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
June 8th, 2008 at 12:24 am
(Page Updates, Sabrina)
I have added pictures of Sabrina from 22 March through mid May. I bought a new Sony camera today so we will see if that prompts more photos and more updates. I only took about 70 pictures today. I will need to sort through them. I have a stack of photos to add for Douglas as well, though it’s getting late. They will need to wait till later. I need to stand up the gallery for his site before any more updates there.
Today she added rolling to her snow plowing. She did the first full roll I have seen her do… hell, I haven’t seen her roll over in weeks. She rolled from back to front to back and then proceeded to snow plow till she reached her brothers toys. This was at least her second attempt to reach his toys today. The roll was the interesting addition to her mobility. Pretty impressive.
1 Comment
March 16th, 2008 at 3:41 pm
(Page Updates, Sabrina)
I have just finished migrating Sabrina’s Gallery to the new gallery software called Coppermine. I also added four days worth of pictures from 23 February through 15 March.
Heather is under the impression that Sabrina is not so much rolling over as attempting to retrieve her pacifier and the rolling over is purely accidental. Personally, I think she proved she could do it so the pressure is off, she is on vacation this week and will move on to rocket science now that she has completed rolling over. One of us is more likely to be correct… I think it’s me.
3 Comments
March 6th, 2008 at 8:35 pm
(Day to Day, Page Updates)
Been a while since I updated. Every time I go to write a post I end up working on the server. Updates, patches, general fidgeting with things. Well no more. I have signed on with Hosting Puppy and all my server administration worries are behind me… ok, some of my administration worries are behind me. Several parts of this page are still broken, they will need to wait till later.
The girl is smiley and doing great, the boy is… three.
1 Comment
February 13th, 2008 at 9:49 am
(Douglas, Page Updates, Sabrina)
I updated the pictures on Sabrina’s page on Sunday. So I am a few days late in reporting the change. I moved her older pictures to a second page so the first one would load faster. Nothing much to report. We have been trying her on rice cereal with only minor success. It takes a different set of skills to eat from a spoon and she is not terribly interested yet. We will keep trying. Her brother went nuts on the cereal the very first time and it was two weeks before we were able to get him to try it again.
She has her four month doctors appointment today and the next in the series of standard baby shots. Let me just say, she is not a fan of being poked with needles. She has probably been stuck more times in her 4 months than I have in my entire life. Hard to blame her for the lack of fandom.
Douglas is making great progress on potty training. We were starting to think it was never going to happen, but it has. A few more weeks and we should be done with it. Yay, progress.
- EDIT – Forgot to mention, I added a new link to the McDaris Family Blog on the right side of the page. Visit this page for Cadenne’s story.
- EDIT 2 – I should have just done a new post for these edits. Liviana is going home Saturday. Congratulations.
1 Comment
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 3rd, 2007 at 10:29 pm
(CDH, Douglas, Page Updates, Sabrina)
New pictures on both Sabrina’s and Douglas’ pages. Douglas’ Halloween photos are up on his page. Sabrina’s page has pictures of the baby jail. Please disregard the facial expression in picture four. That was actually the best out of three expressions. The goal was to show her scar. The surgeon did a superb job of closing after surgery and once she finishes healing the scar should be almost invisible. That being said the surgeon came by yesterday and removed the tape over the stitches and you can see from the picture how good it looks.
They started her on bottle feedings today, only a little bit for her to start getting use to it. The nurse said Sabrina looked at her like she had three heads when she realized she would need to work for her meal. They have her up to 25cc’s, they only gave her 3 or 4 from the bottle. She is weighing in at a bit over 8lbs. 5oz., she has been taken down another setting on the Fentanyl to 1.3 and her oxygen is set to the point where they do not go any lower. The next step will be to take her off the extra oxygen pressure. All in all, another good day.
2 Comments
November 2nd, 2007 at 1:01 pm
(Page Updates)
I added a set of links on the right hand side. The first four are blogs, stories from the trenches so to speak. The next set of links are for organizations. The third to last one is for the Children’s Hospital of Philadelphia which has a wonderful video section about Diaphragmatic Hernia that gave Heather and I most of our good information in the first few days after learning about Sabrina’s CDH. Second to last is the wonderful NICU at St. John’s and finally there is a link to “Welcome to Holland”. The first four links have an * in front of them to make them show up at the top of the list, otherwise everything is alphabetical order. I am sure I have missed some of the links I wanted on the list, I will find and add them later.
Comments
October 29th, 2007 at 10:05 pm
(CDH, Page Updates, Sabrina)
Today was a busy day. 20 days after her birth, Sabrina Danielle is no longer considered on intensive care. She has been promoted and moved out of the intensive care side of the Level 3 NICU to the intermediate section of the Level 3 NICU. Some day she will be promoted to the Level 2 NICU, but we made plenty of progress for today. Around midday the surgeon came through and removed her chest tube. They were no longer getting drainage out of the site of her surgery so it was time for it to go. From what the nurses tell us, adults who have had chest tubes say they are very very uncomfortable. We arrived shortly after the chest tube was taken out.
She was desperately trying to get her fingers into her mouth. We knew from her ultrasounds that she was regularly putting fingers and toes in her mouth. This is something she has not been able to do since the day she was born. With the breathing tube and the bridge on her head to hold the tube in place, plus both hands having IV lines running in them, the best she could do was the top edge of her thumb. Around 3, the neonatologist came through and removed the breathing tube from her lungs. She has been breathing room air for the last few days and really the only support the ventilator was giving was a bit of added pressure in her lungs. With her no longer being intubated, Heather was able to hold her daughter for the first time ever and Sabrina had the best nap we have seen her take in a long time. She has been spending much of her days awake, today while I sat with her she was trying to sleep, but an alarm on part of her ventilator kept going off every few minutes for no apparent reason. Every time it went off she woke up and tried to cry through the ventilator line. Once the tube was out of the way, we were able to hear her cry for the first time since the moment after she was born. She was given a “binky” (who came up with that name) which she seemed to enjoy once she figured out what to do with it. Then she napped on her Mom for about 45 minutes… her Mom lost all feeling in her left arm and it didn’t bother her one bit.
Once the tube was out, the said the arterial line would be next to go. Without the ventilator they no longer need to run blood gas analysis every few hours, so around 6pm they removed the arterial line and her left arm has been freed for the first time in almost two weeks. With the removal of all this equipment and placing her on a simple nose/oxygen line, she is no longer considered to be critical since she no longer needs machines to survive. When I left her tonight around 7pm, after having spent 6 hours at the hospital with her, she was resting comfortably for the first time in 20 days.
She still has the vein line in her right arm, a line for blood transfusions in her left foot and the stomach tube in place but that is all minor. The major support devices are all gone. She is still on Fentanyl, actually, her dose is back up to 1.7 from the 1.3 they had her down to. They wanted to start weaning her from the narcotic but the timing was not right and she was uncomfortable and jittery. They will try again now that she is off life support. Unfortunately, after 20 days on a narcotic, she is physically addicted to it. She has also developed a tolerance for it, so she needs more for the same effect. The doctor told me the other day that 1.7 would knock an adult on their butt if they were started on it at that level. So we will need to wean her from that and she will go on methadone to reduce the side effects of coming down off the Fentanyl. Methadone is used to help heroine addicts, Fentanyl is definitely nothing to mess with. It is 17 times more powerful than morphine. As Heather just put it, they doctors do not seem terribly concerned about this, her comfort and pain management were more important. It’s hard to manage the pain in a baby who cannot tell you what hurts and how much it hurts. Anyway, we have been told that she will probably be on the methadone for months after she is weaned from the narcotic.
Now that I am done rambling for the night, I think I covered the major points. Sabrina’s page has been updated with new pictures from today. Pictures 1 through 5 were taken before the move, pictures 6 and 7 are after the artery line was removed and then she was moved. Picture 5 is my favorite.
7 Comments
October 27th, 2007 at 3:39 pm
(CDH, Page Updates, Sabrina)
Today the NICU group called NICUPS (NICU ParentS) was having a Halloween Party for siblings of NICU babies. We took Douglas over for a cookie and a goodie bag. He seemed to enjoy himself. Sabrina was up a good portion of yesterday. In the evening they rolled her over onto her belly and she went right to sleep. When we arrived today she was still on her belly and she was sleeping again. She appears to be happier this way. They have turned off suction on the tube going into her stomach with the hope of removing it soon. Once that is out, they are going to try to remove the breathing tube again, so maybe tomorrow. They are also working on removing the chest tube, hopefully in the next few days on that one too.
It has been pointed out to me that I had not updated her pictures since day 9, I have added pictures from Days, 13, 15 and today, Day 18. There is a picture of her new location on day 15 and on day 18. SabrinaSachs.com
2 Comments