Luke's Story – 3 ½ to 7 months old – First Summer

Luke's first months home were busy and full of adjustments. Luke came home on May 20^th and we had a busy summer ahead of us. We loved being able to be in the same place as Luke all the time. We did have to get used to being confined to one area of the house with Luke because of all the machines he was attached to. At some point we got ourselves together and had a regular set up with his vent and suction in the living room and just moved the pulse ox and apnea monitor when we moved him. Still this only afforded us really two places to be with Luke. We did get him loaded up onto his Kid-kart (a stroller with a lot of carrying capacity for his vent, suction, vent battery and monitors) and took him outside a few times for a walk around the yard. He fell asleep the first time out but the next time he was awake and right away liked to touch trees and look at everything. We live in a swamp (a forested wetland) and there is lots of nature to see. Luke still loves to touch leaves, needles and bark and constantly signs for more when we are outside.

Between Luke's appointments for casting to correct his clubbed feet every week and seeing our other 9 specialists we were in Grand Rapids (GR) at least once a week and two months after being home we were there three times in seven days with a night of no nursing in the middle. It was a pretty crazy summer. Grand Rapids for us is 3.5 to 4 hours away depending on stops to change diapers and other things. Luke did great and was a pretty mellow go with the flow baby which was awesome! He did get fussy sometimes which worried me but then my mom reminded me that he is a baby and babies fuss.

We saw the pulmonologist for this first time about a month after coming home. I was pretty nervous because I had been having a hard time effectively communicating with her in the NICU and I was pretty set on starting to wean Luke off the vent as I thought he was doing wonderfully. The pulmonologist said they like to wait for two months of being home and stable before weaning but allowed Luke's PEEP to go from 6 to 5 on that first visit. We communicated wonderfully and I was feeling good about our future relationship with this pulmonologist.

In June Luke also saw the Neruodevelopment team which consisted of a physical therapist (PT), Occupational Therapist (OT), speech therapist, nurse, social worker, and a doctor. It was a long appointment but they gave us some good ideas about how to help Luke get strong enough to hold his head up on his own. (Luke was 4 ½ months at this point). We also were getting the process started to get into the Early On program with the school system and get a PT and OT to come into our house and do therapy with Luke. We were working off of the PT and OT suggestions from the NICU and were excited about the possibility of help on a regular basis. We ended up with an OT, who did some PT as well, coming about once a week. We had PT 1-2 times per month and speech therapy and vision therapy each once a month. I liked all the therapy because it helped Luke get used to other people, gave me new ideas for therapy and kept me more accountable to work with Luke.

At the end of June Luke had a GI bug and a possibility of some seizures that the nurses had been seeing. We had and still do have nursing 12 hours every night. Neruodevelopment scheduled an EEG for one of the next times when we were down in GR. He didn't have any more seizure activity before the EEG and the EEG came out normal. You don't always see seizures on the studies but the doctors still decided to wait and see if he had more before treating with medicine. The doctors were reluctant to use seizure medicine because it can be a long term medicine once a child is put on it. I was okay with this as I am not a medicine person and Luke had so much other medical intervention I hesitate to add more.

Luke is very “talkative” as he has learned to make noise over then vent. He really has only one or two tones but we love to hear it. It is very cute. It is also a way to judge how he feels because when he gets sick and doesn't feel as well he doesn't make as much noise. Since he doesn't have facial expression this was a good indicator for us when he was little. Since being taken off the vent during the day he doesn't make noise. With the vent he had something to push against to make the noise and with just the trach that isn't there. We miss the noise but not the vent.

Luke LOVES to look at his hands. He is amazed by them and he does all sorts of things with his fingers. He pinches his thumb and first finger together and is just really cute about it. He likes to play with and bat around his cloth blocks and other toys in his crib as well as his mobile.

At the beginning of July Luke had his first blue episode at home. I woke up when the nurse called me down. Luke had turned blue and she has used the ambu bag to bring him back. By the time I got there he was very pasty and pale but awake and alert. He fell asleep shortly afterwards for about 15 minutes and then woke up ready to go like nothing had happened. I called the pulmonologist to let them know and they wanted us to go the ER to have him checked out. They did x-rays and blood work and found nothing. I think Luke just got some water down his tubes. In the hospital he had a lot of episodes where he turned blue and his stats dropped but we got him back fast and easily. We couldn't conclusively prove it but were pretty sure there was too much water from the humidifier in his vent tubing that would build up and flow down into his lungs sometimes. In the hospital we had notes on his crib to keep his vent tubes flat with no places to collect water to try to prevent this. We also turned the temperature down on his humidifier so the difference between the air and tubes would be less and thus less condensation would happen.

Also, during this same time a nurse saw another seizure which we were going to talk to the neurologist about when we saw him a few days later. And Luke had a head cold as we were pulling yellow/green stuff out of his nose. Thankfully this stayed out of his lungs.

When we saw the Neurologist they wanted us to get a 24 EEG and a MRI to try to catch a seizure and see what was really going on. Getting an MRI would mean Luke would need to be sedated and a different trach would have to be put in because his current trach has metal in it. We would do the MRI and EEG in the same trip and spend a couple of days in the PICU at DeVoss Children's Hospital. We needed to be in the PICU (Pediatric ICU) because Luke is on a vent and thus considered fragile. These were scheduled for September.

By the middle of July we were in the normal swing of things again and got his third tooth! Luke is now able to sit up (with help) and hold his own head up. We are still working on the head control when he is on his tummy though. His hand control gets better and better all the time and he is really into shaking toys right now. He figured out that he can make his mobile move by shaking the rings we have dangling from a line across his crib and through the mobile. All this shaking and noise makes it easier to tell what he is doing when you are not right in the room with him. He has fallen asleep with his arm in the rings and was even moving them in his sleep.

A bad thing that happened was that we lost our 3 days a week nurse. This was a large portion of our nursing and took us totally off guard. It happened right before she had 3 out of 4 days on. There were a lot of not so nice phone calls and some lost sleep but a nurse already with our nursing company stepped up to fill in, temporarily at first but then she fell in love with Luke and decided to stay and is still with us :)

At the end of July Luke was finally done with his every week castings and his Achilles tendons were clipped and casts were put on for a final three weeks of casts. During his castings Luke had started with plain plaster casts, which is normal for castings to correct clubbed feet. However, Luke spent his days banging his casts together and broke through them so had to get them reinforced with fiberglass. The fun thing about this was that he got to get a different color cast every time. The tendon clipping was met with lots of crying and as much soothing by me as I could do and still have them be able to do the procedure. After all the fuss he was asleep before they were done casting. After three weeks the casts were cut off for the final time and Luke was free. Well almost free, he now had sandals attached with a bar that turned his feet out. He will wear the sandals and bar 23 hours a day with only an hour break for at least three months. The first day with theses on was very trying and I have never had Luke cry so much. It was very hard for me to go through but fortunately I had my mom to help me out that day and she helped a LOT.

The casts came off just in time for his baptism which was his first trip to church. We had Luke on a look but don't touch plan at church, and he still is. Yeah maybe I am a little crazy but there are a lot of people handshaking, eating, coughing, ect... at church and then exchanging it with everyone else. Luke was serenaded with a baptism song by my mom's drum group and he was baptized by my dad and our pastor.

Luke's July visit to the pulmonologist went really well. I was prepared to have to ask to have him start weaning and the doctor came in with a plan in place to start weaning Luke the next day! We were going to start by lowering his back up breath rate by two every two weeks. Also the nutritionist, who I thought should have increased Luke's food at the last visit came in with an increase of food at this visit. So good all the way around! Through all this I was pumping breastmilk for Luke. So some days all I felt like I dealt with was food, either pumping it or feeding Luke.

Luke's first visit to the ophthalmologist gained him a pair of glasses at just 6 months old. His Moebius Syndrome lends him to have crossed eyes which is compounded by finding out he is far-sighted and far-sightedness lends itself to having crossed eyes as well. The far-sightedness is not from Moebius Syndrome but is genetic and from my mother, who had glasses at 11 months. Luke got the cutest little white framed glasses. Thankfully they were made out of a silicon with polycarbonate lenses so basically baby proof. And he looks so cute in them. He doesn't pull them off his face and in time he started putting them back on his face correctly when they accidentally came off. However, when upset he will grab at them and pull them off, but he usually tries to put them back on soon afterwards.

Our first summer with Luke was quite eventful and at the end Luke was down to 10 on his breath rate, had new glasses, done with casting and onto the Ponsetti brace (bar and sandals), holding his head up, and just being an all around cute baby.

So I just remembered some more things about that time for Luke.  First, he started signing!!  I think his first sign was "milk" and he did "diaper" and "suction" pretty soon thereafter.  We started teaching Luke sign since he can't talk and between the trach and Moebius Syndrome facial paresis we were pretty sure it would be awhile.  Currently Luke is very talkative with his sign and he babbles and makes up his own signs.

Also, after Luke was done with all his surgeries they found he had high blood pressure.  The Nephrologist's working theory was that the high blood pressure was due to some acute damage to the kidneys from his umbilical catheter that was places at birth and in for a few days.  He was put on high blood pressure medication and his blood pressures were monitored at home by nurses and every time we could get to their office when we were in GR we got a blood pressure.

Luke's story - g-tube to going home

I get nervous and concerned about things that really aren't that big of a deal compared to other stuff going on at the time. And for me the things that I was most concerned about for his g-tube surgery was that they would put an actual tube in and not the button like I had discussed with the doctor. I didn't think I would see the surgeon before the surgery and I considered putting a note on Luke to put the button in. I did not end up putting the note on him but made sure that it was specified when I signed the release for surgery. Kevin was not with me before the surgery, or he would have probably put a stop to my weird worries way before I did myself. He arrived just before Luke got out of surgery which was nice to be there together to see the little guy. During the surgery a fellow NICU family who I had gotten to know a little and I knew their brother from college let me be part of their little lunch and friend gathering while I waited. I was very thankful for this as they are a great family and have some fun friends.

So Luke came out of surgery looking very out of it and not so great and was very wiggly which seemed to me like he was uncomfortable and in pain, which any mother hates to see. Although, in the pictures we have it almost looks like he is smiling (although he can't really smile with his facial paresis). He was very uncomfortable and with me not wanting Versed for sedation after the bad blue episodes that happened after his trach surgery he was only on pain meds. We ended up having to cover his incubator, which we never do and put him in a “cave” to help him settle down and rest. Kevin and the nurses pried me away saying he would be resting for awhile and Kevin and I went to dinner.

They say a little issue with his large interesting while they were doing the surgery which they are watching. They are thinking maybe the antibiotics for the infection are messing with his gut flora and causing a little issue. This turned out to be nothing and I didn't even remember it until I had went back and read my notes.

Also, Luke was not not peeing after the surgery and so they may have to give him something to help him get rid of the fluid.

Two days after surgery the doctors said he was ready to try CPAP again and were allowing him an hour at least once a day but it could have been more. Well he had a bad breathing episode on his hour on CPAP. Just when we had visitors and Luke was in my arms he started turning blue. Ahhhh! We got him back in bed and back to normal oxygen levels and soon after he was his wiggly self and seemed normal which was good but still a little disconcerning that he would have a random episode.

Three days after surgery Luke was up to full feedings of breastmilk which seems to be going through the g-button and through his system well and all is good there. Yeah!

However, at this point Luke's time on CPAP was not going well and I was getting discouraged and praying that he would figure the breathing thing out well enough to get off the ventilator.

About a week after Luke's g-tube surgery was started really talking about going home and getting things lined up for Luke in terms of nursing, medical supplies ordered and all sorts of stuff. I was also be encouraged to take a trip back home (3.5 hours away). I was very uneasy about leaving Luke for 48 hours or any more than over night and was not handling it well. I knew I did need to get home and start working on getting things ready for Luke to come home but to leave him was pretty unthinkable.

Luke has been recovering well from his two surgeries and infection that all happened in less than two weeks. The big concentration was to get Luke weaned down to the least amount of breathing help possible. Things were not going great. His trial times on CPAP were going well some times and not so great other times. I don't remember excatly but I think we started with 1 hr on CPAP a 2-3 times a day, evenly spaced and then 2 or 3 hours on CPAP twice a day was next then 4 hours. We wanted to go home without the vent as things were a lot easier without the vent but things were not looking that great for that to happen.

About 10 days after surgery Luke was not gaining enough weight and so a dietician came and wanted to fortify my milk so Luke would be getting more calories. They would basically put some high calorie formula in with my breastmilk. And they said if after a few days this wasn't enough to help him gain weight then they would add more. I was really not liking this but I didn't know what else to do because I saw the numbers and he was not gaining weight, so I agreed. Luke started gaining weight well after he was put on this fortifier and 14 days later he was taken off. And you will read later, it was actually that it was taking him so much energy to breathe that he was not gaining weight. Once he vent settings were changed he started gaining tons of weight and was able to be taken off the formula. There is more about this in Luke's g-tube and feeding history so that is all I will say about this here.

Luke is on CPAP for 3 hours twice a day about 2 weeks after his g-tube surgery (March 18^th) and he moved to 4 hours on CPAP twice a day on March 19^th and on March 21^st he is moved to 6 hours on the CPAP twice a day (that's half the day!!!!). They were closely monitoring his CO2 levels because they seem to be his biggest problem. Luke is not on oxygen and keeps his oxygen levels up very nicely. However, he breaths fast and shallow and does not blow off the CO2 that he need to . We are thinking this is due to the low muscle tone which is caused by his having Moebius Syndrome. His CO2 levels were staying in acceptable levels during this time, they were stellar but they were okay especially for weaning. He seemed to be working a little harder to breath during when he was on CPAP but it didn't seem to phase him in his actions. Our prayers were, and still are, for him to take deeper and slower breaths.

There is still no real improvement on his secretions and we are not sure if he is swallowing that much, we know he does a little but we keep hoping for more. More swallowing would mean less secretions and suctioning for Luke. We are still suctioning him from his trach as well. We hope he will be able to manage his lung secretions better as his lungs get stronger. However, the vent itself creates secretions by blowing air into his airways and irritating the airways a bit.

Luke is a lot more active at this point and playing with some cloth blocks, a mirror and some other toys we have in his crib. It is nice to see him more active and without all the tubes in his face I think it really helps.

On March 23^rd Luke moved to CPAP all the time. He is on a PEEP of 8 and needs to get down to a PEEP of 5 before he can be taken of CPAP. He is still not gaining weight as much as we would like and this is still concerning so a couple of days later he is put back on the ventilator at night. The doctors are thinking he is using too much energy to breathe on CPAP and so putting him on the ventilator at night will help him to retain more calories and thus gain weight. The pulmonologist instigated this and were going to come again to see if they could figure out why Luke is breathing so fast (but as I mentioned before the only thing they come up with is his low tone).

During this time Luke moved to a new, and hopefully quieter, nursery. The last nursery he was in had a lot of loud ventilating units and since Luke has a big boy crib you can't just shut the lid of the incubator and drown out the noise like the other babies. The new room seems quieter and the noisiest thing is a full term baby who actually cries. However, during the next month the nosier ventilator units follow us and the room gets nosier again. Thankfully Luke is is a corner bed though. This was a big step because it did mean leaving the nurses we knew as nurses here usually work in one or two nurseries and we moved to a nursery not connected to the one we were in.

On March 25^th Luke was moved to new vent settings (I wish I had written them down) and I saw an immediate change in his breathing. He was breathing slower for longer periods of time and slower than I had maybe ever seen him breathe. The pulmonologist said we still had a ways to go before he was on vent settings he could go home on but as he gets bigger his lungs will get stronger and the vent settings can be turned down. As Luke started gaining weight when put back on the vent it is a good sign that he was just using too much energy to breathe and that things are going better for him with the new settings. We don't like to see settings go up but I do like to see my baby doing better.

During this time Kevin, my parents and I are being trained on how to take care of Luke and his trach. We practiced changing a trach on a doll (that we all suggested had the wrong sized trach for the size of its opening) and Kevin as the calmest one was the one who got to change Luke's trach first. I was next up and was glad to have it over and have one under my belt. It is scary but 2 years later and many many trach changes later it is not scary but just routine. I must say that are trainer was not stellar and actually gave us the wrong trach to put in Luke. We learned our lesson and always check now. Learn from the nurses you have, I think they were the greatest teachers for me. They were more than willing to show me how to do things and let me jump in where I felt comfortable and talked me through new things very well. The nurses do this all the time and the trainer we had just trains to the nurses know the tricks and tips for all the care.

Luke started received Albuterol which is a common medicine given to vent kids to help keep things good in his airways. I forget exactly what they do right now but I think this one helps to keep his airways open and keep the secretions down a bit. Well Albuterol did not sit well with Luke. He got all red and extremely agitated. I knew something wasn't right and so called the resident. Unfortunately the resident on call was new and didn't know Luke very well and was being busy with other things going on in the NICU so things were not getting done fast. However, my nurse was great and kept calling her to at least get some orders to do blood work. Finally she got the orders and nothing looked amiss. Kevin arrived that weekend and figured out that it was the Albuterol. So they moved him to Atrovent, which he still uses today.

March 25^th the pulmonologist seemed to think he probably had a long way to go before getting to vent settings that he could go home on. However, on March 29^th Luke was on vent settings that he could go home on. Yeah! We were still praying that God will heal his lungs miraculously and Luke would not need to vent to go home. However, not that Luke was on stable vent settings we could start the going home process with the ventilator. They were still activlty weaning Luke but at some point they would stop so we could make sure all was good with his settings before he went home. Luke needed to be stable for 2 weeks or thereabouts on the same vent settings and then he could move onto the vent he would use at home. He would then need to be stable for 2 weeks on the home vent to be cleared to go home. And while it looked good on this front there were still a lot of obstacles to overcome to go home. We needed to find nursing care that could take care of Luke while we slept, need to be trained on Luke's vents, get all our medical supplies ordered and to the house, as well as putting in new electrical circuits so that all Luke's equipment would not blow a fuse or something. On a vent and trach Luke would need 24 supervision. We were told we were getting 12 hours per day and advised to take it at night. I agreed with that recommendation as I wanted to be awake when Luke was awake and enjoy my baby. However, I was warned that this was the hardest step and for us it was.

Also by the end of March Luke was gaining enough weight to be able to come off the formula supplement. Another yeah!

So April seemed to be about getting Luke on the lowest but stable vent settings and there were many changes. April 1^st he moved from a PIP (the pressure he gets when he takes a breath) of 20 down to 17. He was put on 20 previously because his CO2 had be raising from 39-40 to 46. The goal is to keep his CO2 levels between 35 and 45. During the night his CO2 was in the 20s and his pH was high so they put him on 17. He seemed to be breathing at the same rate on both so it didin't seem to phase him to move to less help.

Luke was put on PIP of 16 from 17 early the next morning because he his blood gas had a high pH and low CO2. At 9 am blood gas had a higher pH still but in the normal of the CO2 (35). The 3am gas April 3^rd was normal for both pH and CO2 (43) and is still holding strong. We were thinking that theses were probably be the vent settings he would go home on.

On April 6^th they moved Luke to lower vent settings, the lowest they would go before CPAP. I think it was something like a PIP of 16, a PEEP of 6 and a backup rate of around 20. By April 10^th Luke was moved to a vent settings where he was doing even more of the work although I am not sure what this was but he was doing okay. He had been losing some weight and so we asked for a food increase and moved him up to 85 ml (around 3 oz) of breastmilk every 3 hours. The next day Luke was put on higher vent settings because he was working so hard and he was going to stay on those for 24 hours or so and then be put back on the vent settings we were going to plan to go home with. Which were a backup rate of 20 with pressure control for the backup rate breaths at 16 (the PIP, pressure control10 plus a PEEP of 6 for 16 total) and a pressure support for his other breaths at 17 (pressure support 11 plus the PEEP of 6) and a PEEP of 6. The backup rate breaths also control his insipitratory time at 0.4. I know this is more settings than I usually mention but I thought since I knew these all from the orders I would write them out. Oh and his home vent is an LTV 1150. And at this point, no oxygen.

During all this Luke is still trying to be a little baby. We worked on tummy time and are working to get him moving his head side to side while he is on his tummy. He is getting there but sometimes gets stuck in the middle. He is also trying to roll over. He gets up on his side and really looks like he is trying but just can't figure it out. He plays with some cloth blocks and other baby ring type toys and loves to look at himself in the mirror. He will even bring the mirror up really close to his face. He is able to reach for and grab toys and the therapist were pleased that he kept making progress. And towards the end of April he started batting at his mobile. The physical therapist even gave us a list of activities to do on our own and at home. This was great as I love concrete lists. We finally brought his swing to the NICU and he LOVES it. He gets mad when you take him out to feed him or diaper him.

We are still working on setting up home nursing which is really slow. At the NICU there are discharge nurses which will set up your home nursing, getting supplies and your initial doctor appointments. However, maybe its just my control freak or maybe because things were just going too slow and I really wanted to go home but I took over calling the nursing companies myself. After that I realized that even if it was going faster it made sense to talk to these companies and people myself since I was the one who had to deal with them for the foreseeable future and, at least for me, I don't do well with middle men. So I started making calls and trying to get things going in a good direction which finally happened after talking to a number of companies. I would like to write a separate blog about how to go home from the NICU so look for that in the future.

Then we had a vent mixup which taught me very clearly to go with my instincts. I had been home for a few days and when Kevin and I got back to the NICU Luke had a old style ventilator. We were told that they vents were in short supply and the vent Luke was on was one that did a lot of complex things and since Luke was using simple settings he would be fine with an older style and the other vent went to a different baby. I didn't like it one bit and freaked out. Kevin worked on calming me down. That weekend I did notice that Luke seemed to be working harder to breathe and it was just feeding my displeasure. Well when talking to a respitory therapist that I trusted and really liked (they are not all created equal so get to know the good ones) about Luke's vent settings, old and new (I wanted more info even if this didn't happen), we discovered that the new vent Luke was on was not giving him the same support but giving him much less. This vent was giving him pressure support (PIP) only with the 20 breaths of the backup rate. When he breathes over the backup rate which Luke does it just matches the 20 breaths up with 20 of Luke's own. However, the vent settings Luke was stable on were giving him support with EVERY breath. This may not be a big leap for someone breathing at a normal rate, under 40 breaths per minute (bpm), but Luke breathed at that time from 70-100 bpm. So there was a lot less support. I was very worried about leaving him for any length of time again and had a new heightened awareness to know all the details about Luke, more than I already did. I was also scared that this could set us back, but fortunately it did not. So since they were out of ventilators and Luke was planning on going home they brought up one of the hospital’s home vents for him to be on. I thought this was a good plan since it would help to establish that Luke is stable on a home vent.

During April Luke started to switch his days and nights a bit and seemed to be up almost all night and sleep for much of the morning. I wasn't a fan and hoped that he would figure things out but figured if not in the NICU we could at home where night was quieter and less eventful.

And then Luke started to have these weird desaturations and some turning pale and blue. We tried suctioning and changing his trach and usually had to end up bagging him and giving him some oxygen to get him back to normal oxygen saturations. We were really racking our brains to think of what it could be as we couldn’t figure out a trigger. One nurse thought it could be the new vent and the way it was ventilating Luke but thought to wait a few more days and see but it didn't really make sense to me. However, I started to notice a pattern that it usually happened when Luke was being moved. What we figured out (with doctors not really wanted to say for sure) was that the humidifier that is attached to Luke's vent to keep his airways hot and moist, something our noses would so but since Luke's air is going directly into his lungs he needs help with that, was producing too much water, or rainout, and it was sitting in his vent tubes. When Luke was moved the water was sloshing into his lungs and basically he was aspirating. Ahhhh, scary. And with all that water in there it is harder to move air through the tubes and thus harder for him to breathe and would explain the oxygen levels not being as good. So we put notes on Luke's crib to always keep his vent tubes flat, with not valleys for water to collect. This helped a lot. However, he did have an episode at home that I think was because of too much water in his tubes as well. But he hasn't had one of these episodes in over a year. We are very vigilant about emptying the vent tubes of water and we purposely leave a loop at the end farthest from Luke to collect the water so we can drain it without getting near Luke's lungs.

Luke broke his first tooth in April, yes that is right he got a tooth at 2 ½ months old. So maybe some of his fussiness could be attributed to that.

I had my first vent discharge meeting in the middle of April. This is basically a meeting with my doctors and coordinators at the NICU and the nursing company, medical supply company, and respiratory therapist (RT) back home. I got frustrated because the RT/suppy company wanted me to come home to do vent training but seemed like it would be a day her and a day there. I don't like to travel home and leave my baby and no one seemed to understand that it wasn't just a 30 minute drive and that I would have to leave my baby for days each time and I didn't even have a car with me and so would need to coordinate that. The social worker even asked if I didn't trust the nurses in the NICU and I was like no I just don't want to leave my baby. What mother wants to leave their 2 month old baby for days at a time. Hello people! Well we did get it arranged and ended up doing the vent training in one chunk I think over two days.



Luke was put on a multivitamin because his Hemoglobin was on the low end and they didn't want him to become anemic. Not my favorite option as normal breast fed babies don't get multivitamins but I decided to choose my battles and leave this one alone.

At the end of April we finally got nursing set up. We had 6, 12 hour days covered and they company said that they would take turns covering the 7^th day until someone was found. So our go home date was set for May 13^th!!!!!!

After being gone for a few days for vent training I came back to Luke moving and doing even more with his hands and legs. He was even starting to put his thumb in his mouth and lifted his head just a bit for me during tummy time. It was a great day back!

Things were on track to leave on Wednesday, May 13^th (they like to discharge you in the middle of the week so they give you a few days until the weekend in-case something happens) and then 15 minutes before the final discharge meeting the Friday before I got a call from the nursing company to tell me their 3 day a week nurse had dropped out and taken another job. I was stunned and numb and I went back to the nursery where my parents were and cried. I managed to pull myself together for the discharge meeting but things were not looking good and I was desperate to find another nurse and go home. In talking with the nursing company early the next week they had someone set up to interview in the middle of the week and at that point they could get me 4 days a week with who they had. I knew it would be hard to work with only 4 days. I figured that if the 3 days were on the weekends and one weekday then we could handle it. It would mean sleeping when Kevin was home in the afternoons, evenings and on the weekends and having my parents help me out one day a week. But even with that schedule I would most likely still be seeing Kevin more that I was not and on a regular basis and we would be home!!!! So my campaign started to convince the doctors to discharge me. Luke had 4 trained caregivers, which is unheard of, and all my nurses could testify that I was fully capable of Luke's care and so were Kevin and my parents. We were there a lot and could handle it between the 4 of us. This ended up dividing the neonatologist but on Friday, May 15^th the head neonatologist (who was on my side) came in the to nursery and grilled me on who was going to help and how much nursing I did have and my comfort level and then told me they had okayed me to be discharged. I was estatic!!! I then went to call Kevin and my parents and tell them the good news. We were going home the next Wednesday, May 20^th!!!! And God blessed us by providing full 7 day a week nursing later that morning. I was on cloud nine! But then so many things had to actually happen and Luke had to not have any weirdness in the next few days.

Luke has clubbed feet and a pediatric orthopedic doctor had been coming to see Luke and was going to use the Ponsetti method (which my mom had of course researched and found to be the best) to correct his clubbed feet. This method involved a series of castings that would hold his feet a little more turned out with new casts every week for around 6 weeks and then if needed the Achilles tendons would be clipped and Luke would be in casts for three weeks strait and then he would get shoes and a bar to wear starting with 23 hours a day and moving to 12 hours a day till he was around three. They started casting in the NICU just before Luke was scheduled to go home. They don't do it while in the NICU usually because the heels are used to draw blood gases from and so need to be exposed. However, with our false go home Luke got a week of casts and then a week with no casts and then the casts were put on again right before we went home. (His feet look really good now.)

Things went well and we went home on May 20^th, 2009. It is an anniversary I still remember and have marked on my calendar. I think the whole day was surreal to me. I was pretty tense and nervous and was a little snippy, sorry Kevin. We probably looked like stooges trying to get Luke's things on his KidKart, (I would recommend a KidKart to anyone with vents and trachs and special needs. We love ours, it fit in our sedans, it puts together easily and is very adjustable, and it holds a lot of things that normal strollers can not handle.) getting Luke in the car (it took us two attempts) and getting him in the house. I think of it now and I just want to laugh and say what were you thinking. But it is kind of an experience thing when you figure out where things go best in the car and on the kart and how to move from car to building. Also, being so nervous about always having Luke hooked up at the beginning we were always trying to move with all the monitors connected so it was a juggling act to move two monitors, a vent and a baby in casts all in one movement. But we figured it out and it is very streamlined now, and he doesn't have so many monitors. More on this in another blog I want to write about going home and traveling.

So all of that in just 3 ½ months of Luke's life. Whew. It does settle down a bit after this, thankfully.

Luke's (breathing) story - post trach part 1

So here is more of Luke's story. I know it may not be grammatically correct but mom feel free to let me know and I can change things. I just wanted to get it out there.

Luke had his trach put in on February 23, 2009 at about three weeks of age. The night and day after his surgery he would stop breathing and turn blue and have to be brought back with an ambu bag. This happened a lot in a short period of time the day after the surgery in the afternoon. I finally figured out, after talking it through with the nurses, that it was probably the Versed which they were giving him to keep him still so he wouldn't knock anything lose. They gave him a dose just before the many episodes happened the afternoon after the surgery. They halved the last dose they gave him that evening and things got better. Luke has on his record now that Versed is something he is allergic to because I don't want to see my baby blue again. I remember not liking to see Luke turn blue and ambu bagged back but I don't remember being really super upset about it. I look back and notice a lot of things now that didn't rile me like I would have expected but I think it was God knowing we had a long journey ahead and to take things in stride. This is unusual for me so God was working pretty well with me through this. Oh I cried a lot through it all and had my breakdown moments but they were usually after the fact back in my room when I had time to think about things more.

A good thing was that we were seeing a lot of Luke's face which was really nice. The only tube he had now on his face was the feeding tube, which he learned to pull out very well in the next couple of weeks before his g-tube surgery. Luke also learned how to pull off his vent tubes just a couple of hours after surgery and could manage to get them off right in front of my eyes while I thought I was holding his hand and keeping things under control. Luke does have a personality and he seemed to be saying that he did NOT like this trach vent thing and they needed to go.

They started feeding him breastmilk again the day after surgery and by the 2^nd day after surgery he was back to his pre-surgery level of feedings. Luke has always been a great digester, I won't say eater because he doesn't “eat” things by mouth. The 2^nd day after surgery went much better all the way around for Luke as he was more himself, had no blue episodes and was moving all limbs around. I did get to hold him for his afternoon feeding which was awesome since I wasn't allowed to hold and cuddle him much as they were afraid that his trach would fall out. And my holdings were only for feedings and very supervised. They were nervous about us holding him because the trach can come out and since the tissue has not healed to accommodate the trach things could get bad and more surgery could be needed. There were two strings that were attached, I never did grasp exactly how, to pull things open and stable in case the trach did come out. Luke did loose one of the strings before the week was up. At a week the ENT comes to do the first trach change and make sure everything is okay.

So the thought was that once the trach was put in that Luke would be able to breathe unassisted. It seems that usually trachs are put in because of some issues with the airways and since our ENT didn't think he had any issues with his airways we didn't know what to expect but were hoping for the best and to be vent and CPAP free soon after the surgery. The 3^rd day out of surgery Luke tried CPAP and couldn't handle it so was put back on low vent settings (I don't remember what they were).

He also did a little spitting up so they decreased his feeds a little bit. I don't remember this but read it in my notes. I knew we were looking at a g-tube when he recovered from the trach surgery and don't really remember any feeding issues before that.

Luke was breathing short shallow breaths and fast if I remember correctly which is not so good. Slower deep breaths are the preferable way to breathe. Five days out of surgery Luke was on CPAP all day and breathing a little fast but holding his own. His trach stoma site was a little redder than it had been and the nurses said they would point it out the the ENT in the morning when he came.

So about a week after the trach surgery when I got to the NICU in the morning Luke was back on the vent and on antibiotics for an infection. A culture was out to the lab to see what the infection was. This was very disappointing and I was hoping for a fast recovery and back to CPAP and hopefully lower. However, little did I know, Luke would not be coming off the vent before going home and now, at 2 years old he is still on the vent at night and naps.

The culture turned out to be staff and they were already treating with the correct antibiotics so that was good. The antibiotics kicked in and Luke's vent settings were turned down twice in one day!

Luke first trach change went well and the ENT through things were going fine. They kept the trach size at 4.0 since Luke was on the vent. The ENT said a smaller trach could have leakage and then the vent would alarm unnecessarily and not be delivering its air efficiently. At this point we started things in motion for getting trained on all the care needed for a trach baby. I was now back to holding Luke whenever I wanted, which was mainly during feedings which was great.

And a new issue, high blood pressure. Luke has had high blood pressure it seems like always. The nurses comment on it but the doctors don't seem to concerned. The new resident mentioned it to the doctor and they ordered a kidney ultrasound for the next day. From what I gather, kidneys not functioning correctly can cause high blood pressure and they may not be functioning correctly due to the UVC line that was in his belly button when he was first born because they could not get an IV. The ultrasound didn't reveal any abnormalities in the kidneys so his high blood pressure was still a little bit of a mystery although they were still thinking the UVC line might have caused some damage afflicting the blood pressure.

So this turned out to be a busy day with the ENT and first trach change, high blood pressure issues, and the eye doctor. The pediatric eye doctor said Luke's eyes still had scratches but looked good enough to take him off his antibiotic for his eyes. Yeah!

A little over a week after trach surgery and after recovering a bit from a staff infection Luke started 3 hour trials on CPAP. He did well for most of his first few but started going downhill towards the end of them. It is a step in the right direction though.

Luke went for an upper GI to proceed the putting in of a g-tube the next day. Which is good because he took his feeding tube out twice during our trip to get the GI done. The upper GI revealed some aspiration and so the docs decided to do a Nissen Fundoplication as well. The Nissen keeps food from going up from Luke's stomach into his mouth and then down his airways. There is a lot of controversy around getting these done. I had no idea of the controversy at the time but Luke's seems to have turned out well and so far we have had no problems with it. I mentioned Luke's grabby hands to the surgeon and since Luke was a good sized baby he said he could put a button in right away and not a tube that hangs out. This was great new for me as I foresaw a lot less problems. Luke was also going to get a muscle biopsy done to rule out muscular dystrophy.

Around this time I had some down times about not being able to hold and cuddle my baby as much and a little about Luke's future. I didn't and still don't like to suction him and back then he really didn't like it. He has learned to deal somewhat now. I would rather be the one than some nurse that didn't care as much as I did though. What I didn't like is that with all the tubes and stuff it wasn't easy just to scoop Luke up and cuddle him when he cries. I do enjoy the ability to just scoop him up now and give him a good cuddle.

Luke's g-tube and feeding history Part 3 with a little bit of bloating and refulx

So in December some time Luke had a couple of things start to happen that we still don't really have explanations for but they are not happening anymore and didn't happen with that much frequency even when they were happening.

First, he would wake up at night high pressuring his vent by bronchial spams (his airways opening and closing or spasming).  When his vent high pressures it is because the vent is using more pressure that we would like to put air into Luke's lungs.  This usually happens when he is out of sync with the vent or crying, or purposely trying to get our attention by pushing air back against the vent.  Luke would not really be awake during the time.  His eyes may open but he was really really trying to be asleep and he was also arching his back and seemed to be very uncomfortable.  Holding him may help for a minute or two but that was all.  This first episode lasted hours.  It was not fun to watch as a mom who could do nothing.  The next night was fine though and I was hoping this was just a fluke.

A few days after this we also noticed that Luke's button got really tight and pretty quickly, it seemed like in the space of a couple of hours and the nurse didn't notice when she was feeding him in the morning but I noticed 3 hours later.  I just watched it but noticed that there was bright yellow bile coming up from his g-tube when we burped him before the feeding.  By that night there was some dark coffee grounds looks stuff coming out from around the stoma and sometimes in the feeding tube.  This was not too good but I didn't know what to do and at that point was hoping it would go away soon and I had just eaten something weird that had come through the breast milk to Luke.  Well the next day Luke was uncomfortable and lethargic.  By the time Kevin got home I was worried but we thought we would watch him for a bit more.  By this point lots of coffee grounds were coming from around the tube.  He was looking so uncomfortable and maybe it pain, it is hard to tell with a Moebius child who has no facial expression we decided to take him in.  His button was super tight and he seemed very bloated.  We called the surgeons who put the button in who agreed with taking him to the ER.  When we got there the ER doc ordered an x-ray to look at where things were and saw that there was some pocket of something by the tube.  He called the pediatric surgeons from DeVoss and over the phone they thought that the coffee grounds was dried blood and this would irritate the stomach and was likely what was bloating it and it is hard for Luke to get rid of excess air because he has a Nissen Fundoplication which pinches the top of his stomach so things can't go back up and possibly aspirate into his lungs.  They instructed us, Kevin and I, through the ER doc to take the button out and let things drain and then put the button back in.  I like to do as much as I can myself, some people don't want to be the bad guy but I would rather have someone who knows Luke and is comfortable with him and him with them to do stuff too him.  Also a lot of docs don't seem very comfortable with Luke because he is on a vent and they assume very fragile.  Also I am pretty go to and in your face.  So the ER doc was very happy to let us do it.  He was finally sleeping at this point which we liked because he wouldn't be so wiggly.  Well when we pulled that button out there was a mini volcano of coffee grounds and bile.  Luke's stomach immediately went back to a normal size and Luke woke up and started making noise and was his normal happy, playing self.  It was like we just turned a switch.  I was ecstatic that it was that easy and wished I could have done it from home.  The docs gave us a prescription for Zantac to help calm his stomach and sent us home with Malox, I think, until we could get the Zantac the next day.

I remember talking to maybe the pediatrician and I am not sure what other specialist about the night time episodes and the tummy bloating and not really getting any answers.   The next time we were at the pulmonologist (which may have been a month or two later) I ran the night episodes, as they were still happening, by the doc and she immediately said she thought it was reflux.  They thought that the food was coming up just enough to trigger the Vagus nerve which signaled reflux and protected the airways from aspiration by having bronchial spasms.  Even with the Nissen Fundoplication they thought that reflux just a little bit up could trigger the nerve.  I have also read a lot about Nissen Fundoplication that fail.  The episodes sometimes had a lot of suctioning and sometimes not.  The suctioning seemed to go more with the face that the spasms where creating the mucus than any food getting up there so I didn't think the Nissen Fundoplication had failed.  I also started making sure he was fed sitting up or at least with his trunk up and leaving him inclined for at least 20 minutes after each feeding.  We used towels to incline his crib since the nurses fed him in there twice a day. 

These reflux episodes can be minor to severe, I think all in all there were only 2-3 really sever episodes and maybe less than 10 minor ones.  However they usually lasted for an hour or more.  It was awful to watch and not be able to do anything.  Luke couldn't stop the spasms and they would wake him up and then the uncomfortableness of  reflux just sent him to a place where no person could sleep.

We continued to take Zantac and got an appointment to see the GI docs.  I was talking to the pediatrician about the reflux episodes, they weren't stopping and he offered to prescribe Prevacid.  I was wary and didn't want to because I had heard some. bad things about it from other blenderized diet parents.  However, when we saw the GI doc (which was in May and this all started around December) she could not say exactly what it was especially because the episodes were so few and far between.  She said reflux is difficult to concretely diagnose and she wondered if Luke just had a really sensitive stomach.  With all the big episodes, but I don't think so much of the small ones, I had been trying to find anything that could have triggered reflux or any of the reactions we were getting.   I had figured out that the big episodes were linked to him accidentally getting 30+ ml more in a feeding or being fed while laying flat.  The doc thought this supported the sensitive stomach but since we had recently had a bad episode she wanted to try Prevacid for a month and then no reflux meds and see how things went.  I agreed to the Prevacid after asking many questions and being assured that getting off it would be very easy if he did not have reflux but still not too hard with reflux (I had heard stories that once you started Prevacid it would be hard to wean a child off it).  Prevacid basically stops the acid production in your stomach which is a pretty major thing to do.  But for a month I would try it.  After a month we got off all medicine and we have not had any reflux or should I say "reflux" episodes in many months.  We will see the GI doctors in a month and hopefully that will be the last time.  I am hoping we were just blowing up out of proportion a normal baby digestive system getting used to the world thing. 

I was also trying to see if the stomach bloating/tight button episodes were correlated with the reflux episodes (I am a trained research scientist).  And for the reflux episodes I never wanted to test Luke by giving him way to much food or laying him flat to feed and seeing what happened because I didn't want to cause him hours of no sleep and pain at night.  It ended up that it didn't always happen after reflux episodes at night but also a couple days before a bad reflux episode so we determined that they were not directly tied together.

The bloating episodes were still going on through all of this.  Mainly in January and February I would say.  We pulled the button out and drained things once with good success.  We never got as much out but then we never let it get as far as the first time.  One time we pulled the g-tube out to drain in and then put it back in and two hours later he was bloated again.  After a couple of times in and out where it didn't make a difference we stopped taking it out when he was bloated, thinking we would only do it as a last resort.  We also worried that by taking it in and out often he would lose enzymes and nutrients he needed in his stomach.  The bloating episodes could come on in an hour or so and go away during a feeding or another time just as fast.  Sometimes they would be all day and sometimes just a few hours.  They were usually accompanied by bright yellow bile coming out of the g-tube when we were decompressing before feeding.  We never got answers to why this was happening.  Their best guess was that the button was irritating the inside of the stomach causing things to bleed and the blood was irritating the stomach which cause bloating. 

We are not on medicine for any of these issues and we haven't had a bloating or reflux night episode in months.  We thank God for this and continue on.  During this, in the middle of January I started introducing real food through Luke's g-tube.  By late February I stepped up the food big time and he has been doing great with the food.  I stopped pumping in June and ran out of breast milk in August and Luke has had no problem on all cow's milk.  I will do a separate post about Luke's blenderized diet even though this was going to be a feeding post, I realized it is a post all unto itself.

Luke's g-tube and feeding history Part 1

At birth Luke didn't seem to be sucking, or swallowing, and so they put a tube down his throat to get some good nutritious breastmilk down to his tummy.  He did great on breastmilk but his breathing did not improve and becuase of the trach (and ventilator) and aspiration risk and with Moebius children having trouble swallowing and eating they put in a g-tube when Luke was about a month old.   His first g-tube was a Bard button.  The Bard button has a low profile, it is a lot thinner than the Mic-Key buttons) and we liked it.  The downside is that if something breaks on it you have to go back to the surgeon to get it fixed.  They told us this button could last from 1-3 years and we thought that Luke would possibly not need a g-tube by then.  It's a 3.5-4 hour drive down to our surgeon so we weren't really wanting this button to break.  A few weeks later he wasn't gaining as much weight as he should and so they brought a dietitian/nutritionist in to see what he needed.  Since I he was eating breastmilk they assumed that he wasn't getting enough calories and so said they wanted to add some formula to the breastmilk.  I was devastated and mad.  But I didn't know as much as I do not, or even a couple weeks later, and so I said okay since I wanted my son healthy.

So begins my battle with nutritionists.  Well this nutritionist came back 3-4 days after we started adding the formula to his milk.  During these 3-4 days I carefully watched his weights that were taken ever night.  They wanted him to gain 25-35 g every day.  Well he had been gaining 30-40 g those 3-4 days.  However the nutritionist said that he still wasn't gaining enough weight and she wanted to increase the formula to a higher calorie one.  I was freaking out and asked how she came up with that since every day he had been gaining enough weight.  She said that she hadn't taken the last two days weights into consideration but she had averaged the weights of the past 10 days which is what she does to evaluate weight gain and he still wasn't gaining enough.  Okay does anyone else see a problem with this.  She is using the past 10 days weights to determine if the formula Luke had been getting for 3-4 days was working of which she only had a few days of data.  So I pointed out to her that she can't use the past 10 days since he hasn't been getting formula for all those 10 days.  She has a before average weight gain and she has to take just the weights since the addition of formula including the ones she hadn't figured in yet to see if he was increasing.  I told her he was doing great with weight gain now and the numbers should show that.  She took her stuff and said she would be right back.  When she came back she had her statistics figured correctly and didn't think Luke needed the higher calorie formula.

About a week or so, I don't quite remember, Luke's vent settings were changed around to help him with his breathing more and then he started gaining weight too fast.  So after 14-16 days of formula addition it was removed.  However, it was only removed becuase I noticed the large weight gains and requested the nutritionist come back becuase I wanted to remove the formula.  I am not sure when she would have come back and even if she did if the formula would have been removed.

So back on track with just breastmilk we left the hospital when Luke was 3 1/2 months old.  Which since then I have realized is a minor miracle for a vent baby.  Before he left Luke had been getting some granulation tissue around his stoma site.  We were told that it is normal for the stoma to develop granulation tissue, which I think is when tissue is trying to grow to close the open hold and exposed skin in the hole created by the button.  We tried putting a split sponge under the button and having nothing under it.  On the day we left they decided to put silver nitrate on it, they just took at stick with silver nitrate on the end and touched it to the granulation tissue.  The tissue turned gray/black and then fell off and after a day or two his stoma site looked great.  We were glad it was taken care of with a pain free easy method.

Luke left the hospital with plaster casts on and his last weight without casts was a day before he left.  They also took a weight, with the casts on, the day he left.  We had to change the casts every week so we took our scale and weighed Luke while his casts were off every week.  I called in a number of the the cast weights to pulmonlogy.

When we got to our first pulmonoloy appointment Luke had just gotten a new set of casts on but they weighted him anyway becuase it is their procedure.  I did give them the no cast weight of that day and some others they did not have.  When the nutritionist came in we asked if we can eliminate one of Luke's night feedings.   We were also looking for a possible food increase since it had been over a month since he had an increase.  When the nutritionist came in she said she didn't want to increase Luke's food becuase he was gaining 50 g per day.  I was surprised but we moved on and she went out to figure out the numbers of how to eliminate one of the night feedings.  While she was out I figured did the math and he had only been gaining 25g since he left the hospital not 50 g.  Something was wrong here.  So when the nutritionist came back I asked her how she figured 50 g and she was figuring it based on cast weights.  I informed her that his casts in the hospital were very different from the ones he got out of the hospital as they had more time to work on them and that each week the casts were different and that is why I had been giving her no cast weights.  Also she was using the weight they got at the office just then which was a cast weight when the casts were fresh and wet so they weighted quite a bit more than a dry cast.  She seemed to not really care that she was using cast weights and didn't really think it was that bad of a thing to be doing.  Ahhhhh!  She did say that she wouldn't change what she was doing since 25g was still within what they wanted.  She told me that if I wanted a food increase before we came back in 6 weeks that I would have to call the office.  I told her I would be calling, and I did a couple of weeks later. 

From here things went along pretty well for the next couple of months with feeding (increasing the amount of food every so often) and the stoma site had a little granulation here or there but nothing that stayed to long.   Our next big hurdle was going to be in September when the valve on the button broke.