Not a great blog tonight

Oh man, you are all are going to be so maaad. Craig went to the NICU today, spent about 4 hours there, and didn't take one picture of little Patrick. Don't worry, I yelled at him already. One of the primary nurses texted Craig this morning and said that the nurses were short staffed today, and that Patrick's nurse had 5 babies assigned to her. She said Patrick probably won't get any tlc today, and he might not have a good feeding. Feeding is crucial right now for him, because if the nurse is busy, and she doesn't have a full 30 minutes to feed him, she might have to gavage the formula. If she gavages it, it is an automatic 48 hour stay. Plus, if his saturation level lowers, and they don't have time to look at him, there is a chance that they may put the cannula back on, and we don't want that either. So, Craig decided to go in and sit with him for a few hours to watch after him. He said that he did very well today. His oxygen level stayed in the 90-100 range. He drank 60 mls of formula at 3pm, and about 45mls at 6pm. He did get his 4 month vaccines. He didn't get a cool band-aid,  just some gauze and some tape. He did well I guess. Craig said that he mostly just spent the day holding him, and he did very well. No word on him coming home on Wednesday or not. I'm sure we'll find out like a day or two before.

Imagine a picture of Patrick here.....everyone send Craig mean mail today!

Brady
Brady had a good little day today. He actually was awake for a long time after his bottle. He likes to look all around even though he cant see anything. He just started fussing when around 12am, and it hasn't stopped. Not really sure what is wrong with him. He is crying and head butting me as I type this.

                                                                              This was him earlier.

                                                                               So peaceful....

                                                                                aaaaand now. I'm not sure what happened...
Hahaha, oh Brady. Okay, I rocked him for like 5 seconds, and he is back to sleeping. This kid is a nutter.

Well, you will be happy to know that the Craig told the the complainers to basically stop complaining today. I am so proud of him! I guess they starting complaining again that it has been such a long two weeks, and they feel so bad for the couple that has been there for almost two months. Craig told them how long we have been there, and told them that there aren't getting any sympathy from us. Haha. I can't wait to go in and see them tomorrow, or hear them tomorrow. There babies were full term. One is like 9 pounds, the other is like 13 pounds, maybe more. Two 1 pound babies in the NICU beats two normal sized babies for two months, or two weeks. I'm not complaining, and you know why, because without the nurses and doctors there, the boys probably wouldn't have made it. I will never complain, I appreciate everything they do.

A couple people have asked me if I am going to continue blogging after Patrick comes home. The answer is yes. However, it may not be every night. Sometimes it is hard to write since Brady is up for a long time. I imagine with two, it will be worse. I might have to blog during the day, so forgive me if you don't wake up to it in the morning. I will keep adding more pictures of the boys as they grow, and at their doctors appointments. Plus all the holidays are coming, so there should be some fun pics of their firsts! I will try to keep it interesting, and try not to bore you all.

Alright, that is all for tonight kids!
Have a great day!
The Connor family

I'm tired of the complaining in the NICU

Hi there, how are you? Look, I'm blogging on time tonight! Yea! Tonight was a good night in the hospital. The onlt bad thing about being there sometimes, well, besides having to be there because your kids are sick, are the parents.  I haven't vented in awhile on here so maybe it's time. Let's give it a go. Some of the NICU parents drive me crazy. The ones who have been there for a while with us are great. You know why? It's because they understand what it's like to spend every minute with your sick child, and not take any moments for granted. They are just happy that their kids are getting better each day. Who are the ones that burn me? The ones that have been there for a whole two days are have not stopped whining since they got there. If I have to hear one more time, that we have been here a whole three days, and it has been so hard, I'm gonna hit the roof. If I have to hear one more time that things couldn't be any worse, or that the nursing staff sucks, or that they are unhappy with the NICU in general, I might punch them. Tonight I listened to a parent complain that the nurses weren't doing every little tiny thing that she does, and she is mad, and wants to sign papers to bring her baby home. First of all, this is an amazing hospital, and if I ever had to go through this again, I would go there in a heartbeat, no questions asked. Second, the nurses and doctors there are amazing, and I trust them completely in any situation with my children.  Third, If you are dumb enough to try to take your child out a NICU when they are still sick, then your parenting skills are shit, and I feel bad for your childen. I understand why you want your child home with you. I want Patrick home more than I can even express. That being said, why would I take him out of the hospital before he was ready?  Why would you ask to take them home, when they are still sick? Do you have any idea what can happen when you go home when they aren't ready, or still have an underlying sickness? We do, because a NICU buddy that went home a few weeks back had to be rushed back in, and coded. Thankfully he is fine.  Bad stuff can happen, and I don't understand why parents want to take that risk. Literally, like three times tonight, I almost told them to shut up and stop complaining! I feel so bad that you are stressed out after your two day stay here! Come back and talk to me when you have been here for 4 months! You have no idea how lucky you are that you get to go home with a healthy baby in 2 or 3 days, and you have no idea what amazing nurses you have here! Reality check, people in here are worse off than you, so stop whining in front of them.  You have no idea how good you have it. I don't know, it's just annoying when you are trying to spend some quality time with your child, and people are miserable around you.  Okay, I feel a lot better now. Okay let's talk about Patrick.

Patrick
Patrick had a good night tonight. He finished his whole bottle for me, then 2 mls out of a another bottle. He even burped for me three times, which he never does. Hey, it's the little things in life that make me happy.  He is going to get his Synagis shot tonight. I'm sure he is going to pretty angry about that. He was a little fussy tonight, but otherwise was good. I told him that it is time to leave because his box is full of clothes and blankets, and all of his stickers are falling off.  I told him that Brady misses him, and all of his friends in the NICU are leaving. He agreed it was time. His rash looks super good tonight. He didn't dsat at all tonight. His oxygen was up in the 90's and 100's again.  I asked about Wednesday, and the doctor ssaid he didn't have rounds yet, so they will let us know! We are so close I can taste it! I can't wait!

                                                                                      Sleepy baby

                                                                                        Streeetch it out...

                                                                                         This is just a funny picture, I don't know why

                                                                                        Back to sleep after a full belly

Brady
I don't have any more pictures of Brady tonight. I put them all up today. He is doing well after his vaccines. He is still rocking his Bugs Bunny band-aids. I have to take them off. He is sleeping like a champ.  I am hoping that he sleeps through at least half of the night tonight. I am getting tired of sleeping on the couch. He has a lot of appointments this month. I think between him and Patrick we have three next week already. Busy busy bees!

Have a great night everyone! I hope I didn't lose any followers with my rant earlier!

Doctors, doctors everywhere!

Good afternoon everyone. So, last night, I get myself all ready to write the blog. I go over to get the computer, and realize it is almost dead. Well, that's annoying. I plug it in, and go to sit down to look at the pictures for the blog/ Then Brady gets fussy because he wants to eat. Okay, I;ll just feed him, and then the computer should have some power. Perfect. I feed him, then lay him down. Does he fall asleep, no. I hold him for a little bit. He finally lays down. I sit back for a minute just to make sure he stays asleep. That was my mistake. I woke up around 5 am. Oh no! I didn't write the blog! Uggh, what is wrong with me?! Sorry everyone, I am a real slacker lately.  It's actually better though, because then I just had more stuff to talk about.

Patrick
Patrick did okay last night. He didn't eat all of his bottle for Craig. His nurse was able to get more into him later on. He is a whole 6 pounds now! Yeah! What a big man! He stayed off oxygen all night because he was "sating" in the high 90's to 100. He was doing really good. They did put him on his cannula, on and off, for about 3 hours in the morning. he had his eye exam, a speech exam, and his rehab. They said he seemed a little stressed out afterwards, so they did it just to be safe. The eye doctor said that his eyes looked good still, and that we will continue with every two week appointments. We got a call from the speech therapist this morning. They said they wanted us to come in this week so they could show us some exercises. His tongue sticks out more than it should when he eats, so it takes him longer to take the bottle. Sometimes he makes a mess. They are going to give us tips on how to help him. I would imagine that we might have to follow up with them later on after he leaves.  Speaking of leaving, we may have a go home date! That's right, he may be coming home soon! They are thinking middle of the week. I am so excited! They just have to make sure that he keeps eating, and that his o2 remains stable. Besides that he seems to be doing good.

                                                                                Beth and Patrick (she picked him up as a primary!)

                                                                               Sue and Patrick (Second Primary)

                                                                                Amanda and Patrick (First primary during the day)

Brady
Brady is doing good. He seems to be less fussy the last two days, which has been nice. He seems to want his bottle, but then cries when you give it to him. He is confused, haha. He had a good night last night. he slept well. We actually were able to sleep in the bed, and not the couch. Today was not such a good day for him. He had a pediatrician appointment today, and uh oh, had to get shots! He had to get three shots, and then he had a drinkable one. He was not happy! He was a big 8 pounds today. Well, he had his diaper on, so probably just at 8 pounds.  He gets Bugs bunny band-aids today. They said he looked very good, and is in the 50th percentile for his adjusted age. He is right where he should be. He doesn't have to go back for two months. That will be one less appointment next month.

                                                                              This is what he did for each bottle yesterday. He was being so dramatic! Hahaha

                                                                                 After his shots, not pleased.

Alright guys, more later tonight!
Em, Craig, and the boys.

Let's do everything...together

Hey there everyone! How are you?  As always, sorry for the no blog last night. We had an eye appointment early this morning with Brady. We love getting up at 6 am...love it. We are no longer doing that because for one, I hate mornings. Also, Brady gets totally off schedule. He is not allowed to eat before the exam because they put pressure on the eye, and they don't want him to throw up.  Basically, we wake him up, then we don't let him eat for like two hours. He is not a happy camper.

I have noticed over the last two weeks that the boys seem to be bahaving the exact sam way. I swear they have some serious ESP. Last week, they were both pooping their pants like crazy. The last two days, it has been fussy bottle eating. They are hungry, but they don't want to eat. They both take a few drinks, then cry.  Do they know that they are both fussy?  Do they know the other one doesn't feel good? It is amazing how they are really the same in so many ways.

Brady
Brady has had a rough last two days. He is a bit fussy. He usually gets a bottle, then goes to sleep within the hour. Not the last two days. Now he has been eating, and staying awake, anywhere from one to 5 hours after. do I care that he is awake after his bottle. No, because it gives us time to read books, play Patty Cake, and what not. Have we done a lot of that? No, because he spends most of his after bottle time crying. He started crying last night about a half hour after we went to bed. That was about 2am. When I got up at 6am today, Craig was still up with him. He never went to sleep. He said he was up fussing all night. He finally fell asleep at like 615, then we had to leave for the eye doctor. He cried in the waiting room for like 15 minutes. Finally, I rocked him to sleep after that, just in time for him to wake up for the eye exam. The results of the eye exam were okay. He said he is pleased with the left eye, which is the eye that the Avastin was given in. He looked at the right eye first, then left, then back at the right. Uh oh. He said that the right eye, which looked good two weeks ago, now has some stage 3 R.O.P. in one spot. He said that it doesn't need to be treated right now, sometimes it resolves on it's own. He is still hoping the shot will help it. He also said that he has seen a few kids with a small spot of stage 3, and they do just fine, and they don't need treatment. However, because he saw that, we are getting checked now every week for awhile, not every two. Yeesh. After his appointment, we head to the hospital to see Patrick early, since I had to return an item to the maternity ward. Craig goes to take a nap, and I take over Brady. He wakes up from his mini nap at 450. I give him a while bottle. No sleep, I give him 20 more, no sleep. I know, lets cry and stay awake until 930pm. WTF Brady? What is happening? He seemed hot after the eye doctor today, so I took his temp. He didn't have a fever. He isn't gassy, he isn't hungry.  He is just awake. He doesn't want to sit down, only wants to be rocked.  He starts sucking on everything that he can get near his mouth. I try to feed him again, he eats a bit more, then cries. Sigh, let's try and bouncy chair. No, let's try a swing, no. Lets try a vibrating seat. Wait for it, he falls asleep for 2 minutes. The he starts crying. I pick him up, and he finally falls asleep. I guess he just tired himself out from trying all of the chairs. He is just starting to wiggle at 1230am. Let's see what happens. It's going to be a long night. The worst thing, is that I think I am fighting off something, and started taking medicine just in case, and now I think Craig might be getting it too. I hope Brady isn't getting whatever it is that we might be getting. As I checked his temp today, I realized, that I have no idea what to do if he is sick.  Thankfully, we see his pediatrician in two days.  Aaaaand he's up. We made it to 115am. Besides that, he is having a great time with grandma. They have been reading books together, and singing songs.

                                                                                For once, I'm sleeping

                                                                               This morning before appointment

                                                                               After his eye exam, he always looks so sad!

Patrick
Oh Patrick, you are going to be the death of me, I swear. We go to visit Patrick, and he looks great. he is gaining weight, and looks healthy. The doctor says on Sunday, that they are going to fine tune some things, and then come up with a date for him to go home.  Awesome.  We go in last night, and he still looks good.  We are all hanging out, talking, and his monitor goes off. His heart rate drops a little, but he quickly recovers, and everything is fine. I thin I mentioned the last post that he had two bradycardia episodes, but since his heart rate didn't go below 80, it wasn't a real brady. So, he has one, and we move on. We start to feed him. He takes about 30 ml of food. That's okay, he wasn't that hungry we will wait on the rest. All of a sudden his monitor goes off.  We are all looking at it, and then I look down to try to talk to him. I notice that he is starting to turn a bluish tint, and his nurse says to me, stimulate him. His heart rate went down to 50. Why does he always do this when I hold him? Really, Patrick. We almost have a go home date, and you're going to turn blue on me? Great. His nurse seems to think that the nipple hole was to big, and that is why it happened. We are cutting a hole in it to let the oatmeal through better. Sometimes it they get it to fast, they can brady. Good to know. After that episode he was okay, and he ended up eating like 30mls more later during the visit. Why is he doing this now? I don't know, but it's frustrating. The doctor then comes over to tell us the MRI results. He said that the MRI confirms what we already know pretty much. It stills shows his PVL, but the good news is that it is not any worse, which is great. He said that there is still one slightly swollen ventricle, but it's not bad. He said we are going to continue to monitor his head circumference, and if it gets bigger we will do something about it. His head has been really good though for about a month, and the measurements have been good. His head also feels nice and firm. and not squishy like before.  He said that the brain bleed also looks good, and that there is still some debris that is there, but it is not an active bleed. That is good too. So overall, it was a good report. I'm fine with it, as long as the PVL is not worse. We do have to follow up with a neurologist for him because of the PVL. He was up to 5 pounds 14 ounces HIs tushy looks a ton better! So, the only test left is the car seat test. They are just waiting for his saturation to be better, and for his feeds to be consistent.

                                                                                  Bundle of joy

                                                                               Reminds me of a little smurf

                                                                             Hmmmm, what can I do next to stress mommy out?

                                                                           Hi to all my friends and followers!

                                                                           Angela and Patrick

                                                                        Kelly and Patrick (she caught his broken arm)

                                                                       Little puffy hat, which we can't get enough off!

                                                                       Snuggle time with grandma

                                                                            So tired!

I think that was it from the last two days. We are basically just waiting for a release date, and for him to be a tad bit more stable. I hope it's soon!!

Have a great day everyone!
The Connor Family

Getting closer every day

Good evening all. How is everyone doing? I hope all is well.  There is not much to talk about tonight.  I think I told you most of the stuff on this mornings blog. Here is the newest tonight.

Patrick
Little Patrick looked good tonight. He was a little fussy when we were undressing him, but that is nothing new.  His little tushy looks so much better! I am very pleased. They have him on medicated cream, and it seems to be the trick. On a side note, he has the worst rotten egg sulfur gas that I have ever smelled in my life, haha. Oh my goodness, the nurses tonight were laughing about it. I officially have the stinky kid in the pod. Poor little man! He was still off oxygen tonight which is awesome. He had a "brady" episode tonight. His heart rate went down to 99, which they say is fine, and it doesn't count as a really bradycardia episode. What concerns me is that they said he did it this morning too. What's is the deal with that? I told him that's not going to get him home, so he better knock that off.  he took half of hi bottle tonight. He is allowed to have whatever he wants to have. He weighed a big 5 pounds 14 ounces tonight. Almost 6 pounds, what a growing boy! The MRI results weren't in tonight yet. The doctor said he is okay with that. He said that he would rather have the pediatric radiologist read it instead of the regular radiologist. He said if they wait til tomorrow that is fine, they will be more specific, and they are better at it for them. That's fine with me, but it just means one more night of waiting, which is slightly annoying. All of his "go home" orders are falling into place. He is on his go home food, he has had his ultrasounds and scans. I think he just needs to get his feeding under control before they do a car seat test,, and then he is good to go. As long as his oxygen continues to be good. Tomorrow is ret cam day again. The last time they rated him as a grade 0, so I am hoping since he has been on low oxygen it has stayed the same. That would be awesome. They did start him on antibiotics because they think he might have a slight case of thrush. It could be because of his acid reflux. He is on oral meds, and is still getting Zantac too. The doctor tonight said that he looked good, and that he was going to fine tune his orders this week, and they will put together a go home date. Eeeek, it is almost here! I can't wait for him to come home, yet, I am going to miss the nurses there. They have really become such a big part of our life. They have all said not to worry, they like the boys so much that they want to go to dinner or lunch with us when they get out. They are all local so we will still be in contact with them. That makes it easier to leave. Again, I will tear when I say good bye to them. Even the doctor tonight said they were going to miss us, they are so used to having us there! What really stinks is that his main primary, and his third primary are going on vacation for the next two weeks. This might be his primaries last night with him. So sad, he really likes here. She is so good to him!

                                                                               Sleeping, don't bother me

                                                                               Dinner with grandma

                                                                              Almost caught a smile!

                                                                             There's another one!

                                                                               Getting tucked in for the night!
Brady
Brady slept the whole night that we were gone apparently. Craig said that he cried for about 10 minutes, then went back to sleep. He has bee out ever since. He had a rough day today with his little vaccine.  It's tough being a baby!

                                                                                Come back later, sleeping

Have a good night every body!

Love The Connor family

Big shot and big scans today

Hi there everyone. I was so excited to blog last night because I had lots of pictures to put up. However, by the time I came home, I had such a headache that I took some meds and laid down. I am hoping that I am not getting sick. That would suck.  Patrick has a had a busy night, and day. 

Patrick
Patrick was having a good night last night. He was off of his oxygen all day, and then he stayed off all night.  He really didn't even "dsat" after his feeds that much. I am hoping that this is a good sign, and that we won't have to take him home with oxygen.  That would be great. When I called today, they said he was still off of the oxygen, and was doing well. He did well on his feeds last night. He drank his whole bottle.  The added some oat cereal to his formula for his acid reflux. They said that is is heavier and will stay down. I guess they usually use rice cereal, but they said there is a big thing out right now that they are finding arsenic in rice cereal. That is scary, right!? They said that he is doing well with it, and we noticed last night while drinking it, that he didn't need as much chin and cheek support. Speech Therapy said that to help him, we can rub his cheeks, and rub the top of his mouth to help him eat also. They did switch his feeds to 22 calories, which is what they send him home on.  He was up to 5 pounds 12 ounces. He is getting so big!  He had an MRI done today. I won't know the results until later though. It is to check his brain bleeds and to make sure the PVL isn't any worse. We are hoping that the PVL is the same, and that he won't have any more future problems. We will find out tonight hopefully. Other than that, it looks as if he is getting closer to coming home soon. I am thinking maybe a week and half to two weeks I bet.  Also, he picked up another primary during the day. Yea!

                                                                                    Sleeping, listening to my fish music box

                                                                                 Patrick and Melissa (Brady's 2nd Primary)

                                                                                      Patrick and Paula (third primary)

                                                                                     Vicki (first primary) Craig, Dr. Figueroa, Patrick and me)

                                                                                  Vicki (first primary/Patrick's girlfriend!)

                                                                                 We decided to dress him up for Halloween. Everyone has been wearing their Halloween scrubs, so we didn't want him to be left out.

Brady
Brady is doing good. He is eating like a champ!  He had a good night with grandma. He had to go to his first pulmonology appointment today. He had to get his second Synagis shot. I guess he has to get one, once a month until February. He was not pleased with it. He id his silent cry again. It's awful.  He even got his first cartoon band-aid. It was a Halloween Charlie Brown. He didn't care, haha.  He did well though otherwise. They weighed him today at the office., He was 7 pounds and 12 ounces. Holy crap! He is getting so big too! I can't believe how much the two of them have grown!

                                                                                       Story time with Grandma

                                                                                          Nap time with dad

                                                                                           After my shot :(

                                                                                          Just being silly!

Alright all, that is it for today. I will have some MRI results tonight hopefully. Pray they are good ones!

Later skaters!
Em, Craig, and our growing boys.

Houston, we may have a problem

Good morning everyone. Sorry it took so long to post tonight. I have a raging headache tonight that has lasted for about 6 hours now. I came home from the hospital and went to sleep, but it is still hanging around here at 6am. I think it is from lack of sleep, and to much caffeine today. Time for another Tylenol, I think. 

Patrick
Patrick looked good tonight. As usual, we woke him up from his nap, so he looks very sleepy in all of his pictures. When I called today, they said that they put him back on a cannula. They said that he was "dsating" a little, and hanging out in the 80's for awhile. The 80's aren't bad, but if they see him low for awhile, they like to help him out. They placed him on a pedi-flow cannula. Basically it is such low flow, that the nurses said you blowing in his face is pretty much a stronger flow than this cannula.  They said it was just enough to keep him up in the 90's.  That being said, they said that they are looking at him going home soon...but on oxygen. Okay, I was excited so I thought, that sucks, but he is home right? Then my hubby started saying, that that is bad, because that means that there is going to be a nurse over all the time, we have to fill up his tanks, he is going to be a monitor, and they have to check that. It basically would come with some kind of in-home care. Mmmmm, no thank you. I want nothing to do with that. It is crazy around here enough with one baby and the dog. The last thing that we need here is a person coming over everyday that the dog doesn't know, sending him into complete fits of protective rage, that I have to listen to. Enter more Tylenol, and major stress for me. So, we are going to talk to them tomorrow and find out more info on that. If it means leaving him there another week or two, we will deal with the drive. I hate to even think of him staying there longer than needed, but I hate having someone here everyday just being here, that is super annoying to me. I think it is the anti-social part of me, or the "I don't like strangers in my house" part of me coming out. It also could be the "just leave us alone so we can finally be home and raise our babies" part of me too.  More on that tomorrow. He was off of his O2 the whole time we were there, and he did fine. He stayed in the 80's after his feeds which he normally does, but went into the 90's after. He drank all of his bottle and then some. He is getting 47 ml's, but he took 50. He's a growing boy you know. I get teary looking at him now because he has grown up so much in the last two weeks. He looks so much older now. I just think it's awesome because he's come so far. His tushy looks a lot better tonight, but he is still getting oxygen on it. He was a big 5 pounds 12 ounces tonight!

                                                                                        I hate waking him up for his hands on when he looks like this.

                                                                                          I am so sleepy mommy

                                                                                         The weekends here!

                                                                                         In my sleepy sack outfit. It took two people to get it on me. Elastic, over the head outfits are not my friend.

Brady
Brady had another good day. He's starting to stay awake more after his bottles. It's kind of fun because we get to see him look around more, and listen to things. It's not fun though, because I don't know what to do with him, haha. I just sing and talk to him. He can't see anything yet, so it's not like we can play with toys. I try to rehab him a little, and just play with his limbs. He only tolerates it for so long. He is eating like 120 mls of formula, and doing well on it. This kid can burp too, like Homer Simpson, lips blowing in the wind, burping. It is awesome. He has been a little off schedule this week, but it's because he is sleeping longer, or eating later. It's why I am up typing now at 630 am. I only have one picture of him today. He basically slept all day, which didn't leave a lot of photo opportunities.

                                                                                            Burping after my bottle.

Have a good day everyone!

The Connor family