Happy Halloween from the Lil' Tiger

Happy Halloween

No Surgery Needed So far…

Baker had his checkup yesterday with the surgeon. The surgeon said that he still doesn't have an inguinal hernia, but hydrocele. There will be no need for surgery, and he'll follow up in three months. This should resolve within a year.

Hitting Milestones

As you can see by the pictures below, Baker has hit some milestones. He hasn't needed oxygen since we were given the order to take it off during the day. We still put it on at night (just to be safe), but most every day since his visit with the pulmonologist he's gone without supplemental oxygen. The other thing missing oh yeah his feeding tube!!! Well he started pulling out the tube at least twice a day since last week, so we made a deal with him. We won't put it back in and continue to bottle feed him if he does well with the bottle feeds. He's kept his end of the bargain so far. We talked to the GI and his speech therapist and they both told us as long as he's gaining weight then go for it. He was taking 1 to 2 bottles a day for a week or so prior so we did kind of gradually work him into this. The therapist did notice that he was getting a little fatigued near the end of the bottle, and showed us what to look for – but he's trooping along. Since he's started the bottle feeding his overall demeanor has been happier, and he's getting more formula then we were supposed to give him through the tube. So our fingers are crossed that he's gaining weight, so that we can do away with the feeding tube and pump.

It's such a relief for his mom and I to be able to bottle feed him. The enteral feeding was so impersonal. You fill the bag with warmed formula; make sure the tube is in position and press the button to start the feed. He doesn't look like he's eating, and sometimes seems not even to notice what's going on. We even would feed him while he was sleeping sometimes. With the bottle we can look in his eyes, watch him drink the milk and look satisfied when he's done eating. (I'm probably making that up, he is only really 3 weeks old officially).

He had a visit with his pediatrician yesterday to get more shots and for a checkup. His inguinal hernia has gotten worse, so he's going to visit a surgeon again on Thursday to see if they should operate to fix the hernia. We've read up on this surgery and have actually talked to a parent whose son had the same surgery and they said it was pretty routine and usually outpatient. Even though I hate to see him undergo any type of surgery at all, I would rather they do it and get it over with. It has progressively gotten worse since he left the hospital, why wait until it gets life threatening to deal with it? Even though we were told that the grunting, bearing down and cries were normal preemie things, his mom and I still think this has something to do with the hernia. Baker isn't your normal preemie, so stop generalizing… J

I miss not having a team of experienced nurses to bounce ideas off of, or get their opinion based on their experiences…

Baker News…

Baker finally had his first appointment with the pulmonologist. The doctor said he looks great and was surprised that his O2 saturation levels were so high. He told us to take him off of the Oxygen during the day, and only put it on when he is sleeping or if his stats slip to low. So we followed the Doctor's order yesterday and he didn't need any extra oxygen until this evening. He also told us that most babies get off the oxygen at 6 months. So he may soon be able to lose the extra support!!!

He weighs 8 pounds 2 ounces. Also to catch you up on his progress, we had to stop the bottle feeding because near the end of the feeds his stats would go down. The GI doctor told us to stop the feeds for now, to avoid a risk of Aspiration Pneumonia. He has had a couple apneas while he was sleeping so the doctor has ordered a sleep study.

More Baker Photos

New Pics

So far everything is going well. Baker just keeps getting bigger and bigger, and hasn't scared us in a while. He hasn't had a doctor appointment in a week or so, but they will start back fairly regularly in October. Since I don't have much of an update, I leave you with some pictures…

Click on the picture to go to the public photo album...

Second Week Home

This has been a good week for all of us. Teresa's parents came down the first part of the week. Last time they saw him, he weighed under 2 pounds and was really sick. Now he's a big boy with multiple chins and lots of chub. Baker loved his Grandparent time.

Baker had two appointments this week, one with the GI doctor and the other with the Ophthalmologist. Baker has acid reflux issues now so he is on Zantac. So far it looks like it's helping. The GI doctor also gave us the o.k. to bottle feed once a day and to slowly up the amount of food he's getting. At his last weigh in he weighed an ounce under 7 pounds.

The visit with the Ophthalmologist could have been better. The one that he was seeing was on vacation so a substitute came in. This was the original one that told us everything was fine with his eyes, and that there were no signs of ROP at all. His inability to explain to us what's going on drove us crazy. I'm not sure if it was a language barrier issue, or if he's just not used to talking to parents but it was really hard understanding what he had to say and some of his information conflicted with what the original surgeon had to day. Basically what we took from it is that Baker's eyes have healed well from the surgery and they are looking really good. What that means and how that equates to an outcome in the future is anybody's guess, since the more we asked qualifying questions the more he confused us with circular non-committal answers. He took a page from the same book that the first Neonatologist we spoke to prior to his birth read from. I'm sure it would be titled "Covering Your A**, How to avoid explaining the possibility of a good outcome for fear of a lawsuit if it turns bad…". So his eyes are good for now, we have an appointment with the original surgeon in a week – so we'll get more info then.

Baker’s First Few Days Home…

This past week has been such a relief. Our son is home where he belongs and doing fine. It has been quite an adjustment, but I figure all new parents have to go through most of this – the lack of sleep, tag team night feeding, etc. We got the monitor situation calmed down quite a bit. Readers and a nurse suggested the Belt for the apnea monitor would help cut down some of the false alarms and it did. We still get alarms from the Oximeter, but not as frequent and we haven't heard anything out of the Apnea monitor for days.

He had his first venture out on Friday to see the pediatrician and this was interesting to say the least. Teresa practiced loading everything with Baker. As you can see by the pictures this is no small feat. Getting Baker into our car requires carrying Baker, the diaper bag, the oximeter, the apnea monitor, his feeding supplies(pump, bag, syringes and tubing) and his over the shoulder oxygen bottle (when leaving the stroller in the car of course). So our next milestone will be shedding the monitors. Even though that day when we have to give them back comes, we will probably not sleep again – they do provide a level of comfort that aids in parental rest.

We are getting adjusted quite nicely to our new life with Baker. We've only had one scare so far which prompted a call to his on-call pediatrician. When I picked up Baker his eyes went screwey. His left eye was looking all the way left and his right eye was looking all the way right. Baker's eyes have been fine since a few weeks after he opened them. He's already lost the lazy eye he had in the beginning and his eyes track really well together. He also went limp and non-responsive and oxygen levels started dropping. We jumped into action, Teresa grabbed baker and started stimulating him and I called the emergency on call number for his peditrician. His oxygen saturation didn't go down that low and he didn't lose that much color and was breathing so it was weird. One of the peditricians in the group called back and while I was describing what was going on Baker came back to normal.

We were told to monitor him, check his temperature and if he got a fever to call back. He then stayed awake and alert longer then he ever had since he's been home.

Baker is Home!!!!

We finally made it home with Baker last night around 8:00 PM. We had to wait all day for his oxygen, and we got a taste of the logistical nightmare that it is to go anywhere with our little miracle. He has a mini oxygen tank, oximeter, and apnea monitor that we have to carry around. All of these devices have 1 or more probes sticking on Baker and when we move him we have to be able to reach all the devices in case of an alarm. When we got home last night we met the home oxygen delivery person, who had the humongous oxygen tank for Baker's home use. The tank is about as tall as I am and is now part of our dining room. He has tubing that will stretch to every room of our home.

It was such a joyous moment seeing our wonder boy at home, no nurses, doctors or other sick babies just Baker and Mom and Dad. We finally can close the first chapter of Baker and start the next.

Of course we didn't sleep much at all last night. Both his monitors false alarmed any time he moved. The oximeter sounds like an old alarm clock just louder and the apnea monitor lets out an ear piercing beep (like a smoke alarm). Once one of them goes off it's like a spiral effect – it scares Baker and makes him twitch and cry which sets off another alarm. He had no apneas or heart rate dips last night every single alarm we got was a false positive. We put a call in to the company that provided all the alarms to see if they have any ideas to stop the false positives, we have to at least be able to get a full hour of sleep in at a time right?

Here is to everyone that has followed his progress and prayed for his good will and has provided support for us and him. We thank you from the bottom of our hearts. The blog will continue so stay tuned…

Anticipation…

Well of course, yesterday wasn't the actual discharge date. The order for his take home oxygen and oximeter just went in about an hour ago so we are patiently waiting for a call back from the company that provides this equipment to verify that it can be delivered today.

To catch you up on his progress, he is doing excellently!!! We had a great time rooming in with him, and ever since have been soooo ready to bring him home. The nesting thing kicked in full force with Teresa, and the house is more than ready for his arrival. He was diagnosed at the end of his last week by his new pediatrician that he may have an inguinal hernia. He had a surgeon take a look and they found that it wasn't a hernia but hydrocele instead. (Please click links to find definitions of each..)

We got confirmation that he is coming home today, the oxygen and oximeter are on the way. Yippie!!! We will get pictures and try to post tonight on how his first day home went..

Rooming In

Tonight is the first night Baker, Mom and Dad get to stay together alone!!!! We are currently in a room at the hospital and this is so great. It is kind of hitting home how much work our little man is going to be, but it's worth every minute of it. Well here is where we are at so far. Baker is not on Oxygen but has an order for supplemental O2 when needed. Every once in awhile he needs a little help, hopefully he won't this evening.

We have a lot of equipment here in our room with us, all of which we'll be bringing home. He has the O2 saturation monitor, apnea monitor, and feeding pump. We also have his nasal cannula hooked up to the oxygen and a CPR bag in case of emergency.

So here we are still in the hospital but together for a whole night alone…

Baker Scares Dad Again…

Baker will probably be coming home with an NG tube (feeding tube) because of the issues he is having with his feeding. So we have to demonstrate to the nursing staff that we can insert the tube properly and check it for residuals. His mom got to do it for the first time yesterday and it was Baker's dad's turn last night. I figured, how hard could this be I've seen the nurses do it before, I'm not usually squeamish about medical stuff – we've been through so much before….

Well it was one of the hardest things I've had to do for him to date… He was fighting me to the end, and after a couple tries I finally got it (with a little assistance from his nurse…) Now you have to push some air through the tube to check placement, and I couldn't hear it. His nurse heard it and Teresa heard it but I couldn't… So that was very traumatic, because of course the last thing I would ever want to do is intentionally hurt my own son…

So he was very hungry by the time I got to bottle feed him because of the time it took for me to practice inserting his NG tube, and we are finding this is the most dangerous time to feed him. When he gets super hungry, all he wants to do is suck and swallow and forgets the important part of breathing. So I was feeding him, and stopping him for a breath every 5 or 6 swallows. Now with a perfect storm of circumstances his nurse wasn't watching us feed him(she was called out on an emergency and had to go), which was different from every other time. We have to have a nurse watching his stats while we feed him because of the issues he's having with eating. Feeding him takes practice because we have to make sure he's breathing, not going too fast, that he's awake, and that he's taking breaks to get a good breath in every 4 or 5 swallows. We had a transport nurse watching, but not really actively talking me through the feeding like all the other times. Baker's O2 saturation levels dropped dangerously low and he started to change color. The nurse that was watching jumped to action grabbed an O2 hose and started working on Baker to bring him back. He suctioned him out and got him back to normal. Now when I read these words, it's not doing the situation justice. Those few seconds were devastating to me. I froze, even though I just went through informal CPR training I froze.

Baker was up and down on his O2 saturation and Heart rate after these episodes so his mom jumped in and decided to get some skin to skin time in (kangaroo care). This did the trick. There is something to be said about the healing powers of a mom's touch. He is so funny, I tried to reposition him on Mom's chest and he flipped out on me and grunted… J

Teresa and I are now going to do scenarios every day until he get's home, so that we are prepared to resuscitate or scare him back to breathing if he does this again…

Baker has a date!!!

We have just received the best news yet! Baker will be coming home Monday, September 3^rd. He's still doing great with no supplemental oxygen. The hope is his bottle feeding will be organized by then. If not, it will still be o.k. we will be trained this week on feeding him through a tube. I'm so excited it's hard to write this post. What a miracle!!!

So his Baby shower on Saturday will also be a welcome home party!!!!

Some Sanity…

Since the last post we've seen some changes. Baker doesn't have the bottle feeding down perfectly. Sometimes he does great and sometimes he doesn't do so great. There was some concern that he could be aspirating milk into his lungs. He saw a speech therapist that ordered a swallow study. This is where they drink barium while being x-rayed. We were warned that he would probably be going home on oxygen and a G tube or OG tube. So either we would have to learn how to insert a feeding tube and feed him through it or he would have a tube surgically implanted in his stomach so that he could eat through that.

He did really good with the swallow test and found that he's swallowing just fine, so now they think that it's just a disorganization thing (a product of his prematurity). He's probably also getting tired too easy, so now he's on a mix of bottle feeds under certain conditions and tube feeds.

We got apnea monitor training today, and some CPR training as well. For the first few months after he gets discharged he will have to be hooked up to a monitor that monitors his heart rate and his breathing. If his heart rate drops too low or he doesn't take a breath for 20 seconds then we get a loud ear piercing alarm that is sure to wake up our neighbors as well as us… (think smoke alarm on steroids…) If anything this will allow us to sleep with the knowledge that if he does stop breathing we'll wake up to remind him. He went all day today without any Oxygen which was very exciting. We've been down this road before, so I'm cautiously optimistic.

Surprise… (just kidding..)

Well Teresa got a call yesterday morning from the "acting" discharge nurse who had a message. "There is an order in for Baker to be discharged Thursday or Friday of this week…"

Now before I go into what happened next, let me give you some background here. For the past 11-12 weeks we've been hoping and praying for this day, the day he will be discharged. This would be the happiest day in our life, and a start of a new chapter in our family. Praise God! We've been fully prepared that the madness won't stop here, that Baker will require a ton of follow up and may come home with some extra equipment but still he will be home.

Finally we've been assured in the past by his primary neonatologist that we would be given around two weeks notice when they assessed that he was ready for a discharge plan. I always figured it would be at least a week knowing that nothing ever goes as planned when it comes to his hospital care…

When we got the news we both went through the most horrifying mental journey. The first thought was he's NOT ready yet, the second was we're NOT ready yet and the third was the most sickening guilt I've ever felt in my life. Why wasn't I jumping up and down with joy and praise? My dear son is coming home…

Well apparently they were just kidding. The discharge nurse was not the real discharge nurse, but a fill in. She apologized what she meant to say was that we need to do the apnea monitor training soon (Thursday or Friday) because Baker will be going home soon; maybe even next week (at the earliest).

Baker doesn't quite have the bottle feeding thing quite down yet (which is expected he's only at week 35 gestationally) and he's still on O2. We knew he was progressing rapidly but didn't think he was there yet. The last few nurses he's had didn't know Baker and I can almost bet everything I own that they were under reporting status changes in his condition (heart rate drops and O2 desaturations). His primary nurse got back in today to straighten him out and to give the doctors an honest assessment of his progress.

Besides the irregularities in his care, Baker is still trucking along really good. He got a follow up EEG and they are saying that he is showing no evidence of seizure activity, so they are going to take him off of the Phenobarbital to see if he needs it or not. He had his follow up eye exam today and they found the right eye was healing nicely but they couldn't clearly asses his left eye (I hope I got that right). They are going to do a follow up exam on Tuesday.

Dizzying Day…

Baker is doing great. He's recovering well from the eye surgery and really making progress. So much has happened today. Mom and I got to bottle feed him for the first time today. He's getting better every time, but still doesn't have the suck, swallow, breathe thing totally down yet. They had him off of the nasal cannula for most of the day today and he did great. They put it back on when I fed him this evening because his O2 saturation dipped and didn't come back up. It seems like he may be coming home in the next few weeks, which is crazy… They've put us on notice but haven't set a date yet, but everyone keeps telling us that it's going to be soon. He is going to come home with an apnea monitor. Which we thought was going to be the case, but we don't think we'll be bringing him home on O2 since he's almost off of it now.

Here is some video of his first Daddy feeding… J

Home Again

Baker was finally transported back to his old NICU Thursday night around 10:00 PM. Here is what happened since my last post. I have to correct the record a little bit as far as the experience we had at the other hospital. He actually had really excellent nurses throughout his stay and they made the difference and helped with the adjustment of being in a new hospital. On the night of his surgery we stayed by his bedside pretty late into the morning and his nurse had one of the Parent Child rooms cleaned out for us to sleep. These rooms are normally for parents with children that are transitioning out of the NICU to home. We were told that evening that they were probably going to transport Baker back with his breathing tube to his original NICU in the morning.

We slept a little bit and checked on his status. They had no idea when they were moving him and still thought they were going to transport him back intubated. His belly was swollen and hard and he threw up this brown stuff. We got worried and the nurse explained that they gave him all of his vitamins, caffeine, and medicines through his feeding tube on an empty stomach. She didn't have an order to give them through his IV line. She called over a doctor (resident actually) I think she was our age or younger and had no idea that his medications could be delivered IV instead of orally. She didn't have any answers to our questions either. It was around 11:00 am when this was all going down and they still had no idea when, how or who was going to transport Baker back to his primary NICU.

Most of this day was a blur, but from what I recall this morning after that we left the NICU and called his primary Neonatologist and told her what was going on. She assured us that Baker will be transported back to their NICU without the breathing tube, and it will happen today. We called his nurse back and she explained that Baker pulled his own breathing tube out, they put him back on the nasal and he was doing fine with his breathing.

Finally they got him back to his current home (away from home) that evening. He is recovering well so far, but still can't open his eyes.

Surgery Update

Baker went into surgery at 6:00 PM this evening, and they finished at 8:30 PM. This hospital is completely different then his normal one. It's a larger hospital hospital, and the staff is not as friendly. We both felt more like a number, then NICU parents. When we talked to the doctor after the surgery, he hit us with another surprise. Baker's ROP was actually Stage 3 with "plus" disease or "severely advanced" according to the surgeon. We were completely blindsided by this news, since his original prognosis yesterday was Stage 2. We came into this with the understanding that the surgery was more preventative, and that the disease was not that advanced. We were wrong. The doctor that performed the surgery of course was pretty callous abut the whole thing, and left us with no solid outcomes for Baker's eyesite. He will get drops for the next 10 days and a follow up exam in 2 weeks. The other thing we were told that the surgery will effect his peripheral vision (we aren't happy about this at all.)...

Anyway again we are left with the feeling that we've been run over by a train, but still have hopes that Baker will pull through this challenge like he did every other one.

Just when we thought...

Hello all. I haven't updated the Blog recently because I can only say so much about how great Baker is doing. We had no significant changes until today. Baker is now 4 lbs 8 oz and still plumping up nicely, he's still on low flow O2 and doing fine with it.

Baker had his cranial MRI yesterday. This provides a better idea on how his brain faired after all the bleeding and we got excellent news!!! He did have a very small amount of PVL on the left ventricle but that's it!!! So in English (from what I understand) this means the damage is very minimal and more then likely nothing to worry about at all. The MRI isn't the end all test, we will only know how his head is really around his 3^rd year of life – but from having the highest grade bleed a baby can have to this is absolutely remarkable.

Now for the not so good news… He had his follow up eye exam, and is showing the beginning stages of ROP. He is now in stage 2, which is good that we caught it this early. Baker is going to move to a different hospital for a couple of days for another exam and eventually laser surgery on his eyes. The laser surgery is a lot like Lasik. He is probably going to have to go back on the breathing tube for the surgery, but we heard that the outcomes after surgery are usually great. He may not even need glasses in a best case situation. We've been told by two different nurses now to be prepared when we get to the new hospital, that it's not run like the one he's in and that it's a residency (or teaching) hospital. He was supposed to leave today, but they canceled the transport at the last moment so we are currently on standby – and probably be moving him tomorrow.

Just when we thought we were out of the woods, it turns out it was just a small clearing. J

Then and Now

Baker is still trucking. He is doing so great. Our daily doctor updates have progressed from his doctor saying (while fingers crossed), "Baker is ok" to "Baker is doing excellent". He still is on the nasal cannula, but on minimal settings (o2 and air volume). He now weighs over 4 pounds, which means as of today he's moved from his temperature and humidity controlled isolette to a normal baby crib!!! We also are going to attempt bottle feeding tomorrow, well actually the nurse is going to. They need to observe if he's ready to suck and swallow correctly and make sure that he doesn't accidentally suck the milk into his lungs. His mouth is still too small to breast feed, but he definitely wants to. His mom has been doing what they call "sham feeds" at some of his feedings. This is where she puts him to breast while he's getting his food through the feeding tube. This is just to get him ready when he get's big enough to actually do it… Here are some then and now pictures of our fighting tiger.

Baker's Home Then...

Baker's Home Now...

Baker Then...

Baker Now...

Complete Wonder…

I can't even describe what I'm feeling right now. This has been another week of wonders. Good eye test, no more breathing tube, we can pick him up and hold him and hand him to each other. It took over 8 weeks for us to do another thing that parents usually do the day their baby is born; swaddle him, pick him up out of his bed and hold him, then hand him off. It sounds like such a standard thing, but we've waited over 8 long weeks to be able to enjoy this.
Baker is still taking no prisoners; his voice is coming back stronger every time I see him. He is now on a low flow nasal cannula (as opposed to high flow I guess?) When the first put him on the nasal cannula it seemed like it was blowing some serious air into his tiny nostrils. This had to be very irritating because I could just imagine how annoying it would be to have fast moving air blowing constantly up my nose. Now he's on the low flow, and though there still is a steady stream of oxygenated air blowing into his nose – it's a gentler stream of air.
The little man is still eating like a champ, and his feeds have increased. He's also starting to let us know when he's hungry. He makes the funniest faces; he seems so serious sometimes for such a little guy. Now some pictures…

Videos

More Pictures

He's still doing awesome. Here are some more pictures from the last few days..

Pictures from This Evening

He was still going strong on our visit tonight. The nasal cannula is much better then the CPAP as you can see in the pictures below. He is much more comfortable with those tubes... We had a fantastic evening our boy is doing so well. We both still have to be cautious because there still is a chance that he can go back on the ventilator. We know another family whose daughter was born a week before Baker. She has been extubated and re-intubated a couple of times – so possibilities are out there. The good thing is while the tube is out his lungs are developing better. So our fingers are crossed that it stays out and he’s ready to breathe on his own.

Quick Update

We have to leave in 15 minutes but I had to get this update out. Baker had a big day today. They took him off of the breathing tube and it was so wonderful being able to see his full face for a few minutes. The then put him on a nasal CPAP . It looked scarier then the breathing tube and he did not like it at all. At 6:00 pm they switched him to a standard nasal canula, I haven't seen it yet so I can't explain what it looks like. I think it will be a little more comfortable then the other thing.

Baker also had his first eye exam today and we got good news from the eye doctor. He has no evidence of ROP which is great, and as far as he could see his eyes are fine. They are about 85% developed which is good for his age.

We just have to keep our fingers crossed that Baker is ready to be off the ventilator, so far he is winning this test.

Here are some pictures from last week...