Patrick, What are you doing right now? Brady, What is in your hair?

Hello to all. Well tonight was an up and down kind of night. Let's start with Patrick. Notice how I always start with the most critical one first? Well, he is not critical, but I noticed that a while back. I don't know why I'm blabbering. Okay let's begin.

Patrick
Oh Patrick, how you like to make mommy and daddy lose sleep. We walk in today to see Patrick at 29% oxygen. Okay, we'll take that. His primary said that he was on like 26% all night. I'll take that too. So, we start up, do our hands on. His temp was good, he was nice and warm. His diaper was 1 out of 2 messes, not bad. Then all of a sudden, his spo2 on his monitor is at 96, 80, 76, 69, 50. Patrick! Hey buddy, what are you doing? The nurse is like, buddy, what's up. Another nurse comes over and says okay let's check his prongs here, check his mask. I spoke up and said sometimes he has to be suctioned. Like once a day they take a little bottle of saline and flush one side of the nose while sucking it out the other. Sometimes they just have enough boogers in the back that it blocks their O2 intake. So, they resp. therapist was working on another baby, and they said hey, could you come over and check him out? So, he did, he suctions, and flushes, and puts his 02 up high, like in the 70's. Oh crap. I know that one day his retinas are going to blow out of his little eye. Then he slowly goes down to 60's, then 40's,, then 30's, then 20's, all the while Patrick is "sating" at like 90 something. I don't know what happened, but he fixed it, for the time being. Oh Patrick, no sleep for the parental units tonight. We talked to his doctor tonight again to ask about the platelets. She said that she is not sure if the IVIG will work because she thinks it is more prematurity of everything like the other doctors said. She said that they do very well with the bone marrow if he needs to have it done. They sedate and give meds, and he won't have to be intubated. He has labs on Sunday night, so we will know if he has more platelets on Monday morning. Keeping our fingers crossed. His weight went up to 1600 grams tonight. We were very surprised, but did it three times to make sure. He is gaining like his brother. He is doing well on his feed still. His primary is back the next two nights, yea!

                                                                       Love my pacifier!

                                                                               Getting a little help.

                                                                                          Little Monkey.

                                                                                         Looking for milk.

Brady
Haha. What can we say about Brady? Brady is doing well on his feeds. He is up to 35 ml of food in his bottle. He finished all of it.  I walked into the back to find Craig and Brady's primary laughing, and they are trying to get him to poop. If you don't want to see this poop, skip this video.

He did it, and as always, it was stinky. Afterwards Craig sits down and feeds him. After he finished his bottle, Craig's says "Do you want to hold him?" As always, my answer is yes. Like always, Brady's poops in my arms. I start hearing the usual noises. The resp. Therapist laughs because I called him stinky. Then hears him rip one during his resp. treatment, so he starts laughing. OMG, we have the stinky kid in the pod. If you were to draw a picture of Brady, you would have to draw the stink lines on him, haha. Anyway, so I get up and we said okay, let's clean your diaper, and then we will leave. I take his diaper off and start cleaning. I then see a drop of pee. I wipe it. I looked away for a millisecond and turn back, and there is a full stream shooting at us in the air. I yell Babe! (As I see Craig staring and not reacting, as I cover it with a wipe.) I then look down at Brady, and said "Brady, what is in your hair?" Craig said what? I said "One side of his head is all wet, he peed in his hair!" Lolol. I don't know how he did it, because nothing else around his was wet! The blanket, his outfit, the rest of his head...dry. Needless to say Mr. Brady got another bath. That is his third one in three days! What a silly boy! He lost a few ounces tonight, which is to be expected with all the work he does with the feedings. He only managed to get down 15 mls of food during the day. He was on room air when we left.

                                                                                This means I'm hungry!

                                                                             I could just kiss that little belly all day!

                                                                                 Yum, sweet dinner!

I just wanted to take a second and thank everyone for the continues support. If you all keep reading, I will keep writing!
Love to all!
Em, Craig, and the milky twins!

Where are those silly platelets? Where is my bottle?

Hidey Ho there neighbors, how are you? We are okay today. Well, we heard from the eye doctor today. Good news and bad I guess.  The good news is that they don't need the shot this week. The bad news is that he said the eyes are a little worse, but not bad enough to take action yet. We'll take that, that's okay. We are going to try to meet him this week, and see what he has to say about everything. I knew they would be worse because they have been on high oxygen this week. Speaking of high oxygen....

Patrick
Brady's nurse came in today to find Patrick on 70% oxygen, and she almost freaked out. 70 percent! Are you effing with me right now?! So, of course, his nurse came in shortly after and said what is going on here, and who did this?! She turned him down immediately, and got him back on track. We said, ummm, what the hell happened? She said that the Resp. therapist said that he had a rough night last night, and that he was on high oxygen through out the night.  They think what might have happened is that some other nurses kept hearing his monitor go off, and to make it stop they turned up his oxygen. I have never been mad before, but today that pissed me off. I mean come on, if you are turning up a baby past like 45-50, stop, take a second, and assume something is not right, and let's take a moment to check out the situation. Thank all that is holy that the primary nurses are back this week, because I would not have slept tonight, not from worry, but from anger. We did our hands on time, and he was on about 34% during it.  He did well for hands on. When we left, his primary had him down to 26, and he was sleeping comfortably. Amazing. The doctor had a chance to talk to us tonight. Hes said that his platelets went down again! There were in the 50's. Geez Patrick. He said if they get lower than the 40's they will give platelets. He said the IVIG they are giving can take a few days to work. They were giving him a second dose while we were there. I am praying it works, because I can't tell you how much I don't want him to go through a bone marrow aspirate. No one needs a needle jabbed in their femur, no one.  He seemed to be doing better with his primary back. I swear he knows her and knows that he is okay. He was up to 1540 grams tonight, which I think is like 3 lbs 4 oz.

                                                                              Cath back in :(

                                                                                  Getting sooo big!

                                                                              Daddy's little buddy!

                                                                             So happy my primary is back!

Brady
Well, by the time we got to Brady, he was hungry! I was only 10 minutes late, but his little tongue was going, and he was getting fussy. He took a whole bottle again. He fell asleep a few times in between, but he managed to get it. At one point at the end, he choked a little up. I think he kept sucking, but he fell asleep, and didn't swallow.  Let's hope he didn't aspirate any. Brady's primary was back to work tonight, but they stuck her on a different floor. Not cool. She did come up to visit for a minute or two just to say hello. He basically slept through his whole bottle, but when she was there, he was wide awake! He got a little bath last night, and he looked all clean tonight. He is doing well with his "nippling" as they call it. He had a small nipple on his bottle the first day, but the last two days, he had a regular nipple, and he did well. They are putting him on bottles twice daily, because he is doing well. he lost a little weight. I think he was 10 grams lower, but the nurse said that he looked less swollen. they always give them them something to help with swelling after they give blood.

                                                                             Belly full of milk

                                                                           Look how big that pacifier is!

                                                                           Brady burrito

Have a great day everyone!
Love the Connor's

Blood and Platelet fixers

Evening all. How are you all doing? I hope all is well. Tonight was a nice visit. The boys seemed to be in a good mood tonight.

Patrick
Patrick was doing okay today. He seemed to be in a more settled down tonight. They started him on IVIG, so they had to place a cath. We use this drug on animals sometimes, but not enough where I know a lot about it. The doctor basically summed it up by saying, this is going to go to where the platelets are and attack the antibodies that are holding them hostage. He said that if this works they will have a better idea on why he keeps having low platelets. They gave him two doses tonight, and will be rechecking his platelet count in the morning. Hopefully we will have good results. We also should be getting a call from the eye doctor. We never heard from him this week. The boys have been on high oxygen all week, so I expect their eyes to be worse. His primary was supposed to be there tonight, but she called out. You bet your ass I sent her a text message and gave her a guilt trip about it. He was in His an incubator when we got there because his temp was a little low. I sent her a message that said "See what happens when you aren't here, he goes backwards!" She knows I'm just messing with her. She is great , we can't wait to see her again. Anyway, his oxygen was at 39 or so when we got here. One of Brady's primary nurses was in charge tonight, so she kept  an eye on him. She had him down to like 35 during her rounds with everyone. Once she put him on his stomach he was like down to 29. Awesome. I am so glad that she was there to watch him. he is up to 29 ml of food, and he did well with it tonight. He was 1530 tonight I think. At first she said he was 1500, but then said another number, so we think he gained. They did try to place him on a nasal cannula, but it only lasted about two hours, and he was back to the prongs and CPAP mask. Oh well, it was worth a try right. he is just not ready for it.

                                                                           He loved his paci tonight!

                                                                            Finally on low oxygen on his belly.

                                                                                  So cute in his dinosaur outfit.

                                               Look who's hair is growing in finally!

 

Brady

Brady is doing okay today. They called us early this morning and said that one of his numbers was low, and that he needed blood. We said okay. He was nice and pink when we got there tonight. I guess he was a little moody today.  The nurse said he ripped out his catheter. She said he was covered in blood and made a mess of himself. She was going to give him another bath, but his temp was a little low. He managed to finish a whole bottle again. We kept the one from last night as a souvenir. They said that is really good, and that he is doing well. Besides that, he seems to be stable and hanging in there. His oxygen was at an okay rate, low 30's. We will see if his eyes are any worse tomorrow.

                                                                                 Hi everyone!

                                                                                   Dinner time with mommy.

                                                                                   The bib is bigger than him!

                                                                                       In tight for the night!

 

Wish us luck with the eye doctor! I have a feeling they are going to need the shot sooner than later.

 

Em, Craig and the boys.

Lots of stuff to share tonight!

Hi all. I have no time for talk because I have so much to share tonight, and it is already 130am. Let's get started!

Patrick
Patrick, Patrick, Patrick, sigh...why are you so angry? When I called today they said that Patrick was having a rough day. We didn't realize until late last night that today was Ret Cam day. That is never fun for anyone. Patrick HATED his camera session today! She said that he had one or two episodes where he "dsated" and his heart rate went down. They had to turn his oxygen up. They said that the Hematology doctor came down and checked him out also. They said his eyes were a little swollen from the eye exam.  Basically he was having an all around crapola day. When we got to the NICU, we saw this...

Aggghhhh!!! Are you kidding me?! Way to go Little man! A crib?! I did not expect this. I guess they did it last night after we left, and they didn't mention it on the phone today. What sucks is that they have to be a certain temp to be in a crib. He was slightly low, well, right on the low end, so he might have to go back in a incubator tonight. I know, right? She was going to weigh him, and then check his temp again at 12 am I believe. I should call, but again, so much to type, and I have a funny story coming up. Anyway we spoke to the doctor about some things tonight. He said that he spoke with the hematology doctor today. They were just about to call us to get permission for a bone marrow aspirate when they said let's wait. The hematologists thinks that the reason that his platelets are low is because they might be bunching up somewhere, like the spleen or liver, because that is what they do when an infection is present. Basically, he thinks this is all stemming from his stomach infection. He said they can do an aspirate, or do a spinal tap, but why upset him when he is eating, and acting normally at this time? I say that as I knock on wood, and I suggest you all knock on something right now as you read this. I beg you, knock on some wood folks.  They said that the liver and the spleen took a little "hit" from the TPN, but that is bound to happen, and that they should recover. It might just take a little time for him to fix himself. So, we are taking that as good news. It might just be a premature issue, and his body just still recovering from the infection. Let's not forget, he literally had poop floating around in his abdomen. It's wasn't great kids. We also asked about his new CPAP. He was at 39% oxygen tonight, yeesh. I asked if we should be concerned with the fact that he was so high up. We also expressed our concern about the mask itself, and how we didn't think that it gets a good seal, and how we think his O2 is high because of this. The doctor said that we would check him out in the morning, and maybe consider putting him on a nasal cannula. He said that the cannula has some pressure on it, and if his numbers are the same then  they can leave him on that, if not, they can switch him back. That made us nervous, but if it will help his eyes, and his oxygen is lower, so be it. It might help him. So overall, he looked a little bit less annoyed, which was good.

                                                                      Hi all! Look at me in a big boy crib!

                                                                               I'm getting there everyone!

 

Brady

Let's talk about Brady. I am going to call this section "The Tale of Brady's Poop-capades." I forgot to tell you all yesterday what happened. His nurse on Sunday night was doing his hands on treatments. She went to go change his diaper. I don't think I have told people this before...when Brady poops, Brady poops! He poops with pressure behind it, and when it is on the way out you better look out. I guess when he started to poop, she lifted him a little bit to check his diaper.  Bad idea my friend, because when you lift hi butt, you just make it into a cannon. you know what happens when you aim a cannon? You get poop on your face! Bahahahhahahah! Brady managed to somehow projectile poop, and hit his nurse on her cheek. We laughed so hard, but felt so bad, because we like this nurse! Tonight, Brady took his whole bottle for his daddy! A big 30 mls, all in his belly! Not bad at all for only his third feeding!

After he ate, I held him just to hang out. I looked and his nurse, and she said"Did he just fart?" Oh god, I said, it is coming! We all laughed. As I sat and held him, I prayed that it was just gas, but I could literally feel it hitting the diaper. I went to change him, and of course he pees a stream into the air, and all over everything, except his diaper! Oh motherhood. Guess who earned himself a bath tonight?

                                                                               Bath time for Brady!

                                                                                   Rub a dub dub!

Besides for the bath, guess what else? Brady hit the big 4 pounds today! This kid is growing like a weed!

 

Alright kids

Have a great night!

Em, Craig, and the little men

I would like to say it was a good feeding night..but sometimes we do silly things.

Good evening all.  How goes it? I hope all is well. More importantly, how is everyone after Isaac? I have to say, I didn't like driving in it last night. I thought it would be over this morning, but no sir! It was really bad this morning. I could hear the wind whipping around, and the pool almost overflowed. I could hear frogs screaming, and unfortunately, there were 4 that didn't make it. We found them in the pool today. I looked out the window, and could barely see anything through the rain and wind. I hope you all were safe, and didn't have any damage.  So, moving on, we had a good night, with a little hiccup.  Brady likes to scare me sometimes while I hold him.  I think his leads were off, and were moving around, because his heart rate dropped to 60, then 50, then 0. WTF Brady? I looked at Craig and said the monitor is at 0, get the nurse. Was I panicked, yes and no. Yes, because I hate when he does that, even if you know the monitor is wrong, it is still scary. No, because he was moving, and clearly breathing, so it was a, I'm freaking, but not freaking, but just for shits and giggles get the nurse moment. The monitor never went to red, and didn't alarm. A millisecond later the monitor was back to normal. Then a second later, it did it again. Of course the nurse had just went to take a quick break, and we said that we would be fine without her, there were other nurses around. Famous last words. Ugh, why do you mess with my emotions like this? After that, we checked his leads, and moved some things around, and it seemed to be okay. We left shortly after that little escapade.

Patrick
Patrick is doing okay tonight. He did very well with his feeds while in his bed. We didn't hold him tonight because he seemed to be comfortable in his bed. He is getting 28 mls of food. He was nice and calm tonight till his nurse cleaned his face. All of his pictures tonight are him with an angry face, haha. When I called today, they said that his blood work came back, and his platelets were low. They like the platelets to be above 100. His were 68. This is a constant battle with him  and we don't know why. The echo came back last week and it was negative for clots. They said that was really good.  They also mentioned today that they did an ultrasound of his spleen and his aorta. They preliminary results came back as good. They did not see any clots I believe. This is all good. We are waiting for a final report. They also called for a hematology consult. They said that they could have some better ideas on what could be wrong with his blood, and why it might not be producing platelets. The next step after that could be a bone marrow aspirate.Ouch. They said that he would get sedation and something for pain. Geez, If it's not one thing it's another. He was the same weight as last night, 3lbs and 4 ounces, and he pooped a ton for me!

                                                                            Wide awake after my food.

                                                                             In my jammies!

                                    I don't like my face wiped sometimes!

 

Brady

Brady was doing well until that little episode mentioned earlier. He had one little episode during his feedings where his saturation went down. During this episode, he was taking his bottle really well, he just forgot to breath.  He took 15 ml of food tonight, and had to get the rest in the tube again.  They said that he is doing well with it though. He was the same weight as last night again, 3 lbs and 14 ounces. I can't believe he is almost going to be 4 pounds already. The resp. therapist can't believe it. The nurse now have a bet to see who is going to go home first. Two of them think Patrick, and two think Brady. I hope they are both right, only they go home together!

                                                                          Sleeping so nicely.

                                                                          I have a headache this big...

                                                                              So tired after my feeding.

 

Alright all, have a great night. Hopefully we will get some news from the hematology in the next few days.

Em, Craig and the boys!

We are progressing on both sides!

Good evening, or good morning. I am posting early tonight. First, let me start off by asking how you are doing in the storm right now? If you are reading this in the morning,  how did you do in the storm last night? We drove in it to the hospital. It was somewhat scary. I wasn't a fan. Hopefully it will be better tomorrow. We probably should have stayed home. The NICU as eerily quiet tonight.  When we got there though, we were happy to see that one of the nurses we like had Brady. If you didn't see my face book post earlier, you didn't see the big news. Brady was moved to progressive today. It is a happy time, but a sad time.  I am so excited that he is doing well enough to go there. I am sad because I barely got any time with Patrick being that he was in another room. We started on Brady, then by the time that he was done, Craig had already finished with Patrick. This sucks. Tomorrow we will have to start with Patrick, then finish with Brady. They both need a lot of attention with their feedings, so we might have to keep working on them separately.  I no likey.

Patrick
 Patrick was nice and stable tonight. No episodes while Craig worked on him. He took his feedings well, and didn't have any issues during it. He was nice and snuggled up when I got over there to take pictures of him. He weighed 3 lbs and 4 oz. again. Craig said he sucked on his pacifier the whole time that he fed, and that she actually turned his oxygen down while feeding, which is usually up. They started him on Lasix because he was a little puffy. His head looked the same, but he looked good otherwise.

            All tucked in for the night

         Having a good day today.

 

Brady

Brady did well today. He has quite the little voice now that his tube was not in his throat anymore. That's right, you read it correctly. He started bottle feeding tonight. He was given 30 ml of food in a bottle, and he managed to get 15 ml of it, give or take what he drooled out. He did fall asleep once during it, but they said that is normal. They said it is very hard for them to suck, breath and swallow the food. They get very tired easily, so they don't feed for more than 30 minutes. We stopped after 15 because he stopped sucking. He got the rest of it through his tube, like he normally would. He will get one bottle feeding a day, the rest through his tube for a little bit. Then he will go to two bottle feedings a day and so on. He had one little bradycardia episode when we first started, but then was okay after.  He is right next to Patrick's surgery buddy. They were shocked to see how big that he was. We had a nice visit with them. He was 3 lbs and 14 oz. tonight. He is getting so big! 

                                                                              My first bottle!

                                                                              Getting my diaper changed.

 

Everyone please be safe tonight and tomorrow during Isaac! Don't leave the house if you don't have to!

 

Love to all!

The Connors

 

 

 

 

Sweet Swaddle time

Good morning my little followers! Hope you are all having a good breakfast. We had a good night with the boys. They both had a good swaddle session with no big issues. They seemed somewhat relaxed, and didn't have any big episodes. We got to hold them for a long time.

Patrick
Patrick seemed to be having a good night. He has been high on his oxygen, but we think it is because of the new CPAP. It doesn't seem to get a good enough seal on his face. This is slightly annoying because I can't really tell if he is getting a lot of oxygen or not. Is he really getting a high amount of oxygen, or is it all just going out of his mask. Who knows. He only had one little episode where his heart rate and oxygen went down, but we think it was because he was pooping. He didn't have any more episodes while holding him. He was 1500 grams tonight. I forgot to look at what that was. His rash looks 90% better already. He seemed to be having a "stable" night.

                                                                              Hello everyone!

                                                                              Laying back and relaxing

                                                                              Hanging in my monkey outfit.

Brady
What can I say about Brady?

Brady is in a big boy crib! Well, not really. He is in a temp crib until a big crib becomes available. What does this mean? I'm happy, yet sad to say that he will be going to progressive in the next day or two, whenever a crib is ready. I am very happy because it means he is doing well. I am very sad because this means he is leaving little Patrick behind. It makes me smile, but makes me tear a little. I have to get used to this though, it is just another step. I wish they could keep them together still. They can't though, and I will deal. He did well tonight. Craig can't remember how much that he weighed. I will find out tomorrow.

                                                                      Me with my mom and dad

                                                                       Baby boy in blue

Have a great day everyone! For all of you here in Florida, have a safe day. Stay out of the storms!
Good night!
Em, Craig and the boys!

Clothes for all!

Good Morning all.  How are we doing this morning. We had a good night with the boys tonight. They had good nurses, and good swaddle time.  We didn't hear from the doctor today, but we know what is going on with the eyes, so that is okay. The doctor tonight didn't have much to say either, which we will take as a good thing.

Patrick
When I went over to Patrick's bed I noticed there was a little monkey foot sticking out of his laundry bag. I looked under his blanket and saw that there was a hint of a collar. Patrick is wearing clothes!! He is in manual mode like Brady! He decided that he is not going to fall behind Brady. He was doing okay tonight. He did not have any low oxygen issues while holding him. His oxygen was at 32% when we left.  His nurse was going to work on lowering it throughout the night. She did say that he had a few low oxygen issues throughout the day with his day primary, but he seems to snap out of it himself. He was 3 lbs and 3 ounces again tonight. He has a diaper rash that showed up out of nowhere, so now he has cream for it. He looks all red and spotty. Poor kid. he is up to 27 ml of food now.

                                                                         Look at me in clothes!

                                                                             Oh shucks, I'm nudiepants again!

                                                                                   New outfit from my parents!

                                                                              Dinner time with mom and dad!

Brady
Brady is chugging along. He is growing like a weed. He was 1665 tonight I think. I don't know how much that is in pounds but it was more than yesterday already. He is still in an incubator, and not a crib. I'm okay with that because then he can still be with Patrick. He is still wearing his little clothes and hats. He is at 30 ml of food. He seems to be hanging in there.

                                                                        Before my lotion and weight.

                                                                            Sooo strong!

                                                                       I got a new outfit too!

Have a great day everyone! Don't forgot to hug and kiss your kids today!
The Connor's