Friday, June 18, 2010

Day 81-85 (May 31-June 4)

DAY 81--

Martin and I were able to work with the Occupational Therapist today and on Martin's sucking skills. We used the pacifier and a syringe with 1ml of milk in it. Over the weekend, Martin seemed to develop an aversion to anything in his mouth and freaks out. I truly believe it was because of the nurse who I dislike, just shoving his paci in his mouth. She's been working for the past couple days. I think I'm going to request the charge nurse not ever put her in charge of martin again. i wish our primary nurses could have him every day.

We worked during two of his feedings, teaching him to re-like his paci, by inserting a few drops of milk into the corner of his mouth. This would cause him to suck on the paci. It was hard for him, but now the OT can write that we worked on oral skills, so the doctor doesn't think that he's not doing anything and give him a g-tube.

We tried breastfeeding one time, and the scale said he took -2. yes, negative 2. *sigh* we'll get this figured out someday. . .I hope.

DAY 82--

Martin and I worked with the paci again today. he's starting to like it again, which is nice! We tried breastfeeding, but it didn't go over very well. It's hard, he wants it, and he knows he wants it, but he panics as soon as it gets in his mouth.

The OT helped me, and we introduced a breast-shield. That was hard for me. I never thought I would struggle with feeding one of my children! but it is a huge struggle for both of us. He latched on with the shield, which was great! We decided it's because he can feel the firmness of it, he KNOWS it's there. Martin took 12mls, which is awesome.

He also had an echo-cardiogram. The doctors want to make sure his heart isn't working too hard, because of how hard it is for him to breathe. He was VERY well behaved, which amazed me. Martin is a temperamental fellow, and one never knows what will set him off.

And his current stats: 5lbs 13oz and 18" long!

DAY 83--

Martin's echo looked pretty good the doctors told me. The right ventricle is a little enlarged, but they're increasing his diuretics to a daily dose (instead of every other day) which will help that out.

We had 2 breastfeeding attempts. He took 8ml at the 1st, and 6ml at the second. He's getting it, and now we have to work to become more efficient.

DAY 84--

I was there at the hospital nice and early this morning, and was able to nurse Martin at 9am for his first feeding during that shift. He took 6mls, which isn't too bad. About normal for him now!

And then the day went completely downhill. I went and got some lunch around 11am, and come back to find his oxygen needs completely skyrocketed in the 30 minutes I was gone. They had to increase him to 3L and he was sitting at 65%, which is way high. I wanted to cry. It seems like everytime we start breastfeeding, something happens and we have to stop. This is the third time now. It's like we're not supposed to breastfeed. And that's not something I want to accept.

They took an xray of his lungs, just to make sure everything was ok, and they decreased his feedings to 40mls. They also had to increase his sodium and chloride since his levels were low when they tested them.

The xray showed a lot of air in his bowel, which he'll eventually pass, but it's just hard on him I think.

But the worst part of the day was on the drive home when I get a call from the NNP. They don't usually call when something good happens. And I was right. Becky (the awesome NNP who knows Martin so well!) called to tell me that they had to put him back on the CPAP. He hasn't been on CPAP since the second day he was born. and now, looking back, I don't even think he was on it. i think he went straight to the cannula.

It's a huge step backwards, and yes, I cried about it.

DAY 85--

Here's Martin on CPAP. Rachel, the March of Dimes lady, describes cpap as have a jet engine blow air up through your nose, into your lungs. It helps keep your lungs inflated, but doesn't breathe for you like the ventilator does. He's on 7L at around 40%. It's so hard to see him like this, but he's much more comfortable. It's such a large setback, but he needs it so much.

He was awake for THREE hours straight today. It was amazing. Allison (one of his primary nurses) couldn't believe that he just stayed awake, staring at me while I held and talked to him. He's never done that!

Sara, one of the OT's, called him a drama king, trying to get more attention, since being the cutest boy in there wasn't enough for him. :)

The Doctors are deciding, once again, what type of tests to run on him. This kid is a mystery. Every test they have EVER ran on him comes back normal. They don't even know what to do anymore, all they know is that he just CAN'T breathe right. They're talking about taking a sample from his lung tissue, to see if that can give them any results.

It would be nice to just have something to hold on to, and say "Ok, this is what's wrong. Here's how we can make it better." Here's hoping something happens, or Martin just might be the first toddler in the NICU.

Monday, June 14, 2010

Days 76-80 (May 26-30)

DAY 76--

Those eyes. . .I can't get over how BIG they are!! And if you could see Martin's eyelashes. Nurses keep flirting with him because he has such long eyelashes. That's probably why he thinks he doesn't have to come home yet, he wants all this attention!!

Today he's on 2L of O2. He's getting lower! Hopefully we can start breast-feeding again. The more I can feed him, the less I worry about the calories fortifying the milk causing problems again. While I was holding him today, he got a little squirmy and then puked all over me. It was right after he was given his multivitamin. I guess he didn't care much for it!

And he is really starting to love his paci. It's good for him to have it because it helps develop his sucking skills. preemies don't really have any sucking skills, so unlike term babies that use a paci and it being detrimental to their breast-feeding capabilities, when preemies use a paci it helps them build up the strength they need to be awesome.

DAY 77--

Martin is still on the 2L today, and he is not a happy camper. I think he is affected by the nurse. I don't like the nurse he had today. We don't have her very often, and it's been a long time. But since he was moved to this new room we have her again. She's just not as kind and gentle as some of (most of) the other nurses are. When he's upset, she just says "oh, stop crying" and puts the paci in his mouth. Doesn't help him root for it, just sticks it in there. Poor kid. I can't wait until he's home and I can do things the way I think they should be done.

DAY 78--
I love how Martin is looking at me like "What do you think you're doing. . . ." so great! Today was a bittersweet day. It's May 28th, and my due date. I was desperately hoping to be home with Martin by today. And we're not even close. He's 11 weeks old.

They were able to wean him down to 1 1/2L on the high flow O2, which is awesome! And his feeding tube was moved from his mouth to his nose! Woohoo!! They gave me the go-ahead to start breastfeeding again. If we can get him to take all his feedings by mouth, the Doctor is willing to send him home on 1 1/2L O2. Oh, I hope he can get that soon!! I'm ready for my boy to be home!

He was moved back into a crib, which is great. We were able to breast-feed and he took 10mls! That was about normal for him before he got sick. The next time i tried he was WAY too tired to do anything. Complete limp noodle.

Martin also now weighs 5lbs 8oz. He's getting there!

DAY 79--
Martin is back up to 2L high flow. It's amazing how such a little thing causes such distress to me. It's just one more thing to set us back.

The Doctor brought up the concept of a gastronomy tube if Martin won't breastfeed. He thinks because Martin is now past his due date, and not eating a lot by mouth he needs the tube in his belly. It's a surgical procedure, and then I can just feed him however I want. I didn't understand what he was really talking about.

About 1/2 an hour later is when it really hit me what it meant. I DO NOT WANT A G-TUBE. I haven't even been given a CHANCE to work on breastfeeding with Martin!! We get to nurse about 4-5 days, 2-3 times each day (if we're lucky) and then he would get sick. I have nursed less than 2 weeks, and they're discussing opening his stomach and sticking a tube in. Other babies have had WEEKS to work on their breastfeeding skills before the subject is even brought up. I feel completely worthless as a parent. it's frustrating that I can't even feed my baby.

Martin also wouldn't even breastfeed today, which made it even harder to deal with it all. I will do whatever it takes to make sure he doesn't come home with a G-tube.

DAY 80--

This is Martin's new toy, and he LOVES it. It calms him so well. he just stares at the light, and listens to the music. It's wonderful. And we're going to have to invest in one of these!

Martin wouldn't breastfeed again today. It's so hard for me, to not be able to feed him. But I came to the realization, that I will do whatever takes to breastfeed him. If he learns before he comes home, or if he learns in 6 months. We will get it figured out.

I was able to talk to the NNP about his oxygen and how to travel with oxygen. It's going to be a LOT of work, and we don't know how the company works yet, or if it will be possible. We have a family reunion across the country, and we're flying out there. We have out tickets already, and now Martin and I will probably have to stay home. It is possible, but we just don't know how it will work out yet. The company usually meets you at the airport, and gives you oxygen for the flight, and then the company meets you at the end of the flight and gives you more oxygen.

Yeah, it sounds like a lot of work, and could be rather difficult. So we'll see.

I also talked with the NNP about the g-tube, and how I haven't even been given the chance to try bottles with Martin, and we've hardly been able to breastfeed. So she's now on the same page, and understands that I will do whatever it takes to avoid a g-tube.

Thursday, June 10, 2010

Day 71-75 (May 21-25)

DAY 71--

The first time Martin was transported from the NICU to Primary's, I was too tramatized to take any pictures. It was VERY difficult for me. This time, it wasn't too bad. The pumped contrast fluid down the tube in his mouth, filled his stomach with it, and pumped it down into his intestines. The entire time they were taking xrays and watching to make sure everything looked good. They were able to get it all the way into his colon!!

Everything looked good, nothing obstructing, and no holes. Once again, Martin has proved a mystery. They can't find a reason why his stomach gets distended and he has problems.

He did great during everything. Much better than last time. The restarted his feeds today, at 17 ML, which he was thrilled to have! and he's on 2L high flow O2. He gets stressed out in these situations and his O2 level always goes up.

DAY 72--
They were back up to full feeds today! The moved FAST this time. And he was able to get his IV out since they've stopped everything.

He did end up on 3L high flow O2, which I was afraid would happen. It becomes a cycle: his O2 goes down, we're able to breastfeed for a few days, he gets some sort of problem so they stop his feeds, his O2 goes too high and he can't breastfeed. Then we work on getting it back down so he can feed and something else comes up. It's hard, and stupid rollercoaster.

DAY 73--

Good grief, they started so many things on Martin today! They decided to start the diuretics again, because they seemed to help his lungs previously. His O2 level has been at 3L on the high flow, and the percentage is higher than normal. In case I haven't explained it before, the percentage is how much O2 is coming through the nasal cannula. He's usually around 40%. That means, he's getting 60% of his oxygen from the room air that all of us breathe, and 40% of a mix of room air and oxygen.

The NNP thinks he's working to hard to breathe. He retracts when he breathes and you can clearly see it pulling between his ribs. I don't know if he's working hard or not. Although I hold him every day, I'm not trained to notice things like that. It seems normal to me.

The also increased his sodium. . .again. And they started a multivitamin. They're keeping the feeding tube in his mouth to help vent his tummy. Because air is being forced into him, some of it is bound to get into his stomach. Since he basically just lays there (unless I'm there holding him) the air in his stomach can cause reflux and such.

Tomorrow they plan to check his thyroid levels and his iron. The doctors think that perhaps he's having problems metabolizing everything. It would be nice to know what's going on, and have something we can hold on to, and fix.

DAY 74--
Holy snow in MAY!!! I almost didn't make it to the hospital today because there was about 1/2 foot of snow outside and my car does NOT do good in the snow. We did Survivor Beads today, and Rachel (the march of dimes rep) gave us a snowflake bead because of all the snow outside.

THey turned Martin's oxygen down to 2 1/2L. It's a test run, to see how he does. If he stays below 45% then they'll keep him there, if he gets above that, he'll be turned back to 3L.

I was able to do some skin-to-skin with him today, which is nice. It's harder to do it now, because he's usually dressed and he's such a sensitive baby. Every little thing makes him upset. But since they want to watch his breathing to make sure he's not working too hard, he's naked.

DAY 75--
They put me on the dairy-free diet today. I had to do this same thing with Katryn so luckily I already know what to look for, and where to shop. Although I felt like an idiot when they suggested it to me. I don't know what I didn't think of that!! When Martin had problems with the first supplement and they suggested dairy, it made perfect sense to me, since Katryn had problems with dairy. But I didn't even think to cut it out of my diet then!! ARG!!

Oh well, live and learn. Hopefully this works out for him.

He's also learning out to pull his OG (oral gavage--the feeding tube) out of his mouth. He uses his tongue to move it a little bit, then he can get his fingers around it in his mouth and just pulls it out!! Tricky boy.

They also started the calories again. He's been on plain breastmilk for a few days, which is 20calories. Now they're upping it to 22cal. Hopefully this doesn't effect him. I'm a little nervous about everything they do. It will be so nice to have him home and just breastfeed him!

Wednesday, June 9, 2010

Day 66-70 (May 16-20)

DAY 66--

Martin is still on the low flow and he's doing really good on it. They stopped the steroid, which is great. They think it had a positive effect on him, since he was able to wean down to the low flow O2.

He gained some weight, but I don't remember how much. He's just been losing lately because of the diuretics that I was just happy to hear that he gained! I was able to try to breastfeed him twice, but the scale said he didn't take anything.

DAY 67--
When I came in this morning, the nurse told me how Martin has been having diarrhea. Because of that, they stopped the extra calories they have been putting in his milk. I was so worried that something would happen with the increase of calories. I was only able to try breastfeeding once, that's all the nurse would let me. He did take 8ML though, which was better than the day before!

They did one of their standard blood draws to check his electrolytes. Depending on the levels of everything, they give him medications to help the levels. Like sodium. He's had low levels of sodium pretty much his whole life and they have been giving him sodium to help increase the levels to the 'normal' range.

Uncle Glenn and Aunt Natalie came by for a visit as well. Natalie loves to come visit, because she's an LPN and dreams of working with babies. ;) and she can explain things to me in terms I understand! since only one other person can be there at a time (besides me or matt) Nat came in for probably 2 hours, while Glenn slept in the waiting room. Then he came in for about 2 minutes, commented about how tiny Martin is (although he seems huge to me!) and that was it. Boys are funny that way.

DAY 68--
You know it's not going to be a good day, when the hospital's phone number shows up on the phone. I got a call at 6:30am today, from the NNP on duty. Martin's tummy is distended again. It's like a deja vu of last time. Start an IV, stick an Anderson tube into his belly to help get air out, and make him NPO.

It's so hard to have to go through this again. He still has the diarrhea from yesterday, and the nurse had to give him a catheter because he wasn't producing enough urine. She was so understanding though, and close the curtains around us while I held him. And then I had one of the many breakdowns I had today.

The nurse had to move his IV, which is good and bad. The IV started in his head, and she moved it to his hand. It's always hard to see an IV in his head, and I hate how I'm not shocked to see in there anymore.

Martin is also back on the high flow. Things like this are just hard on his little system. Shoot, they're hard on me!! I can't imagine being the one actually having to go through it all.

They decided to do a spinal tap. I completely lost it then. They wanted to test the spinal fluid for meningitis. I don't think I would have made it through today if it wasn't for Becky--the Parent-to-Parent rep and the nurse. They were very kind and understanding. It's hard to watch someone so tiny go through something so hard. Actually, they wouldn't allow me to watch the tap, not that I wanted to. I just wanted to snuggle with him and make him healthy.

DAY 69--
They took a few GI xrays today to see if they could see anything, like a blockage or something. The NNP said that the first one looked bad, so they were consulting with some surgeons to see what they though. They want to put another picc line in. As the nurse was examining him, she mentioned that the other nurse who put it in didn't want to take it out because it took her over 3 hours to put it in!! I couldn't believe it. My poor boy had to go through 3 hours worth of someone sticking a needle into the side of his neck.

They took another xray later in the afternoon and said it looked better than the first one. Hopefully this doesn't last as long as the last time he got sick. he was NPO for 10 days with that one! in two days they have him scheduled for a GI tract xray with the barium. That will check his stomach and intestines. He's already had a lower GI xray, and now he gets the upper GI. Hopefully since they'll have now seen the ENTIRE GI tract they can figure out how to help him, and what's causing everything.

DAY 70--
We're still playing the waiting game on Martin. We went up late today and went to the CPR/Discharge class. Now when Martin is ready to come home we'll be ready on our end!!

You can see how much he's grown in the past 2 months. I swear, he looks twice his size! But still tiny with dad's hands on him.

The doctors decided to cancel the picc line, so they're just moving the IV as needed, and they stopped the antibiotics. Right now he's getting fluids and fat so he doesn't lose a lot of weight. Not that he HAS a lot to lose.

This is Martin in the warmer bed, as I'm getting ready to change him. Matt thought there needed to be some more pictures of me with him, so he took this one. :)

Thursday, June 3, 2010

Day 61-65

DAY 61--

We started Martin's vaccinations today. That was a hard choice for us, we had wanted to wait until he was older, and even more so after he was born premature. But in the end, with the condition of his lungs, the benefits outweighed the risks.

I also got a chance to breastfeed Martin today. Still the non-nutritive, but hopefully we can get to the real stuff soon!

DAY 62--

Martin is TWO months old today!! And he got a new crib toy. Actually, it's not new, but they think he's old enough to be entertained by it, especially since he's now awake for longer periods of time. He got he second vax today. That was the compromise I made with the doctors. Only one vax a day.

We had an actual breastfeeding session, and he took 7 1/2 ML!! I'm so proud of our little boy!! He's such a hard worker. He has so much to do, and he's so small. He has to work so hard to breathe, and suck, and swallow. It's very hard.

They were able to wean him down to 2 1/2 L O2, so he's slowly getting better with his oxygen. And he weighs 2260 grams, which is the equivalent of: 4.982373lbs. :) he's gained 2lbs since birth!!

DAY 63--

Martin got his 3rd and final vax today, and he tolerated them all very well. Which is good. That's one of the reasons they spaced them out (as much as the doctors would let us) was to make sure he didn't have any adverse reactions to them.

He was able to take 7.4ML when I fed him today. I can finally see the light at the end of this tunnel!! it's wonderful!! He's on 2 L O2, and doing quite well with that. The doctors also started him on a second diuretic, since it seems to be helping his lungs out. As long as SOMETHING works. The poor kid's lungs just need to be healed.

DAY 64--

I love those big eyes. They remind me so much of Katryn's eyes. And his eye lashes are long as well. Martin is still on 2L of O2, which is pretty good. Still has a ways to go, but he's getting there.

We had 2 breast-feeding attempts, and they taught me how to use the breast-feeding scale. it's a very sensitive scale, and can calculate how many ML's the baby takes through a before and after weight. At the first one he took 8MLs, and the second one he took 12!! it's awesome!! that's about 25% of a feeding!! The increased his calories with the fortifier. That really freaks me out, so I would LOVE to be able to have Martin get all his food from me, just in case he reacts to this as well.

DAY 65--

Martin is on 1L of O2!! AND it's the low flow. No more fat tube for us!! The nurse said that when he was awake for a while she put him in a swing and he seemed to like that. My boy is getting so big!

He lost some weight from the diuretics. He was so close to 5lbs!! and now he's about 4lbs 10oz. And I was able to breastfeed again. he took 8ML, which is still good. He's pretty consistent with the amount he's taking, which is good.

They increased his calorie intake from 26 to 30!! I'm freaking out a little bit about that, and I'm worried he's going to have a problem again. He's so sensitive.

While I was there today, Martin's oxygen level dropped too low, he was unhappy about something, and the nurse had to do a 'blow-by'. That was frightening. They basically have to put an oxygen bag over him that has air just blowing out of it, to help him get some air back in lungs as he recovers from his 'episode'. But he recovered, it just took a lot longer than they like.