February 20th, 2009 at 9:49 am
(CDH, Day to Day, Douglas, Hearing, Page Updates, Sabrina)
It’s been too long since updates again so here I go. Sabrina is walking all over the place. Nothing is safe anymore. We have her new hearing aids and have not had a problem with them since they arrived and yesterday she got new ear molds. As you can guess a growing child will outgrow ear molds on a regular basis. They have been lasting a few months and then new ones need to be made. Once they start getting too small we have a product called oto-firm that keeps them from feeding back till the new molds are made. The oto-firm is a cream that fills the gap between mold and ear.
We have reached one of our least favorite times of babies lives. She has started hollering when she wants something. The problem is, no one knows what she wants. At this point in communications learning, her brother would at least grunt and point. She just hollers till you get it right. While we are way in communication skills we are making progress. Shes not doing too badly for someone who has only been hearing for a few months now.
We are over 16 months out from her birth, about 14 months out of the hospital and we have no complications from the CDH. Near as we can tell, other than the external scars, her insides are working exactly as they are suppose to work. We have some issues we are still working with physical and occupational therapy plus the weekly time with the teacher from CID but these are all peripheralissues. These are issues from being in the NICU, issues from the surgery (large incision through a large section of chest muscle) and her hearing is a side effect of the machines and drugs that saved her life though we do not know specifically which machines or drugs may have done it. But for us, no other CDH issues have appeared. We go in to see the geneticist at the Children’s Hospital at the end of March to make sure there are no other hidden issues. Till then everything is peaceful (except for the hollering) and normal (for us).
Next weekend CID is having a parents seminar day. A few morning sessions and then an afternoon session/panel with past students/graduates from the school. Should be interesting. We have been a bit short on guidance and what to expect in the future. Hopefully this will provide some insight.
Doug is still four. He runs, he yells, he crashes, bangs, throws, rips, shreds, hides, tunnels, all in the living room… did I mention he yells. We have been back to the doctor for his breathing/coughing/sleeping and we are hopeful that what he has is not asthma. The doctor thinks it might be just a seasonal infection. We will keep going with the inhaler and see what happens once spring/summer set in.
Other than that, my websites have been migrated again. I started off running my own web server out of the basement… it was a bad idea. It was fun, but far too much work. Then I moved to a small hosting company run by a guy who really knew what he was doing. Then someone offered him a pile of cash and bought him out. That someone isn’t as impressive. So I have moved to a mainstream large hosting company. The link seems a tiny bit slower but it should not been noticeableunless you are running tests like I was to compare the two. So now I am with hostgator.com. Sabrina’s pictures are back up and I hope to add some new pictures this weekend. I have upgraded Doug’s site from my HTML to a gallery program. I am going to add more pictures of him and I have set up a section to upload some of the pictures he has taken with his Fisher-Price digital camera as well. Things look good with the new site so far, hopefully it stays that way.
4 Comments
January 18th, 2008 at 1:03 pm
(CDH)
Visit Liviana’s Page. It looks like she arrived yesterday.
Our thoughts are with you Amy. Hoping for the best news possible.
1 Comment
January 10th, 2008 at 11:37 am
(CDH, Douglas, Sabrina)
I have a story to tell. It’s about a boy and his two grandfathers, two grandfathers who think that they are funny. We bought the boy kitchen toys for Christmas. He likes to pretend he’s cooking so we decided to help him out. He was in the basement playing with his new toys Christmas afternoon. He took a wooden tomato, that he received in a set of fruits and vegetables that are held together with Velcro and can be sliced with a little wooden knife, and put it in a pot to make soup. My father-in-law, tells him, that tomatoes are good for his prostate. At which point, he turns to my father and says, “This is good for yourpwostate “. To which my father, a survivor of prostate cancer, replies, “I don’t have a prostate.” The boy countered with, “I have apwostate.” Now when he cooks he can occasionally be heard to say, “This is good for your pwostate.” Thanks Papa Jim. I won’t even go into poo stew… Thanks Papa Steve.
The above story was not what I was originally posting, I was going to comment on how gassy babies are. I was going to comment on how the boy likes to tell us “Daddy, Sabrina tooted.” But then I remembered that today is her three month birthday and I decided to change the topic for her sake. Here’s to at least 1000 more months baby girl. Happy three month birthday. (1000 months would get her to 84, not a bad run in life)
We are having some concern about her hearing. Hopefully we are overreacting. There are times that we think she is reacting to sound, but she could also be reacting to other stimuli. She received a musical toy for the side of her crib for Christmas that she seems to enjoy, however it also has flashing lights and we know that she likes light and light up things. I clapped loudly next to her head when she was looking away from me last night and got no response. So I have a call in to our doctor to see if our concerns are justified. It’s also just as possible that she was being a daughter and ignoring me. The baby book seems to say babies will tune out sometimes, so perhaps that’s the problem. Overreacting or not, we are going to get it checked out. If there is a problem, it is probably a limited loss that can be corrected with hearing aids. If we wait, we could be looking at developmental delays. It may be nothing, but if this is our lot and we have a perfectly healthy little girl with some hearing problems, we got off easy. Sometimes Congenital Diaphragmatic Hernia babies don’t make it to their third month, I don’t get to complain.
1 Comment
December 1st, 2007 at 11:49 pm
(CDH, Sabrina)
I had a dream last night that today would be Christmas… I was convinced when I woke up that there would be presents. Probably because we were told on Friday that she is coming home on Sunday. Day 54 will be the last day spent at the hospital. I have been hesitating to put this post up just in case something changed. Nothing has. She has taken all her bottles for the last several days. She is playing and has taken swings at her dangling toys. She is happy and smiling and coming home tomorrow. I think our ducks are as in a row as they can get at this point. We are going to pick her up around 1:00 pm tomorrow.
If anyone from work is reading this, I won’t be in till next Tuesday… I’ll call Monday morning. That’s it, I’m going to bed.
5 Comments
November 28th, 2007 at 11:30 am
(CDH, Sabrina)
Her night looked like this; 60 cc’s at 12, 70 cc’s at 3 and 50 cc’s at 6. She did take 100 cc’s in a feeding yesterday. Her regular nurse tried spreading the time of the feedings out a bit and increased the amount in the bottle and she took over three ounces. They tried it again at 9am and she only took 40 cc’s. So its not a perfect system, but it worked once.
Nothing else has changed much. She has cleared 9 pounds. She is sleeping a large amount of the day away, which is exactly what she should be doing. She is not spitting up, they have her on three medications to prevent reflux and they seem to be working. She has started making some cooing type sounds. They grow up so fast.
I spoke to Douglas on the phone this morning and asked him what he was going to do today. He proceeded to lay out his plans for the day in great detail. It’s the longest phone conversation I have ever had with him. He usually runs to the phone, shouts something and runs away again. He has started correcting himself when he mispronounces words. He was telling me about snowmen yesterday and he said snowman wrong, he stopped, said it again correctly and plowed on with the rest of his story. No input from me, he knew it sounded wrong and he fixed it. They grow up so fast.
2 Comments
November 24th, 2007 at 5:32 pm
(CDH, Sabrina)
Just a quick post before Douglas gets back from the office. He is driving his scooter car in the basement. He told me he was going to work and would see me when he gets home. I can see him in the next room moving blankets and pillows around. All he would tell me is he works with ‘puters at work.
Sabrina is doing well. She took an entire bottle, 75 cc’s, on Thanksgiving. When they, or we, feed her with a bottle she generally takes around half. We were there for the noon feeding today and she took 48 of 78 cc’s from the bottle before she fell asleep on me. They have started her on the baby vitamins. The vitamins are a liquid and they are nasty. They smell bad and they do terrible, terrible things to packages received via the diaper. Yuck. She has had her first reduction of the methadone a few days ago and the next 10% drop should be tomorrow. She is holding her head up on her own. I think she was playing with me the other night. I was sitting with her while she was sleeping. I was reading a book and saw her looking at me out of the corner of my eye. I turned to look at her and she quickly closed her eyes and smiled. Otherwise, she is still a party animal. She is up part of, or most of, the night. I suspect she is having parties over at her crib when no one is looking, but that is just speculation at this point. I have no evidence to base that on.
1 Comment
November 21st, 2007 at 11:43 am
(CDH, Sabrina)
These titles are boring… I suppose I could jazz them up a bit… like… Day 43, The Day Elvis Returned… or Day 43, Free Diaper to Each commenter… (Note: Diapers are expensive, I will not be sending out Free Diapers… unless… no, no that’s just too yucky and the postal service would never accept the packages.)
Anyway, Day 43, we are up to 70 cc’s on feeds and for one feed last night she took all but 15 cc’s from the bottle. Normally she takes around 30 and gets bored/tired/etc. So 55 is a big step up. She has been sleeping well and the side effects of withdrawal have been minimal. She is still on a pretty good dose of methadone but she is handling things pretty well. They should start bringing the methadone dose down in the next few days. She is only on one monitor now which means there is only one line coming from her body that is always plugged in. The other line for her feedings is only plugged in when she is eating. It is much easier to pickup and hold an unplugged baby.
Nothing else to report other than my jacket was on the local news the other night, and I was in that jacket. There was a film crew outside the NICU for a story on Staph. There has been an increase in the number of carriers they are seeing in the NICU. Carriers are moved to a special room, (Right next to Sabrina’s room). What this means is the poor baby is not infected with it, but when they did a swab test the bug showed up in the results. Somewhere between 40 and 60 percent of the population is a carrier at one time or another. These kids were unlucky enough to have some on them at the time the test was done. Their parents and caretakers have to take extra precautions that other parents do not need to take. So there it is, my jacket is now famous.
Comments
November 18th, 2007 at 8:25 pm
(CDH, Page Updates, Sabrina)
Pictures from days, 26, 31, and 38 have now been posted on Sabrina’s site. I will be moving some of the older pictures to a second page so the newer ones load faster… maybe next weekend.
40 days have passed, we’ve come a long way. Mostly due to the force of will only a new life can exert, Sabrina is no longer on an IV. She had been going through them about every two days and once again around 2:00pm yesterday the IV gave up and they did not replace it. She is no longer on extra fluids, she is no longer on antibiotics, and she is no longer on Fentanyl. We have seen few to no withdrawal symptoms, she is doing great. They had started the final weaning of the drug and should have been done around 10am tomorrow. She decided to finish it early.
I fed her today, 33 cc’s of her 65 cc’s from the bottle. I had a bit of a discussion with the charge nurse today. Yesterday her Grandmother, a former nurse, was there for a feeding and was told she could not feed her because the chart said only the primary nurse and the feeding therapist could feed her. I expressed the unacceptable nature of this order, particularly since we would like to bring her home some day… preferably before 2008 rolls around. All she has left to do is to get her feedings up to full speed and she is out of there. The infection last week slowed things down and the therapist has been out all week for a death in the family. She needs to be getting bottle fed as often as is possible and it has not been happening. I made her understand that the Grandparents will be allowed to feed her from here on out.
So, in my continuing lessons to CDH parents, (Remember the first lesson, if you get sick you don’t get to see your kid, so take care of yourself). Lesson number two, while the doctors and nurses may have your child’s best interest at heart, they also have the interest of every other child in their care at heart too. You are your kids only voice, their only advocate, and if you have to play the devil part of that advocate, do it. Trust yourself, if you don’t like it, challenge it, if you don’t understand it, don’t let the doctor or nurse leave till you do.
That’s it for now, I’m going to go help put the boy to bed.
4 Comments
November 15th, 2007 at 11:52 am
(CDH, Sabrina)
Feeds are now up to 55 cc’s with around 20 being taken from the bottle a few times a day. She only tolerates the bottle for that long then they finish the feedings with the tube. The Fentanyl was dropped from .8 to .5. Not exactly following the original plan, are they. She tolerated the change very well. Yesterday afternoon she was off the drugs for over an hour and a half. The IV going into her foot stopped working and it took nearly two hours and 7 attempts to get it going again. Her veins are tiny and she is a moving target. They went through three nurses to get the line run. The third nurse was their expert and she got it right on her second attempt.
I stayed with her while they were making their attempts. It’s not easy to watch someone inflict pain on your baby, but if she had to endure it, the only thing I could do for her was be with her while she did. Felt lousy the rest of the night and went to bed early. Nothing much else to say right now. I have not been anywhere near my computers at home since the weekend. I have been writing my posts from work during lunch. There has been a request for pictures both posted and in email. I will try and get caught up this weekend.
2 Comments
November 13th, 2007 at 11:28 am
(CDH, Sabrina)
I was talking on the phone this morning when I realized I had not changed my desk calendar since October 10th. Not a bad analogy really, time does seem to have stood still or at least warped the last few weeks… or months. I cannot believe it is mid November. I feel as if I have lost six months of my life. Oh and a special thanks to my father who pointed out a study to me in which the authors claim that stressful life situations take 8 years off your life. So, I have not only lost the last six months, but ninety-six future months. (Unless you believe the authors are crackpots just out to make money.)
Sabrina is doing OK today. Her temperature has not been normal but she has not spiked above 100 in the last 24 hours. She was awake from around 9pm last night till 3am this morning. She was fussy until the nurse put a warm pack on her belly at which point she had a bit of a pressure release. (I’d call it gas, but ladies don’t have gas… What was it Scarlett O’Hara had? The vapors? What? Ok, fine, she was probably talking about something other than gas, but it’s still funny.) She has had some vapors since then, so they are assuming she had a bit of an upset stomach last night.
She had her PICC line taken out yesterday as there is some fear that it has been in too long and may be the source of the infection. Note, this is all just a theory at this time. They sent the line to the lab to have a culture run on it just to be sure. With the removal of the PICC they needed to give her a new IV. They asked me if I minded if they put it in her scalp since that is an easy and relatively pain free location. They asked since I was there and since it sounds like some parents object to the location because of how it looks. She’s a month old and in the hospital, we aren’t exactly going to take her over to the mall photo studio at any point in the near future, so I told them to do what they need to do. Well they did… we left a short time later and then Sabrina did what she had to do and pulled the new IV out. We were told early on that bigger babies were always a problem. (No, not fathers. Larger, full term, babies….) They have the strength to pull lines out and cause problems. She tends to pull her feeding tube out every other day. She’s quick and sneaky… if you look away you will miss her pulling the tube out. I suspect one of the reasons they finally pulled the oxygen is she was very rarely wearing the nose tubes anymore anyway. If there were an award for medical device removal, this kid would be in the running. They were able to place the IV line into her foot so she can get her medication.
She is up to 52 cc’s on her feeding and they skipped a point on the Fentanyl and moved down to .8 last night. Sometimes I think they are just guessing and with a new doctor rotating in for different work shifts, it is difficult to have continuity of care. I think one doctor may make a choice that is only good so long as that person is on shift, that choice is only valid till the next doctor makes the next set of rounds and decides to either continue with it or override it in favor of their choice.
1 Comment