Wednesday, December 29, 2010
According to the March of Dimes, 1 in 8 babies is born prematurely. Of those only 6% are born at 28 weeks or less. No statistics were shown for the percentage of babies born at 24 weeks specifically, but I would imagine it is somewhere around 1%. I scoured the internet looking for this statistic, and I don't think it exists.
According to the data from the National Institute of Child Health & Human Development, Camdyn had a 49% chance of survival and only a 35% chance of survival without profound neurodevelopmental impairment. Cade had a 71% chance of survival and only a 54% chance of survival without profound neurodevelopmental impairment. These charts were based on birth weight, gender, twin gestation, and ability of mother to take steroid injections prior to delivery which we were able to do. These charts were developed in 2003, so the numbers may be slightly higher now. According to both of their MRIs and their development to this point, they will not have profound neurodevelopmental impairment, so we can count our lucky stars that we somehow managed to fall in the 35% for Camdyn and the 54% for Cade.
The world record for Most Premature Twins (all surviving) is 22 weeks 1 day. Our twins were born 2 weeks later than this for which we are very thankful. That is not a record that anyone wants.
If the fFn test that your obstetrician takes when you are pregnant comes back negative, there is a less than 1% chance of having a premature delivery within the next 2 weeks. Interestingly enough, I had a negative result on the fFn test that my ob did at 23 weeks and had the babies one week later. I am the less than 1%!
Fun twin facts - The chances of having naturally occurring fraternal twins is 1 in 90. The chances of my daughters having fraternal twins is 1 in 17. I hope and pray that they do not have twins after all we have been through! Maybe there will be a way to make sure that only one egg is releasing at a time when they are ready to have children.
Just thought I would share some of the statistics I was able to find.
Sunday, December 19, 2010
Wednesday, December 15, 2010
Tuesday, December 14, 2010
Cade had his GI appointment. The GI said that we could wait on getting the g-tube but Jim and I both feel that Cade is not going to learn to eat and drink totally by mouth in the next few months, so we have opted to go ahead with getting the g-tube. We just want Cade to be more comfortable. I do think he is going to learn to eat soon, but I think learning to drink is going to take a lot longer. We take him in to get a pH probe this week, and then we schedule a consultation with the surgeon before scheduling the surgery.
We started with rice cereal this week for both of the babies, and I have been surprised at how "good" they are doing. They both spit/drool a lot of it out, but they are eating! Cade actually takes the cereal in his mouth, rolls it around, and swallows it! He gets very, very tiny bites, and a lot does roll out, but he is swallowing food! He is now accepting the bottle in his mouth and taking a few swallows of milk, but he often still coughs a lot with it. We are scheduling the OT to come out again this week. We were kind of on a therapy hiatus for two weeks. The first week was because I was just too tired of therapy and appointments and needed a break, and then last week our schedule was so full of doctor's appointments there was no time left for therapy.
In November, we had 27 doctor's or therapy appointments. Last week, we had 6 appointments. I have no idea how people with full time jobs and preemies do this. Taking the babies' to appointments is a full-time job. When we eat breakfast, Brenna asks me, "What doctor are we going to today, mommy?" She doesn't mind going; she just likes to know the plan. I think our number of appointments is going to start decreasing. We don't have to go back to the pediatrician for 6 weeks now, and we don't have to go back to the cardiologist for a year. (Camdyn has a small valve that is open in her heart which we were told several people have; they just don't know it. It is not a problem at all. Overall, it just means that she can not be in the military or go scuba diving, and after all we have been through, those two things do not worry me very much.) We will still go to the pulmonologist monthly through March for their Synagis shots. Cade only has one more week to wear his helmet too. He only has to go back to take final pictures. I know he will be happy to be done wearing his helmet, and I am happy that he has a normal looking head now. I really don't mind taking the babies all over the place for appointments because I know that it is helping them. I think of myself as a "doctor mom" instead of a "soccer mom".
Tuesday, December 7, 2010
Tuesday, November 30, 2010
I came across this mom's blog who unexpectedly gave birth at 24 weeks to her son Bryce (www.brycemoline.blogspot.com). I usually have plenty of my own words with which to fill my blog, but her words spoke so truly to our own situation that I felt compelled to share it on here. The description of placing the ng tube is exactly how we feel.
" We've also had some equipment to contend with. There was the oxygen concentrator that hummed all day and night while Bryce was tethered to it for the first months we were home. And the tiny but mightily awful NG tube. NG as in nasogastric tube. As in you hold him down while I shove this tube down his nose and try not to land it in his lungs but rather in his belly and then let's make an educated guess as to which it did land in, all while he screams and I cry. But back then we were more accustomed to how unusual our lives were. Everything in our lives was upside down. We didn't live at home and then we did but it didn't feel like home. Our old friends were new friends and our new friends (nurses, doctors and therapists) were old friends. Upside down was very much right side up to us at that point.
We discovered that if everything seems like its falling apart it probably is but if you try hard enough, cry long enough and pray loud enough you can probably survive it.
And slowly but surely our lives began to resemble those of other new parents, despite us having been parents for nearly half of a year. We returned to home and then to work, we went through the day on only a few hours of sleep but were rewarded a million times over by the joy of a baby finally in our home, in our bed, in our lives and forever in our hearts.
Then around thanksgiving Bryce smiled and our worlds changed forever. Every day every thing that we did was to illicit a smile from his sweet face. And everything else was to pass the time until we could return to his smiling face."
When people tell me, "I don't know how you do it," I usually answer, "neither do I, but we have no choice, and we love our babies and feel so blessed to have them that we just do it." I love that she writes that if you "try hard enough, cry long enough and pray loud enough you can probably survive it." I still break down when I hear the song "Before the Morning" on the radio. It instantly brings me back to our days in the NICU, and I realize that not only have our babies survived the unimaginable but so have we. Jim and I are stronger because of this whole crazy experience. We are a team; we have to be.
Our lives are just now beginning to feel like the lives of other new parents and our babies are almost 8 months old. Since the babies only go to doctor's appointments, we don't encounter a lot of people; however, when we do encounter others, it seems that strangers feel the need to remind me that we are not quite like other new parents. One lady in the waiting room asked me how old they were and when I told her they were almost 8 months old, she looked shocked. She then asked me how much they weighed. I told her their weights and even told her they were born extremely early and weighed 1 lb. at birth. Her response? "Well, my 3 month old weighs 18 pounds." Thanks for sharing lady! Of course, we get the silent stares in the elevator as people try to stare at Cade's ng tube without me noticing. I really want to say, "It's an ng tube; quit staring. If you have about 2 hours, I can share the whole long story with you - otherwise, mind your own business!"
Then, after all the frustrations of appointments, therapies, feeding challenges, etc., the babies awe us and we have to just take a step back and marvel at the miracles we have been given. Cade has started to smile a lot more now. When I walk into the room, the sweetest grin creeps across his face and he looks up at me with eyes that say, "I know you Mom, I love you, and I am so excited to see you," and in that instant, all that matters is that my baby boy loves me. Last week, we were blessed to hear Camdyn's first laughter. It was the sweetest, most precious thing I have ever heard. Brenna was dancing in front of Camdyn, and I guess Camdyn thought it was really funny because she just started chuckling and giggling. When you have to wait for each milestone for so long, it really is all that much sweeter. I know that many more days of frustration and challenge lie ahead, but I also know that many more days of complete and pure joy do too.
Sunday, November 28, 2010
We have been working with Cade on feeding for quite some time now, and it doesn't appear that he is making any substantial progress. He will now accept the bottle in his mouth and even take a few sucks/swallows; however, he usually starts coughing and/or gagging when he does swallow. At this point, we don't know how much is due to the oral aversion and how much is due to the nasal gastric tube which sits at the back of his throat. Every time he swallows, he can feel the tube and it initiates a gag reflex. I have come to terms with the fact that he most likely needs a g-tube. Of course, I wish that he could just eat, but that doesn't seem to be in the cards for us at this time. Mostly, I just want him to be comfortable. I feel like we have put forth a lot of effort in getting him to eat and trying to avoid having to get a g-tube placed. We meet with the GI doctor in two weeks. I wish it were sooner. I am just ready to know if that is what they think he needs and if so, when it will happen. He is just so uncomfortable, and it breaks my heart every time he gags on the tube. We are hoping that after he gets the ng tube out of his nose that he will make better progress with eating. I am so frustrated with all of the feeding challenges that both babies have that at times, I just want to throw up my hands and say, "Give them both g-tubes. We'll let them learn to eat when they are 5 or maybe never!" After I take some deep breaths, I remember that I am just so thankful that they are here with me, and I will deal with whatever challenges come our way. With all of the issues of prematurity, we are fortunate to only be dealing with these issues as difficult as they are. I know that Cade's Christmas wish is to have the ng tube out of his nose. We'll just have to wait and see what the GI doctor thinks.
Wednesday, November 24, 2010
Each year at Thanksgiving, we are reminded to be thankful for all we have. We usually say things like, "I am thankful for all my family and friends," and there is no doubt that we are thankful, but this year, I need a much more powerful word than "thankful" because "thankful" just doesn't begin to describe how I feel. We have witnessed countless miracles since April 5 of this year. The fact that both of our babies are here with us now and are doing well is nothing short of a true miracle. We feel so blessed to be given these little miracles who add so much joy to our lives and who remind us to be thankful every day, not just on Thanksgiving. We can never thank all of those who supported us through this time adequately, and how can we even beging to thank doctors who have saved our babies' lives numerous times? Somehow, bringing cookies to the NICU and thanking them over and over doesn't seem to suffice. We were showered with support through our time in the NICU from so many friends and family. We were given meals, gifts, donations, and so much more. To all of you who lifted us up when we felt like we couldn't stand on our own, we thank you. This experience has shown us how much we are loved, and we are so much more than thankful. Happy Thanksgiving to all of you!
Wednesday, November 17, 2010
Camdyn - Camdyn now weighs 11 lb. 11 oz. She is still very tiny, but she is following her own little preemie curve. The doctor said that for 7 month olds, she is in the .08%. She is not even in the 1%. She still takes forever to take a bottle, but she is slowly getting more efficient. We are trying them on a 4 hour schedule instead of a 3 hour schedule, and it seems to be working alright. We are hoping that it will work because it gives us two more hours in our days.
Cade - Cade now weighs 16 lbs. 2 oz. (almost 5 lbs more than Camdyn). He is huge for a preemie. He is actually in the 12th percentile for all 7 month olds which is incredible since he should really only be 3 months old. It is easier for him to gain weight because he doesn't have to exert energy taking a bottle although he probably exerts more energy fighting the bottle than he would if he could just take it. He hasn't made much progress with eating orally. He takes his pacifier very well, but he hates the bottle. We have tried just about every type of bottle, and it doesn't make a difference. He is still getting therapy to work on feeding three times a week. He has a GI appointment at the beginning of Dec. to talk about the possibility of needing a g-tube. As much as I don't want him to have to get it, I think that is where we are headed. With all things considered, I know this is not a huge deal and that things could be much worse, but I just want him to be able to eat. I feel certain that it will happen in time, but I am not a patient person. I want it to happen now! Cade also got his DOC band to reshape his head last week. It cost us $3500, so it better work! I can already see a little bit of change, so that is promising. He looks so cute in his little helmet.
Thursday, November 4, 2010
Camdyn and Cade are 7 months old today. I don't have current weights on the babies because we don't have our pediatrician appt. until next Wed. We are finally settling into our new house and getting all of their therapy and doctor's appointments lined up. Hopefully, we will at least soon get into some sort of a routine. We are having so much fun with them. I just love watching Brenna play and interact with them. Although, she is getting quite frustrated at Camdyn's new-found voice. Camdyn now lets us know very loudly when she is unhappy. While I am celebrating that her little lungs can do that, Brenna just wants her to be quiet. She told Camdyn yesterday, "If you can't be quiet, you are going to have to go to your room!" A few days ago we were in the car and Brenna asked me to turn up the radio because Camdyn was being too loud.
Cade - Cade is getting his helmet next week. I hope he doesn't hate it too much. It ended up costing us $3500, so I sure hope it works. (Thank you all who donated money for our babies. Some of the money raised is going to his helmet.) Cade will start seeing the occupational therapist from the private company three times a week to work on feeding as well as the speech therapist from ECI once a week. He also is seeing a physical therapist from the private company once a week and a physical therapist from ECI once every other week. The new ECI program seems to be much better than the one we were in which makes me very happy. They sent the physical therapist to evaluate them, and she actually got down on the floor and worked with them unlike the previous program. Cade is making progress, albeit very slow; it is still progress. He was gagging on his pacifier a lot. Now he loves his pacifier. Then he was gagging as soon as the nipple of the bottle would touch his lips. He now accepts the bottle in his mouth, but as soon as he starts to suck and gets liquid in his mouth, he freaks out. He does manage a few sucks and swallows each time but a very small amount. We will be starting the intensive feeding therapy next week, so I hope to see a lot of progress.
Camdyn - Camdyn has, as mentioned above, become quite vocal. I'm pretty sure she is going to have an attitude very much like her big sister and her momma. Fortunately for Daddy, Cade is very laid back. Camdyn is getting speech therapy once a week from ECI to work on feeding as well. Sometimes she takes her bottle beautifully and sometimes she flat out refuses. It is very hit or miss with her. Unfortunately, we can't just let her decide when she wants it and when she doesn't. She has to grow. I am excited to see what both of their weights will be next week. Camdyn also qualified for physical therapy with ECI two times a month. She is beginning to scoot (not really crawl). It is very cute. She wants to be on the move. She just isn't strong enough yet. I don't think she realizes that she is little bitty.
Sunday, October 31, 2010
Saturday, October 30, 2010
We've been unpacking things all weekend at our new house. It is finally starting to feel a little more organized. While unpacking I found some pretty interesting things. When we sold our house and moved into the rental house, I was in the hospital so our family packed us up. I found all sorts of things I had completely forgotten about. Here are some of my interesting finds:
- a bag of unopened scrapbook stickers from Hobby Lobby that I must have bought just prior to having the babies. They were pregnancy stickers and Easter stickers. We spent Easter in the hospital. The babies were born the day after Easter. It kind of felt as if time had stood still. We went in at Easter, and now Halloween is the first holiday we will spend out of a hospital.
- a note that a nurse had written for us showing the babies' weights the first few days. Even though I already knew that after a couple of days Camdyn had dropped down to just 1 lb, it was still shocking to see it on paper.
- a note that I had jotted down (I must have called the NICU and wrote notes to tell Jimmy later.) It said, "Camdyn - 50%, 2.3 mL, arterial line" and "Cade -36%, 2.5 mL, will attempt arterial line again later." The percentages were their oxygen needs and the mL were the tiny amount of breast milk they were getting. That really brought me back, and I am so thankful that we are not there now.
- tiny, precious preemie clothes. Looking back at these clothes, I already can't even believe that these tiny, tiny clothes that fit in just the palm of my hand were once too big for them! It really showed me just how much they have grown.
- My funniest find were the books that I had with Brenna - What to Expect When You are Expecting and What to Expect the First Year. What a joke! I don't think that you can find "Expect to go into labor at 24 weeks" anywhere in the first book, and I'm pretty sure that not one thing would be applicable to raising micro-preemies in the second book. Every preemie mom would like to have a neat and tidy book to sum up what to expect in the first year; however, in the preemie world, all you can expect is to not know what will happen, when it will happen, or if it will happen. (I quickly tossed these books into the donate pile, laughing as I did so.)
We are so excited to get to finally spend a holiday out of the hospital. Since we went in at Easter, the babies spent Mother's Day, Father's Day, and July 4th in the NICU. Then we were back at the hospital with Camdyn on Labor Day, so tomorrow will be our first holiday together as a family! I can't wait to dress up the babies and Brenna for Halloween. I will be sure to post some pictures of my adorable children soon. Happy Halloween to all of you!
Thursday, October 28, 2010
Wednesday, October 20, 2010
While I don't have to worry about them as much as I did (Thank God!), our schedules seem to be getting more demanding than less. My frustration level is through the roof. We are working with Early Childhood Intervention, a state program that provides therapy services to children under 3 years old who qualify. After about 3 weeks of phone calls, we finally now have a speech therapist who works on feeding issues with both of the babies and works on Cade's oral aversion with him. She is great and has helped a lot. The coordinator is not so great. When I asked about getting physical therapy services for the twins, she told me that she didn't really think they needed it without ever having a physical therapist even touch them. I had to tell her that they are 24 week babies. Of course, they need it! They, at least, need to be seen by a physical therapist to determine if they need it. I had to seek private physical therapy and discovered that Cade has torticollis, which means his neck muscles are tight causing a right side head preference. She has been working with him on this and says it should be better in a few months. When I told the ECI coordinator about this and asked again if they could send us a physical therapist, she told me that I shouldn't expect the babies to do what a 6 month old baby does which I already know. Does she really think I don't know that ?!? Then she told me that a way that I could save on co-pays with the private therapy was to have them just see Cade and then do the same things with Camdyn. I wanted to scream, "They are not the same baby. They are TWO different babies with different needs." So frustrating! The most frustrating part is now that we are about to move into our new house, we have to completely change ECI programs because we will be in a different county. I'm sure I have a ton of frustration ahead of me. This means that we are going to lose the speech therapist who we like and who knows how long it is going to take them to get us a new one. I have found an occupational therapist through a private company that is going to see Cade also two times a week to work on feeding.
I posted a while back that I wasn't going to complain about the babies not taking their bottles. I had overheard so many parents in the NICU complaining that their babies wouldn't take their bottle when I didn't even know if my babies were going to live. I said that if we get to that point, I wouldn't complain about it. Well, I want to take that statement back. I had no idea that we would still be dealing with it at this point and it was going to be such a battle for us. I thought they would get it a few weeks after their due date. After all, the other babies in the NICU all seemed to get it by their due date. I was giving mine a little more time taking into account that they were earlier than most. I am so thankful that this seems to be our only major issue; I know things could be a lot worse. So while I am grateful that they escaped so many preemie issues, I can't deny that I feel frustrated.
Camdyn is doing much better. In fact, she is completely off the ng tube !!!! She is working on taking all of her bottles. She still gets very tired at the end, and she is really tired during the night feeds, but she is making a lot of progress. It still takes 45 minutes to an hour to feed her. I hope she will be able to get faster at this. She now weighs 11 lbs. She is doing great in motor development. The physical therapist said she is actually a little ahead of her adjusted age (2 1/2 month) milestones and that she will only need to be seen once a month to follow her development. It is so cute when she stands assisted or pushes up on her hands and looks around because she is still so tiny. You wouldn't normally see an 11 lb. baby doing these things so it is pretty cute.
Cade had another ENT appointment last week. She said that his left vocal cord has drifted slightly more to midline and that the right vocal cord was very active. While that wasn't a significant change, it was still good news. She said that was probably why he was able to pass his swallow study. We have been putting flavor on his pacifier and that has really seemed to help his gagging. He started today with the speech therapist trying to take a few swallows from a bottle. He managed to take 2-3 swallows, and when he did this I cried as if he had just won an Olympic medal. I was so proud of those 2-3 swallows! We were given several exercises to do with him to help build his oral muscles. I am so hoping that this all is going to work. He now weighs 14 1/2 pounds. He will still see the physical therapist weekly to work on his tight neck muscles. This was most likely caused from being in the NICU for so long. We also are going to be getting Cade a Doc band (helmet) to shape his head. This is not a medical necessity, but I want him to have a nice "dome" (as Daddy calls it). It is misshapen from laying on his right side so much in the NICU. He'll have to wear it for probably 2-3 months. Our insurance doesn't cover this, but I still feel like he needs it. His head is very flat in the back and his forehead is more prominent on the right side. If I don't do it, I'll always think I should have. It's best to do it earlier since it is easier to shape the head. After 12 months old, it doesn't work very well. Stay tuned for some pictures of my little man sporting his handsome helmet.
Both babies will be getting their first Synagis shots on Nov. 1st. This is the RSV vaccine. I am going to be able to breathe just a little easier once these begin. If they were to contract RSV, it would be much less severe with the shots. If they were to get RSV without the shots, it would be life-threatening. They have to get 5 shots - one each month Nov, Dec., Jan., Feb., Mar. The shot lasts for about a month. Insurance does cover this which is awesome because we wouldn't be able to afford it otherwise. Each shot costs $2,500. Multiply that X 2 for each baby = $5,000 per month. Multiply that X 5 months = $25,000 in shots! Wow!
So, if you have read through all of this long post, you have finally made it to the good stuff. There is a lot of good stuff. I may have sounded frustrated, which I am, but I am also enjoying my babies so much. We are having a great time between all those feeds!