Thursday, February 28, 2008
Lindy - 10 pounds 4.5 ounces
Will - 13 pounds 3 ounces
Both have gained quite a bit since they were last weighed. I actually thought Will would have weighed more than that. He feels bigger. Or maybe I'm just a little weakling!
I'll correct myself while I'm at it. The test they are doing detects hearing loss at high frequencies, not low frequencies like I wrote in the last post about her left ear. I was too stunned last time to get much information. This time I had questions and I got a better understanding of everything.
She said that at 90 decibels (which is very loud sounds) she got no response from her left ear. Yesterday she said she thinks she detected a response at 90 decibels on her right ear. But the data isn't reliable so we can't say for sure.
I just don't know what to think right now. If you remember from the last test, Lindy has to be asleep and not moving. Lindy did awesome. I held her for 2 hours and she slept at least 1.5 hours of it. I had to rock her in the beginning to get her to go back to sleep. She couldn't have been any better. So I don't understand why they couldn't get repeatable waveforms. They have to tape these little electrodes onto her head. Two are behind the ears. I really wonder if the electrodes were making good contact with her skin. After the test was over I looked and it didn't look like one was.
So the audiologist felt like we got good data. HUH???? I said to her, "I thought you said it wasn't reliable." She felt like we had a starting point and that we had enough information to order hearing aides. They can always be adjusted once she has the test done under sedation.
Our next obstacle is getting the hearing aides. There is going to be a problem with insurance and their office not fitting the hearing aides. They are in the process of getting it all covered but they usually send people over to this other guy in town. Wouldn't you know, he's not doing it right now either. So what are we to do????? The audiologist was going to check with her supervisor to see the time frame for them getting it covered. If it is going to be too long then she said they would have to refer us to the other hospital in town. The way she said it she didn't seem to like that idea. But you know what? I'm going to go to the place that can get her the hearing aides the fastest. So what if it's the competition. We are talking about Lindy's ears and her speech development. I'm not waiting around for their insurance issues.
I'm just not convinced she can't hear. Is it pure coincidence she jumps at noises? We swear she has woken up when Will was in the bouncy seat next to her crying. We know there is hearing loss but we aren't convinced both ears are as bad as they say. I guess the best info will come from the test under sedation and that can't be for at least 5 more weeks. Then the sedation people have to say she is okay to go under sedation.
We both just felt frustrated last night because of the results and the insurance issues. Can you imagine hearing aides and glasses on my poor little child? Her head just isn't that big! It will be a never ending battle to keep all that on her face. And her nasal cannula? We aren't going to know what Lindy looks like under all of it!!
On a good note, she's been smiling like crazy today!
And because Will doesn't get much time anymore because he is basically a boring normal baby, I'll go head and brag on him a bit. For a week and a half he has slept through the entire night! We feed him around 7:30pm and we wake him up at 7am! What a kid!!!
They both get weighed today so I'll have new weights later today. Will gets his Synagis shot too. Yuck!!
Tuesday, February 26, 2008
The OT (occupational therapist) came to the house yesterday and said Lindy is doing well. She seemed pleased with her progress in the three weeks since she has been here. She really wished Lindy would take a pacifier but she cannot keep it in her mouth. We have been using the green ones they sent home from the hospital. She kept trying with her and really couldn't figure out why she pops it out after a few sucks. She said Lindy has a great suck. So finally we tried one of the ones we've been using with Will and she did so much better! I had tried them before and they seemed to choke/gag her. Not yesterday though! She went to town on it yesterday and I swear she didn't cry the rest of the day after she got that paci. She was so content all day and night! It was awesome!
Will on the other hand must have thought it was too quiet in the house and started making up for the lack of noise. He kept getting pretty mad yesterday. He's getting loud too! We had some role reversal in our house yesterday. It was odd! I think Will was just hungry.
Lindy has a big appointment on Wednesday. They will test her right ear to see how much she can hear. Remember last time we got data on the left ear but not the right. Call me crazy but I think she can hear. That makes us think maybe the right is better than the left. Guess we'll find out!
Enjoy some recent pictures. We've (well I have) had fun with the babies wearing new outfits lately!
Lindy was having fun wearing her cannula everywhere except where it was supposed to be!! The nose prongs were behind her ear. Don't tell, but I had her off oxygen that day for about 3 hours! She did great. I put it back on to feed her. I hope we are nearing the end of needing it!
Lindy in her new girly camo outfit. Too cute!
Tuesday, February 19, 2008
Why, you might be asking yourself, is this a problem. Because making bottles in our house is not an easy task. I've got pictures to describe the process.
First one must go to the freezer (or freezers in our case. We have two deep freezers full of breastmilk!) and remove frozen bags of breatmilk. One must find 24 ounces of breastmilk between all the bags.
Then one must defrost said breastmilk. This can take awhile or if you are in a hurry you defrost it real fast with running warm/hot water.
Next, one must measure out 12 ounces of breastmilk into our handy-dandy, official breastmilk measuring cup. (I know, it shows more than 12 ounces but that's because I took the picture after I added other things to it).
Next one must measure out 3.5 teaspoons of Neosure and stir. We are adding this to the babies' milk to increase the calorie content. It is assumed that breastmilk is around 20 calorie. We add Neosure to increase their milk to 22 calorie.
Next one must add the thickener to the milk and stir. Both the babies have their milk thickened. Both babies aspirate on plain breastmilk. The confusing part is that their milk is thickened differently. Will's milk is thickened to a nectar consistency and Lindy's to a honey consistency. What does this thickener look like? I thought you might ask, so I took a picture.
Weird stuff huh? I have little packets that we just squeeze into the milk now; this was a bulk sample we were using. Lindy takes 6 packets and Will takes 3 packets.
Finally one must pour the milk into their respective bottles. Lindy is presently drinking 5 ounce bottles and Will is drinking 6 ounce bottles. Then you repeat the process with another 12 ounces. And then you do it two more times if you are making it for both babies.
When I say 'one' I mean me or Drew. Those darn babies need to start pulling their weight around here and make some of their own bottles!
So now you see how we make milk. It's not a short, simple process. One day we hope to have the babies off Neosure and thickener. Then it would just be thawing milk and pouring it into bottles. That would be so nice!
Our week is going fine. Lindy had her one appointment yesterday with the neurosurgeon. My lovely husband offered to take her to the appointment at 2:30pm. Finally at 3:45pm they saw the doctors. It was a 10 minute visit once they actually saw the doctor. They just look at her and ask questions to make sure everything is okay with her shunt. That's a long wait for a 10 minute appointment.
On a happy note, we fed Will a bottle at 8pm last night and he slept until about 6:30am this morning!! We had been getting him up at 11pm each night. Our pediatrician said to do this until he was 13 pounds. We are positive he is over 13 pounds so we tried it and holy smokes, it worked. I was up at 3am to put his pacifier in but he went right back to sleep. I wonder if it was a fluke?? We'll see tonight! We will continue to feed Lindy at 11pm until she is 13 pounds too. But she sleeps great from 11:30pm to about 6-6:30am. I'll take my 5-6 hours, but I sure would like about 8-10!!
Nana and Papa came to visit for the weekend. It's so sweet to have extra help around here. I hate when they leave! My parents live in Cleveland, Ohio so we don't see them as often as we would like.
Papa taught Will some new tricks this weekend, like how to hold your own bottle! Okay, so it was almost empty and pretty light. We'll be still working on this for awhile!
Is this the funniest picture ever of Nana and Will? Eyeing each other and checking one another out!
Here are a few playtime pictures. Lindy was saying, "Mirror, mirror, on the playmat, Whose the fairest of them all?"
Will and his future best friend, Jack. Poor Jack, he never gets any attention anymore!
Miss Lindy was having a serious conversation with Bliss, the Valentine monkey she got from Mike and Janice. I wonder what she was telling him! Probably something along the lines of, "My Mommy is so pretty." Or something like that!
The babies tried out the BeBe Pod seat today. They weren't sure about it but they looked cute! Lindy has a pink Bumbo, we'll have to get it out too.
Thursday, February 14, 2008
Will is his normal laid back, lovable self.
It's been another busy week. Lindy had 5 appointments this week. Makes the weeks fly by when you are always on the go.
Monday started off with a follow-up physical therapy visit. She had a great appointment. She was in a great mood and was showing off with all her movement. 5 weeks ago when the PT evaluated her she was scoring in the below average developmental range. On Monday she actually scored in the average range!! The PT was so impressed with all her movement and her muscles. 5 weeks ago her thumbs and hamstrings were a bit tight. With lots of stretching over the last few weeks they felt pretty good and now her left ankle feels a little tight. We were very happy to get this good bit of news.
Wednesday brought two appointments, the eye doctor and an echocardiogram. We were real anxious about the eye doctor. We were more prepared this time for the possibility of bad news. The appointment ended up going about as expected. She has severe vision loss, but it seems that she does have some vision. He said her left eye is -8.00 and her right eye is -10.00. This means she is VERY nearsighted. Just to compare, my vision is -3.50 and -4.25. We have both talked to some friends who are -7.00. Her left isn't that much worse. She should have some vision assuming everything else is working correctly. We will have to wait and see if she has the neurological equipment to allow the images to be processed by her brain. There is reason to be worried about this because of her hydrocephalus. We have another appointment in 6 weeks and we will probably be talking about putting her in glasses. Can you imagine my little Lindy in glasses?
Does anyone out there or do you know someone with worse vision that -8.00 and -10.00 and they can see okay with glasses or contacts? We're trying to to get some frames of reference to see what we are really dealing with.
Lindy also had an echocardiogram to check on her heart. They are checking to make sure there isn't extra pressure on the heart that could be affecting her lungs and her need for oxygen. We haven't heard any results from that yet.
Today we had the home health nurse come check on her and weigh her. She was up to 9 pounds 8 ounces today! She hadn't gained much last week so I was happy to see a good weight gain this week. Finally this afternoon we had a follow-up with the ENT (ear, nose, and throat) doctor. We discussed the results of her swallow study and he was able to look in her ears. He got a good look at her eardrums today and said he did not see fluid behind her ears. I wish he had seen some fluid. If there was fluid that could have been the cause of her hearing loss and there are things to do to fix that problem. Unfortunately there was no fluid so we are dealing with something more serious in regards to her hearing.
We are done with appointments for this week and thank goodness we only have 1 appointment next week. Drew has been staying home with Will while the girls go to the appointments. Drew's office is at our house so he is able to come inside and watch Will and do work inside while he sleeps. I don't know what we would do if we did not have this arrangement. We are fortunate for Drew's flexible schedule that allows me to just take one baby into an appointment instead of having to take both!!
We hope everyone had a lovely Valentines Day. The "Little Flirt" had a couple offers to be his Valentine. A NICU friend, Allison, offered (okay, her Mom offered her up!) to be his Valentine. We also got a call today from one of our favorite NICU nurses, Sherri, inquiring to see if the spot was still open! The little man is already fighting off the women! I didn't ask for Valentines for Lindy because she's our little girl. Daddy won't let her have any Valentines until she is 18 years old :) I don't think that is fair though. So maybe another NICU friend, Noah, could be Lindy's Valentine. What do you say Cheryl, can the shunt babies be Valentines?
Friday, February 8, 2008
Will seems to have developed a big baby cry. He used to have this little baby cry that we used to think was sweet. Now he thinks he needs to turn up the notch a bit. It is hard to tell sometimes if there is something wrong or if he is just messing around. Sometimes he does have bad gas pains but other times he is wailing away and then he will stop and smile at you. Sometimes he is just playing.
We think we must have been starving Lindy. We had been giving her 4 ounce bottles but we now think it wasn't enough. On Thursday we started giving her some 5 ounce bottles and she was a whole new child. After such a horrible Wednesday, she was the best I've ever seen her on Thursday! Go figure! She played on the playmat for 1.5 hours without fussing at all. The best part of the day was when I was walking by her and Drew and I leaned down and gave her a kiss. She smiled at me!!! I kept kissing her and she kept smiling at me! Those sweet smiles help make up for the horrible week we were having. She has been a great little girl today too. More smiles today for us and an overall happy camper. So I'll eat all the crow I was talking about from earlier in the week. For now. Bedtime didn't go so smoothly tonight and she is still in her bed trying to decide whether she wants to sleep or pitch a fit.
She had another busy week. We had an occupational therapist come to the house Monday. She is going to start coming every other week. We are just going to work on stretching her thumbs and changing her positions a lot during the day. We are also going to work with introducing texture into their mouths in the form of our fingers or baby wash clothes. This will help once we start giving them cereal and baby foods. A lot of preemies have oral aversions because of the endotrachael tubes they had in their mouths for so long. We really hope we can avoid oral aversions. Some of the problems I have read about on the internet do not sound fun. She also had an appointment with a nutrionist and she got her monthly Synagis shot (for RSV) this week. She did not like the shot but recovered pretty quickly. They also got a urine sample to test for a urinary tract infection, thinking this could be the cause of the earlier fussiness. So far it looks fine.
Next week she has 4 appointments, 5 if you incude the home health nurse visit to the house. I long for a nice quiet week without doctors' appointments.
Here are some new pictures. Have a wonderful weekend!
Until you turn him around and see it was absolutely covered in POOP!!! He pooped all up his back! Not being a very smart mommy, I didn't ever realize it until I had fed him half a bottle. I stopped to burp him and when I started patting his back I felt something damp and squishy. I turned him over and found this mess. It was so gross!! He went straight for the bathtub. There is no good way to get a poop filled onesie off a baby. We threw the onesie away. He was getting too big for it and we had no urge to scrub that much poop out of it!!
The poop shot pretty much sums up our week! It has been better the last couple days. I hope it stays this way!!
Friday, February 1, 2008
Thanks for the kind comments we have received from everyone. Wednesday turned out to be a rough day. I really hadn't prepared myself for the possibility of bad news. I get so caught up in the logisitics of getting to appointments on time with everyone happy and sated that I don't think much about the apppointments. That's what totally happened on Wednesday. The whole day went south from the appointment on. It was the babies' 6 month birthday and I was thinking a lot about what was happening six months ago. We were in the midst of the worst day of our lives. It brought back bad memories and of course had me thinking a lot about Adam. I guess I'm allowed to have bad days every once in awhile. It's not like any of this has been very easy.
In honor of their 6 month birthday, I thought we would take a look back. Drew's wedding ring fit over their hands and down on their arms at one point. Not anymore!! It only fits two fingers now. I was absolutely in shock last night when I asked Drew for his ring. It is so hard to believe their fists fit through it. I really can't remember them actually being that small. They have changed so much!!
And some more cute pictures!
Will was giving Lindy a foot massage!!
Our "Little Flirt" is looking for a Valentine's Day date. Any takers?