Coming Home with a Tubie

There’s no place like home! Today marks one week since bringing Isaac home from the hospital with a feeding tube. Homecoming with a “tubie” has been quite an adjustment for everyone. First issue was where to put everything! We’re already hurting for extra space and now we have all of these medical supplies to store. We’ve converted my husband’s desk in the living room into a storage table of sorts.

I’m sure as we all become more accustomed to our new normal, we’ll better discover what works and what doesn’t. I think the biggest adjustment has been how time-consuming a feeding pump is. I’ve been trying to find some sort of routine to it all. First, I have to pump so I have milk to give Isaac. I’ve been incredibly blessed with an abundant milk supply and can pump enough first think in the morning for all of Isaac’s feeds that day. I’m getting a minimum of 25oz first thing in the morning – ouch! When it’s time to eat, I let Isaac try by mouth first, until he starts to struggle, then we use his tube. It’s a balancing act between letting him eat by mouth and protecting his lungs. I don’t want them to get as bad as they were and I also don’t want him becoming dependent on the tube and developing oral aversion. He’s averaging about 2-3 minutes of nursing before he starts to struggle. I’ve been keeping track of everything, looking for patterns, and just trying to keep myself organized and (relatively) sane.

Our first morning home, Isaac’s pump wouldn’t work. I tried everything I could think of and couldn’t figure out why it kept giving me the “NO FOOD” error message.

I called our infusion company and she walked me through all the troubleshooting she could think of, but nothing resolved our issue, so the company rushed me a new pump. I received it about 3 hours later! They also sent a back-up pump because of how far we live from the nearest supply office! I’m very pleased with this company so far!

One of my fears is that Isaac will pull his tube out. Until yesterday, I’ve never actually placed an NG tube in anyone. I’ve known the theory, seen it done, and practiced on mannequins, but have never performed it on a person, let alone my own infant child. I’ve tried to be very proactive about taping Isaac’s NG tube so he can’t pull it out. The night before we were discharged, I was researching different taping techniques and materials and I came across a wonderful blog entry (http://agirlandhertube.blogspot.com/2011/11/adhesives-part-1-adhesives-taping.html) that goes over various materials and techniques. Between this and speaking with fellow tubie moms, I’ve been trying a combination of duoderm, tegaderm, and hypafix. The duoderm is the bottom layer on Isaac’s cheeck over which the tube is taped with tegaderm. And by his nose, I’m using the hypafix and combining two techniques I’ve called the “pac-man” and the “moustache”. So far we haven’t had any accidental tube removals.

Yesterday was my first time placing an NG tube. It is definitely a 2 person job. Even with Isaac swaddled, it helped to have someone holding his head still while I measured, threaded, checked placement, and taped the tube. I hate that I will have to do this to him every week. It’s obviously very traumatic for him because just seeing me cutting the tape, he started screaming and crying. My heart hurts for what I have to do for him. I realize that he won’t remember any of this but that doesn’t negate the fact that he still experiences it in the moment. The hardest part of being a mother is knowing you are causing your child pain and being helpless to take it away.

Seeking a diagnosis (part 2)

Upon arriving at Maine Med Sunday afternoon, we were taken straight to a room in the Barbara Bush children’s Hospital (BBCH). After asking a million questions about what brought us here, the admitting doctors made the decision to stop letting Isaac eat by mouth and feed him via an NG tube (a tube that goes into his nose and straight into his stomach, bypassing his airway junction).

Within a day or two after he received the NG tube, his wheezing stopped and his lungs cleared. I was blown away by how quickly his breathing improved. He hadn’t sounded that good in months! The plan was to continue tube feeding him until the pulmonologist and ENT  could coordinate a bronchoscopy in the OR, using two types of cameras. Unfortunately this couldn’t be arranged until Thursday, so we were basically just waiting around until then.

One of the hospital ENT doctors stopped by with a bedside camera that he inserted into Isaac’s nose so he could visualize his throat and vocal cords. He found swelling, redness, and irritation which suggested that Isaac was suffering with GERD. I had been trying to treat this with reflux medications in the weeks prior to being admitted to the hospital but I was having a very hard time getting him to take the medication without choking and aspirating and vomiting. One benefit to now having the feeding tube is that it can also be used to give him medications without worrying about Isaac struggling with them.

On Thursday, Isaac was taken to the operating room and once again, I had to leave my baby in the hands of surgeons. They let me hold him as they put him under. He stiffened and twitched a little and then his eyes rolled back and he was out. Waiting has always been the hardest part. Finally, the pulmonologist came out to discuss his findings with us. Isaac didn’t have any anatomical defects but he did have copious bubbly secretions coating his trachea and lungs. The pulmonologist explained this could be due to A) Cystic Fibrosis (which he doubted because at this age, he had never seen it present in such a way. Regardless, he recommended a sweat test to rule it out, especially since I am a carrier), B) Infection (which he also doubted because Isaac hasn’t had any other signs of an infection and it has been going on for so long), or C) Aspiration. He was leaning towards C, which confirmed my concerns I’ve been trying to convey for so long.

The following day, a swallow study was ordered. This showed some delay with swallowing and penetration (putting him at increased risk for aspiration) but again showed no actual aspiration. Not surprising to me because for that whole 3 minutes, he didn’t have any choking. The problem with these kinds of tests are that they only give you a brief glance at that moment in time. And because his choking wasn’t occurring 100% of the time, it makes sense they didn’t find anything with that test.

We had the sweat test to check for cystic fibrosis completed while we were still inpatient. (Our first was also tested for this, due to the amount of mucus he was passing in his diapers.) We had to place little sweat collector discs on both of his legs, crank the heat in his room, and bundle him for 30 minutes.

The sweat was collected into the discs that contained a blue dye so we could visualize the amount. Isaac’s results were normal.

Moving forward from there, the doctors wanted to try and see how he tolerated thickened milk from a bottle. I had two options, neither of which I wanted: thicken my breast milk with rice cereal, or switch to formula which could be thickened with powder. At this point I felt like I had to choose between his lungs and his gut. I decided that breast milk thickened with rice cereal would be less of a shock to his system than switching completely to formula. We started with one ounce thickened with one teaspoon and then the rest through his tube. This seemed to make his reflux worse so the following day we tried one ounce to two teaspoons. Most of the time, he tolerated this without choking but as we began to increase the amount, he began to struggle again.

The GI doctor who was on that weekend was not very willing to listen to me or offer a plan of action other than just persevering with the thickened feeds. Monday, the GI doctor on is actually the one we’ve been working with for Joseph. We’ve known her for years and she was familiar with our family too. The rappor was already there; I knew she would listen to me and I trusted her judgement. She was willing to view the videos I had taken of Isaac’s choking and breathing. She wanted to order one more test and if it came back normal, would discuss sending us home with the feeding tube. The test was an esophagram to look more specifically for a fistual connecting his trachea and esophagus. This test was negative, so we were finally about to discuss being discharged and sent home. The only explanation they could come up with for Isaac’s feeding difficulties was an immature feeding reflex and GERD that he would hopefully outgrow. In the meantime, we would have the tube to help feed him so he wouldn’t be at high risk for developing respiratory distress secondary to aspiration again. I have to say I was frustrated and relieved at the same time. This is not something I ever wanted for my child and at the same time, I wasn’t so scared to feed him anymore because I had the tube as an alternative. The plan we came up with was to try each feed by mouth first and if there was any struggle, stop and finish with the tube. This way, he would continue to have opportunities to eat by mouth and not become completely dependent on the tube and forget how to eat (a very real concern for tube-fed babies).

Tuesday came and we were finally able to go home! I discussed with our GI doctor my thoughts on discontinuing to thicken his feeds and resuming breastfeeding; the thickened milk didn’t seem to be making enough of a difference for me to want to continue with it. The way I see things, if he’s going to choke regardless, I’d rather he choke on just breast milk than milk with rice cereal in it. That would be the lesser of two evils from the standpoint of his lungs. I had read once that if you are going to choke on anything, breast milk is what you want because of its antibacterial properties. I was given the OK to try out different feeding techniques and see what actually makes a difference and what works for him.

Discharge from the hospital was a nightmare! There was a breakdown in the communication between the hospital, the infusion supply company, and the home nursing company. Eventually everything was resolved but I was pulling my hair out for a little while there! We were rushed out thinking we had to be home to meet the home nurse by noon. The infusion supplies were supposed to be sent to the hospital so we could bring them home with us but nothing had arrived by the time we left. And on the way home, I got a call from the home nurse asking if I wanted to set up a time to meet her…I wasn’t confident in changing the NG tube (I’ve seen it done and in nursing school I’d practiced on mannequins but I’ve never actually placed one on a person, let alone my baby) and no one went over the expectations for how often to change it. Despite the confusion, we were just so glad to be going home!

Seeking a diagnosis (part 1)

Isaac is three months old! These last three months could not have been more different than what I imagined. For the first few weeks, I was amazed at how easily he transitioned into life. He was a great nurser and was gaining incredible weight! I felt relief that perhaps my third time really was a charm. I can’t pinpoint the moment where he started to struggle; it came on so gradually. I do know that by his two month check-up on December 16th, my mommy antenna were tickling – I was becoming concerned with how he was nursing and with the way his breathing and lungs sounded. He had a very uncoordinated suck-swallow-breathe pattern when he breastfed and had developed a mild chronic wheeze. The nurse practitioner ordered a chest X-ray and swallow study. Both came back normal.

Two days before Christmas, his wheeze became noticeably worse. Christmas Eve, I brought him to his pediatrician and he was having retractions, deep wheezing, and breathing too fast. His pediatrician called the pediatric pulmonary specialist at Maine Medical Center and we were awfully close to being admitted to the children’s hospital. Despite his labored breathing, he was maintaining a good oxygen saturation level, so we were sent home to keep an eye on him and follow up in a couple days. The day after Christmas, his lungs sounded slightly better.

On December 29th, we saw a pediatric pulminologist who suspected an airway defect could be causing his symptoms. He listed the three most common ones he was concerned about: laryngomalacia/tracheomalacia, a tracheal cleft, or a tracheoesophageal fistula. He wanted to refer us to the pediatric ENT and schedule an outpatient bronchoscopy to look at his airway and into his lungs. I went home to wait for the calls.

Meanwhile, I was researching about tongue and lip ties. The lactation consultant I saw after his swallow study diagnosed him with a posterior tongue tie and I suspected he also had a significant upper lip tie. It was looking like our only option for laser revision was to travel out of state and pay over $700 (the same situation we encountered when we sought to have our first two children revised in 2012). With the help of an amazing IBCLC at Maine Medical Center via Facebook, I finally found a pediatric dentist in Maine who could perform laser revisions and he was able to squeeze us in on New Year’s Eve. This time, I was able to stay with Isaac for the whole procedure. I knew I would be required to stretch the revised areas to preven reattachment for the next two weeks so I tried to prepare my heart again. I’ve become very practiced at detachment over the last few years and despite my ability to do what I have to do, it’s still another sword in my heart each and every time. I wrote about my experience with stretching my older two children here.

Within a day, I did notice some improvement in Isaac’s latch. He was able to hold onto my nipple better and wasn’t slipping off and swallowing air as much as he was before revision. Unfortunately he continued to choke and aspirate. I began trying to capture it on video to better show the doctors what was happening. Here is once instance: https://www.youtube.com/watch?v=v5D7yEP0rYA
I would say this was happening about 90% of the time he nursed. I had become so scared to feed him and I dreaded every time he became hungry. I tried a bottle in the hopes that he wouldn’t struggle as much but it made no difference. It’s hard to explain the psychological impact the fear of feeding your own child has on you. I felt like my body was hurting him every time I watched him struggle to clear his lungs.

The first week of January, his breathing worsened again. I brought him to his pediatrician again on January 7th and he sent us home to try an oral steroid in the hopes of opening his airway. The following day, this is what his breathing sounded and looked like: https://www.youtube.com/watch?v=lmm4ppCxAzg

I brought him back to his pediatrician on January 9th and his breathing had only worsened. His doctor sent us home again, this time with an inhaled steroid in addition to his oral one. He only continued to get worse. The following morning, this is how hard he was working to breathe: https://www.youtube.com/watch?v=QhT_6IT7HcU

Sunday morning during church, he was really struggling to breathe, switching from grunting to hyperventilating. It was all I could do not to rush out of the service and bring him straight to the ER. One way or another, he was being seen in the hospital today, even if it meant driving him myself all the way to Maine Medical Center. I made the decision to see about getting him admitted with the help of his pediatrician, who could pull more strings than I could. I paged his doctor (who had told us he was on-call all weekend) and he wasn’t surprised to hear from us in the least. He told us to bring him to the local ER and he’d meet us there. Thank God my midwife apprentice Becca (from Isaac’s birth) was staying with me that weekend to help with the boys. She was able to come with me to the ER and help with the older two.

Isaac was assessed, given a breathing treatment, and a portable chest X-ray. While he was awake, his oxygen level was staying in the upper 90s. He wanted to eat and I tried nursing him but he choked repeatedly and we gave up. He finally fell asleep and his oxygen level dropped dramatically. The doctors rushed in and put him in oxygen.

Even with the oxygen, he was dropping into the 80s every time he fell asleep.

We were also told that his chest X-ray showed infiltrate and these together seemed to seal the decision to admit him to the children’s hospital at Maine Med. His pediatrician arranged for an ambulance transfer and direct admission so we could bypass the ER at MMC. I was able to accompany him in the ambulance and Becca followed in my van with the older boys.