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
November 11th, 2007 at 7:18 pm
(CDH, Sabrina)
We received a call from the neonatologist just moments before we stepped out the door to go to the hospital. He wanted to let us know that she was running a fever and that they were running tests to determine what was wrong. When we arrived at the hospital they were in the process of trying to get a vein to draw a blood sample from. Her color was bad, pale and splotchy. Her temperature was running around 101. After several attempts they gave up and started her on antibiotics anyway. They had run a different test that came back slightly positive to show that something was wrong, but right now they do not know if it is viral or bacterial. They need blood for a blood culture and her little veins were not cooperating.
Heather held her for an hour and I held her for an hour and a half. When we started she was making a tiny moaning sound as he was breathing. By the time we left, she had received a dose of antibiotics, and had a belly full of milk. Her temperature was down a full degree, she was calm and she was no longer making sounds like she was feeling terrible. Nothing quite like several hours of snuggling with Mom and Dad to make you feel better. They are keeping a close eye on her to see if anything develops.
She is up to 50 cc’s of milk and she took 25 cc’s in a bottle last night. Her weight is up to 8 lbs, 12 oz. and most, if not all of the edema is gone. The fentanyl is at 1.0 right now. They are not taking her down .1 every other day, they are going down .1 every three days.
Worn out… worn down… I’m not even entirely sure what day it is today. Earlier I thought it was Monday already… then later I asked if we had gotten any mail thinking it was Saturday. There is a surreality to this whole thing. She is full size and she looks good on the outside. We want to bring her home. Every instinct says you have a baby and you get kicked out of the hospital by your insurance company three days later. We are at the close of day 33.
Current Fentanyl Dose – 1.0, Days to reduce Fentanyl dose to 0 at current rate- 30, Days to Thanksgiving (Don’t forget it’s early this year) – 11… It’s not hard to see we will have an empty baby seat at the table this year.
3 Comments
November 9th, 2007 at 11:35 am
(CDH, Sabrina)
Things feel like they have dragged to a near standstill. The first few weeks were all about waiting, but it was a fast paced waiting. We were waiting for things to happen, we were waiting for many things to happen. Now that many of those things have happened, nothing seems to be happening. Now, don’t get me wrong, this is a better place to be than the first few weeks. But it still wears on you.
Sabrina is doing well, she’s doing great. My calls to the NICU have gotten very very short. They consist of; She’s fine, she’s taking x amount of milk, she either spit up or she didn’t, she’s either the same or one point lower on Fentanyl and she is either sleeping or awake. That’s really about it. Visits are also generally very quiet and peaceful. The pace at the NICU South is much calmer and slower than the North unit. I went and sat with her for 45 minutes last night and she slept through most of it. If I had been in a more comfortable chair, I might have joined her.
We spoke with the neonatologist a few days ago and were able to see her current x-rays. He said that if he showed the x-ray to another doctor who specialized in the respiratory system they would look at it and say, yep, looks normal to me. There is still a bit of fluid around the site of the surgery but that will clear up over time. He heart has moved back to the spot where it belongs and it obscures the lower portion of the left lung so its hard to tell that it is a bit smaller than the right lung. The right lung looks perfect. Looks, of course, can be deceiving. We have been told that she will never have “normal” lungs. If they were to biopsy her lungs in 60 years and compare them to someone who did not have CDH, the differences would be obvious. She will always have fewer and larger alveoli in her lungs. There is no way to tell at this point how that will affect her in later life, but we will deal with that when we get to later life.
Right now we are still focused on the medication and the feedings. She is down to 1.1 on the fentanyl and up to 45 cc’s on the feedings. 45 cc’s is an ounce and a half, so not bad for a week or so worth of work. A physical therapist is working with her on her movements. Since she was immobile for so long she has some minor issues. There is another therapist working with her on eating. She is spitting up some, she took 20 cc’s from the bottle at her last feeding and spit around 5 of them back up. Still getting her to take 20 cc’s is a big step forward. That therapist will see her again at noon today. So we are making progress all around.
I have some new pictures that I will try and get up tomorrow to show her new digs. Oh and before I forget, she is completely on room air now. They have done away with the oxygen completely. Sabrina had done away with it a day or two before the doctors did. She had figured out the correct way to pull the tubes and move her head to get the prongs out of her nose. It was rare to see the tube in place for more than a few minutes if she was awake. I can already tell that she’s trouble… I like her.
4 Comments
November 7th, 2007 at 9:55 am
(CDH, Sabrina)
Thus dawns day 29. I missed day 28 at home in bed. Between 9pm Monday and 9pm Tuesday I slept around 16 hours. Let this be a lesson to all you aspiring CDH parents out there. If you let yourself get sick, you do not get to go and see your baby. So drink your orange juice, and try and get some sleep. Try being the choice word here. I have not slept well in months. Still not feeling 100% today, so I will see how the day progresses.
On the evening of Day 28, Sabrina was promoted. She is no longer a resident of the level 3 NICU, she is now residing in the level 2 NICU. We are working on two factors that will control when she is able to come home, the narcotic and eating. For the former, she needs to be off the Fentanyl to go home. Fentanyl is administered through the IV line making it inconvenient to have her on the drug outside the hospital. Monday night, they started her on Methadone. She received two doses a day and once the drug builds up in her system they will resume weaning off the Fentanyl. For the latter, there is a therapist coming in to see her this morning to work on feedings. She is taking 35cc’s from the gavage, but she has been rejecting the bottle. The last time they tried it yesterday, she was arching her back in protest. She is still receiving 1cc of mylanta before each feeding, just in case it is reflux but it does not seem to make a difference. It’s possible she just doesn’t like the bottle, it’s hard work getting food out of those things. Her life has been nothing but hard work since she arrived so perhaps this is her way of rebelling a little bit.
When I called in this morning the nurse said she was up quite a bit last night but was “sawing logs” now. She is taking her non-bottle feedings well, they have her up to 35 cc’s and they are not getting much if any residual back at the time of the next feeding. Her digestive system seems to be working just fine. She is still on oxygen for the extra air pressure… well she is still on oxygen when she feels like it. She seems to be spending quite a bit of time with the cannula pulled out. She pulled it out on Monday while we were there, the nurse looked at her, looked at her stats on the monitor and said she could put it back in but since Sabrina was sleeping she would leave it alone. It stayed out for an hours and a half with no drop in stats. It is probably not necessary anymore. The nurses also tell me she loves her new mobile that we picked out. I have yet to see this for myself as she has been asleep during most of my visits to the hospital since we brought it in.
Now for a bit from the day to day that most people probably take for granted. (Defined as, To underestimate the value of.) We were told that we can bring in clothes for her to wear. In the first few weeks she just wore a diaper. No blankets, no shirt, she was under a baby warmer… think fast food heat lamp. Then, once her incision had healed pretty well, they began to swaddle her and turned off the baby warmer. Now for the last day or two she has had a Jedi shirt on, in addition to be ing swaddled. (It’s the way my wife describes the shirt. It wraps around the baby in a way that it looks a bit like a tunic from the Star Wars movies.) Now we are able to bring things in for her. As for the taken for granted part. A baby with CDH has, if I remember my numbers correctly, around a 60% chance of survival. In addition, we had been told by one of the worthless Perinatologists that her outlook was poor. (Remember the one who could not get out of the room fast enough) Not much shopping was done for clothing for Sabrina, just in case. I talked my wife into painting the babies room to prepare for her arrival. I felt it wasn’t fair to assume she was not going to have the strength, the will, to come home. While the room did get painted, we did not buy any clothes and other family members held off as well. Well that has turned around the last week or two. Cute things have been bought and coo’d over by the females in the family and extended family. I told Douglas that we would need to protect his sister from the circling birds of prey carrying pink frilly things.
3 Comments
November 5th, 2007 at 2:47 pm
(CDH, Sabrina)
I really need to consider not writing after 9pm. Mostly because I don’t remember writing that last post, but also because it’s horribly written. Anyway, enough nitpicking at myself.
We went to spend time with Sabrina yesterday afternoon. We went with the intention of being involved in a bottle feeding. I need to point out that I was a little excited. I knew she had taken some of her feedings from bottles for the last day or so. On one feeding she even took 11 out of 25 cc’s from the bottle, so I was hoping for some results… perhaps even to show those nurses how it’s done. Certainly if the nurse could get her to take 11, I, her father, Super Dad, can certainly do better. At this point I need to point out that my nemesis, The Baby, must have gotten wind of my plan and decided to stage a baby rebellion and not drink any. They had moved her up to 30 cc’s with a bit extra in the bottle to account for what will inevitably run down her chin. We got her to take 1, no not one bottle, 1 cc. Unless you take into account what ran down her chin. If you take that into account, then she took none. She still got her meal, just through the nose tube rather than the bottle. They have not attempted a bottle since, she had been sleepy or her respiration has been too high to try again.
She continues to do well, there have been some signs of reflux, but it is still a bit too early to tell. There has been some spit up and some agitation that might be showing reflux. They have started her on 1 cc of Mylanta before each meal just in case. Also, as the amount of milk she is getting goes up, the amount of IV feeding has come down. The Fentanyl drip is down to 1.2. They are trying to wean her off the narcotic without resorting to the methadone. Once she shows signs of withdrawal they should start her on the methadone. If by some chance she is able to come off it without the methadone that would be even better. She is still running at room air with the pressure turned down as far as they go before turning it off. Her breathing has been fast so they are leaving her on the extra air pressure for now.
We asked to speak to the nurse practitioner or a neonatologist yesterday. We have only been thinking one step ahead, one thing at a time. We now know she is coming home, it’s all a matter of when. We spoke to the NP and she seems to think that Sabrina will probably be home before Thanksgiving, but we still have a little ways to go before we get to that point. It looks like they have a weekly discharge meeting to create exit strategies so they are working towards getting her home. Besides it’s a busy hospital and they need the space. We are going to sit down with the neonatologist today to have a look at her series of x-rays to see how she is progressing. They should have taken a new image this morning.
Other than medical, we brought in her own mobile yesterday and I got her a stuffed duck on a surf board with fish hanging underneath to hang on her crib. I have some photos that I will put up in the next few days. The crib is very busy. Lots of color, lots of things going on. She has been spending long periods of time awake so we wanted her to have something to look at. She is always looking at something, her eyes are always busy. We are hoping to give her a change of scenery soon.
3 Comments