PreemieWonderful

Hallelujah!

2011-02-21T07:42:00.000-08:00

Hallelujah, we're finally making progress! Friday we had our clinic visit with Pulmonary. Baby GL managed to grow out of his necessary medications for his lungs. Last time we were there in fall the doctor did not increase his dosages of medications since he was doing so well. This round she completely took him off the medications based on his weight, age and how well his lungs are doing. It's a huge relief to decrease his daily meds. That's 3 less meds that he gets, 2 of which were given twice daily, a diuretic and Sodium Chloride. The other was Potassium, given only once a day. I'm thrilled that all he needs now is his multi-vitamin and his thyroid med at night and a reflux med right before his first feeding. So much less to keep track of.

One other change we made was with his breathing treatments. Up until now we've been using a nebulizer twice daily to give him his steroid med for his lungs. We've also, frequently given him Albuterol with that steroid. Together, those meds would take almost 20 minutes to fully give to Baby GL. With a nebulizer the liquid meds would become a mist that Baby GL would breath in. During that 20 minutes he would pull the mask into his mouth, scream with frustration, and just plain flip his head the opposite direction to avoid it. Now we are using an inhaled version of those medications. We only do the steroid, twice daily, the Albuterol only for if he begins to struggle with breathing. We still use a mask but instead of the nebulizer we use an inhaler. The inhaler connects to an OptiChamber that holds the med inside a long chamber until Gianluca takes 6 breaths, pulling the med into his lungs. There's a valve that moves as he breaths allowing the med to slowly release only by his breath. We give him 2 puffs and it only take a matter of a couple minutes compared to the 20 minutes before. It's like a sigh of relief as the stress rolls off our shoulders. I always made my husband do the breathing treatments because I didn't have the patience for them. I figured if I do all the meds he could do the treatments. Now I've taken back the breathing treatments and all he gets left with is the last feeding at 11pm. He really lucked out. However, I usually make him to the dirty diapers if he's around just to make it fair.

We've been having so much fun with Baby GL. He's moved onto his jumper being his favorite toy. Thanks to our good friend for lending it to us. Baby GL will bounce away the day in there. He's progressed to rotating in the seat now. He's gone almost all the way around. He's figured out how to press the music buttons and he's now found the toys on the sides. He puts so much effort in reaching for the toys. One is a sun with a smiley face that he will cry sometimes if he can't reach it. He will work hard reaching those little arms to get to bend with both hands and pull it to his mouth, tongue hanging out waiting for it to get there. You can see the joy when he reaches it to his mouth, then he bounces again, most of the time if forces him to let go and stop to try again.

Baby GL's latest weight is 12lbs 11oz. He's slow in his weigh gain still, but I think all his playtime is why. I don't want to bump him up too quickly on his feedings, but I think we're making progress. The Pulmonologist said that with is weight and height ratio he's in the 50th percentile. However, based on his age he was only in the less than 3rd percentile. That was when we saw the neonatal clinic a month ago. People always told me he will only be in his clothes for a short time before he grows out of them. He's only managed to get into the 0-3 month clothing, some 3 month items. I can't say I mind, too terribly, though. It's nice to enjoy him before he hits that growth spurt and outgrows everything, including my hugs and kisses.

No more shots

2011-02-17T07:34:00.000-08:00

There are weeks that just escape my mind. These last few months have been moving so quickly that I am in amazement that Baby GL is almost a year old. He's really starting to show his age. He has been so playful and eager to do things. Still isn't thrilled with tummy time, but he now knows that as long as he can get that arm out of the way he can roll over and fix that tummy problem. He still makes his way across the floor on his back. Every morning he wakes up at the corner of his crib, head crammed against both edges. As a typical mother I cushion the corners of the crib but I still giggle when I see him fast asleep ass crunched in the corner.

Last Thursday we had a couple visits to the Children's Hospital Clinics. The first place was actually radiology for an ultrasound. Since he had a blot clot from his picc line I was giving him twice daily injections of a blood thinner. I was pleased to see the clot was gone. It was a successful ultrasound. The process was very entertaining and Baby GL actually did a great job sitting still for as long as he did. The technician propped his chest with a rolled up towel behind his shoulders. He found it funny to do crunches all throughout the ultrasound, which made it very difficult for the technician. It was really cute, though. Shows his strength and eagerness to sit up. He doesn't get past a small crunch yet.

After the ultrasound we went over to the Hematology clinic to get the results of the ultrasound. There we did the typical get him undressed so that the nurses can do his vitals; weight, height, blood pressure, pulse-sox. After that they take us to a room where we sit and wait. It's a terrible process because you wait longer than it takes to get through the appointment. Midway through waiting I told the nurse we had another appointment in the GI Clinic. Well, she ended up sending us up there since the results weren't ready yet. Well, we made our way from the hospital, which is where Hematology is, over to the clinic building. There in the GI clinic we once again went through the process of getting Baby GL's vitals. You would think that the vitals from the other clinic was good enough, but I guess the scales are foreign in each place. He managed to lose a half ounce between clinics. The nurse knew that because she saw the vitals in the computer, but still we had to do it all over again. Something is not quite right with this process. Aside from vitals, I filled out the same paperwork again and answered all the same questions again. After that we waited....and waited. A 20 minute appointment turned into over an hour because of the waiting.

So from the GI clinic we made our way back to Hematology to again wait. I think these clinics would find better efficiency if they scheduled their appointments by how long an appointment actually takes, but that would just be too obvious. Over 4 hours we were at Children's. Baby GL was not a happy baby towards the end. Just at the moment he would fall asleep was when the doctor or nurse would come in.

Well, we survived. In the end we were pleased to not have to give the daily injections any longer. The one thing we got from the GI clinic was that we need to schedule a CT scan on Baby GL's lungs to see if any of the aspirating has been doing permanent damage. So during the appointment this week with the Pulmonary clinic we will get that scheduled.

The rest of the week has run pretty smoothly. Baby GL plays, talks and we still practice spoon feeds. I did accomplish getting his physical therapy set up so that will start next week. We'll see how pleased he is with that.

Baby Monitor

2011-02-09T17:17:00.000-08:00

Something I've been working on this weekend is testing out a new baby monitor. I've been looking for months for a video baby monitor. We want to be able to see our son since he has tendencies to pull his oxygen out and push himself up to the end of his crib. It's more comforting having an eye on him, but knowing he's in a quiet room to get a good nap in.

So the monitor I purchased was the Summer Infant Baby Touch Digital Color Video Monitor. It was very expensive, however, it had a lot of features. I love the fact that with how much Baby GL moves around his crib I can find him because the camera pans side to side and up and down. It also has a zoom so I can get in close to see if he still has his oxygen in his nose. It typically ends up above his nose because he rubs his nose when he sleeps. For those who like their Ipods it's nice, it's similar in size and it's a touch screen. The monitor does connect to the tv, as well, so I can really keep my eye on him while I'm doing dishes or cleaning.

So I'm wondering if anyone has used a video monitor that's similar in it's features. Maybe there's another brand out there I haven't discovered. I would love your comments or if you're looking for a monitor for your child I can be your tester.

Snow Angel

2011-02-09T16:47:00.000-08:00

So when we left off last Baby GL had finally rolled over. He has since rolled a few more times. I think it's more out of the frustration of being on his tummy that gets him motivated to roll onto his back. My mother had him on his side on the couch and he managed to roll the rest of the way onto his tummy. If he has a little help he seem to get there.

We took Baby GL outside in the snow for the first time. He was so bundle he had no idea even where he was. I did manage to get a snow angel out of him. It was a very quick jump in the snow and get back inside where it was warm.

We are in the middle of a very busy week. Friday, I took Baby GL for some lab work for his appointment with the Endocrine Clinic we had yesterday. He did so great. He gets his labs done like a big boy, in the left arm. Endocrine is keeping tabs on his thyroids. He currently takes a tablet daily, that I crush up and put into his g-tube, to regulate his thyroid. His labs looked normal which means that he'll probably continue to be watched with his lab work and come off the meds later in the year. During his clinic visit there isn't much done. The nurse asked general questions, then a student doctor came in to ask more questions until finally the doctor came in to squeeze his neck, belly and feel for his testicles. The thyroid works to produce hormones in the body so I guess it all makes sense. I'm not sure what she would find by touch, maybe something being enlarged. I actually didn't think to ask since while she was poking I was feeding Baby GL a bottle. It seemed to distract him from the poking around.

We also had a visit from the nurse today. Baby GL was due for his monthly synergist shot to prevent RSV. He'll only have one more after this one. It's not a fun experience. Baby GL always cries. The needle is terribly long, I can't imagine that feels very good. The nurse weighed him, 12lbs 3oz and 23 1/4 inches. It's not much weigh gain over the month, only about half a pound. That signaled to me that we need to increase his feedings. He's shown that he cam handle what he's getting now. He takes 3 1/4 ounces in full most of the time now so I think we need to bump it to 3.5 ounces. Over the day thats 1.5 ounces more. With his activity level now I think he needs the extra nutrition. He hasn't had much issue with his reflux which has lightened my laundry loads.

Today we had an evaluation with the Birth-3 program in our area. They offer therapies for children that qualify. After we discussed his progress I decide the advice of the hospital PT, OT and Speech groups was better, to look into an external therapy. Birth-3 is not as aggressive of a therapy for him right now. I believe that he's been doing so well and he tolerates a lot right now that he could handle a heavier therapy to get us moving in the right direction. He may change his mind and decide he's not crazy about a therapist moving him around so that is when we will bring Birth-3 back in. The style of therapy they offer is more of a parent education on home therapy, but not often enough to be aggressive. We already do some home therapy with getting him on his tummy, helping him roll, getting him sitting up, etc. We can only do so much at home.

Tomorrow we have another round of clinic appointments. We'll start in radiology with his ultrasound where he had the picc line during this last hospital visit. Since he developed a blood clot we've been giving him 2 injections daily of Lovenox, a blood thinner. Now, after 6 weeks, we'll see if its cleared up and we can stop the injections. His poor little thighs are bruised up from the needles. I remember how bruised up I was from giving myself those injections during my pregnancy. After the ultrasound we'll discuss the results in the Hematology clinic. After all that we get to visit GI, gastroenterology. I'm not sure what we'll discuss in that clinic this time. They usually take a look at the g-tube sight and follow-up on his feeding progress. I'm sure they will have the results from the swallow study that showed us he was still aspirating during feedings. I always feel nervous going into the clinic with that knowledge because I just don't want that J/G-tube back that made us all miserable.

We'll have a little break from appointments until next week when we go into the Pulmonary clinic. I'm excited about that one. We may get to remove the oxygen or go part-time on oxygen. I'll be on the edge of my seat until then.

Rolled Over

2011-02-03T07:59:00.000-08:00

So yesterday, since we were snowed in with no place to go, Baby GL and I spent the day playing. Well, I wouldn't say just playing, there was a lot of time spent eating and sleeping, too. Mostly him, not so much me. Baby GL loves to play on his play mat, so that's where he spends his play time. Various point throughout the day I will flip him over onto his belly, which is not something he likes for long periods. He'll tolerate it very well for a few minutes. He prefers tummy time more upright, either being held or on in incline, like on his Boppy pillow. You can see in the picture what he does to get out of that deal. Well, yesterday he proved to us just how much he doesn't like tummy time. I put him tummy down and instantly he pushed up into what I would consider an upward facing dog yoga pose. Basically a push up. From there he slowly leaned to the left and POOF! rolled over onto his back. It was so casual, he just rolled and looked up at me like he proved me wrong about putting him tummy down.

I'm hoping this is just the start for him. Baby GL is almost 11 months old. Rolling over would be a great accomplishment for him. Maybe a semi-crawl by his birthday? I may be a little ambitious, but he surprises us everyday.
Boppy Bare Naked Expandable Miracle Middle Pillow

Swallow Study

2011-02-01T20:57:00.000-08:00

Yesterday was another swallow study. It's a very interesting process. Baby GL is in a chair that looks similar to an infant bicycle seat for the back of a bike. We put on our leaded vests to protect us from the x-ray machine that's filming Baby GL's swallows in real time. The machine is put up to Baby GL and we can see his whole jaw line down into his throat. We saw some teeth in his mouth, even though they haven't broken through just yet. We know they're coming. A bottle is then prepared just like at home except with the addition of a dye that can be seen in the camera. We were positive that the study would show Baby GL as a perfect eater, no more aspirating, and a great suck/swallow pattern. Well, he does have a great suck/swallow pattern when he gets in the groove, however, he is still aspirating, and it's silent. When a child is silent aspirating it means they are not coughing which would help release what ever went into the airway. We thought for sure this wouldn't be the case because at home he coughs often, especially when he's hurrying through his feeding. Silently aspirating is not something that can be detected without the camera. It's a scary thing to think about because we would never be able to tell at home if that was happening if he didn't cough. The aspirating just keeps him at higher risk for pneumonia.

After trying the bottle we made an attempt with some spoon feeding. He did really well. We could see on the camera that he took some good swallows. He gagged a little, but more from the unfamiliarity of having a spoon in his mouth.

The result of the study was basically not changing much of what we've been doing. We are to let Baby GL still take a bottle, after 15-20 minutes we should stop, which is usually when he naturally tires out. The remainder of food is to be taken through his g-tube. The one thing she told us was to get through the whole feeding in about 30-45 minutes. It's not an easy task. If Baby GL is awake when we feed him through the g-tube he usually ends up vomiting. He wants to jump and wiggle around every moment he is awake which just shakes up his tummy. We always work towards him falling asleep while he takes his bottle because then we can tube feed him with ease.

We await the day when we can finally be done with all the tubes. I think the oxygen tubing will be gone before the g-tube. Currently, Baby GL takes his oxygen off on his own. It spends most of the day in his mouth or on his forehead rather than in his nose.

We are making strides in his tummy time. He still isn't a big fan of lying on the floor. He works on pushing up and kicking his feet, but after a few minutes he gets frustrated. His favorite position is standing in my lap. I relax on the couch while he jumps away. I think he tests himself because he'll grab onto my shirt and start leaning back. I'm not clear if he's leaning back on his own or if it's his loss of control. I think sometimes it's both.

We've fully weened off all the sedatives. It was a struggle over the weekend. He had moments where he would tremble in his arms and get very agitated. It took a lot of rocking and bad singing to get him to take a nap. Once he did he would usually wake up showing lessening signs of withdrawal. It's crazy to think that our son, only 10 months is having drug withdrawals.

This week Baby GL will be 11 months old, almost 8 months adjusted. Soon he'll have his first birthday, then it will be summer, maybe he'll be walking? I think we'll settle for crawling.

First Shower

2011-01-26T10:54:00.000-08:00

We have found so much laughter in our home with Baby GL these last few weeks. His spirits are so great. I even made my first attempt changing his g-tube button, which I have been avoiding for weeks. It's a daunting thing to think about. This button goes into his stomach so when you take it out he has this exposed hole. I managed to have my husband distract Baby GL while I deflated the mushroom that kept it in place in his tummy. The mushroom, which is just a balloon, is filled with about 4cc of water. So, syringe the water out, slowly wiggle the old button until it comes out. Difficult task when Baby GL is squeezing into his stomach, contracting the muscles. I can't imagine this is the most comfortable feeling for him. I managed to get it out and getting the new one in wasn't bad. It was just get through those contracted muscles and tissues. Once in, syringe back in about 4 cc of water and POOF! We're done! Now we hope the next time it comes out it's out for good.

Unfortunately, his eating habits lately haven't shown us he'll be getting that tube out anytime soon. He finds playing with the bottle more entertaining than drinking it. He bites down then throws out a giggle an he knows you're watching. It's out never ending battle, but it's also so darn cute.

Last night I had Baby GL laying tummy to tummy with me. I tried tickling him in his rib cage area and he reacted with the largest smile and tuck of his head. He was so so cute! When he laughs he opens his mouth wide and then drives his head down into his hands. Every time I tickled him he did it so I think he has realized something new. That's the first time for tickling.

The greatest thing that makes me laugh with my husband and him is when he changes Baby GL's diaper. Baby GL loves to press his feet into the floor to arch his back and lifts his head like he's looking behind himself. Well, this is how he moves. He jumps, jumps, jumps until he managed to get himself off his play mat and across the floor. I've learned to put a blanket down next to the play mat and make him skooch himself to the play mat. He proves to me over and over that this is not hard. Well, now when my husband changes his diaper he jumps and skooches himself out of the diaper before my husband gets it fastened. It takes him many tries until he finally can get that diaper on him. He hasn't learned to move quickly like all us mother's of the world. Daily, Baby GL shows us something new.

Today, I decided to introduce Baby GL to the shower. It's bath day so why not try the shower. Mommy and baby bonding time. I took his oxygen off so not to make it an obstacle course in there. I thought he may cry with the running water on his back, but he really seemed to enjoy it. He looked for where the water was coming from and just took it all in. I think he enjoyed being upright for the shower, as well as Mommy having to hold tight so he didn't slip out of my arms.

Our next thing on the agenda will be Monday. We'll be having another swallow study to see if we've beat the aspirating. Baby GL has been taking a bottle really well and shows us, by coughing, if he aspirates some. That's a great sign and shows us he reacts to correct the aspirating.

Developing

2011-01-23T10:51:00.001-08:00

We've been getting over colds in our household. Because of us getting a little sick we have to be very careful about not making Baby GL sick. I think we did ok, he hasn't yet shown symptoms of a cold or anything worse. We have been battling more with his feedings. He did really well taking his bottle after coming from the hospital. Now he doesn't seem much interested. We have had to resort to more tube feedings which he's not crazy about. We're back to his vomiting fits again. I was so frustrated the other night with him not eating so I reconnected the feeding pump for a few hours just to get something in him. It's a constant battle.

The nurse visited this week. His weight was only 11lbs 13.5oz. Not much gain over the week, unfortunately. It's hard to say why. He really can't get much more into his tummy so we know going up on the food isn't the answer. We'll see this week if anything has changed. Hoping for 12lbs. The nurse seems to think we can be discharged again from her services. Baby GL is doing very well and there isn't much that she does anyway. Her visits are just to weigh him and check his vitals. Even with discharge she'll be back once a month for his synergist vaccines.

We finally were visited by Birth-3, a program for children in need of developmental care. They set up time with OT, PT and Speech teams to work with special needs children. Once they are 3 if they still have special needs the school district begins offering assistance. After our initial evaluation with a social worker we have to have an evaluation of his needs with therapists and that's not for a couple weeks.

We had the start of our follow-up appointments this week. It was the big one measuring his development. A lot of questions by the nurse about how he is at home. That was followed up by OT, PT and Speech doing an evaluation on Baby GL. They rolled out a carpet and all sat on the floor and played with him. Purposeful play. They watched for how he grabbed things, was he able to reach across his body, bring things to his mouth, etc. They even called out his name to see if he knows it. He reacted and looked at the one speaking so he passed that test. Overall, his movements and range of movements mimic a typical 4-5 month old. Not too far off his corrected age of 7 months. His vocals are closer to a 3 month old which is not surprising since he's been intubated so many times. Their recommendation was to get Baby GL weekly visits with a physical therapist. Birth-3 tends to not offer enough therapy services so we are mostly likely going to have to outsource our therapy.

After therapy we went upstairs for a hearing test. He passed with flying colors. No worries with him hearing. in fact he shows up he hears so well that he's actually oversensitive. He is startled by most any sudden noises. Also by any quick things happening in his range of sight. I guess it's typical with some babies and preemies. That's another thing we'll be working on with him.

It's coming to a point that we will need to work even more each day on his needs. His favorite thing is being on the floor playing. While I'm sitting here writing about Baby GL he just let out the loudest burp. Just shows how big he's getting. Anyway, once he's on the floor he manages to scoot himself up the floor. He arches and kicks his feet and moves right off his play mat. That alone is huge progress in our eyes.

Sleep Baby, Sleep

2011-01-14T07:49:00.000-08:00

We are so thrilled to have Baby GL back home. It's taken a few days to adjust to his schedule. On Monday he went to see his Pediatrician. He was very impressed with how great his lungs sounded. He lowered his sedative dosage as part of the weening process. Today we'll be calling the Pediatrician to adjust dosage again. It's a slow process to prevent withdrawals. He still will continue getting his 2 daily Lovenox injections. We have an appointment set up for an ultrasound in a few weeks to check the blood clot. If all looks clear we'll be able to get off the blood thinner.

So we've been playing around with Baby GL's feedings. The first few nights he was home he was really restless, which made us restless because we wouldn't sleep. He came home on the schedule he was on prior to going into the hospital. We were able to tweak that a little bit. He would get 2.5 oz of formula 4 times a day and then an overnight feeding by pump into his g-tube. Well, the 2.5 oz was very easy for Baby GL to quickly consume so I bumped him up to 3 oz. He managed that with no problems. His reflux seemed to really improve over these last few weeks which keeps him from vomiting. So with the 3 oz he was getting less pumped overnight. We still saw how restless he was so I adjusted a little more. Instead of only getting 4 feedings by bottle we began feeding him all by bottle, which begins at 8am and finishes at 11pm. The luxury of have a g-tube is that he can get a bolus feeding when he's sleeping so the final 11pm feeding is usually fed all through the g-tube. The last couple nights we've been on this schedule, Baby GL has slept so peacefully and slept through the night again. I can't say the doctors will agree with our methods, but I can see how much better Baby GL is.

The nurse came on Tuesday to check in since now we are back on her services. He was weighed and we must be doing something right. He was 11lbs 11oz and 23 inches. He's really been gaining well which is great since he lost so much in the hospital.

Baby GL has really been showing us how big he is. Only in this last week I've seen so many changes. We were able to get a teaspoon of rice cereal in him by spoon, which he seemed to like so we'll continue working on that. He is doing so much better lying on his tummy. He'll push up a little but will just be lazy most of the time and suck his thumb. He seems to fall asleep anywhere now. I could never get him to lay on my chest and fall asleep. Now he seems to really love it, but only on Mommy, not Daddy. This morning he fell asleep playing on his back under the play gym. I think after everything that has happened he's just finally getting into his own. He's happy and comfortable and I think he really knows the difference when he's home compared to being in the hospital.

Coming home again.

2011-01-08T15:21:00.000-08:00

What a week we've had. So after Baby GL's freeing episodes he manage to come to a nearly full recover. After getting put on CPAP we got the news that he may be able to try high flow. That's fast progress because usually it's CPAP for a few days then high flow. He was on CPAP maybe 24 hours and when we returned to the hospital we found him on only 1/2 liter of oxygen. Turns out they tried him at 4 liters and his saturations were consistent at 100%. By the afternoon, when we came to see him, he was down to .5 liters. That's almost home oxygen settings. Huge recovery from being extubated 2 days prior. By the next day he was on .25 liters which is his normal home oxygen settings. He just impressed us with how quickly he recovered.

During this time getting off the higher amounts of oxygen there were some cultures drawn looking for any bacteria or viruses. He had struck a fever a couple days so they were searching for a reason for it. Results came back with a bronchiolitis virus. Not a common one that the nurses had heard of, but apparently a baby had been in recently with the same virus. It's treated just like any other virus, with antibiotics. The virus didn't seem to affect baby GL's attitude. Later on they found MRSA which is another type of virus, one that is contagious so the staff had to wear their gloves and gowns every time they came in his room.

While intubated Baby GL was pretty heavily sedated. With that came a journey of weening of the sedation. It's a very slow process. He would ween off one med, but change to another that was not quite as strong. The nurses grade him on a scale watching the signs of withdrawal. A couple things they watch for were his irritability, trembling limbs, and even sucking. The nurses took his obsession with pulling his oxygen cannula in his mouth as excessive sucking. We had to reassure them that the cannula game is something we've played for months. It can definitely get confused with excessive sucking.

So something we found out days after discover and treatment was that Baby GL had a perforated eardrum. The nurse was briefing us about new meds including an ear drop when we found out. Surprise to us. I guess they were able to get on top of it to treat it without major damage. We found out later the virus he had could cause ear infections. We just hope it won't mean he'll get ear infections regularly.

By Tuesday, Baby GL moved to the 8th floor. He wasn't in need of the ICU any longer. Great news, but for us, we prefer the ICU where he gets regular attention. We knew, though, discharge must be close. In the move the hospital staff managed to leave behind the glass angel ornament Babcia (Grandma) gave him for Christmas. Housekeeping didn't find it important when they came across it and tossed it in the trash. The hospital was very nice about trying to replace it for us, but it was a lost cause. There's always something that happens when we go to the hospital.

Some goals to meet before coming home were to get back to our regular feeding schedule. Speech worked on his bottle feedings and even made an attempt with applesauce. He did pretty well, typical first food issues, but we were given the go ahead to keep trying.

Baby GL will come home getting daily Lovenox injections. Something very familiar to me since I took that during my pregnancy. While he had a picc line near his clavicle a blood clot developed so he needs the blood thinner to break it up. I had to learn the injections with the nurse for us to get that checked off our discharge list. He'll get those twice a day for a total of 6 weeks when they'll perform another ultrasound to look for the clot. We also had to learn his other meds because he's still in his weening process from the sedation meds.

Well, after all that, Baby GL came home last night. It was a wonderful feeling, but I could feel the anxiety creeping in. We really want to keep him safe now and we worry that we're not doing enough to protect him from all the germs and illnesses floating around. I don't know that we can keep him completely unexposed. My husband was so happy to have him home he slept on the couch next to him in the bassinet. He was awaken by the nurse coming by the check on Baby GL. His weight has come down, 11lbs 3oz. He looks very healthy, though.

We've spent all today getting reacquainting with our care habits and his habits. The biggest issue is keeping that cannula out of his mouth, an impossible task. We can see some of the withdrawal symptoms coming out so we are trying to be really on schedule with is sedation meds. All week we've been listening to him cry very quietly with his very horse voice from being intubated. Today he's showing improvement, his coos just get louder each time. The scratchy cry is pretty cute, though. Come Monday he'll be seeing the pediatrician to see about adjusting his sedation meds. Hopefully he'll see improvement so we can get him off those meds.

Free at Last

2010-12-31T09:48:00.000-08:00

Baby GL is calling the shots now. He managed to flail his arms free of everything. He flailed so much his iv fell out, it wasn't in use anyway. He flailed the other arm too, so much that his arterial line moved it's way loose. The nurses do a really do job at making sure these lines are secure, so I can say this was not an easy task for the average patient. Good thing for him, though, because now he has his hands back. I don't know how they expected a 9 month old baby to stay strapped down. When I went in to see him he was fully bundled in a blanket with the sand bags they use for positioning him all laying on and around him. All I saw was his face, but he was very sweet and fast asleep. The nurses told me that every once in a while when they looked in on him he would manage to get one arm free. That is his personality. He was never much of a swaddling baby. It was comforting to hear my Baby GL was back to his feisty self. Aside from that I was given the news that if all goes well, he'll be extubated in the afternoon.

We've made progress. Yesterday afternoon Baby GL was extubated, no more tube. He was put on the CPAP, which he knows very well. He was very happy to get rid of that tube. The nurses told me he was in relief and immediately showed it after extubation. After extubation they did an x-ray to see how his lungs were doing. Unfortunately, the right side wasn't looking good. He had a breathing treatment with Albuterol around that point and he seemed to cough up a lot of junk from his lungs. With his lungs still looking ill the doctors wanted to try that NAVA system with the CPAP. It is a new technique that hasn't been used much yet, but it was successful for him while intubated. When the doctor came in to check on him he was surprised at how comfortable and peaceful he was so they decided to hold off on any changes until later in the evening, after another breathing treatment and x-ray. I was left sitting on the edge of my seat until after 8pm with the decision.

Come later in the evening Baby GL did manage to self-repair his lungs with the breathing treatment and rest. His x-ray looked much improved so the doctors held off making any changes to his current oxygen settings. That gave me relief. There was the chance that if his lungs still weren't improving they were going to have to re-intubate which would set him back tremendously. Do you see how Baby GL loves to live on the edge?!

I'm looking forward to see how our New Year will progress. It's hard to image Baby GL as a toddler with all the fight he's given us as a baby.

New Ventilator

2010-12-29T13:18:00.000-08:00

Baby GL is still having a long nap, however, he has moments when he wakes up to make the nurses dance for him. As of Sunday we had success removing the paralytic meds. Baby GL is still sedated on a few different meds. He continues to get a fentanyl drip for pain and a couple others meds that keep him settled and calm. Yesterday we were able to come down on the dosage of sedatives, but when he has moments of discomfort and begins flailing his arms the nurse do have to bump a little extra to calm him. It breaks our hearts to see him open his eyes that little bit. You don't know if it's pain or drowsiness. I just want him to sleep so I don't have to wonder if he's in discomfort. When that flailing begins the nurses have to try tying his arms down. He has an arterial line still in one wrist and an iv in the other. We gave him a pacifier to try to comfort him but I think it made it worse. Baby GL likes to hold his pacifier now and to put a thumb or finger in with the pacifier. He couldn't do that so he became more upset. He even had that thumb stuck out and ready to go.

Something the doctors have been mulling over the last few days was if they should try a new breathing system call NAVA. It works with the patient more. It takes an NG tube (through the nose), and a sensor, of sorts, is placed by his diaphragm. The machine predicts the next breath so that it knows how much assistance to give, if any. The machine allows Baby GL to do more of the breathing on his own. The doctors decided yesterday was a good day to get him on it. Turns out, he loves it. He has been calmer and on less oxygen since being on the NAVA ventilator. He is still intubated, but hopefully this will move him faster towards extubation.

Due to the paralytics and sedatives the nurses have been working on getting Baby GL's gut working. Those meds cause ours systems to slow down so it's harder to have a bowel movement. He has had glycerin, some other drug, as well as a couple enemas. With his system on slow motion his feedings have been held. He was up to normal feedings with his formula a couple days ago. I think its been a day or so he's just been on iv fluids to keep him nourished until they can start that formula again. The problem with the formula was he wasn't digesting it well.

At this point we are just waiting on him. His lungs are looking better each day. Now on the NAVA ventilator he won't be getting the IPV breathing treatments that seemed to really clear up his lungs. The only thing we can do is wait until he's ready. My guess is he'll still be in the hospital another week if not longer. It just means I'll be spending New Year's on the very uncomfortable hospital pull out. However, I get to spend it with my baby.

Christmas Smiles

2010-12-25T16:43:00.000-08:00

Baby GL is having a very long nap. Once he wakes from all this I'm sure he'll keep us awake for days. His condition is improving. All of his tests came back negative, which means no RSV. The doctor also says it's not pneumonia. That's wonderful news for us because that means he's not aspirating and we won't need to deal with GI during this visit. Even though he doesn't have either of these severe illnesses he is still dealing with a nasty bug. His lungs are just not strong enough to handle any kind of respiratory bug. We hope once we're past flu season we wont have to worry as much.

Yesterday the doctors made an attempt to stop the paralytic meds. As I and my husband suspected, it didn't go well. A sedative isn't strong enough for our stubborn Baby GL. He never enjoyed intubation so we expected him to fight, which he did. As a result he was put back on the paralytic. He just needs to recover because when he fights he clamps down and can't get the great airflow he needs in his lungs. They may try again removing the paralytic tomorrow.

Today the RT removed the ion meds from his breathing tube. He's been weened over the last day. The nurses also switched over his feedings and meds. He's been on TPN IV nutrition and only small amounts of formula. He's officially off the TPN now and moving to full formula feedings via g-tube only. He's been getting an Epinephrine drip for the last couple days also they are weening. The last thing they removed was the foley catheter. Now they just weigh his diapers as they've done during past visits. I think until tomorrow that's all the changes.

I stayed with Baby GL last night so that he wouldn't be alone in Christmas. About 4am the nurses and RT came in for one of his breathing treatments, as well as another x-ray. I had to leave the room for that. Before I left I was pleasantly surprised that Santa didn't forget Baby GL. He had some wonderful gifts at the foot of his crib waiting for him. He got a Mr. Bump toy which brings back so many memories for me. I loved the whole Mr. Men series and it just brought a smile to my face. It was so sweet that he was remembered, even in the ICU. He even had a visit from Santa on Christmas Eve morning. One of the doctors grows out his beard and dresses up for all the kids. It really warms a families heart to know the kids are being so well taken care of.

The most information we have for Baby GL coming home is that they are looking at Friday to be their goal for extubation. I'm hoping it will be earlier. It's really up to him, though. Baby GL has always decided his schedule. We had hopes to have him home sooner than a couple weeks but it doesn't look like that may happen. He's in a safe, protective place for making him completely healthy so we can complain. We'll have some time now to sanitize our home and make it very clean for when he does finally come home again.

Santa's sleigh? Ambulance ride

2010-12-22T21:40:00.000-08:00

There is a point when you look into your child's eyes and you feel like time has slowed for just a moment. It's in that moment today that I felt fear overwhelm me and my adrenaline cruise control came on. This morning I made a last minute appointment to see the pediatrician about a cough and heavy breathing that Baby GL has been having for about a day. The cough has been an issue we've been dealing with on and off for weeks now, but yesterday it got progressively worse. We've had a few nights of little sleep due to his discomfort. I feared that we were going to have an issue with putting him in the car seat since the last time we had breathing issues the car seat just accelerated the problem. My feeling was correct and I watched as Baby GL turned dusky, eyes wide open, just staring at me. He couldn't cry, not even gasp for a breath. That was a moment I will never get out of my head. It only took a second for me to grab my phone and just dial the 3 numbers a parent dreads.

The moment I took Baby GL out of the car seat and laid him on the couch he was able to breath and cough. As I was speaking to the responder on the phone he was kind of crying a little, but then soothing himself with sucking on his fingers. It was only minutes and we had 3 EMTs in our living room. There decision was made quick to just scoop him up and take him to the ambulance. We decided Children's hospital was the best place to take him since he was there just months ago being treated for pneumonia.

The whole ride in I could hear him cry. It was actually comforting because I knew he was breathing...and fighting with the EMTs. Once at the hospital he was prepared with an oxygen bag, monitors, and a whole slew of doctors and nursing staff. Deja vu, I think we've been here before.

One thing they did right away was measure his blood gas, which measures how much CO2 was in his blood. His normal range is about 50-60. Today, it was 100. Intubation was brought up at that point. Since I've seen him intubated already so many times the doctors made the attempt to try a CPAP and see where his gases go. It wasn't a successful try. He fought the RT who tried to get the mask put on. He was all fists in there. The nurse nicknamed him "ALI". We discussed sedation, but seeing his drop in saturations when he got excited the best decision was just to intubate.

After being sedated they were successful in intubating Baby GL. The one thing about intubation is that it will give him a rest. His little lungs have been working overtime. After intubation in the ER they finally has a room ready for him in the Pediatric ICU. Up there he was undergoing more tests and a pic line needed to be put in. He had a pic line, an arterial line and a foli (? not sure about the spelling). It's basically a line that I'm guessing goes to the urethra because it's meant to collect his urine to measure his output. He needed restraints on his arms because of all the lines.

Since we were continuously being kicked out we took that as our cue to leave for a bit. After a couple hours, now into the the early evening, the doctor called me back with an update. There was a concern about Baby GL having some spasms in his arms so they wanted a head CT to check if he possibly had a seizure. Then he continued to explain that since he does have a whole in his heart and his lung are already so damaged he his as higher risk for pulmonary hypertension. Because of that he was being put on an type of inhaled ion med. It was connected right to his breathing tube.

When we finally arrived back at the hospital there was still a lot going on. The CT came out fine, no seizure. However, he was dropping his heart rate which they are still going back to the idea of the pulmonary hypertension. He was connected to the ion drug and had another x-ray to make sure his tube was correctly placed in his airway. Due to our little Baby GL being such a fighter he needed to be not only sedated but given a paralytic for the time being until he can relax in his new settings. The nice thing about the paralytic is that he will not remember any of this.

Most likely we will be spending Baby GL's first Christmas on the fifth floor of Children's hospital. He'll be in good company, I think. There are some other babies there. Tis the season for RSV and other respiratory junk going around. We just hope he won't need to be in there woo long.

Growing

2010-12-21T09:06:00.000-08:00

We are nearly to Baby GL's first Christmas. Prior to Christmas coming, Baby GL had another synergist shot last week. The nurse comes to give him his shot. That one is very important to protect him from RSV which preemies are at higher risk at getting. He'll get the shot monthly through the winter. I can't say it's a pleasant visit from Gianluca. He's never crazy about the band aid on his leg.

His weight during the visit was 11lbs 5oz, 23 inches. He must have hit a small growth spurt because the time between 21-23 inches went very quickly. I'm putting away more clothing now because there's no room to stretch his legs. I find a lot of his clothing to make him feel better physically, because so many are huge through the tummy, but very short in the length. For Baby GL, who has shorter legs and arms, it works towards his advantage. He may not realize the sizing issues now, but I can and he will see his pictures when he's older.

Our day to day is pretty much the same, lately. We've been trying to work more on his exercising. We haven't had a visit from therapy in the last 3 weeks so we've been doing the exercises we were taught and extra we feel he'll love and benefit from. Most of the time we're working on getting him to laugh. We get goofy and he gets the "you're strange" look on his face. However, we do crack a giggle sometimes. He seems to have a better mood in the morning so we'll see more smiles and giggles then.

We've been struggling with our sleep the last few nights. Baby GL will begin screaming without even waking up. Usually we can fix it with the pacifier, but it won't always last long. It's like he knows when you get in bed and lay down because that's the point he'll explode. This morning it occurred to me why he may be having some issues. In an attempt to be a "health promoting" Mommy and get in the band wagon of brown rice I tried it on Baby GL. Apparently, there's a group trying to get parents off the habit of feeding white rice as the 1st food to babies. I agree with the logic, but i think it's hard for Baby GL to digest which may be the reason for the sudden change in his sleep habits. As much as I would love to promote a health start to my son's diet I can't support his screams of pain. In the Ayurvedic diet (Indian), brown rice is actually not great for easy digestion. I will go back to the plain single grain rice for him and we will see if it makes the difference. I hate to experiment with my son's meals but I just want to find what makes him most comfortable and promotes good growth.

Unfortunately, Baby GL is a little too young yet to take part in the holiday meal and many festivities of the season. I get his attention when I sing him Christmas carols. Again, I get that look of uncertainty from him. I like to think he gets that it's a holiday. He definitely knows it cold outside, because he gets bundled so tightly when we go out. Maybe no sledding this winter.

No More Nurse

2010-12-12T09:06:00.000-08:00

Snuggled and sleeping in my arms while I write. Baby GL is doing great. We are snowed in for the day so it's perfect for a little lovin' time. He is getting so clever each day. He loves to pull his oxygen cannula down from his nose and suck on it in his mouth. I'm constantly re-taping the cannula in his nose. He's also getting closer to rolling. He kind of rolls up a little and drops to one side, but then straightens out to roll back to flat. He'll go back and forth while pulling on his toys on his play mat.

This week Baby GL finally arrived at 11lbs, 22 inches. We're hoping to get better results with the new feeding schedule. His reflux seems to be improving. He still will have some vomiting episodes. This morning during his morning meal he vomited and looked at me giggling. He doesn't giggle much so I just wonder what he was thinking at that moment. Maybe "ha ha Mommy has to clean me up!"

As we've adjusted to the new feeding schedule, we've actually made some changes. Our hopes is to get off the feeding tube. With a 2oz feeding, Baby GL does really well as finishing without the need to use the tube. What we decided to try was bumping him up to 2.5oz by bottle each feeding, which would be 2oz less we've need to feed via pump overnight. By doing that we may be able to move to one extra bottle feeding and even less time by pump. It's a process and it takes time to make the adjustments. Patience is not always on our side. We're trusting we know what we're doing because now we've been discharged from our weekly nurse visits. She'll now only come once a month to give Baby GL his synergist shot to prevent RSV, which is a respiratory illness that affects preemies. He'll still have his therapy visits so at least we're not completely on our own.

Each day is such a blessing for us. Now moving into the holiday season we are having so much fun with Baby GL. I hope that we can get him out in the snow one of these days, but I'm not going to push it. We'll just continue to spend our time snuggling and playing.

9 Months Old

2010-12-05T14:11:00.000-08:00

Officially 9 months old already. I can't believe where the time has gone. Three months ago we were still in the hospital. In these last three months we've had a few scares, but Baby GL has battled everything with a smile on his face. His most recent weight is 10lbs 12oz and still around 21 inches.
This week we visited the GI (Gastroenterology) clinic. It was a good visit and one that opened our eyes a bit. I went in concerned they were going to make us put the G/J tube back in with all the problems we've had with reflux and vomiting. The GI doctor is most concerned about his weight. He made me feel better about the reflux. I knew it was a typical problem in babies, but I didn't realize how common it was. The recommendation to add rice cereal has improved his reflux greatly. It's actually helped him sleep more soundly at night, too. He's sleeping so well we can start using the Nap Nanny for play time.

One thing I've been struggling with is Baby GL's feedings. He hasn't been gaining weight as well as he should be. Because of that I've not known how to feed him. During the day he hasn't wanted to take a bottle very well. I think he's had a stuffy nose. Without a good amount through the bottle I'm left to feed him more at night, which results in him getting full. At the GI clinic I was able to speak with dietitian who put together a feeding plan for us. I didn't realize how wonderful it was to have that help. We used to have a speech therapist coming to the house to work with him but she just stopped coming.

The new feeding plan is 4 feedings during the day, 20z each. If after 15 minutes Baby GL doesn't finish the 2oz then we bolus the remainder into his g-tube. Over a 9 hour period overnight we will feed him with the pump a little over 1oz an hour. It amounts to 18.5oz a day. We still add the 2ml of oil and the rice cereal, also. It's helped really push us to stay on schedule. I posted the feeding schedule on the cabinet so there's no excuses from my husband or myself as to why a feeding didn't happen. So far we've been pretty successful. We'll hope for some good growth this week.

Aside from GI we did go to the pediatrician. Baby GL was due for his second Hep B shot and flu shot. He immediately started screaming with each shot. He made it through the evening without a fever, which was very good. However, he was a little restless leaving restless as well.

The pediatrician is somewhat concerned about his growth as it's charting. He recommended we see a genetics counselor to maybe see if something genetically is happening. We actually already had a time set up for July in our plan of specialist appointments.

Baby GL is a small baby. As much as we want him to grow, it's been nice to have a small baby for a little while. He spent 6 months in the hospital, but we still brought home a newborn. Baby GL's corrected age is just about 6 months, but he still in the tail end of newborn clothes. I think we'll come to a point where he'll grow so quickly that he may skip a size. We'll be hoping for the days when he was small.

Eat, Baby, Eat

2010-11-29T18:30:00.000-08:00

It's been a huge challenge, how do we feed Baby GL. From the beginning we've battled how to get the proper nutrition for Baby GL. He wasn't good at taking a bottle at the beginning so we had to skip even working much on it for quite some time. Now, when we thought we were through all our battles we are coming back to needing to skip it again. Baby GL just doesn't want to take enough to thrive without a g-tube feeding. We've had even more issues with his reflux so when we do get a good feeding it just comes right back up. The challenges are never ending, so it seems.

The newest recommendation by the pediatrician is to add some rice cereal to the formula to thicken it up. Well, that just added more challenges. It was so thick it was difficult to get through the bottle. The end result was a screaming, hungry child. I finally gave up and brought out the feeding pump and fed him the rest of the bottle though the tube.

We need to get though these challenges in order for Baby GL to grow. His weight today was 10lbs 12oz, which is only a 4oz gain in a week. We hope for an ounce a day and with the vomiting and not eating we are hitting a brick wall in progression.

Aside from all the feeding challenges, Baby GL is doing great. There's been a concern about his reoccurring cough. We had a chest x-ray done just to rule out pneumonia and we did. His lungs look pretty good, actually. We have been told to just keep doing what we're doing. I have a feeling the reflux is playing a role in the cough.

Thanksgiving went very well. No turkey for Baby GL, not even his sweet potato. With the battling we've had with feedings I've been too distracted to remember trying solid foods again. I don't think he's missed it too much. As long as he has something to chew on he's pretty satisfied. We're ready for that first tooth anytime now.

Our day to day now is to just get him fed and keep him entertained. He still loves his bouncer and I got him a large FAO Schwartz plush lion that he just adores. He loves to look at it and play with it's face. It seems to keep his attention well. I think we're getting more laughs from Baby GL now, too. He's full of smiles but it's that belly jiggling laugh I'm waiting for.

Solid Food

2010-11-20T16:03:00.000-08:00

We have officially recycled the milk storage containers in the freezer by using them for baby food. Baby GL has been on mostly all formula now for about a week and a half. We started that when we opened the last milk from the freezer. I do nurse a little bit, but he goes through stages of wanting to nurse and times he's just too impatient to work for it. It is a relief not having to remember the 3 hour schedule I was on. We made it over 8 months so I feel good about the nutrition for Baby GL. Mixing formula has actually made it easier to prepare meals for him. Up until now it's either been waiting for milk to thaw or quick running to the pump. I think if Baby GL didn't need the extra calories or nursed without the necessity of a shield to latch on we may have been able to go longer. I will keep nursing once or twice a day just to give him a transition period. I think it's more for myself that it's difficult to let go.

Baby GL seems to have recovered from whatever he may have caught last week. Every once in a while he has a cough, but the Albuterol clears it up pretty effectively. Even with a little cough and illness Baby GL kept up his smile and cheerful glow.

Baby GL's new favorite toy is his bouncer. We have officially retired the swing. That swing was with him in the NICU so I guess he's had his fill. He wants to be more active now. Lots of kicking and grabbing. In the swing he would jump so much he nearly jump over the edge. We've concluded he must be teething, too. With everything he puts in his hand it will get to his mouth. Even his pacifier is a toy. He chews on it more than sucking. He'll pull it out swing it around and manages to get it back to his mouth. I bought him a ball with textured spikes to get him feeling and he will grab it with both hands and lift it to his lips. There's nothing that won't go to his mouth. His cousin gets a little jealous of Baby GL in the bouncer. He even tried to get in with him which is never a success. He plays with all the toys on it and will snuggle in next to Baby GL a little. It's very tender to watch.

With Baby GL teething he's lacking an appetite. It's been a struggle to get him to take much by bottle. The g-tube has been getting a lot of use just to make sure he gets what he needs each day. Baby GL uses the bottle nipple again as a teething toy. He's figured out he can bite down on it and he'll pierces his lips around it. The problem is that he lets the milk dribble down his chin instead of drinking it.

He doesn't want to take a bottle, but he does want to chew on things so the only solution was to try some solid food. Yesterday was a huge milestone. I prepared some sweet potato and watered it down with formula. I only put small dots on his spoon to try it. His first few tastes resulted in a curled lip and a look of disgust. After a few tries he seemed to enjoy a little something in his mouth. He even managed to give me a few good swallows. I didn't get much in, maybe a quarter of a teaspoon but it was a good start. I tried again today and I got pretty much the same response aside from the curled lip. He helps the food down with a finger or four. What I found to be more effective was putting some food onto a teething brush so while he got a little gum massage he sucked the potato off.

We are so excited to go into the holiday season with Baby GL. We are making so many memories already and we feels so fulfilled by him.

New tube, new cough

2010-11-13T15:56:00.001-08:00

So we had a successful transition to the g-tube last week. The removal of the G/J-tube was pretty easy and the new mic-key button went in quickly. We were able to have it done right in clinic, no need for radiology like we needed to replace the G/J. The one shocker is that if the mic-key button breaks or falls out, more like is pulled out, I will be the one to replace it. Not sure how comfortable I am with that, but when or if that time comes I will have to deal with it. It's actually quite a small device. Maybe only a couple inches if that. It has a balloon as the other devices have that just gets filled with water once inserted and it stays in place. With the button we are able to disconnect the feeding tube so that all that he has throughout the day is this small 1/2 inch diameter button that sticks out about 1/4 off the skin. It is much easier to take care of compared to what we've had up until now.

The weekend went pretty smooth aside from a worsening cough. I started doubting my decision to change his tube because he was vomiting a lot of his milk.. At times it was like the occasional spit up. I did have the nurse come on Monday to get him checked because the vomiting is when we worry about aspirating.

The nurse actually said he sounded pretty good in his lungs. She instructed us to do his Albuterol treatments every four hours to help open his lungs. The hope was to break up whatever was there and reduce his cough. The great news was that even after his issues he managed to gain weight, bumping him to double digits, 10lbs 1oz, 21 inches. What a relief to see the scale go up.

Unfortunately, we continued to have issues with that cough. He wasn't keeping much milk down at this point. By Wednesday we were calling the nurse. We were going through towels and many changes of soiled clothes. We ended up getting him into his pediatrician to take a look at him. The nurse worried it could be pneumonia again. I can't help but laugh a little at every new event that happens because it feels like we'll never move away from these worries and problems.

Well, the pediatrician had a better reaction to Baby GL's symptoms. He tested his oxygen saturations to see if he was getting enough. The recommendation was to bump him up to .5 liter from his .25 liter just to get him past this. We were to continue with 4 hour Albuterol treatments, and he put him on a cycle of both Amoxicillin and Prednisone. The Prednisone worried me only because I know how it affected me and couldn't image how it would affect a small infant.

We got our answer that night when Baby GL awoke at 12 midnight and never went back to sleep. We rocked, we soothed but nothing calmed him. He had a fever, about 101, so we were trying to bring that down. His hands were like fire. We ended up, by about 6am, giving him a bath. It seemed to help, and he did sleep, but only a couple hours, maybe. By late morning his fever spiked 102 so I called the nurse and the pediatrician. The Pediatrician's recommendation was to ride it out. Between the two meds they would resolve whatever was happening, but sometimes they take 24 hours to kick in. The nurse came to check on him and was still worried as she was the day prior. However, we were told to wait. I did ask about giving Baby GL Pedialyte. When I fed him he took a bottle like he had never been fed before. Those signs showed me he was maybe dehydrated.

As the day progressed he did take a couple ounces of Pedialyte and his fever came down. His cold hands returned, what a relief to feel those clammy, cold, saliva-soaked hands. Even through the fever Baby GL was such a trooper. He was smiling and cooing as he had before. I noticed a lot of relief when he finally got a good long nap.

By Yesterday Baby GL was pretty much back to normal. No more fever, no more vomiting, just happy smiley baby. PT even came on and he showed off as he does like he never had been sick. We tried him in his bouncy saucer this time. He's still small for it but with a pillow under his feet and a blanket behind for a small support he did great. Baby GL actually liked it. We didn't want to prop him too much because our goal is to strengthen his core and neck muscles. He's being doing much better at supporting his head. So this is our new toy. Between the bumbo and bouncer he'll be busy. I think his favorite is just lying on his back on his play mat. He can't get enough of his lion.

I think one of my favorite moments happened this morning. Baby GL welcomed us with his gurgly "Good Morning" talk. He wakes with conversation, which is much more pleasant than cries and screams. I spent 30 minutes this morning listening to his stories. He is so articulate that you can almost imagine the words he's trying to make. There's a quiet, interested voice during conversation, then the occasional excited squeal, followed by more soothing coos. Even his tongue and mouth action changes as if there are words developing there. Maybe other parents don't think those coos and gurgles are as meaningful. Baby GL continues to exceed our expectations of how quickly he'll progress that every moment is so meaningful and memorable. One thing I forgot to add was that when the nurse came back on Wednesday she weighed him again, 10lbs 4oz.

Halloween Scares

2010-11-04T09:19:00.000-07:00

I never should have called Baby GL boring. He made up for it this week. We have been battling how to change his feedings. If it was up to the doctors Baby GL would be on a tube feeding for another 6 months or more. Well, as the parents we are woken up midway through the night by our child screaming. His schedule has been nursing and oral feeds during the day then tube feedings into the jejunum part of the tube which directs the milk into the intestine. It completely bypasses the stomach leaving him feeling very empty and hungry. After all day eating he gets hungry at night even though he's get a full feed.

To try and combat this I decided to try feeding him into the gastric part of the tube Friday night. It would be just as he had all his time in the hospital, everything going to his stomach, just in smaller amounts over a longer period of time. It was a very successful weekend doing the feeds this way. He went three nights without any major issues. He still deals with the gas and I think he gets full towards the morning without having a break in the feedings, but otherwise I feel he felt better.

One thing we started noticing more of was a leak in the tube which was a whole another issue. I've noticed in the past that the jejunum port doesn't have a really tight seal so I would find yellow stains on Baby GL's clothing. Especially over the weekend, with not using it, I noticed it even more. It's disturbing because you wonder what is it that is coming through the tube. With his gastric feeds I did notice a little milk coming through the jejunum, but still with a yellow substance, too. I ended up taping the port closed to prevent the leaks which could only be a temporary fix.

The nurse came on Monday as she does weekly. I told her about the tube so she was able to contact the GI clinic about getting it looked at. I needed to go through Speech and the doctor that did his swallow study before I got the okay that I was doing things correctly. As a result they agreed to remove the G/J-tube and replace it with a G-tube button like he had for about a week in his second visit in the hospital. It will be such a relief to do away with the G/J tube. It's awkward and has caused us more issues. I think it's slowed his progression towards full oral feeds.

With the nurses visit I was relieved to find I did something right in his feeds because he gained 8 oz. Now he weighs 9lbs 14oz and 21 inches. I've tried to be very careful in measuring the amount of food he gets as well as trying to increase his amounts in oral feeds. The one thing I'm finding is that my freezer is nearly bare of milk. I'm not sure I feel ready giving him just formula, but I think I will be able to continue nursing and just formula as the supplement.

So after all that we still had more issues last night. Around 2:30am I woke to his feeding pump alarm telling me his food was empty. When I went to take it off everything around it was wet. The gastric port now is leaking. What a headache. At about 6am I tried reconnecting his feeding and I couldn't get a tight connection. Even with tape and a clamp it leaked and left me doing another load of laundry. Because of the leak Baby GL didn't get his full amount of feeds for the night and I'm not sure what to do to get through tonight. My husband and I discussed a trial run with overnight oral feeds. We may be forced to try it tonight.

Well, after all that, Baby GL had his first Halloween. We didn't go trick-or-treating, but we did dress up. I was so excited to find a giraffe headband so he wore that a few times last. Saturday, while sitting with his uncle he had his Trick -o- Treat tee. My sister and I escaped to a haunted house for a night out without kids. My sister and nephew dressed up to trick-or-treat on Sunday. They went as mama and baby bumble bees. Baby GL wore the pumpkin his cousin wore his first Halloween. I wasn't sure it would fit because it's a newborn size. He's almost 8 months and not quite 10lbs, but we are almost to the next set of clothing.

So now we are looking forward to tomorrow. I worry a little if we're making the right decision switching him. Last night with a bottle Baby GL started coughing and his whole bottle came up on me. That's when it's scary because it's on the way up you worry about aspirating. He seems to be fine but our nurse will be coming to check him out today just to make sure his lungs are clear.

Aside from all our drama, my husband and I commented on Baby GL's voice. In the NICU we worried if his vocals would recover from his repeated intubations. Well, we have be reassured of his recovery, loud and even louder. He loves talking. He gets louder everyday and his vocalizations are changing. It's incredible to witness those changes.

2010-11-03T09:47:00.001-07:00

No appointment

2010-10-27T10:01:00.000-07:00

We've had a pretty calm couple weeks, lately. The only crazy thing was that I frantically got Baby GL together in only a matter of minutes on Friday to get him to an appointment that was a mistake. It was an appointment I had rescheduled but it was still on the print out I had from the clinics. It was an 8:15am appointment so when I awoke at 7:15am I remembered, but also doubted myself. Oh, well. There will be these moments of craziness and absentmindedness that we will have to get comfortable with.

Aside from that mishap things have been going very well. We are so impressed by Baby GL and his progression. OT and PT continue to work with him. He still needs a lot of work on his mobility but there had been much improvements. I use the Bumbo chair to practice his sitting up and we hold him up on our shoulder most of the time to get his head control. His tracking with his eyes has greatly improved. He's even looking for Daddy now, which, usually it was just me. I can't complain about that. His morning ritual is time on his play mat playing with his toys. He grabs them and brings them to his mouth and talks to them. Its his own morning workout.

So we've been working more and more on his feedings by bottle and nursing. With that his diet is as caloric. As a result his weight this week is the same as it was the prior week. No weight gain, however, no weight loss. He's also still 20 inches but that's not going to change quickly. The goal is an ounce a day so now he's a little behind. I am working on tracking his feedings better so I know how much to set up for his overnight G/J-tube feeds. Hopefully we'll see a weight gain this week. Judging by his clothes you would think he gained a lot last week.

I think Baby GL's favorite pastime now is laying on our shoulder sucking his whole fist. He gets nearly the whole thing in his mouth now. He's been trying two at a time now, too. Sometimes he switches it out with one hand and a pacifier. Anything to fill his mouth until he eats next.

It's been such a turn around watching him eat. He went from choking up with every suck to eating so quickly he wants more. I think back just a couple months and can't believe the progress we've made. We wondered how long we'd need to feed him through the tube and it was hard to see an end in sight. Now we see him taking solid foods within a couple months. My anticipation for those moments get me so excited every morning when I wake up.

I want hear stories from other mothers. I am sure that I'm not the only one going through these daily routines. Whenever I go to a appointment I meet other mothers with similar issues. One woman I met had a son that was born at 23 weeks, 1lb 4oz. He had cataract surgery at the age of 2 1/2. He a very feisty little boy, but you look at him and would never know anything was wrong. I really admire those mothers for all the wonderful work they're doing.

Bumbo chair - Wednesday, October 20, 2010

2010-10-20T12:00:00.000-07:00

Baby in his Tiny Gdiaper

I made the comment to the nurse the other day that I'm running out of things to share about Baby GL. His life has gotten pretty normal, which is wonderful news, of course. We aren't running out everyday to catch doctor's appointments. We actually have one this week on Friday. It's a flu clinic, which, I honestly couldn't tell you what the doctor will do at the appointment. Other than that one we just have the regular visits from the nurse, OT, Speech and PT.

Last week we began nursing during the day in place of me pumping and Baby GL getting the continuous feeds. Speech recommended I journal when we nurse to get an idea of home much he's taking. With nursing he just gets straight milk. On his continuous feed I fortify the milk to with formula that comes out as 27 extra calories. I also add vegetable oil to his feeds. We wanted to make sure he still was gaining that ounce a day even without the fortifying and extra oil.

The nurse came on Monday to weigh him as she does weekly. The great news is that he gaining exactly 7ozs from Monday to Monday, 9lbs 6oz.. She gave me the go ahead to keep doing what I've been doing. It changes a lot in scheduling out his meds, but it's nice not to have to set up the pump for his continuous feeds. We nurse every 3 hours or so and then come evening, about 9pm, he'll go onto the feeds at a rate of 46ml per hour. I usually run it between 8-10 hours.

Aside from gaining weight, OT and PT seem to be pleased. Our goal is to continue working on his mobility. We even pulled out the Bumbo chair today. PT wants me to give it a try to stretch out his hamstrings and get him to tones those torso muscles to sit up. He's so cute it in, but it only lasts a few minutes before he gets upset. I'm hoping he'll make progress in relaxing those tight muscles all throughout his body. We do our daily baby yoga twisting and stretching. At least he enjoys that.

No eye surgery - Saturday, October 16, 2010

2010-10-19T09:11:00.000-07:00

Baby GL has been doing great this week. We've made some changes to his feedings. Instead of trying to get in a few hours of continuous feeds during the day we are nursing and bottle feeding and leaving the continuous feeds to overnights when he sleeps. The bottle doesn't go very well. He is so eager for it that he chokes up on the milk once he figures out it's not his pacifier. Even then he gets too excited. When you take the bottle away he screams, but then he's too worked up to get control. For the most part I nurse him. He does a great job nursing. We have been just watching how long he nurses and he goes for an easy 30 minutes, which is how long our speech therapist recommended. He does seem to fall asleep before 30 minutes in up sometimes.

Baby GL's weight as of Monday was 8lbs 15ozs. We are probably over 9lbs by now. He is really filling out. His cheeks are the fullest I've ever seen them.

Our only appointment this week was his eye exam on Thursday. We finally reached the point the doctor was looking for. He will not need laser surgery and we actually don't need to go back for 6 months. Most of his appointments are spread out now into the spring which gives us a little break. It also means he's doing great.

I think our goals are to work on his oxygen, which is nothing we can really help. He'll get to that point as he grows. We are hoping with the increased oral feeds we could get rid of the G/J- tube in a couple months. The biggest thing we're working on is his tight muscles. We've gotten some exercises to work on stretching him out especially through the legs and relaxing his shoulders. We basically do our own baby yoga at home. He really enjoys it, surprisingly. He lets me stretch his legs up towards his head, which babies should be able to touch their feet pretty easily. I also do gentle twists in his torso. That has the added bonus of helping his release some gas. I was working on his twists yesterday to help him have a bowel movement. He isn't quite regular, which is a slight concern. A little glycerin and we can get things moving. However, we don't want to have to keep using the glycerin.

We work on tummy time, too, when we do his exercises. He's not as thrilled with tummy time, but he's getting better. He loves being on his play mat playing with the toys that hang above. His sight, I think, has much improved because he really locks on to different shapes and colors. He'll look around just for anything interesting to look at. The tv is a big one for him. He doesn't care what's on. Just the lights and movement gets him watching.

Today I stocked up at the farmer's market on squash and sweet potato. I'm looking forward to starting spoon feeds with Baby GL. I'm thinking by December he'll be 6 months, corrected age, and we'll be able to give it a try.

Baby GL is growing so quickly now. It's amazing to compare this time with the time we had with him in the hospital. It's definitely more pleasant now having him home learning his quirks and behaviors and how they change. I think he realizes he's home, too. He looks for us and knows we'll come running to his cries and coos. So young and already outsmarting us.