I have been a Posting Fool!

So I know I have just posted on my blog. I have been updating pretty regularly actually compared to my normal. But I posted mostly facts.

Now I am going to post some thoughts.

This has been a roller coaster of a ride...this thing called being a mom. The first time around I felt like it was easy - I had a daughter who was growing well, a pretty great baby whose only downfall was crying...a lot. But she was so cute I could handle it.

Than I got pregnant with my second. I loved every minute of it just like the first. But I was living on the edge. On the edge of will I be having her early? Will I be able to go back to work? Will I ever make it to term?

And I got close...4 weeks early just like the first. She was on the verge of being concerned when she was born. She was only for observation but just enough to worry me with her breathing, her sugars, her bilirubin, and her head. But never enough to worry the doctors.

Than her head started growing...quickly! And the doctors were worried. The tests were negative, but I was still worried. And we looked at her head 4 times with different tests - all pretty much the same - enough to be a little concerned and follow but not enough to do anything.

Than her breathing became an issue. She was holding her breath at night, she was snoring, she is constantly getting sick, and now we are working her up for asthma. Again, not enough to really worry the doctors, but just enough to worry momma!

And now we have this tiny thing called a PFO. I went in to cardiology thinking we would hear that her heart is perfectly normal - or rather perfect! Instead, we heard that she has a tiny whole in her heart. Again, not enough to worry the doctors, but enough to worry her momma...again.

Don't get me wrong. I am SOOO very grateful that everything we have done has not found anything serious. I just wish that every doctor we went to see would not find something tiny that we still have to monitor. Because a "it's essentially normal but we have to monitor" is not good enough for a mom. I want to here "it is normal and there is no concern."

I hope you don't think I am complaining. I hope you don't think I am not grateful for the fact that I have two beautiful girls who are growing and interacting and developmentally perfect. This is, however, my blog where I can write how I feel. And that is how I feel.

Still waiting on the sleep study and again...I am worried we will hear something is wrong. Something else to make me worry that one of these days the rug is going to be pulled out from under me and something will actually be really wrong.

On an end note - I love my family and I always will. I love being a mom, even when I am on the uphill sweep of this roller coaster.

Brooklynn's Cardiology Appointment

Today we went to see Dr. Bingler in cardiology. They started with measurements - she was 81.2 cm long, 12.2 kg, and her blood pressure was 107/66. I asked about the blood pressure because it is the same as mine, and they said it was in her leg which is usually higher and also that the dynomaps that they take them on are not 100% accurate. Okay...I guess I am okay with that answer.

They did an EKG which I am assuming was normal because they did not say anything. The doctor came in, said he heard a soft murmur, and therefore wanted to do an echo. We did the echo, and found out that she has a 3-4mm PFO (patent foramen ovale). This is a whole that is there in utero to help with blood flow from the placenta to the lungs in the fetus, but should close after birth. Hers did not. He said that there really are no complications that they know of for sure with PFOs. If they are large enough it can cause respiratory infections (which he said it sounds like hers are not necessarily from here - but it could have complicated things when she had RSV as a baby and required oxygen). He said since this is the first time we have seen her, we don't know if her PFO was larger when she was a baby, and therefore it is hard to determine if it is closing or staying the same size. They will be following her again in 9 months with another echo to see if the PFO has grown larger as she gets bigger, has gotten smaller, or closed.

I guess there is some research out there that this possibly might increase the chance of her having a stroke when she is older, but there is such conflicting research that it is not sure if this is true. He said hopefully in 5 years we will know more and that will be beneficial for her if it is still there to know this research. He said there is no risk at this time of a clot, and if it was less than 2mm they wouldn't even follow it any more. So let's just hope next time it is closed. Makes me a little nervous for a long term outcome, but hopefully the research is not true!!

We are still waiting on the results of the sleep study...

bp photography

I am starting a new blog to display my photography work. If you are interested in being a member please let me know.

It is http://photographybybp.blogspot.com.

Either join just to be able to look at the pictures (there will be lots of the girls I am sure), or feel free to contact me for a session.

If you want to book a session contact me either through here, facebook, or e-mail me at kityhawk13@aol.com.

Brooklynn's Genetics Appointment

Today we had our genetics appointment (finally after waiting for 3 months!) It was a great appointment. They took our family history, family tree, and B's medical history. They measured our heads and sure enough - we both have large heads (not to the capacity that Brooklynn does). They did all sorts of measurements (measured the space between her eyes, her ears, her hands, her feet), took her height and weight, measured her head, etc. etc. Dr. A determined that based on her growth being so perfect and her development being on point, there is no concern or reason to do any more tests. She said based on what she had been told she was prepared for us to have her chromosomes drawn, but after meeting her, and seeing how cute she was (her words not mine) :) she determined this did not need to happen. She is saying that we will label it "familial macrocephaly".

She did say, however, that if there were ever any concerns that popped up (she stopped hitting her milestones, her growth halted, we found something medically wrong) to call and they will see us again. If we find out anything at cardiology to notify them and they will probably want her seen. I have a feeling our cardiology appointment will go smoothly as well - she only has an intermittent murmur and she is growing leaps and bounds so I don't see how it could be anything wrong.

Other than that we are doing really great! Had a wonderful weekend taking pictures of the girls and going to the pool and enjoying the SUPER hot weather!! Still waiting on the results from the sleep study, hoping to hear about that soon!

Brooklynn's Sleep Study

Brooklynn had her sleep study last night and it SUCKED!! We arrived at 7:15pm, and they started putting wires on her by 7:45pm. It took them 45 minutes to put them on and the whole time she was crying. Literally the only thing that calmed her down was the movie Curious George. Thank heaven for Child Life because they found us a portable DVD player and the movie!! She finally was able to lay down and fall asleep by 8:45pm. Unfortunately, the whole night either she woke herself up or the RT would wake her up because of the wires falling off. I bet it was probably about 10 times throughout the night she was woken up. She looked like a war victim! There were probably 20 wires going from her head, one on her chest, one on her back, 4 on her legs, a sat probe on her foot, and two bands that wrapped around her chest and abdomen. This afternoon she is back to her old self and smiling and playing! So I guess it did not effect her too much!

They told us it takes 2-4 weeks to have the results read. The RT however said that he thinks ours will be read earlier than that because he is putting it on the top of the list. He said she snored so much throughout the night that it worried him. Strange, because I felt like other than her crying and seeming exhausted from that, I felt like she was quieter than normal. I guess we will see how it is interpreted. I will be really freaked out if they show she is doing something really bad because she was 100x worse prior ot starting the Prevacid back up.

Thank you to my mom who watched her this morning so I could sleep! Here are some pictures of her adventures last night.

Brooklynn's 15 month appointment

We went to see Dr. N. today for Brooklynn's 15 month appointment. Measurement wise she is doing okay. She weighed 26 pounds, which is actually down in the graph, she is at 80% (down from 90% which is still good but she felt it was due to her coughing so much the last 3 weeks. Her height is on a steady growth at 70% at 31 inches. Her head didn't grow!! It was at 21 1/4" which is flatlined from last time! Yay! We talked a lot about differnt things, including whether I should be concerned about her genetics appointment. She stated she didn't feel like she had anything in her head disorders wise and the ones it seemed like the genetics were concerned about based on conversation that the results all came back. She said since she is on point developmentally we shouldn't be too worried. Developmentally she is on point. She is starting to walk on her own - letting go of things and walking between objects (sometimes up to 10 steps). She points to what she wants, she says 3-5 words (no, done, more, hi, bye), and with food she is doing amazingly. We need to work on getting her off the bottle (which I promised we would work on after her sleep study), and we need to work on stacking blocks. I asked about working her up for allergies, which Dr. N. stated she likes to hold off until 2 years old so we dont get false negatives. Shots we are holding off for 2 weeks until after her sleep study and other appointments. Assessment wise - her ears look great. She has no murmur at this point, but we still need to see cardiology to rule out structural defects. When she cries she gets tight and does not have much air movement, but no wheezing, and she still has a nasty cough. So that brings us to our next topic....working her up for asthma. For the last week we have been trying to use albuterol treatments when she has coughing fits per request of the Sleep Clinic Doctors. It was really hard to tell if the treatments helped her because she always coughs a bunch after a nap, and than gets better. They seemed to help a little bit but it was hard to know. We are still wondering why she has this long term cough. It goes from a tight sounding cough to a loose cough, and she will have fits of up to 15 minutes after waking up. So we were prescribed flovent to try giving her twice a day for two weeks. If she improves, than we will be calling it asthma and doing an asthma action plan. Tomorrow night is our sleep study - so I am sure I will be posting pictures and information about how that goes! Isabella is becoming more of a little person. She LOVES performing - infact she performed her slippy fish song for the doctor today. She loves art. She is obsessed with her new swimsuit which she wears every other day. We have not gone to the pool yet thinking it would be a little too cold still. Hopefully soon.She found her new favorite movie - Tangled. It is super cute. Today we went ot get ice cream and Izzy was feeding Brooklynn ice cream and water. It was SOO cute! She is such a little momma.

Next three weeks of appointments

We are starting our countdown for appointments for Brooklynn this next few weeks. On Tuesday we went to the sleep clinic for evaluation of her sleep patterns. They informed me that she has the potential to have an asthma/reactive airway disease diagnosis due to how sick she gets and how frequently she has a cough and requires some sort of treatment. We did start her on Prevacid 3 weeks ago to see if her nighttime symptoms could be caused by reflux (breath holding, snoring, tossing and turning) and the reflux could be causing more swelling. It has seemed to help substantially, but she still has minimal snoring, occassional stridor, still wakes up about 2-4 times a night, and wakes up coughing quite a bit. Due to all this they felt like she needed a sleep study, which will be done on June 2nd. We have to be there at 7:15, at which time they place 20+ wires on her head and body and expect her to sleep through the night...that ought to be interesting!! We also learned something new - she has a high arched grooved palate, which might be some of the problem. It means her airway is smaller than most in her mouth, which if she has any swelling in her throat (aka swollen adenoids and tonsils) this could potentially make things worse. She is also a mouth breather, and when she coughs she sounds tight. I was thinking - great just one more thing to add to the list when we see genetics...

On Tuesday night we took her to her pediatrician due to her having a cough and being REALLY irritable. They tried giving her albuterol nebulizer treatment, which she screamed and hollered the WHOLE time and did not seem to improve. However, we were told to try to albuterol breathing treatments at home if she has a coughing attack and see if that helps. If it works 2-4 times, than we will be diagnosing her with asthma. Yikes. The doctor did not hear a murmur this time, which she said is encouraging.

Next week we go for Brooklynn's 15 month appointment on Wednesday, and than Thursday night is our sleep study. On June 6th we go see genetics and on June 8th we see cardiology. So we have lots of unknowns that will hopefully be answered within the next two weeks! I am REALLY nervous but really glad to have that chapter done. Let's just hope they all clear us and say that everything is perfectly normal and we can start living without doctors appointments all the time!!

Well there is my update on Brooklynn!! Izzy finished her first year of school last week, and she loved every minute of it. I have a feeling next week she will start realizing she is not seeing her friends and her teacher and will be really upset. But we will be going back to that school next year so hopefully she will have some friends in her class!