Natalie Rose - Daily Update of our Micro Preemie: PDA Ligation Surgery

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: