Getting Frustrated

One with the tube, one without. Read the post before you get too excited about the tube being out :)

Ahhhhhhh.......starting to get supremely frustrated. Sleepyhead just doesn't care to eat, man I wish I had that problem. He just doesn't care to perk up and eat, and I don't get it. They keep telling us that he'll get it, the lightbulb will go off (but I forgot to ask if that would be prior to kindergarten or not?). Nobody seems worried about this, so I guess that is a good thing. I voiced my concern to just about any nurse or doctor that would listen to me today, and they decided to conduct an experiment. So far the experiment is a disaster. The schedule for feedings is strict at the hospital, he gets fed at 9/12/3/6 (day and night) and must take his two ounces at each feed. Whatever isn't taken orally is pushed through the tube. So in order to mix it up and see what would he would do if we changed that around, they opted to pull the tube and let him take whatever he wanted and on his own schedule (the longest they'll let him go is 4 hours, and then they'll wake him up).

So far he is even less interested in eating than normal, which I didn't expect to be the outcome of that experiment. We did sort of mess with him at the 12 feed, as his tube was out and we had to give him his reflux meds orally.....and he did not like it one bit. After that, he did not trust anyone coming near his mouth with anything. He looked like we fed him a lemon (I am sorry I missed that photo op). I could only coax him into taking half after the medicine debacle. The next feed was even worse, taking a third. I doubt this experiment will continue the 48 hours it was originally intended to go.

I requested a sit down with our primary doctor, nurse, occupational therapist and social worker to drill everyone about the feeding situation. Tuesday we will all sit down to go over everything feeding related as well as what to expect when we go home. I was also informed that yesterday during rounds, they all decided that they should just send Colt home with a monitor. They think that given his lengthy stay on the ventilator in his early days, and his lung condition at birth, that it would just be safe to send him home on one. It is a little portable monitor that he wears all the time, except for bathtime. They said he'd probably have it for three months.

In other completely unrelated news, I have a blog I would like to share with anyone who is also "addicted" to reading blogs. I have had so many people say they are addicted to reading about Colt, I thought I would share one that I am addicted to. This family just had a 24-weeker, 3 weeks ago, the mom has cystic fibrosis and is awaiting a lung transplant and the dad journals their journey at http://www.cfhusband.blogspot.com/. He has a really cool outlook on life, and his current situation. I can completely relate to their NICU ups and downs, but I find great inspiration from his writings about faith and life. I think this was interesting...a post from his blog today:

I envy those people who's faith is most evident in the good times. I totally stink when it comes to having an awesome relationship with God in the good times. I keep asking myself why it takes something like my present situation to really make me believe that God really is who He says he is. I "seem" to do a pretty good job on my own most of the time...it seems to me that it's often a lot easier to trust God when you've nothing left to lose than to trust Him when things are going well. I tend to take the easy road...

Tiny Tiger

These photos below are of Colt's Letterman Jacket...it was given to him by our friends Donn and Kodee (Thank you Donn and Kodee!!). We had to post it, because it is the cutest thing we've ever seen! Kreg's high school mascot was a tiger......so now Colt can be one too.

Colt was seen by OT this morning and she decided to change the bottle type to see if that helps him. He is still finishing his 6 bottles well, but they are going to keep him at that pace for a day or two longer before they try to change it around. They also will be increasing the calorie content and decreasing the volume, so maybe that will help as he won't have to take as much. They may have a bed at Palomar, so there is a very tiny chance we could still get moved since we still don't know how long it will be before he can come home.

Day by Day

Colt is still doing great on the 6 bottles, 2 tube feeds (his comfort zone). Tomorrow OT will come to feed at 9am, and then they have rounds at 10am to discuss a plan. So hopefully after rounds they will have some sort of plan, if possible. I keep asking everyday if I should be worried, because I am, and they keep saying this is normal for preemies. They said if he wasn't gaining weight or was spitting up- they would be worried. But he isn't spitting up and is gaining pretty steadily so that is good.

6 lbs. 12 oz. today!

No Change

Not much to say today.....he took all of the bottles he was offered in full (six of eight). Slept the day away as usual. No word on homecoming today as they are keeping it at six bottle feeds for a bit to let him rest some more. He's tipping the scales at 6 lbs. 11 oz.

Homeward Bound (?)

Colt was pretty sleepy today with his feeds, so they weren't able to pull the tube today. His doctor still thinks he'll go home this week, but I honestly don't know how that could be true if he isn't finishing his bottles. They put him back on the 6 bottles, 2 tube feeds for now to let him rest some more. He seems perfectly comfortable with that arrangement (a little too comfortable), he can finish the 6 perfectly but as soon as they add in the next two- he is pooped. They keep reassuring me that this is all very normal, as I am starting to get a little worried. But they say that the only way to know if he can do it, is to try....so that is what they keep doing.

We took in the car seat, and they have all his discharge paperwork ready/meds ordered/monitor ordered, etc. So they are "acting" like he's coming home soon. We will see! They order the monitor and get it approved from insurance so that if the breathing test says he needs one, then we have one ready for the next day to be trained on. I have mixed feelings about the monitor. On the one hand, I thought it sounds great to have so that maybe I will actually sleep as opposed to staring at him all night to see if he is breathing. On the other hand, I hear that they go off sometimes as a false alarm and that sounds horrible. A nice breathing alarm at 2am going off, and I somehow doubt I would have the ability to stay calm about it.

He also gained more weight, and is at 6 lbs. 9 oz. He has more than quadrupled his birth weight :)

Just For Fun

Here are some of my favorite pictures.....I take way too many to post so I thought I would throw a quick little slide show together just for fun!

The update is below on a separate post.

Make video montages at www.OneTrueMedia.com

Colt's Room

Colt had a good day today...as usual. The doctor told us today that they will be going to full feeds by bottle, and if he does well with that they can try removing the feeding tube tomorrow. We get to bring our car seat in tomorrow too. This is just to have it there for when they are ready to do the "Car Seat Challenge." They will do this first and then the overnight breathing test. They ordered up his meds, and I get to go back to see his old nurses at Children's Main Campus on Monday when I pick them up. Then they will teach us how to give the meds, even though I have already done it a few times. We'll get our formal discharge teaching sometime this week. He also got his first Synagis shot today. This is a shot that helps to protect from the RSV bug. It is a nasty little shot straight into the thigh muscle, and he really didn't appreciate it at all (luckily I did not have to see it). He'll get that shot every month during cold and flu season this year to help him have the antibodies to fight it if he catches it.

Colt got his own room today too. They have one private room in the nursery and they gave it to us....probably because they feel bad for telling us we can go home, and then making us stay :) So Colt and I got to rock out to the Beatles in the comfort of our own hospital room today. The private room is right by the exit door, so the new joke is at least we're closer to the door.

Moving up on the scale to 6 lbs. 7 oz. This is getting funny because I was seriously worried he wouldn't even be 5 lbs by the time he went home!

Colt's Due Date

Today was Colt's due date. Today we can officially start counting his age for what they call "adjusted age" for preemies. Preemies have two ages, one being their birth age and the other being their adjusted or corrected age. Their birthday doesn't matter in terms of milestones until they turn two years of age or if they catch up faster than that. They usually give preemies (especially boys, as boys mature slower than girls....sorry boys that is a fact) extra time to hit their milestones since they weren't quite ready to be here. So starting today, they count it like he was just born in terms of baby milestones. This is because it isn't fair to expect Colt, who is almost 4 months old, to be compared to a term baby who is 4 months old.

Colt had a good day today. The eye doctor came to see him, and she said he could not have looked any better (yeah!!!) and that she won't need to see him every week based on how well he is doing. She will see him again in two weeks, and they said hopefully it will be an outpatient appointment. They bumped his feeds up a little bit so that he is at 6 bottles and 2 tube feeds. He took all of them, but they will still inch forward slowly. It has become quite the joke in the new NICU about when we will go home. I have had a few nurses who haven't been on in a few days say to me "YOU"RE STILL HERE!!!" No kidding.

By the way....6 lbs. 4 oz. now.

Comparison

This is Kreg.....the earliest photo we could find of him!

Our little peanut......

And this is me!

Just for fun we thought we would post our baby pictures for a comparison. I've been told too many times, that he looks so much like Kreg and nothing like me! Colt had a pretty mellow day. They were just allowing him to rest and get the new acid reflux medicine going. He took the entire bottle at every other feed. He should be getting an eye exam later today or tomorrow.

A Lesson in Patience

Sleeping peacefully, what he does best.

This is Colt while gazing up at me today, not the best angle for the nose....but I thought it was a pretty cute picture.

It looks like I am meant to learn a lesson in patience. I talked with our doctor for awhile this morning about this whole feeding process and being frustrated with it. Here is what she told me: Preemies born at his gestational age almost never go home sooner than 42 weeks (he will be 40 weeks on Friday), and they mostly go home around the 45 week mark. This was the first I had heard of this, so it at least made me feel better that it isn't anything out of the norm. She also said he looks to be on track for going home in the next two weeks, which she believes to be ahead of the game. She said he is doing awesome, better than they would expect. And she reminded me what a miracle it is that he is here, and how well he has done. I seem to have forgotten somewhere along the way that the fact that he survived in itself is a miracle. Then add on top of that the fact that he hasn't had any major complications (this is what she said), because he dodged the heart and stomach issues that plague many preemies. I guess I have been blinded by wanting him home so badly, and how inconvenient the drive has been- that I forgot that he is

a) not supposed to be born yet, and b) extremely blessed with how well he has done thus far.

So while it is easy for me to think why did this happen to us, and why couldn't he have stayed in the belly longer, why did he have to go through this, and why is this still going on.........at the end of the day we are so lucky- actually blessed that we have him. I read a blog written by a woman who lost her son to the NICU recently, and she said she would give anything to make that horrible drive one more time, search for parking endlessly, walk all the way to the hospital from the lot, get in the elevator and trapse through the halls.....if she could just see her son one more time. A trip she thought she hated. That was a lesson in gratitude.

Hopefully that wasn't too heavy for you. On to the update. Colt is doing well. The doctors had rounds today where they decided that he needs to be on another form of anti-reflux medicine. OT saw him this morning, and lately he has been arching his back and grunting while being bottle fed. I noticed this too, but I thought he was trying to poop. But what that means is his acid reflux is acting up, which may account for his reluctance to take the bottle. The tube feeds dump the food straight into the stomach and bypasses the esophagus. But when it is the bottle, his esophagus flap has to do the work by regulating the food down and the acid. So the meds may control the acid in the esophagus, by creating a buffer for him. They put him back to feeds by bottle at every other feeding for one day to give the medicine a chance to work. We called to try again for a transfer now that we surely will be logging more hospital time...and they are still trying to get us a bedspace. We hope they do!

Poopin' Out Again

This is Colt with his signature "talk to the hand" pose, which he frequently does when he wants to be left alone. In this case he was ticked off at me for changing his pants.

Colt is doing well, although he had a sleepy night last night with his feeds. He was doing so great yesterday and then they pushed him to full feeds at night, and it sent him back to Golden Slumber Land. I have been assured that this is a normal feeding pattern for a preemie, that the back and forth is just the way it goes (fun stuff huh). He does great with the 6/8 feeds by bottle, but the 8/8 just doesn't seem to work for him. So we're back to just giving him a little break at every third feed. He took the whole bottle from me at noon, but it took him a long time to finish it. It seems strange me that we'd still be in the hospital over a bottle, after all of the medicinal needs he has has the last 3 1/2 months.......but as I look around at our new hospital, it seems that the only reason any of them are there is for feeds. Who knew!?!

The transfer to Palomar looks like that won't be happening. They have three women admitted who look like they'll all be delivering preterm, so they are reserving the space for these preemies to be. We're settling into our new home at Scripps, so we will just make do with the drive.

Here are some facts about premature births......because if you're anything like me, I knew nothing of this world until we walked into it. We get asked pretty often why this happened, and how it happened and so forth. At the end of the day the answer is....we don't know why God chose us- but he did!

Did you know......

• one out of eight babies are born prematurely
• 1400 babies are born prematurely everyday
• 40% of premature births are from unknown causes (as was mine)
• premature birth is the number one obstetric problem in the US

(info from march of dimes)

Until tomorrow.......

Fill Him Up

Colt had his bloodwork done this morning and they determined that they should go ahead and give him some blood before he goes home. His hematicrit was a little bit lower than last week, although he is making his own red blood cells. Because he is almost "term" he should outgrow that fairly soon, but for now they thought they would help him out with some blood. He finished all of his bottles again, so they are bumping him up to full feeds by bottle. If he successfully completes that for 24-36 hours, they will pull the tube again. Then if he successfully stays at full feeds for another 36 hours with the tube out, we can bring in the car seat for the challenge. He also will be having a 12 hour test overnight once they pull the tube. This test is an in-depth monitoring test that will show his breathing and heart rate during deep sleep. It will also determine if they want to send him home with a monitor. They want to make sure he is breathing normally and not "forgetting" to breathe at all. He is hooked up to monitors now, but these are more in-depth and can also tell what the problem is if there is one. One of our doctors said she didn't think he would have any problems since he hasn't had any episodes in a month. If everything goes spot on, we could be home this weekend. He's at 6 lbs. now. Colt's due date was this coming Friday the 25th......would be kind of funny if he came home that day :)

Rockin' Out

Here is Colt listening to his tunes....he loves his music. We're starting him early on the Beatles :) Lullaby versions that is! Colt is doing well today. He has chowed down on the bottles he was offered. He was wide awake today while I was there, and did not want to go back to sleep (I can't believe he is starting that already). He will get his bloodwork done tomorrow to see if they will give him blood or not. He seems to have perked up quite a bit from last week so maybe he won't need it. He also gained another ounce......5 lbs. 14 oz.

Swing

Colt's first ride in the baby swing! He loved it!

Just before bathtime...stretching out.

Colt did well today. He had finished all of his bottles (every other feed) for the last day and a half so they bumped him up to two out of three feeds by bottle a day. They will go slow at this pace so that they don't push him too hard again. He has been much more alert at bottle time in the last day so that is good. He also gained some more weight, and is now weighing in at 5 lbs. 13 oz. Almost to six!!

Truckin' Along

No open beds at Palomar yet so we're still at La Jolla. Colt did much better on the bottle today when I fed him, he was awake the whole time and finished it. He does take the full 30 minutes that he is allowed to finish. He is mostly taking the full bottle at each feed now but they won't push him just yet. He pulled his tube out again today, he is really getting good at that!

Trying to Transfer

Today we focused on trying to get Colt transferred to Palomar hospital in Escondido so we can shave off half of the drive. We got all of the approvals from the various channels, so now all we have to do is wait for a space to open up at Palomar and they will take him. That will be awesome if they can take us, as driving to La Jolla everyday is not that fun. For those of you who commute, how the heck do you do it? Colt had a good day. Not much to report. He is still on every other feed by bottle. OT fed him this morning, and of course he was sleepy as can be while she was there. But he took his full bottle the next time. He yanked his tube out again today (he did it two days ago). He's up to 5 1/2 lbs now.

I think I will keep blogging even after Colt comes home, as we won't be able to have everyone over to see him for awhile.

Bummer

Today was kind of a bummer. I talked to the doctor today to try and get some kind of an idea when we could go home given the new setback. The doctor who is on this week had a much different plan than the one we spoke with last week. The new story is that he will be there at least two more weeks, and she said.....are you ready for this........he could be there as long as another month (GASP). Needless to say, this took the wind out of my sails. Especially since we had one foot out the door. So I am going to try and see what we can do to get some consistency in our answers, or possibly try to get transferred somewhere closer if 2-4 weeks is realistic. La Jolla is super far. His eye exam went well today. He was very sleepy again. They decided to wait until Monday to do bloodwork, at which time they will decide based on his hematicrit whether or not to give him more blood. He is low on his hematicrit right now, which might explain the sleepiness, but she said she really wants to give him a chance to make some red blood cells on his own before they just step in and do it for him. Still on the every other feed by bottle. OT said he was pushed way too fast on the bottle, which can account for him pooping out.

On another note, I have had so many people ask me about this- I thought I would just post it on the blog since I finally got some answers. A few people wanted to know what it will be like when we do bring him home as far as normal life, visitors, etc. Since Colt's lungs were such an issue in the beginning- he has to be kept under close watch during RSV (viral) season. This season typically ends by May. The doctors have said Colt and I get to become hermits until RSV season is over, because it isn't worth the risk to get hospitalized with respiratory issues as they can be extremely serious in any infant- but even more so for him. We are basically allowed to go to the pediatrician and maybe an occasional walk for fresh air but otherwise need to stay home. As far as visitors go, he can't be around any children until May (with the exception of his sister, and they said even she has to be showered and in clean clothes before she sees him). We can have limited visitors, but no one can see him if they are sick or have been sick- and everybody gets to scrub up before they come near him. Sounds pretty crazy doesn't it?? But I guess it is a small price to pay for his health. We just have to make it out of this RSV season and we'll be in the clear.

Slowly but Surely

Slowly but surely.......we are starting back at every other feed by bottle. Sleepyhead just doesn't care to wake up and eat like he did a week ago. So OT said to start back to alternating the bottle. He took the whole thing once, and most of it the other time. They are just going to let him sleep and hopefully get some strength. I don't know if he is just having to work harder because he is off of the breathing treatment, or what- but he just doesn't have the energy yet to power the food down. I know most babies have that problem, but they won't let him out of there until he can prove he'll eat consistently. The eye doc once again was a no show, but supposedly will be there very early tomorrow morning.

Lazy Day

Colt was given a chance to be really lazy today so he could gain some strength for feeding. He was wide awake while we were there, and took the entire bottle. They are doing the two out of three feeds still and probably will for a few days. Occupational Therapy saw him this morning and will be back tomorrow to assess feeding. The eye doc did not come today, but they think will be there tomorrow. Not much to report, as he is just going to be hanging out for a little while longer eating and sleeping.

A Setback

So I spoke too soon about the plan to come home. Colt had a hard time with his feeds during the night, he was just too sleepy to finish any of them. The doctor decided to put the feeding tube back in for at least 24 hours to give him a break. They think they just pushed him too hard once he had started to get the hang of it. He was really sleepy today, so they went back to the two out of three feeds by mouth plan. He gets six bottles, and two tube feeds. This setback will push the coming home date back, so it looks like maybe early next week is the new target. We will just have to see how he does. He has an eye exam tomorrow to check post-surgery progress.

New Home Plan

I spoke with the doctor that will be on all week today, and she is thinking the discharge day will be Wednesday or Thursday depending on how Colt does. He has to continue to do well off of the breathing treatments, and the true test will be days 5-7 off of them (which is Monday through Wednesday). I think we will be doing the "Car Seat Challenge" on Tuesday. This is where we bring in the car seat, and Colt will get placed in it while hooked up to all of the monitors. They will make him stay in there for at least as long as it takes to drive home. This is because the tiny preemies have a tendency to flop their heads down and block their airway in that position so they test it out to make sure he'll pass. (And I, of course, will have to ride in the back with him on the drive too). He also has to keep up the bottle feeds. He did really well at the 9, 12, and 3 feedings...but the 6 feed was a little bit of a battle with snoozing off. So we will see how the next few days go!

No More Tubes!

We have been liberated from the feeding tube at last. Our nurse thought Colt was feeding so well, that she recommended that Colt go to full feeds and have the tube removed. He did really good on the bottle, although the last one I gave him was a sleepy feed. He had a head ultrasound today, and they didn't see anything on it. He also had a bath, which he seemed to enjoy. He likes the water a lot. He did have one little heart rate drop today, which was weird because he hasn't done that in awhile. It was during a feed, so the nurse said it wasn't anything to worry about. We also passed the 5 lb. mark......5 lbs. 1 oz.

Counting Down

Now that we've been told the end is near, it is like counting seconds. Colt did well again on the bottle. He took the entire bottle each time it was offered. He also is doing well off of his breathing treatments. Today was a pretty mellow day......he is just there to eat and sleep the day away! Tomorrow is bath time.

The Plan

We spoke with our new doctor today, and the plan is to try to get out of there next week sometime.....of course all depending on Colt. He took all four feeds yesterday by mouth in their entirety. So they will be increasing to 6 feeds out of 8 by mouth now. Once he does that, they go to all feeds by mouth to get the tube pulled. He has to do all feeds by mouth for 24 hours after the tube is out to go home. They also stopped his breathing treatments today. He needs to be off of them for 5-7 days from today. If he doesn't do well off of them, he may have to go home on them (which isn't that big of a deal). He also gained more weight and is at 4 lbs. 14 oz. Our fingers are crossed that he keeps chowing down his bottles, so we can bust out of there soon! We're SOOOOOOOOOOO ready!

Bittersweet Day

These are some of the faces of the wonderful people who have cared for Colt the past few months. Today was a very bittersweet day. We were moved to Scripps La Jolla this afternoon, as the NICU was finally so full that the non-sick babies had to leave. So three or four of us were booted out to various NICUs in San Diego. On the one hand, nice that he is well enough to not need that level of care. On the other hand, it was so incredibly hard to leave these people who have become like family to us. They have cared for Colt, and for us with the utmost sincerity. It was a sad departure for us! Colt on the other hand, slept the entire ride in the ambulance and barely even flinched during the transport. He did really well with the move, and is resting nicely in his new home in the Level 2 Nursery at Scripps. Their doctors will do rounds tomorrow for the new plan for Colt at this new place. Tentatively, he is being taken off of one of his breathing treatments with plans to wean off of the other. He'll be seen by the same Occupational Therapist he was being seen by at Rady as well as the same eye doc. He did REALLY good on the bottle today, powered through the whole thing three times- so hopefully that is a trend. That is the last accomplishment on the road to home, so hopefully we achieve it soon.

Good News

The eye surgeon came today and said that Colt's eyes responded really well to the laser, and looked terrific. She said she is pretty certain he will not need anymore eye surgeries. She will come back next week and check him again. They took out Colt's IV and he is back to full feedings again. He did well on the bottle at each of his feedings today. Occupational Therapy said as long as he takes 75% at each feed, they can increase the number of times they try to bottle feed per day. She also said once they are doing 75% at each feed, it is only a matter of a few days before they usually take it all. That means we should be getting closer to going home, as he is taking about half of his feeds by mouth now. He is 4 lbs. 9 oz. and 18 inches long now. He is back on the acid reflux medicine, so he isn't spitting up anymore. His tummy is starting to get back to normal, so they are chalking that little episode up to the introduction of some formula in his diet (most likely).

A Little Better

The tummy situation is a little bit better, but not fully. They did another x-ray this morning and it was slightly improved so they said they could start feeding him again. They fed him very little just to start and see how he does with it. He still is having a hard time with the bathroom functions, so they can't put too much in since nothing is coming out. They said he isn't acting sick, or like he is uncomfortable. He was pretty happy to have that food after being on an IV all day and night. The eye doc didn't show up today, so she she should come tomorrow.

Tummy Trouble

Colt was having some tummy troubles today. He's having a hard time with his number two functions, sorry if that is too much information. His stomach looked distended, so they ordered a stomach x-ray and it wasn't a very good x-ray. They decided to stop feeding him, and put him on an IV. They gave him a suppository to see if that would clear things up, and will repeat the x-ray in the morning. If it is cleared up, they can pull the IV and feed him again. But if it isn't then they will be concerned that it may be a larger issue. They are very cautious when it comes to intestinal issues because their digestive systems are so fragile as preemies. So we're hoping this is just a case of gas/constipation which could be from the iron supplements and/or formula that they started supplementing him with rather than something more serious. He also had quite a lot of spitting up today, and was showing signs of acid reflux again. They will probably put him back on the acid reflux medicine.