Surgery Take Five

It feels like we are experiencing a cruel deja vu. On Monday morning, we met with the surgeon and discussed June's options. After seven weeks of waiting for the hole in June's stomach to close, we decided to have the surgeons stitch it shut. They also planned to put in a feeding tube for June to go home on. Making the decision on whether to send June into surgery was agonizing. She's had four surgeries already so we did not want to send her back into the operating room just because we had run out of patience, but how long should we wait for the hole in her stomach to close? And would it ever close?

Before she headed down to surgery, our nurse helped us take some pictures of her without her nose tube :) Besides the day she was born, I think these are one of our first few pictures of the three of us:

We even got a couple three month pictures:

After pictures, June and I settled in for some much-needed cuddle time before she was taken to the operating room. June was scheduled for surgery at 3 p.m., and the surgery was suppose to take an hour to an hour and a half. At 12:30 p.m., they called to say that June was going to be taken now because they had only one case ahead of her that would take about five minutes. We headed down to surgery around 1 p.m., and June ended up not heading into the operating room until around 2:30 p.m.
At 4:20 p.m., the operating room nurse called the front desk in the surgery waiting room to tell us they were closing June up, and she would be headed back to her room shortly. We stayed in the waiting area for the surgeon to speak to us about the surgery. The minutes crawled by, and every time the doors that lead back to the surgery area opened, we sat up in anticipation of seeing June's surgeon walking out. An hour later, I was in a panic.

Something had to have gone terribly wrong. I just remember looking at the time and getting sick to my stomach with grief about sending June to surgery. We didn't want to leave the waiting area in case her surgeon came out to speak to us, but we needed to check in with her nurse in case they had left notes in her chart about what was happening. I kept trying to call upstairs, but since the waiting area is in the basement, my calls kept dropping. Jason finally got through to our nurse, and she hadn't hear anything either. She was concerned when she heard that they hadn't given us an update and said she would call right away.

I went upstairs to find our nurse in case she found out anything. She had just gotten off the phone with surgery. Something had happened with the first Jejunal feeding tube going into June's small intestine, and they decided to put in a different J tube and Gastrostomy tube. (This is now June's fourth G tube, as her other three have fallen out.) Her hour procedure had turned into almost four hours. The surgeons felt like they were able to accomplish what they had hoped for, it just took them longer than expected because June had a lot of scar tissue.

At 6:30 p.m., they brought June back up to the room. She was extubated, which surprised us because of how long her surgery lasted. June has never been able to come back from surgery off the ventilator, and unfortunately, within a couple hours, she ended up being reintubated. June had a couple episodes where she dropped her oxygen saturation levels and heart rate, but the nurse practitioner was concerned that a high-flow nasal cannula would put too much pressure on June's gut. Between the pain in her stomach and the morphine, they decided putting her back on the ventilator was the best option.

Surgery was able to close the hole in her stomach. The hole was in a couple layers of the stomach, so the stitched the hole shut from the inside and then the out. The surgeons said there was so many adhesions that no matter how long we would have waited, the hole wouldn't have closed on its own. It was the right call to take her back to surgery. When I hear this or think about it, I cannot help but get tears in my eyes, a lump in my throat and a pit in my stomach. We just want to do whatever is best for June, and although it looks like we took several steps backward, in the end, it is what will help her move forward. But that doesn't make me feel any better about having to make that call.

June has been more stable today. She will need to stay on the ventilator for a little longer than anticipated. The right lobe of her lung has collapsed a little. The respiration therapist explained that that is normal when a baby is struggling to breathe, especially for June because that is near the area she had her initial surgery (which caused the right lung to collapse slightly previously). The struggle today for June is keeping an IV. For all of June's previous surgeries, she had a PICC line where fluids and medication were delivered through. Since they are hoping June will be able to start feeding in a couple days and won't have to have TPN, they have been giving her fluids and medication through IVs in her feet, hands and head. Unfortunately, the rate at which she is receiving her fluids is so high that her veins continue to clot or collapse.

The surgeons' goal is to keep June's stomach as compressed as possible so that it can heal. The G tube will be mostly to help let out gas. She currently has a JP drain in as well to ensure that air doesn't build up around her stomach. She also still has her nose repoggle to help keep fluids out of her stomach. They are hoping to feed her through her J tube in a couple days since the J tube is lower than her original feeding tube and won't send food through any of her surgery sites. The plan is to get her back up to full feeds and hopefully home where she will work on eating by mouth, but we are just along for the ride June wants to take us on at this point.

Happy Halloween

Three Months: October 23

About a week and half ago (October 23) Miss June turned three months. I had been holding off on taking her three month pictures because of the new accessory she has on her face, but with the possibility of surgery on tomorrow morning looming, we took her three month pictures this past Friday. At three months, June is 10 pounds, 3 ounces (putting her at almost the 15th percentile). 

                                       

June loves watching her animals (lion, elephant and monkey) on her mobile. She watches one go around until it floats out of view, and then follows the next one. While she watches her animals, she kicks and seems almost ready to talk.

***************************************************

This week started off with one last attempt to get the hole in June's stomach to heal. June first started off with a repoggle that was threaded down into her stomach by her mouth. She absolutely hated it. June's esophagus is narrow where it was stretched and repaired, so she has a pocket of secretions that sit above the narrowing. With a tube down her throat, it made it difficult for her to swallow, and she started choking on her saliva.

After June woke up from her afternoon nap, they moved the repoggle to her nose. The repoggle is to take the place of the wound vac. The surgeons think the wound vac may be sucking on the hole in June's stomach too much and not allowing it to close. After the repoggle was placed, they removed the wound vac on Wednesday. They change the dressing on June's stomach every couple hours so her stomach bile doesn't eat away at her skin. The plan was to watch for more drainage from the hole. If June's stomach continues to leak throughout the week and weekend (which it has), June will head back into surgery on Monday.

On Friday, October 30, we "celebrated" June's 100th day in the NICU. (Surprisingly, Jason and I are still somewhat sane :)) This little girl is definitely a trooper.

June continues to grow. As of today, she is 10 pounds, 6 ounces. While we are happy she is gaining weight, there is some concern. When June reaches five kilograms (11 pounds, 1 ounce), she has to move to the PICU (Pediatric Intensive Care Unit) or PIC (Pediatric Intermediate Care). Most likely, June will move to PIC because she is stable enough. The reason June would need to move is because the NICU doesn't have the medication and supplies needed to resuscitate her if she were to code.

While this still isn't a definite (it's possible this is the last surgery June will need before she can go home), it will be a big change - especially for us. We had an emotional end to the week, and I really cannot talk about it without tearing up. Moving to PIC means losing our entire team that has cared for June since she has been here. The people that are watching over our beautiful baby girl when we cannot be there won't be her nurses anymore. We will get new nurses, doctors (except the specialists and surgeons), care managers and a case manager. The setup and team structure is completely different in PIC.

As I mentioned earlier, this move is not definite. It depends on quite a few variables: if there are beds, babies that need to move before June, weight loss from surgery, and success of surgery. There is one or two babies that are bigger than June, so they would need to move first. Also, if the PIC is full or if another child comes in around the time June is going to transfer, June would stay in the NICU because they know she is being taken care of. June will lose some weight with surgery (because she won't be eating for a couple days) and any weight gain will be water weight that won't be counted. Lastly, if June recovers from surgery quickly and is at a point where she can go home (with a lot of support at home), she might not have to move.

The managers of the NICU know how well we like to be prepared, so they started having the "moving to PIC" conversation with us now. We got a tour of the PIC on Friday, and as/if we get closer to being moved to PIC, we will meet with some of the doctors. Hopefully, this exercise is all for not. (The PIC seems like a wonderful place full of terrific people, but maybe it's a place we can visit at a later date. :))