Waitin' on a Woman (And Her Stomach)

I've put off writing this blog post. At this point, I'm not really sure what to write. We seem to be in a type of NICU purgatory - nothing bad has happened this past week, but there isn't much progress forward. June is just a standstill. The disappointment of the hole in June's stomach not making any progress (and at times opening wider throughout the week) has not been easy to handle. I feel like it was almost easier to stay strong during June's bad days than during these days of nothing. That seems awful to say because of course we don't wish ill health on our beautiful daughter - it's hard to describe in a way that makes sense.

June's disposition throughout this whole ordeal is inspiring. When I start to get down or lose patience, I remember that sweet face that looks up at me with all the love and trust in the world despite all the pain she has felt since the beginning of her life. I know that we have so many years ahead of us that will make this time seem like a drop in an overflowing bucket, but all the idioms in the world doesn't make this time any easier. Tonight kicks off a new week and a new round of optimism.

The one positive this week is that June continues to gain weight. She is now 10 pounds and above the tenth percentile on the growth chart. They upped her feedings to 29 milliliters of milk and formula an hour from 28 milliliters so she can continue to stay above the tenth percentile. Earlier in the week, we were still trying to feed June by mouth. For one feeding, I got to nurse June, and she did surprisingly well for not having ever nursed. Unfortunately, the drainage in June's wound vac drastically increased mid-week and all mouth feeds were stopped.

Physical therapy was started again for June. A couple times last week she did stretches and worked on holding her head up. She wasn't sure about the stretching, but she loved sitting up and being talked to as she worked on holding her head up herself.

The hole in June's stomach is the point of frustration for everyone involved. For weeks now it has been very small but still visible - a pinprick. Early this week it actually stopped draining, and although it was still visible, the surgeons thought that was a sign that it was healing. Unfortunately, the next day there was over 90 milliliters of drainage and the hole was slightly bigger. The wound vac has leaked almost every day, as they continue to try new approaches to get the hole to close without irritating her skin too much. On Thursday there wasn't any drainage again, so they decided to try taking the wound vac off, but within two hours, it was leaking through the bandages again. As I mentioned earlier, feedings by mouth have been stopped until the hole closes. We have done a couple five milliliter feeds by syringe when the wound vac was off so the surgeons can see how much comes out when she eats. When the milk goes into her belly, nothing comes out through the hole - only some air bubbles. The thought was the wound vac was sucking too hard on the wound, but within hours, drainage would be coming out again.

On Thursday they did a dye study to see if there was more blockage in the small intestines. It might be one reason why the hole wasn't closing because everything she was swallowing was being stopped from going into her intestines and coming back up through the hole. The good news is that there didn't appear to be any blockage, and when they did the dye study, not a lot came out of the hole in her stomach. Her TEF repair also looked good; the esophagus is narrow where the repair was done, so she might still need a dilation procedure in the future.

June continues to love all the attention she gets from all the staff (unless they are messing with her belly). She loves to sit up and be talked to, and sometimes she graces us with her adorable smiles (never for the camera though). 

Making Gains

June made some significant gains this week.

Weight is no longer an issue for June! Within four days she went from eight pounds, one ounce to nine pounds, two ounces. June's nurse had to weigh her twice just to make sure it was right. As of now, June weighs nine pounds, ten ounces. For once in her life, June has rolls (and not because she is retaining water). She is still around the tenth percentile for her age and weight, but she is making gains. June was getting fish oil in her food to increase the calories in the amount of milk she receives per hour. This week they stopped giving her fish oil. She is still getting 28 milliliters of milk mixed with formula an hour, which is considered continuous feeds. As of Tuesday, June is also starting to eat by mouth! Surgery is concerned that even if there isn't any more blockage in her intestines, it may be starting to scar back over and close. Since June's J tube is fed through her stomach down past the repair to her duedum, that area isn't being used to keep it open. If there still in blockage, the small amounts of milk she is getting will start to add up over the next week, and she will eventually spit up like she did prior to her surgery to repair her intestines. They will then know that she will need to have more blockage repaired in addition to a more permanent J tube being placed.

On Tuesday, we gave her five milliliters. I held a bottle nipple while her nurse would squirt some milk from a syringe into the top of the nipple for her to suck on. It took her a little time to figure out how to get milk from the nipple. She also was fussy when she got milk since she has never eaten by mouth; she was not sure what to do with it. It took a lot of work for June to swallow the very small amount that we gave her, but she is learning how to eat by mouth, which she has never done in her 12 weeks of life. 

We were able to feed her twice on Tuesday, but shortly after feeding her, the drainage from her wound vac increased. They stopped feeds for the day until surgery could be consulted on whether the increased drainage would further open the hole in her stomach. The doctors wanted her to continue trying to eat by mouth, so on Wednesday, we tried again. This time, she sucked on her pacifier while we squirted little amounts into her mouth by syringe. She handled the milk much better - almost seemed to enjoy it! Again, her drainage picked up, and even more this time, so they stopped feeds again.

On Thursday, we restarted feeding by mouth after her doctor rounded on her for the day. June's doctor wanted her to learn to use the bottle nipple instead of the pacifier, so we switched to an even slower flow nipple and tried again. During feeds, I had been holding her more upright to help her keep the milk down. Our nurse recommended repositioning her as if she were nursing, and she seemed to handle the milk better. Unfortunately, she struggled during her evening feeding. June now sleeps through the night (about six to seven hours) and most of the morning after surgery has seen her, so they didn't wake her to try eating by mouth. Today, once she woke up, we tried giving her five milliliters, and again, she struggled with eating. It almost seemed as if she were in pain once swallowing some milk. The doctor decided to up the amount of Prilosec (medication for her acid reflux) June is getting and try again tomorrow.

The other good news we received this week is that June is released from cardiology for the remainder of her stay (unless she is still in the hospital in three months). June still has two small holes in her heart, but they are staying the same size, so as her heart grows, in a sense, they are getting smaller. Her PDA hasn't closed either, but it is also small. The cardiologist is optimistic that June may not ever need surgery to close the holes, but because of the type of VSD she has, she will have a cardiologist for life. The heart can be very unpredictable, so they will monitor her to ensure the holes are not negatively affecting her growth. If her PDA does not close (which there is still a small chance it could) by three years of age, she will have to have it closed because if it is left open, it increases her risk for heart infection.

The ultrasound of June's kidneys still showed some mild blockage in one, but it is nothing they are very concerned about at this point. They will continue to monitor the blockage with another ultrasound next month. At this point, the blockage is mild so they do not need to treat it, just continue to monitor.

Keeping June's wound vac on continued to be a challenge this week. Unfortunately, every time it moves out of its placed location, the drainage leaks onto her stomach. The drainage is stomach acid, so it irritates her skin. The tape holding her temporary J tube in place loosens when the drainage leaks, and the J tube has started to come out. The J tube is a feeding tube with an IV connection (not typical at all). Every eight hours, the tubing needs to be changed out. A few times, the connectors have broken off, and the tubing needed to be cut shorter to attach a new connector. They will eventually run out of tubing on the outside of June's body if that continues to happen. If June looses that tube, we will not be able to feed her. With every dressing change of the wound vac, the J tube is also getting pulled on. Right now, the stitches that were originally holding the J tube into her stomach are about seven to nine centimeters away from their starting point. 

We are five weeks and counting from June's last surgery. The doctors think that the hole in June's stomach continues to get smaller, but the doctors cannot really lay out a plan to get June on her way home until the hole closes. Initially, the hope was to have her "final" surgery six weeks after her fourth surgery; however, that doesn't seem like it will be happening anytime soon because they need to study her swallow and figure out if there is still blockage in her intestines. We cannot say the H-word (home) or D-word (discharge) for a while yet.

On the Upswing Again

Things turned around for June by the end of the week in some regards, and in others, it is still just a waiting game. After her fun photo shoot at the pumpkin patch, June took a trip to get a VCUG (Voiding Cystourethrogram), which provided images of her urinary system. Because June had blockage in her kidneys, this test would tell them whether urine was refluxing back up into her kidneys, making her more susceptible to urinary track infections. June's bladder was filled with contrast, and then they took X-Ray pictures to see if her urine was refluxing. They were able to tell right away that she did not have reflux. Toward the end of the week, they also did an ultrasound of her kidneys to check the blockage. June started out with mild blockage on her right side and moderate blockage on her left. When they did the ultrasound last month, the blockage on her right side had resolved, and the blockage on her left side was mild. We are waiting for the results.

They tried removing June's wound vac again at the end of the week. The reasoning was because the repoggle (tube in her mouth) was still in and was sucking most of the fluid. (The repoggle was sucking out 70-80 milliliters of fluid every eight hours compared to the wound vac sucking out less than 20 milliliters every eight hours.) Unfortunately, the pressure dressing they replaced the wound vac with was soaked by the end of the day, so the wound vac was put back on. The surgeons put a different type of wound vac, and this one seems to have some difficulty staying on. This weekend the tube sucking on the sponge covering the wound fell out multiple times. I will post a picture of June's stomach at the very bottom of this post (with lots of space in between so not surprise anyone who would prefer not to see it). It looks so much better, so that's why I'll post it. I'm not going to post any of the previous pictures because they can turn the stomach of someone who is not squeamish. 

One piece of good news is that June's repoggle was pulled:

Goodbye annoying tube in my mouth!

The other good news is that Jason finally got over his virus and finished up his antibiotic so he was able to see his baby girl again:

Throughout the week June has continued to lose weight. Not a lot - about 15 grams every other day - but her weight is not headed in the right direction. During the week she dropped from eight pounds, four ounces to eight pounds, one ounce. It doesn't sound like a lot, but that took her from above the tenth percentile to well below it. Again, not super alarming because many babies on the unit are not even on the growth curve. Right now, June should be gaining about five to seven ounces a week. Her doctor decided to increase how much food she was getting an hour from 25 milliliters to 28 milliliters. They tested my milk to make sure it had enough calories in it as well. On average, milk has 20 calories per ounce, and mine ended up having 21 calories an ounce, so they knew she was actually getting what they were calculating her caloric intake to be. They decided to also change the way the milk, formula and fish oil were being mixed together to ensure she started getting more protein. 

They have been measuring June every other day. From Friday to today, June jumped 13 ounces from eight pounds, one ounce to eight pounds, fourteen ounces. Unfortunately, such a significant jump can not necessarily be good either - it might mean she is retaining fluid. She has had her repoggle pulled in that time too (which was pulling quite a bit of fluid out of her) so her weight gain could be attributed to the excess fluid in her body. They are going to continue monitoring her weight for now.

They decided to discontinue June's seizure medication tomorrow. The Neurologist believes that she was having febrile seizures because she was so sick from the infection after her second surgery. They will continue to monitor her closely. This week will also bring another echo of her heart to monitor the holes and how it is functioning.  With Jason able to be at the hospital again, we will go back to our routine of him spending nights and me spending days and some evenings with June. We are now four weeks out from her last surgery, so we are hoping that they can start to figure out how they are going to feed her; however, that is dependent on the hole closing in her stomach. As of right now, I would estimate that we have at least a month before we go home, but only time will tell...

The scar on June's back is from her first
surgery to repair her TEF.

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The dark red and purplish area on June's stomach is where the two inch incision from her third surgery split open because of the infection. In the dark red area, you can still see (not in the picture but in person) the pinprick-sized hole in her stomach. The tissue, and now skin, have started to grow back, and it is healing. The white tube is how June is currently getting her food. It is snaked in through a hole in her stomach where one of her G tubes had been placed. The make-shift J tube goes through her stomach and far down into her small intestines (past the blockage that was repaired in her second surgery). This tube is not secured - we have to watch very closely it does not get pulled because then the way to feed her is lost, which is why she cannot come home with that particular tube.

A Visit to the Pumpkin Patch

The fun fall photo shoot we had today in room 305 thanks to our amazing nurse, Megan! June wasn't sure what to make of getting dolled up and wearing a headband, but she sure loved the fuss everyone made over her!