CPAP for a few more minutes while she was there. Natalie continued to do real well, so she went and talked to the doctor and they decided to leave her off and see how she does. She did great and was so incredibly content to finally have that mask off her face.

Whenever she has gone on the respirator for her surgery we have always loved seeing her little face. It was so nice to not only see it, but it to be because she was doing well enough not to need the support and not because she was on the breathing vent because she was sick or in surgery.

So, everything is going as well as we could hope. Someone donated a bunch of brand new clothes to the NICU today and I got to pick out a cute little Easter outfit for her. I have run into so much goodwill there, it is quite amazing. I am hoping that after her surgery and recovery, it will be smooth sailing and just a few weeks of her getting stronger and that soon we can bring her home to reboot our life that has been on hold since she has been in the hospital.

Here is your (weekly) dose of Natalie:

So content without her CPAP

Hanging out with Mama

Watching everything going on around her - what a big girl!

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.