Cameron hadn't been weighed yet when I updated last night and I just got back from the hospital with her weight from today. So with both weights put together (she gained both days) she is up to 2 lb 5.2 oz!!!!! I am SO happy :D She gained about 3 ounces! We're getting closer to two and a half pounds. I think I mentioned before that they started fortifying her breast milk with extra calories. They increased the amount of calories they are adding today and upped her overall feedings so I'm hoping the weight gain continues to remain steady. She's been slow in this area for whatever reason and I was starting to feel really down about it. She will be one month old Monday so I am excited to see what her total weight gain will be for the month.
Everything else today remained the same. She is staying very stable with her breathing so the doctors are turning their focus on her nutrition and weight gain. The CPAP is very non-invasive so they are happy with her staying on it for now and just allowing her to use all her energy on growing.
I'm liking this update a lot. I have nothing to report but good news! Yay for Cameron!!!
I forgot again to update yesterday. Nothing happened new at all and nothing new happened today either so this will be really short. They are still trying to wean her off of the BiPap to the plain CPAP. Everything else is going smoothly. They are thinking that by the end of next week they will have her getting her nutrients solely by breast milk. Right now she still has some IV nutrition running through her PICC line. As soon as she is totally off the IV feeds and completely on breast milk they will take the PICC line out. I can't wait for that!! So they're shooting for all that to happen by next Friday. She has still not really gained weight, nothing new there. Her doctor is hoping that she starts to gain more within the next coming week now that she has the initial fluid loss from the lasix is behind us. That's about it, I will update again tomorrow!
She's making progress!!! Her doctor was really happy with her response to the lasix. It has helped a lot with her breathing issues. All weekend when we went to visit she didn't have any of those really scary breathing episodes and as I think I already mentioned they have been able to decrease the amount of oxygen she is getting by a lot. Most importantly her blood gas today showed her CO2 level is still decreasing and has gone WAY down over the past week so she is definitely getting much better ventilation in her lungs. Because of all that the doctor is going to keep giving her lasix every other day. Also because of all the improvements they are starting to wean her off of the BiPap. I had mentioned a while ago that they switched her from the normal CPAP to a different kind of CPAP machine that gives her a little bit more breathing support. Well, that machine is the BiPap and today they finally started to decrease her settings. I'm hoping within a day or so they will switch her back to the regular CPAP. I'm so happy, she is finally moving back in the right direction with her breathing!!
As her body adjusts to getting the lasix her weight will start to increase again. She was up a little bit in weight last night. She had dropped down to 973 grams when she started on the lasix which was exactly her weight at birth. Last night she went up to 991 grams which is just barely short of 2 lb 3 oz. To help her gain, they increased her feedings again today and are now going to be fortifying my breast milk with extra calories and nutrients. I'm starting to get really frustrated with the weight issue. She needs to start improving in this area or she will never get home. Over 3 weeks old and still at her birth weight. Hitting 3 pounds is huge in the NICU and I thought we would be much closer to that at this point. Hopefully as they increase her feeds, she gets used to the lasix, and she starts getting the fortifications she will start gaining like a champ!!
I slacked on the updates a little this weekend. Honestly nothing has changed at all though. On the weekends if her doctor isn't there things can be kind of slow. The covering doctors will round on her but unless something is outstanding or critical they won't change anything. Maybe I'll have more to update on tomorrow night but for now she is over 3 weeks old and doing well :)
There's a couple of things to talk about today. First of all, the doctor told me that since her first head ultrasound she's had two more that both looked fine. No one ever mentioned she was having these so I had no idea but the results were totally normal. She had a blood gas done today and the results were really good! I'm so excited about that, her CO2 continues to get lower and is finally in an acceptable range for preemies.
The other thing that happened today was the doctor started her on lasix. It's a diuretic which basically causes her to pee out extra fluid. They did a chest x-ray to see if the PDA was causing fluid backup in her lungs and it is. That's the reason for the lasix, it should allow her to get rid of that extra fluid. This is a normal issues that comes along with a PDA and they were telling me this might happen all along so I'm not concerned. The most common side effect with the PDA is that the fluid backup can cause them to have increased breathing episodes and it looks like that may have been the case. It's a pretty simple fix and nothing to worry about though. Once she's been on the lasix for a couple of days and the fluid leaves her lungs the breathing and oxygen episodes she's been having should start to clear up. They won't go away of course but they should get better. Unfortunately, since she will be peeing out extra fluid she will start to lose a little bit of weight. She went down from 1007 grams to 999 grams today so now she is at 2 lb 3.23 oz. It will probably continue like that for a little while before her weight can get back on track. I'm seeing a recurring motto in the NICU: pick your poison. There's always something that needs to be treated but the treatment itself can cause a setback. Here's another example: I asked her doctor if we could draw a CBC (complete blood count) to see how her anemia is doing since starting the epogen. He said no and that although he would like to do the CBC, he would rather live in the unknown in this case because he doesn't want to draw too much blood for fear of her becoming even more anemic. She already needs a daily blood gas so he doesn't want to add more stuff on top of it. Makes complete sense but it seems like you really can't win.
Overall I'm starting to feel so much better. With the good blood gas results and her starting on the lasix it seems like her breathing issues are getting cleared up. For a while I really thought we were looking at some more time on the ventilator but now things are looking a whole lot better. And that is the NICU roller coaster :)
No changes today. Her doctors are happy with where things are at and are simply continuing to monitor the ongoing issues. One thing her doctor did say was he doesn't feel she will need to go back on the vent. She is coming out of her apnea episodes either by herself or with mild stimulation so he's not concerned. They are checking her CO2 again tomorrow but again even though it is running high, it's just a normal preemie thing that he doesn't think will require the ventilator. I was relieved to hear all that.
We actually did hit a milestone today, she is over 1,000 grams! Weighing in at 2 lbs 3.5 oz she is slowly creeping away from her birth weight. I'm told that going from 2 to 3 pounds will be very slow and everything speeds up quite a big around when she hits the 3 pound mark. And I think I've mentioned this before but 4 lbs is when they start to talk about sending her home assuming all other things are stable. So we've still got a while before we get there but every ounce or half ounce makes me feel that much closer to the end!
Mostly good news today. The pediatric cardiologist repeated the echocardiogram and the smaller hole in her heart has closed. But that's not the one they were worried about in the first place, the PDA which was much bigger is still the same size. That's good because the doctor definitely didn't want to see that it was getting bigger but bad because he had hoped it was getting smaller. For now since she is asymptomatic they will not be treating it. They still expect it to close on its own eventually and will repeat the echocardiogram in 2-3 weeks. Her feedings were increased again today since she is still tolerating that very well. She is allowing them to increase her feedings faster than normal because she isn't retaining any milk in her stomach and she has very frequent bowel movements. As far as her breathing, her carbon dioxide was a little bit lower today than it was yesterday. So it has gone down two days in a row without any extra help from the CPAP. They are going to give her a break from blood draws tomorrow and will check her blood gases again on Thursday because of this downward trend. She is still having those spells of apnea, that's the one thing I really have a problem watching. As much assurance as I get that it's totally normal I just hate it SO much. I wish she would stop :( One of the things that could be aggravating it is her anemia so hopefully when the epogen starts to work her episodes will decrease. Unfortunately the epogen takes a couple weeks to take effect but I'm starting to hear that it really does work and she thankfully shouldn't have to have any blood transfusions. That would stress me out so if it can be avoided I'll take it!
Today was so-so. Her carbon dioxide was better today, still high but better and they hadn't increased her CPAP settings yet so she did it on her own. Hopefully that trend continues, I think they are checking it again tomorrow. She got her first epogen shot today and it takes a while to really work so we won't know the outcome of that for about 2 weeks. For the first time today, she is over her birth weight!!! Almost 2 lbs 3 oz! So exciting :)
I had kind of a rough visit this evening because Cameron had two episodes where she stopped breathing for a little while today. I was there during both of them and it was almost unbearable to watch. Her oxygen dropped far lower than I had ever seen it and she literally lost all of her color, she was totally white and became almost bluish. I had to tear myself away from the NICU after she came out of the second episode because I just couldn't take it. They were pretty close together and the nurse and the respiratory therapist that were there think it was because she was straining to have a bowel movement. She did end up having a dirty diaper after that so it's definitely possible. As usual, the respiratory therapist assured me that these episodes are normal. I'm so sick of hearing that things like my baby not breathing are normal. She said worst case scenario is if she keeps having frequent episodes they might put her back on the vent for a couple of days to let her regain some strength but that if it was just a bowel movement issue it shouldn't come to that. More talk of the vent :( I'm so nervous I'm going to come in one day and she is going to be intubated again.
Anyways, I came back about 3 hours later and she had not had any kind of episode since so that was a big relief. She was very active and pink and was actually doing better with her oxygen than I had seen in a while. These episodes are just something preemies have to work through and will get better as she gets bigger but man is it hard to watch. After seeing her again tonight I felt SO much better. She looked completely back to her normal self. Hopefully it was just a bowel issue :)
Oh and one more tiny milestone reached!! Her umbilical cord fell off :) She's got a very tiny belly button and it's definitely an innie!
I hope tomorrow is a little bit better but I just don't know anymore. I'm patiently waiting for the next step forward...
Sorry I didn't update yesterday, we had a busy day and really nothing happened.
Today I got a bunch of news from the NICU. Not really any good news but nothing horrible.
The doctor told me from day one to expect a blood transfusion at some point. He said pretty much all preemies need at least one. They drew labs this morning and her hematocrit was too low which means she's not creating enough red blood cells. They have two options, a blood transfusion or medication. They obviously want to try the least invasive method first so they started her on epogen which is a medication that should stimulate her bone marrow to produce red blood cells. She is also now getting iron. Hopefully this will be enough to fix the problem or else she will need the transfusion. As far as preemies go this is nothing to worry about (as with all her other issues so far). Totally expected but still disappointing when it actually happens. On the bright side, this should help with her oxygen levels. The more red blood cells, the more oxygen she will be able to carry throughout her body. I think I've talked about her recent oxygen desaturations and they should clear up a little bit once the anemia is taken care of.
I don't know if I had mentioned this before but she (as almost all preemies are) is on caffeine. Caffeine stimulates the central nervous system which controls heart rate and breathing. It helps to stimulate the preemie to keep their respiratory rate and heart rate up. The dosage of caffeine they use is based on their weight, and they started her on it when she was at her lowest weight. I had mentioned that she has had an increase in bradys (heart rate drops) recently. The purpose of the caffeine is to lessen the amount of bradys they have. Since she has been putting on weight she has been outgrowing the caffeine dose she was on. The doctor increased her dosage today based on her new weight in the hopes that it will decrease the amount of bradys she has. It seemed to help today but we will have to see how she does over the next few days.
Lastly, and this is the worst of all the news, is her carbon dioxide level is still getting higher. They keep increasing her CPAP settings and can't really get the carbon dioxide under control. That just means she is not expanding her lungs enough to ventilate properly and release enough CO2 even with the help of the CPAP. If her CO2 level does not stop increasing she will probably have to go back on the ventilator. I will be really upset if that happens. It will just feel like such a huge step backwards. They are going to draw another blood gas tomorrow morning and see what happens. They may continue to increase her CPAP settings some more before putting her back on the vent so I am really, really hoping they can get it taken care of!!! Again, going back on the ventilator is not out of the ordinary for early preemies. It's pretty common, often times their bodies just get tired after a couple weeks of the CPAP. She shouldn't need too much time on the ventilator before going back to the CPAP. It's just so disappointing, they go from talking about taking her off of the CPAP to talking about putting her back on the vent. I hate the 2 steps forward 1 step back nature of the NICU.
The doctor said the PDA is definitely still there and may repeat the echocardiogram this week. However, she is not having any fluid retention from it yet so it doesn't seem like it's causing her a problem. They haven't had to decrease her fluids and they actually increased her breast milk yet again today. She is a shining star in the gastrointestinal department. She is still digesting faster than they are feeding her and she has no problem with her bowels whatsoever!! Unfortunately though what I'm learning is that eventually she will probably have a setback in that area too. But again, that's to be expected. It's unbelievably frustrating that I have to just expect all these issues to occur. The doctors and nurses are always assuring me that "this is totally normal" and while I've accepted that it is my normal it makes me sad because most other people don't have to deal with any of this "normal" stuff. I just want her to actually be normal!!!
Not a whole lot new again today. They upped her settings on the CPAP to help her breathe a little bit more because her blood gases are still a little bit off. She gained some more so she is up to 2 lbs 1.75 oz, so close to her birth weight! Other than that, still very slow and stable.
Really there's no big news from today so this will be short.
Cameron gained a half an ounce so that's good and they increased her feedings again so I'm hoping her weight gain will get steadier. Her carbon dioxide level was better today so the new CPAP is doing its job. She is not retaining fluid or showing other symptoms from the PDA so it doesn't look like they will be treating it with medication which is a relief. And that's about it so things are just slow and stable for now but I'm okay with that.
Many, many people have referred to the NICU as a roller coaster. You take two steps forward and one step back etc. I wouldn't exactly consider today a good day. Not horrible but kind of a disappointment.
They had to switch Cameron to a different CPAP machine because they continued to monitor her carbon dioxide level and it kept increasing. The new CPAP helps her breathe even more than the one she had before. After being on the new CPAP for a while they checked her blood gases again and it was a little bit better. Hopefully the one they draw tomorrow will look good. I'm just trying to remember that the CPAP is good for her right now even though she may look uncomfortable. It's making it so that she doesn't have to work too hard to breathe so that her body can use it's energy elsewhere to grow big and strong.
She keeps having heart rate drops which started a couple of days ago. They are totally expected in all preemies but she didn't have really any for about the first week. She also keeps having drops in her oxygen level. Same story as the heart rate drops but still it's disappointing. The nurse practitioner explained it as a "honeymoon" period. When preemies are born for some reason they do really well for the first week and then they start to have the normal issues with heart rate and oxygen etc.
Also, she lost weight on Sunday and gained barely anything on Monday or Tuesday. She is still just sitting at exactly 2 pounds. It's really frustrating that she is still below her birth weight. It makes me wonder how she will ever get to the 4-5 pound mark where they start to talk about sending her home. She was doing so well with gaining and then just stalled out, I don't get it. Fingers crossed that when they weight her tonight she is up a little bit.
I didn't talk to her doctor today so no news about the heart murmur/PDA.
Everything else is still good so no major issues just a lot of little frustrations.
This update will be quick because I'm really tired and I only have a couple bits news.
Cam's doctor said he *thinks* her murmur (from the PDA) is softer than before so over the next couple of days we'll see if it continues to get better. Her fluid levels have been really good so they didn't need to start diuretics or decrease her fluids!
I got to hold her again tonight and it was wonderful :D I'm hoping they will start to allow us to do it every day.
Not a whole lot to update on today. Cam is still doing well with her feedings so today they doubled the amount of breast milk she's getting. She's almost back to her birth weight.
Her doctor is going to decide tomorrow if he wants to put her on a diuretic and/or cut back her fluids for fluid retention due to the PDA. He said probably by the end of the week he will know whether or not he wants to try and close the hole with medication.
Her bilirubin is still fine so it doesn't look like she's going back under the lights anytime soon.
I'm a little disappointed because they tried her off of the CPAP this morning and she didn't tolerate it so they had to put her back on. Her oxygen level was fine since they were giving her oxygen through a nasal cannula but they drew some blood to check her blood gases and she was retaining too much carbon dioxide. That just means she still needs a little extra help with her breathing. The CPAP uses pressure to help her expand her lungs all the way which helps her take in oxygen and release carbon dioxide. She was able to take in enough oxygen because of the cannula but was not able to release enough carbon dioxide. So CPAP it is for a while. Her doctor talked about trying her off of it again in a couple more days because her breathing rate is just fine without it. For her to come off the CPAP this early would be amazing for a 26 weeker and I wasn't expecting it nearly this soon anyways (he initially told me a couple of weeks) so I'm not that disappointed she just looks so much more comfortable without her big mask.
Today didn't seem to go as well as all the other days but I've been warned this would happen. At least nothing big went wrong, only a few small setbacks. I can't wait to have this heart thing and the CPAP behind us!!
Cameron is getting bigger! She was born at 2 lbs 2 ounces, went down to 1 pound 11 ounces, and last night when we weighed her she was back up over the 2 pound mark!! Also, she had been using the smallest diaper size and when I changed her diaper it was simply too tight on her so we had to get her a bigger diaper :)
We had her off of the CPAP for a good 15 minutes and she didn't have any problem. She needed oxygen but that's expected. Her breathing rate didn't drop at all and she didn't seem to be working any harder when she took breaths. The nurse manager who was with us at the time said she would mention to the doctor that Cam might be ready to come off the CPAP. She looks so much more comfortable when she doesn't have to have that mask on so I hope she comes off soon and never has to go back.
We got our first "bad news". It's not really bad but just kind of sounds scary. She has a PDA (simply put: a hole in her heart) which is very common in early preemies. The doctor said it's nothing to worry about. The pediatric cardiologist said her PDA was moderately large and found a second hole on the echocardiogram between the ventricles that is very, very tiny. They said that the great majority of these holes will close on their own. Because one of the holes is on the bigger side, she may have some side effects which are easily managed (fluid retention, low oxygen levels). They are going to monitor it very closely but again, they expect both to close on their own. If they don't close on their own there is medication they can use to close them. The doctor said that in a very rare case if the medication doesn't work they could do an easy surgery but he really stressed how rarely he sees this happen. Obviously the bigger one is at greater risk for not closing by itself. He reassured me that these holes are totally treatable and they will have resolved one way or another by discharge, no long term heart issue or anything. Her oxygen levels were dipping a little bit yesterday which happens all the time with preemies but of course I am worrying myself to death over this even though I really shouldn't be. We will see how today goes and I will talk to her doctor about it tomorrow. I'm also starting to worry that the weight gain is a result of her retaining fluid. He said if she does start retaining fluid from the PDA they would cut back her fluids and maybe give her a diuretic. The nurse said that since her diapers have still been really wet it's a good sign that she's not retaining but I'm still worried. Her doctor is awesome and is very, very thorough with her care so I'm sure if these are things to be concerned about he will let me know but I can't help the worry. I'll just have to see what he says tomorrow.
Other than that, she is still doing really well in all areas. Even though they increased her oxygen a little bit her breathing is not anymore labored, she's not having episodes of apnea and her breathing rate is not increasing. They still aren't going to put her back under the lights which I'm happy about. Her feedings are going really well, she's digesting quickly and having regular "dirty" diapers which shows that things are moving along well through her digestive system.
For the first time last night they took everything off of her face, no feeding tube, no CPAP, nothing. We got to see her beautiful face just like someone with a normal baby! It was so precious. I can't wait until the day that becomes permanent :)
I think that's about it, even with the heart setback things are going very well overall. They are still really excited about the way she is doing, the nurses rave about how good she looks for a 26 weeker and her doctor told me that after seeing her behave really well for a week he feels like we've reached a "safe point" and he expects her to be just fine. I will update later if anything new happens with her PDA today but hopefully it won't. And hopefully Josh gets to do his first kangaroo care session tonight!!
I held Cameron tonight for the first time every and every second of it was total bliss!! I could feel her chest expanding with every breath against my chest and it just felt like heaven. I was able to hold her for almost an hour and she tolerated it so well the entire time. Her vitals were totally stable and she seemed so happy to be close to me. I have never held anything so precious in my life and I can't wait until we get to take her home and I never have to let her go. I know our day will come but right now it just seems so far away! I think they're going to let Josh hold her tomorrow since she did so well tonight. She amazes me with her strength every day and I can't stop marveling in her beauty. She is truly our tiny little miracle and she has completely stolen my heart. I just can't wait to hold her in my arms again!! What an awesome day :D
So we just got back from the hospital and Cameron was doing awesome as usual. I do have some big news though! As we walk into the NICU we see that Cameron is surrounded by all this extra medical equipment and there were people all scrubbed up standing around her. It was SO scary... we were like what happened???? Her isolette was wide open and the big bright lights above her bed were on. She was even covered up with a little cloth. My heart literally stopped and for a second my mind went to the worst case scenario. Then we realized she just got her PICC line!!!! We breathed a sigh of relief and the nurse practitioner said they were all done just waiting for the x-ray results to confirm correct placement. She did really well during the procedure and everything looked good!! They didn't want us to hold her yet because the procedure itself is stressful on her and they had to wait a little bit to take out the umbilical IV but tomorrow is a go :D Unfortunately this early on they don't want her to get too overstimulated so only one of us can do kangaroo care every other day until she proves that she's tolerating it well. This means either me or Josh can do it Friday and then the other person won't get to do it until Sunday. That's okay though, I'm just glad the end of the "non-holding" period of her NICU stay is in sight. Depending on how well she tolerates it we will be able to increase the frequency.
She tolerated her feedings SO well today and is digesting without any issue and moving her bowels. Josh changed her diaper at 10:00 and wow did she have a big bowel movement for such a small baby!! Josh was in shock a little bit but he successfully changed his first poopy diaper ;) On a serious note though, preemies can have a lot of trouble with digestion and bowels and it's one of the major things that can keep them in the NICU for along time. It's a relief that she is doing so well with it. Also, she gained about another ounce when the nurse weighed her tonight!
Everything else is still pretty much the same. It looks like she may need to go back under the bilirubin lights soon which is disappointing but they told me this would definitely happen and it's nothing to worry about. Pretty much all preemies go in and out of the lights until they are a little bit more mature. She just looks so comfortable all swaddled up and I like that she can open her eyes and look around. Oh well, if this is our only issue so far almost a week into her NICU stay that's fine with me.
I'll update after tomorrow's exciting events and I'll hopefully post some pictures!
I didn't update yesterday, it was a really difficult day for me because I was being discharged from the hospital and going home without Cameron was one of the hardest things I think I've ever done.
Cameron is still doing really well. They have taken her off all the bilirubin lights because her levels are low enough. They may have to put her back on depending on how much her levels rise after she comes off. I hope they don't have to put her under the lights again because they can't swaddle her (her skin has to be exposed as much as possible) and she sleeps much more soundly when she is swaddled. She is so precious when she sleeps, Josh and I will just sit there and watch her tiny little chest rise and fall. She also doesn't have to wear her little sunglasses so we can see her eyes and she can look at us too!
I was kind of nervous about the brain ultrasound but the doctor told me that everything looked good. so that was a relief.
The biggest milestone from yesterday was they started her on her breast milk feedings!! She tolerated them really well and is digesting quickly enough that they are able to increase her feedings today. She had gone from 2 lbs 2 oz at birth to 1 lb 11 oz yesterday morning :( but that's not a surprise I guess. Last night when they weighed her she was back up to 1 lb 12.8 oz!!! She gained almost 2 ounces! This is probably attributed to her new feedings and extra fluids.
Again, no word on the PICC line but I'm really, really hoping for tomorrow! I just need to be patient though, the doctor will do the PICC line when he feels she is ready.
Not sure if I will update again tonight or not, I guess it depends if anything changes throughout the day.
Cameron had another good day today. She is becoming very vocal about things! She is not afraid to cry but is easily calmed down with her pacifier or a finger to hold on to. I hate so much seeing her cry but I'm surprised at how loud she can get because it can only mean one thing right? Good lungs! ;) On that note she is still doing very well on the CPAP, no episodes of apnea and she is doing just fine without oxygen.
She had a routine ultrasound on her brain today to make sure there is no bleeding. I will get the official results from the doctor tomorrow about that but no bleeding is suspected or anything.
The doctor told me this morning that they are probably going to start feeding her very small amounts of breast milk tomorrow (Wednesday)!!! I'm so excited because that is another really big milestone! Hopefully all goes well because like everything else they have to go back to IV feeding if she doesn't tolerate it. She won't transition 100% at first anyways but the better she tolerates it the sooner we can make the full switch to her getting all her nutrition through breast milk by mouth. For now the milk goes down her OG tube into her belly, bottle feeding won't start until much later (they start on the bottle and when she gets good at that I can start breast feeding). They will give her the pacifier anytime they put milk through the OG tube so she learns that when she sucks her belly gets full. Anyways, I'm excited about this but he didn't make any promises so it might not happen tomorrow but it probably will. I will let you know how it goes!
No word about the PICC line. The doctor didn't seem like he was quite comfortable with it yet when I asked him about it today. I'm still hoping they could possibly do it tomorrow but it doesn't look like it will be for another couple of days. I want to hold her so bad!!
She was on two different bilirubin lights at the same time and her levels started to go down today so they were able to get rid of one of them. One was a big blue light that made her look really different so they stopped that one. I'm much happier without it! She now just has the smaller spotlight on her and as long as her levels continue to drop they will be able to get rid of that soon too.
I feel like overall she is just making so much good progress!! I hope we don't have any setbacks although I'm sure we will, it's totally expected with preemies. They try things and sometimes the preemie is just not ready for it yet so they have to go backwards. Also, I'm pretty sure I'm leaving tomorrow which is sad to me. I have to leave my sweet girl by herself. I'm just down the hall from her now so I feel like going home I'm going to be so far away from her :( This is where it gets really hard. I want to take her home so bad like other moms but I just can't. Ugh I'm not looking forward to leaving her at all. Wish me luck...
Lots of little news today (nothing bad) so bear with me.
So we hit our first milestone today! Cameron was taken off the ventilator and put on a CPAP machine. She was off the ventilator all day and breathing on her own! The CPAP helps to get air and oxygen into her lungs because she can't quite do all the work yet herself. They don't know how long she will be on the CPAP but the next step is just to take her off all together, possibly with a nasal cannula for oxygen. They said it could be a matter of days or weeks, it just depends on the baby. It is also possible that she may need to go back on the ventilator if she starts to have trouble keeping her breathing up. The lung issue is probably the biggest with preemies so the doctors are really excited about the fact that we were able to get her off the ventilator so soon because it shows more maturity in her lungs, probably from the steroid shots I received.
Other things she was started on yesterday/today which are very standard in preemies are the jaundice lights and OG tube. The lights are to break down a substance called bilirubin that her liver isn't breaking down fast enough causing the yellowing of the skin. The OG tube goes down her throat and relieves her stomach of excess air that is being forced in by the CPAP and eventually will be used for her feedings! They said her first feedings could start in 3-5 days for which they will be using my breast milk. I'm excited to feel like I am finally doing something for her!
Her blood cultures are all coming back negative and she is showing no sign of infection at all so I think tomorrow they are stopping her antibiotics. I'm nervous because I don't want her to get an infection but the less medication she has to be on the better. At the end of the week she will get an ultrasound of her brain that will show whether she has any bleeding. Hopefully all goes well with that but as of right now she is showing no signs.
Lastly, they are taking out her umbilical IV this week which is what is preventing us from taking her out of her isolette and holding her. She will get a different kind of long term IV called a PICC line and that will allow us to take her out of the incubator and do what's called kangaroo care (skin to skin contact between mother/father and baby). Kangaroo care has been shown to have many benefits on the baby's health and is a very important part of her care in the NICU. We are really excited about this as we haven't been able to hold her at all, only change her diaper and touch her a little bit. I can't wait to just have her in my arms!!
There's a lot going on right now because she is still pretty new to this world and things will be pretty busy for the first two weeks of her life. Still no bad news at all so I'm really hoping that continues. As for me, it looks like I will be going home from the hospital on Wednesday, a little over a month after coming in. I'm not sure how I will feel being away from Cameron feeling like it's back to business as usual at home just me, Josh and Penny. I will definitely be pretty sad so I'm a little nervous. I know I'll say this a million times but I wish I could fast forward to the day that we bring her home. Unfortunately though this is only the beginning of the ride so I can only hope I'm ready for it!
Cameron is doing very well! The NICU doctor today said that so far she is doing a bit better than the average 26 weeker. The only support she needs right now is the ventilator but she is not on any oxygen which is awesome. She is actually breathing on her own most of the time and the ventilator kicks on only when she stops. So the big news is it looks like tomorrow they will try to take her off of it if her blood gases look good with her next blood draw!!
I got to do all her care this morning which was very exciting. I got to change her diaper and she is doing really well voiding and passing bowels which is a big concern in preemies. While I was changing her she even opened her eyes and was looking right at me, it was very sweet :) I'm pumping and it is very important to me that she gets all her nutrition through breast milk when they start her feedings, which the doctor says will be in a few days. For now, I get to swab her mouth with a Q-tip dipped in my colostrum (my milk hasn't come in quite yet). She has a very strong urge to suck for a 26 week baby and the nurses are so impressed! She always latches on to the Q-tip when I swab her. She also tries to latch on when the nurses are suctioning all the secretions out of her mouth so they gave her the cutest little preemie pacifier! Overall, things are looking really good and we're off to visit her again!
After the good news on Thursday I was not expecting what happened but Cameron Jane Brunner made her arrival today 9/24/2011 at 1:46 PM by emergency c-section. 2 pounds 2 ounces and 13.4 inches long. She is so precious. I suddenly went into active labor last night/this morning and they tried every drug they could to stop it as a last resort but unfortunately nothing worked. I was dilating very fast and they had to get her out quickly because she was breech. Baby is doing well on a ventilator which is to be expected at her age and is stable in all other areas. We haven't been able to see her very much today but I am already so in love :)
So my ultrasound today revealed that my cervix has not changed since my last ultrasound two weeks ago!!!! I literally can not believe it... I don't understand how it just stopped progressing. The high risk doctor believes that I will make it to at least 28 weeks which is when he said the critical part of the pregnancy is over. Even better, he said about 60% of people under these circumstances will deliver a full term baby at 37 weeks or later. Say whaaaaaat????? But obviously 40% deliver premature babies and there's still a chance I could suddenly go into active labor today or whenever. I will probably go home at 34 weeks if I haven't delivered yet so 4 weeks down, hopefully 8 to go!! I had myself all prepared for bad news and I got best case scenario. I can't quite wrap my head around it, I'm just totally shocked. I really, really thought I would be much further dilated. Oh well, I might not understand it but I'll take it!!!!! :D
WOOHOOO!! 26 weeks :D I'm so relieved to have made it to this point. No other updates but my doctor did end up scheduling my ultrasound for Thursday so I'll post about the results of that at some point during the day.
I forgot to update yesterday because as usual nothing happened. Tomorrow at midnight I will be 26 weeks :D I can't wait!! I've finally reached (almost) the major goal. I was really bummed though because yesterday morning I failed the first gestational diabetes screening and had to take the longer test this morning. I was so anxious about the idea of being high risk yet another reason and adding gestational diabetes to an already overwhelming situation. Anyways I took my 3 hour test this morning and my doctor called to tell me the results were totally normal =) So all good news yet again! I like this trend.
I'll update late tomorrow night when I'm officially 26 weeks!!! Unless of course something else happens first but let's hope not! Oh and one more thing, my doctor said my u/s won't be until Friday which I was kind of bummed about since I thought it would be Thursday but oh well.
No action again today. Contractions were good and nothing out of the ordinary happened. I'm about halfway through week 25! Really the only interesting thing that happened today is they started me on daily non-stress tests for the baby. These are pretty standard for any high risk pregnancy past 25 weeks just to make sure baby is happy and healthy in there. It traces their heart rate along with their movement to make sure they are not under any stress. The older the baby is the more they are expected to have certain patterns in their heart rate. They did one at 22 weeks and the nurse that day was so impressed with little Cameron's "tracing" saying she never sees one that strong at 22 weeks. Then they did my first daily one today and again the nurse said that she doesn't ever see such a mature tracing for a 25 week baby! I don't know how much I should look into it but it's nice to think that maybe Cameron's a little ahead of the game! She is just such a strong and active baby so that has to be a good sign =)
No news. It's the weekend again so go Bucks and Browns! Before I know it the weekend will have flown by and I will be more than halfway through this week cruising into that 26 week milestone :D Slowly my anxieties are beginning to fade a little bit, still overwhelming at times but not quite as prominent. I'm beginning to feel some excitement again about the idea that we could meet our little girl any day! It's not how I would have wanted it to happen and as scary as a preemie birth is I just can't help but smile at the thought of finally getting to see her little face!!
Just another boring day. I don't want to get ahead of myself but I am SO sure that I will make it to 26 weeks, I just know it. I know labor could come up totally by surprise but I can't see it starting within the next week. My contractions were really calm again today and baby Cameron must have been training for some sort of boxing match. Also I've officially been here for 3 weeks. I can not believe that I literally haven't stepped foot outside of this building for 3 weeks! As slow as some days may feel, looking back time is actually kind of flying and if I'm lucky I won't be stepping outside for at least another 3 weeks before Cameron's arrival!
I'm 25 weeks wooo!!! Now onto the next milestone of 26 weeks. Every doctor I've talked to marks this one as the biggest milestone. Survival rates stop increasing very much from week to week after you hit 26 weeks because it's already so high there's not a whole lot of room left for it to increase :D
My contractions continued today on the same calm path that they have been. I'm halfway from my last cervix check to my next one. Like I said they will only do it every 2 weeks because they don't want to introduce infection and/or irritate my cervix. I am DYING to know what it is doing but I will have to just wait it out. It's good though that they're not checking it because if they were it would mean something of concern happened to make them check it early. So yet again I have to remind myself that no news is good news but the wait just kills me!!
On a side note my doctor told me I'll be taking the dreaded gestational diabetes test Monday morning. One perk of being in the hospital is I don't even have to get out of bed for it! Sometimes it's the little things in life :)
So in a little less than 24 hours I will officially be 25 weeks!!! I run on hospital time now so a new day starts for me at midnight, I don't wait until morning anymore. It feels like such a relief to not be just barely on the edge of viability like she was at 23/24 weeks. She is entering a much safer zone and will continue to be safer and safer as I wait this out. Even though our confidence is increasing in the outcome, I still struggled today with feeling like I can't get excited about this pregnancy the way I used to. It makes me sad that I don't look at baby stuff online or think seriously about plans for the future with her in it anymore. I don't think I'll let myself be excited the way I was before this all started until the day we are actually bringing her home.
On a happier note my doctor came in as usual today and she just seems so pleased with my progress (or lack thereof). Not that she checked my cervix or anything but just the fact that I have noticed no changes in my body at all is bringing optimism. Today was another very good day as far as the contractions go. I don't understand why they've taken a turn for the better but I'll definitely take it. Hopefully we will see a positive result because of it at my next cervix check.
Anyways have a good day and see you at 25 weeks :D
No news from today :) Things are still slow and boring. Yesterday's contractions never got too bad and they were slow again today. Hopefully this means that things are just slowing down in general and it's not some kind of "calm before the storm". I keep worrying that as soon as I get really comfortable with how slow they have been, one day out of the blue they will get bad and things will take a turn for the worse. Worrying won't change anything about the future, it will only make the present more unpleasant so I need to just stop and focus on each good day being another small milestone. Easier said than done but I can try!
So it's about 5:00 on Sunday evening and the weekend is almost over. The Browns just lost in typical Cleveland fashion but other than that things are fine here in the hospital. My contractions have picked up a little bit but not like they were last weekend so I'm trying not to get discouraged. I always have good days and bad days and I just need to remember that.
Cameron is doing very well, she is an amazingly active baby. Her movements are usually uncomfortable for me at this point but that's good because it means she's growing big and strong!! She's gotten in the habit of not letting me fall asleep at night too, I just have to wait it out until she falls asleep first which is fine by me. I love any reminder that she gets stronger every day she stays in.
One of the neonatal nurse practitioners came to talk to Josh and I for a long time yesterday about what we can expect from this point on. She went through all the problems they encounter with preemies in each individual body system. It was a little bit overwhelming but in general the expectation is that although they will almost definitely hit these setbacks most are treatable and the baby will eventually overcome. The nurse practitioners and the NICU doctor I've spoken to feel pretty good about survival at this point which is encouraging but they want us to have an understanding that things can and do go wrong and it will be a really rocky road. Nothing is guaranteed but now that I've hit 24 weeks and am getting closer to 25 they are talking to us like we can finally have high hopes for the final outcome. It's scary to just trust them and allow ourselves to believe things can workout. Having everything fall apart the way it did 3 weeks ago makes it really hard to just let yourself believe in the good outcome instead of the bad. Anyways, like I said as overwhelming as her talk was at times it was actually more encouraging than anything. It's still so scary but I feel like I can finally breathe a little bit easier.
Hope everyone had a good weekend and has a good work week!
All of my updates will be in the journal entry section. Like I said, I will hopefully update every day even if just to say that nothing has changed which on most days will mean best case scenario :) No news is good news but I want everyone to feel like they are current on everything. I will try to be as candid as possible so as not to leave out any information. If you want to read the full background, click on "My Story". Click on "Journal" for all journal entries, although the newest ones should show up on the front page. Feel free to ask questions if you'd like through e-mail author on the right. For now I will be posting on any changes in me (specifically any sign of active labor) and my bi-weekly ultrasounds.
As for an update, I guess it is after midnight on Saturday September 10 so technically I'm 24 weeks 2 days with no noticeable changes in me since my Thursday ultrasound findings. Contractions have been abnormally infrequent these past 5 days which is very encouraging. Last Saturday/Sunday were bad, which could very well be when a lot of the dilation happened so hopefully this weekend goes better. This is the longest string of good contraction days I've had since this all started so I'm feeling good. On another note, football season has officially started, go Buckeyes and Browns!!