A Few More Days, A Few Less Tubes

All tuckered out after her big day

Bright Eyes

As day 68 of being in the NICU comes to an end, we are excited to share that June had a fantastic last few days! The doctors have increased her feeds from 22 milliliters an hour to 25 milliliters an hour. The milk is still fortified with formula for the extra calories. They have also added fish oil to her milk to put more fats in her feeds and get some meat on her bones. She is still under eight pounds (putting her in the 10th percentile - but at least she is on the growth curve :)).

On Monday, surgery switched June's repoggle (the tube coming from her mouth) from suction to gravity. Instead of pulling her secretions out of her stomach (to help the hole heal by keeping it dry), gravity allows the secretions to naturally drain. On Tuesday, surgery decided to pull the repoggle out. It was so amazing to see June without any tubes on her face - a first since birth!

No tubes in my nose or mouth - say what?!

June's PICC line has been in her arm since birth. It has been used to give her medication and feed her with TPN. Once the doctors took her off TPN, they kept the line in her arm since she was still getting medication. They have been debating whether to pull the line because if her temporary J tube comes out, it would be a way to feed her with TPN again; however, it can be a source of infection. On Tuesday they decided to pull the line. They will have to put another IV in again when June goes back into surgery, but for now, she is getting any medication she needs orally and no longer needs the PICC line.

Although June has never eaten by mouth, she still does a great job sucking on her pacifier and uses it to soothe herself. Typically, pacifiers aren't given by the hospital in the nursery to babies because of nipple confusion as they are starting to learn to nurse. In the NICU, they do give babies pacifiers to help them practice their sucking skills since many of them do not eat right away. Many babies who have never eaten by mouth can have an oral aversion, but June seems almost annoyed when sucking on her pacifier doesn't yield any food.

June loves when her nurses sit
and talk to her - in fact, she demands it :)

Both arms inside her sleeper since the
PICC line is gone

Two Months: September 23

When we took June's one-month photos in the hospital, our hope was that was it. Now, we hope we will be out before she is four months. Despite the disappointing news, June has had a very good week yet again (And yet again, we are hesitant to post this because it seems as soon as we say that, something happens.)

June got moved to a regular crib, which means she can now regulate her temperature.  She will go back into a warming bed when she goes into surgery.

On Monday, June was taken off TPN for the first time in her life. It was very exciting because it meant she was handling her milk enough to get all her calories from it. By Tuesday, June was getting full feeds (22 milliliters of milk mixed with formula to get her more calories without increasing the volume).

On Thursday, they started giving her 24 milliliters of milk/formula. Today, they added fish oil to her milk to give her 15-20 more calories of fat. They need to get some meat on her bones to make sure she can handle her next surgery better than the last one. Currently, June weighs 7 pounds 11 ounces.

June came off a lot of her medications this week. They stopped the antibiotic she was taking for her infection on Wednesday. Once the hole in her stomach has healed and the wound vac is taken out, she can come out of isolation (meaning no more gowns and gloves hopefully in the next couple weeks). June also came off her morphine this week. She had some minor withdraw symptoms but is now handling not being on any pain medication. June is still on one of her seizure medications, but now they are talking about weening her off it slowly. Since June is on a lot less medications, she is much more awake.

On Tuesday, June had her two month vaccinations. We weren't at the hospital when they gave them, but we were told she handled them very well. Some crying but she settled down very quickly after being picked up.

The surgeons continue to come by every day and check on the hole in June's stomach. She has the wound vac sponge changed every few days. The doctors say the hole is almost the size of a pinprick. The flesh wound is still quite large and will take several weeks to heal. Right now, they think June's next surgery is still another four weeks away.

Meeting Baby Sis for the First Time

First family photo - it was so amazing to all be in the same room for once,
let alone the same city (even if it was just for 30 seconds :))

We have been hesitant to introduce Sawyer to June because we have to make sure he does not push any buttons, grab cords or run around like a wild man. That is just a lot to ask of a two-year-old, and we want his first encounters with his baby sister to be as positive as possible. His first visit lasted all of 30 seconds, and when we come visit June, we are there for several hours.

My parents happened to be in the area with Sawyer, so we thought we would give it a try since we had someone to take him home right away. After a two minute scrub (where we each grabbed an arm and sang about bubbles the entire time) and bribing him to put on a mask, we went to see his baby sis. (I'm sure it was very entertaining for everyone at the front desk :))

Like I said before, it lasted all of 30 seconds but he did point out his sister's "ba" (pacifier) and told her "bye-bye June". It was a sweet moment, and we cannot wait to have these times at home!

Sawyer was ready to get the mask off so he told his sister "bye-bye June"

Things are Looking Up....Sort Of

June has improved leaps and bounds this week. We were nervous to post what a great week it has been because once June has three good days in a row a wrench is bound to get thrown in the plans.

On Sunday, June was taken off her ventilator. She had been taking steroids prior to going off the ventilator to decrease her chances of failing and needing to be re-intubated. She also had to pass a minute ventilation test, where the respiratory therapist turned off the ventilator but left it in to see if June could breathe for a minute on her own. They put June on a nasal CPAP which provided a steady stream of air flow to June's lungs. A few days later she was moved to a high flow nasal cannula, and by Thursday she was breathing room air all by herself!

June's feeds have been going very well too. Initially, the milk she was getting was considered a prime because they weren't counting it in her calorie intake since it was so little, but at the beginning of the week they moved her to feeds. As the amount of milk she gets goes up, the amount of TPN she is getting goes down. This is good because we are not meant to survive on IV nutrition, and it had started to take a toll on her liver. If we can get her off TPN soon, she might not develop a liver disease and need medical treatment. She started off with her milk intake being increased by one milliliter every 12 hours. As of today, they are increasing her milk intake every eight hours. If everything goes to plan, she will hit full feeds (22 milliliters an hour, which is calculated by her weight and average intake for her age) by Wednesday.

We met with the cardiologists this week. Previously, I had mentioned June has VSD, which means blood in the left side of her heart (which is normally pumped to the body) can travel to the right side (which is normally pumped to the lungs). The extra blood being pumped into the lung arteries makes the heart and lungs work harder and can lead to the lungs becoming congested. June has what they consider to be a moderate opening between the two chambers. Her hole is at the top of the chambers which makes it less likely to close. At some point, this opening could make it harder for June to breathe and cause her to have trouble feeding and growing at a normal rate. The high pressure in the blood vessels due to excess blood could cause permanent damage to her lung blood vessels.

The tricky part about determining if June needs surgery is that she already struggles with the symptoms they look for to indicate the need for surgery. She struggles with feeds. In fact, she won't be able to feed by mouth for months and may need her G tube to stay in for years to help supplement her body with nutrition she isn't getting because she cannot eat as much. She also has trouble breathing already because of the surgery done around her trachea.

Right now, they think she is getting close to the point where she will not need open heart surgery during infancy. The doctors said that although the hole in her heart is not getting any smaller, the blood flowing from the left to the right side is restricted. They will need to continue to monitor the blood flow and size of her heart chambers by echoes done every so often. June also has a slightly larger heart than normal. We do not know how this will play into her need for surgery, but it sounds like some of the doctors think she will need surgery by age two or three.

We also found out that there is an outpatient heart procedure June will need at some point. It is not as invasive as closing the whole in her heart. June has Patent ductus arteriosus, a heart problem that occurs soon after birth, and more commonly in premies. Before birth, the two major arteries (aorta and pulmonary artery) are connected by a blood vessel (ductus arteriosus), which is essential for fetal blood circulation. After birth (within minutes) the vessel is suppose to close; however, June's did not, so oxygen-rich blood from the aorta is mixing with oxygen-poor blood from the pulmonary artery. This also can put a strain on the heart and increase blood pressure in the lung arteries. If this stays open, it can also lead to heart infection. Right now, it sounds like June will have a catheter-based procedure later down the road.

The neurologist was impressed with how June is doing and felt that she was showing no signs of seizures! In his daily check-ups, he felt that June's reactions were appropriate and her reflexes had improved. She was monitored with an EEG one more time Thursday afternoon, which showed no signs of seizures. They are going to take her off one of her seizure medications. She will most likely go home on the other and be on it for some time.

Now here comes the wrench in June's progress: Every couple days surgery comes to change the sponge on June's wound vac. This sponge is placed over the hole from her previous g tube and incision that split open, and it is helping suck out the infection so those sites can close. On Thursday afternoon, while changing the sponge, surgery noticed that June's third g tube was falling out. The balloon that sits in June's stomach and holds it in place was coming out of the hole in her stomach. Her stomach is just too small right now to hold a g tube in place so they decided to pull the G tube all together. June still has a make-shift J tube snaked into her intestines and allowing her to eat; however, it is not something that she can go home with. They will need to let June's abdomen heal for several weeks before they can decide how they will come up with a way for June to eat.

Most likely, June will have a J tube placed into her intestines once the surgery sites have healed. The doctors think it will be months before June will be able to stomach feed. This means at least one more procedure before June can go home to place a j tube. Then June will have to come back to have a g tube put in in the months to come. We were hoping to have June home by mid-October, but now, it could be November before she comes home.

This week we got to bathe June for the first time (but not the first time she has been bathed). We also got to hold June for the first time since August 26th.

The Last Three Weeks

June is now seven and half weeks old. At this point, we thought we would be home by now, snuggling with our baby on the couch while we watched Minions with Sawyer. Unfortunately, the last three weeks have been a roller coaster ride for June with more downs than ups. We reached a point where we were nervous to leave the hospital because what might happen with June, yet not excited to come back to learn about whatever the newest complication was that had developed. And I desperately miss holding my baby girl. Since her surgery on August 28, we have not held her.

After the last esophagram, June was scheduled for surgery to go in and repair the atresia in her small intestine. The surgeons also planned to put in a G tube (as a way to feed June since they were sure how she would be able to swallow).

The surgery lasted about three hours. When we met with the surgeon, we found out June had to have much more done than expected. Not only did June have a Ladd's procedure to remove bands of tissue that were blocking the passage from her stomach to intestine, she also had intestine malrotation, which occurs when the intestines don't position themselves normally during fetal development (usually around the end of the first trimester). Since the intestines don't position themselves correctly, they aren't attached inside properly. When fixing the rotation, June's appendix had to be removed to make room for her intestines. Vomiting is a common symptom of malrotation, which is why June could not keep her food down.

A G tube was also placed in June's stomach, which would eventually be used to feed her. Lastly, June had a Nissen fundoplication to stop Gastroesophageal Reflux Disease (GERD). This surgery strengthens the valve between the esophagus and stomach to stop acid from backing up into the esophagus and allow it to heal, which is done by sewing the upper curve of the stomach around the esophagus.


During the next week, June's stomach got more swollen with bright red streaks around the surgery sites. The skin around her G tube looked like it was falling away. With X-rays, it was determined that there were pockets of air in her stomach cavity, meaning there was a leak either from around the G tube or from the recent repairs. An ultrasound of her stomach showed there was a pocket of puss in her stomach. The infection needed to be cleaned out and cultured to determine what antibiotics to give June.

The next weekend June was headed back to surgery. The infection was cleaned out of her stomach. There was a leak in both her stomach and intestines that were repaired. The old G tube was removed and the site was closed up. A new G tube was placed in June's stomach with a feeding tube that was threaded down into the intestine. With everything June had had done to her stomach, it needed time to heal, so the feeding tube would allow her to start to get nutrients but have them delivered past her surgery sites.

That night June's nurse noticed unusual eye and tongue/lip movement. She was connected to an EEG machine, which monitored her brain activity, and it was confirmed that June was having tonic seizures. Tonic seizures are rare, especially in an infant. During a tonic seizure, June becomes very stiff. She also quits breathing and turns a nasty shade of blue. These seizures were happening while June was sleeping and involved her entire brain.

June needed a spinal tap to check for meningitis or encephalitis. Thankfully, the results came back normal. An ultrasound of June's head was also ordered. It was found that June had ventriculomegaly, where the fluid filled structures in the brain are abnormally large. The neurosurgeon felt that currently June's lateral ventricles were not big enough for serious concern, but she will have to have follow-up ultrasounds to monitor their size. If they increase, she may need surgery in the future. June also had a MRI to see if she had a congenital abnormality, damage to the brain from loss of oxygen, suffered a stroke, etc...  The initial read of the MRI by doctors showed that everything in June's brain was normal. We will find out more next week regarding those results when we meet with the neurosurgeon and neurologist.

Between the seizures and pain, June had lots of difficulty breathing this past week. The two times they tried pulling her off the ventilator, she failed and had to be reintubated. She had several episodes where she stopped breathing.

During the week, the culture came back on the infection pulled from June's stomach. She had to be put in isolation to prevent spread of the infection. Anyone that comes in her room has to wear a gown and gloves. We do not know how long she will be in isolation. Then the incision from June's last surgery split open because the infection needed to get out.

Yet again, June headed back into surgery this past weekend. Her G tube had broken, which wasn't allowing her stomach to heal. Her G tube was replaced with one that would better hold the stomach against the abdominal wall to prevent leaks. A wound vac was also created to cover her incision that had split open. This will allow the wound to close while sucking out the infection.

The silver lining during all this is that June started feeding. She gets one milliliter an hour through the feeding tube into her intestine (called priming), which is a little less than two tablespoons a day. Yet, she is getting milk!

This was a difficult post to write because we never want to relive the last three weeks. We cycled through more emotions everyday than I thought possible: exhaustion, disappointment, dismay, relief, anger, frustration, excitement, apprehension - the list goes on.

I'll admit these past few weeks have challenged my faith. Why did all of this have to happen to a sweet baby girl who has just barely entered this world? I have to come to terms with understanding that there sometimes aren't explanations for why something happens the way it does, but that is easier said then done.

As June's parents, we are responsible for loving and caring for her. So many times we have felt so helpless. We continue to ask ourselves what have we done wrong? Is there something we are not doing to protect our little girl from all this hurt?

We have a lot more to find out about June's health, but we are hopeful after this last surgery things will start to turn around for June. She is an amazingly strong little girl. For the last couple weeks she has been very sedated, but today we saw June again - there was life in her little eyes and she was giving her nurses those expressions she is becoming known for in NICU.

One Month: August 23

The past month has been one of waiting as June's surgery site heals from her TEF repair.

During this time, the doctors continue to monitor June's VSD in her heart with echoes. We do not know yet if and when June will need open heart surgery. There is a small chance the hole could close on its own, but taking into consideration the size and location, many of the doctors feel that she will need surgery at some point.

Ultrasounds on June's kidneys are also done during the month of August. By the end of the month the doctors found that the blockage in the left kidney is resolved and the blockage in the right is almost resolved.

June has been on a high-flow nose cannula because of the weakness in her trachea and the pressure on her lungs. She also hasn't officially eaten by one month.

We had finally established a routine: Jason spent the nights with her and I went during the days. That way we were there when the doctors rounded as well as during the night, which is typically when June had her rough spells.

Looking back, I remember it felt like two steps forward, one step backward and sometimes the other way around. We just want the chance to introduce Sawyer to his sister and be in a room together, the four of us as a family.

The Waiting Game

After June was pulled off the ventilator, we were able to cuddle with her (well, as much as you can with all the tubes, cords and drains June had attached to her). Then the waiting game began...

Each esophagram (she had five on July 31, August 3, 13, 20 and 26) showed that June still had a leak at the repair site of her TEF, which meant that she could not feed. After a couple esophagrams, the doctors thought that the JP drain (which was pulling all of the fluid leaking from around the repair site out of her body) might be too close to the repair to actually let it heal.  Surgery reopened part of her incision site to move the drain away from the repair. The good news is that within a week June's leak became minimal.

During this time, June encountered a few complications. Her trachea was weak and breathing was labored because of her VSD. There was a lot of pressure on her lungs, and she had a few spells where she quit breathing or couldn't get enough oxygen to her lungs. She also had lots of secretions that were hard for her to swallow because of the narrowing in her esophagus. The doctors felt that it was best for her to lay on her stomach so that her trachea would stop collapsing.

By the fourth esophagram (August 20) the doctors felt that the leak was restricted enough to start feeding. We were very excited about her finally getting some milk!

Unfortunately, with hours of them starting to feed June, all the milk was coming back up - both out of her drainage tubes and her mouth. The explanation for the milk coming out of her drainage tubes was that June had developed a chylothorax. It is a rare condition but commonly develops in babies with TEF. It results from either disruption (surgery) or obstruction of the thoracic duct. I'll try my best to explain it in layman's terms (this should take you back to freshman biology):

Your arteries and veins carry blood to and from your heart, lungs and tissue with "good" and "bad" blood. The third system involved is your lymphatic system, which takes the used fats from the tissue back to the circulatory system. The doctors thought June's system was either disrupted or not fully formed because those fats were leaking out into the chest cavity instead, which was part of the reason she was having trouble breathing. They switched June to a formal designed for babies with chylothorax, but again, everything that was fed to her leaked right back out.

If the lymphatic system was disrupted from surgery, it would take some time for her to heal (meaning more time without food). The other possibility was that her lymphatic system hadn't formed correctly. If this was the case, we would need to wait at least six weeks for the system to grow a new route. For the time being, feeding would stop and be tested later to see if her chylothorax had resolved itself or needed more time. Feeding is one of the keys for June to heal and go home, so this was disappointing.

The other concern was that June was refluxing the milk and formula too. With the last esophagram (August 26), the doctors found that there was no longer a leak; however, they noticed esophageal dysmotility (meaning the way her esophagus pushed food to her stomach was irregular). There is talk about dilating her esophagus to help, but that will be several weeks down the road so that the repair site isn't reopened.

During the last esophagram is when the doctors also noted that there was blockage from her stomach to intestine, a duodenum atresia (the A in VACTRL association that I wrote about in the previous post). At this point, the doctors felt the chylothorax was a complication of the previous surgery, and we would not have to wait for her lymphatic system to regrow. They now had a definite explanation as to why milk and formula was refluxing out her drainage sites. Chylothorax is a complication that continues to be monitored, but, at this point, one hurdle we hope June is over.

June is the first baby the doctors had seen with an atresia at both the top and bottom of the GI track. At the end of August, she was headed back into surgery to repair the blockage, and hopefully, move forward.

June's First Surgery: TEF Repair

June's surgery to repair her TEF was scheduled for Saturday, July 25. She did well during the surgery. The surgery took a couple hours, and when she was finished, we were able to go see her in her room.


June's section of esophagus that was missing was a little bigger than anticipated, so the repair site was tight. A two inch incision was made under June's arm to repair her esophagus and trachea. Surgery unattached her esophagus from her trachea. They patched her trachea and then pulled and sewed the two sections of her esophagus together. Typically, surgery would pass a feeding tube down the esophagus into the stomach during surgery, but they were not able to because June's esophagus was narrow and swollen. Surgery would try feeding the tube through her nose down into her stomach once the site where her esophagus had been repaired healed a little more.

I was still recovering in the hospital during June's first surgery. Luckily, June and I were in the same hospital, but we were on opposite sides of the complex. The nurses stressed how important it was for me to rest as well as see June. When we had Sawyer, we kept him in our room our entire stay, so trying to balance seeing my baby and getting rest was very hard (mom guilt times ten).

June came back on a ventilator for five days. During that time we could reach our hands through the windows on the side of the bed to touch her, but we could not hold her. The top of her Omnibed had to stay down since she still needed help regulating her body temperature.

In a week, surgery would do an esophageal test (esophagram) to see if the surgery site had healed. During this test, June would drink so liquid with dye and they could see if was leaking out at the surgery site while traveling down to her stomach. Since June couldn't eat during this time (or since she was born), she was fed intravenously with TPN (a cocktail of nutrients to support her).