One More BIG Thank You

On of our amazing day nurses was not able to finish June's Journey in the hospital because of school commitments, but he'll be a big part of our learning curve at home since he is only a couple blocks away ;-)

Saying GoodBye...For Now

We could not be more excited to have our baby girl home with us, but we were sad to say goodbye to some of the best nurses. These fabulous ladies and man were more than just our nurses - they were family (and still are :-)). We cannot thank the NICU staff enough for all that they have done for us the last four months - without them, we wouldn't have been able to bring June home.

Saying good-bye to our night nurses:

 Saying good-bye to our day nurses:

Saying good-bye to room 305 and the NICU:

We will be back to visit!!!

Home

As many of you know, we brought June home on Monday after 117 days in the NICU.  The doctors decided Friday was a little soon since changes were still being made throughout the week. Each day, different tubes were pulled, and then they gave June some time to see how her body would handle the change - she is really not big on change.

By the end of the week, surgery wanted to trial feeding her by mouth. Essentially, June has never eaten by mouth. They trial-ran feeding by mouth a couple times when she still had a hole in her stomach, but she hasn't ever consistently eaten by mouth to get nutrients. The doctors agreed she should stay over the weekend to monitor her for 48 hours since this was a major change. June did okay eating by mouth - it was a lot of work for her and takes a long time. Sometimes, we need to vent her G tube because the pressure on her stomach makes her uncomfortable. June came home on a feeding pump. She is fed 33 milliliters of formula and breast milk an hour for 22 hours a day. For two hours a day she is off the pump (especially since we have a lot of doctor appointments to go to in the next couple months). The goal is to see if she can eat by mouth enough that she will eventually only get food through her J tube at night. They prefer that she nurse so that she has better control of the milk flow.


In the meantime, we hurried to get the house ready for June: carpets were cleaned, house was disinfected, medical draw was organized (that was a new one), and getting supplies to prepare to be on house arrest for the next several months, etc... We had CPR training specifically for June, took the NICU to home class, and trained on her medical equipment, medication and cares.

We got home Monday by 4 p.m. Within the hour, home health was coming to admit June. They will be coming twice a week to weigh June and check on her J and G tubes. We got June's medical binder organized and figured out our medical care routine for morning, midday and night. Then we settled down for some much needed family time.

We are starting to get a handle on the medical routine: flushing tubes, giving medication through her J tube, cleaning her tubes, and preparing her food - not to mention just remembering what it's like to have a newborn in the home: multiple outfit and bedding changes, figuring out what cloth diapering system is going to work the best and getting into a sleeping routine. Sawyer is adjusting - some moments are more graceful than others :)

Today we went to the doctor's office for both June and Sawyer. And tomorrow we have our initial meeting with Early Intervention Services to talk about June hitting her developmental milestones.

😀

How can that smile not melt your heart??

D is for Discharge

Where to even begin?!? By Wednesday afternoon, June woke up. Her eyes popped open, and she looked at me. Her surgery sites all looked good so they started priming through her J tube with milk. I'm the meantime, June got another PICC line for her to get medication and TPN (the supplemental food she was getting for the first 11 weeks). On Friday, they started increasing her feeds by three milliliters an hour every six hours, while decreasing her TPN. June came off TPN by Saturday and was back up to full feeds by Sunday evening.

Over the weekend, the surgeon on call talked about slowly pulling tubes a day at a time and then giving June 24 to 48 hours in between to see if any complications developed. On Monday, another surgeon rounding thought everything should be pulled if a dye study looked good. We met with June's primary surgeon prior to her being taken to her dye study and agreed to pulling tubes at a speed that was in between the two recommendations.
                                                

June's dye study looked fantastic. They pushed dye into her stomach through the g tube and didn't find any leaks. She did have quite a bit of reflux though. Since the study went well, they decided to clamp the nose tube to see if she could handle swallowing all of her saliva. She did okay throughout the night, with only three spit ups, but surgery thought the nose replogle might be causing her to make more secretions so they went ahead and pulled the tube out of her nose. At this point, they still need to pull her JP drain (which is minimizing fluid around the surgery sites) and clamp her G tube. They are also going to possibly try mouth feeds-more to see if it is possible for her and what/if we can work on at home.

Originally, it was discussed that June would be going home middle to end of next week; however, with her progress, surgery said she may be ready by the beginning of the week-if not by Friday. Yay!!! (And yikes!!) There is so much to do to get ready to bring June home it's overwhelming. We've been waiting for this day since she was born (I can say that and it's not an exaggeration:)), but to think that we won't have several trained professionals outside her bedroom door if something goes wrong is making me extremely nervous. Although we have had more than 110 days to prepare to bring her home, the laundry list just grew by 200%! I'm not sold that June will be ready by Friday, but believe it or not, the day is well within sight!

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.