October 31st, 2007 at 7:24 am
(CDH, Sabrina)
They took her nose tube out yesterday morning. So one more thing down. With the tube out of her stomach for drainage purposes, they are going to put a new tube in for feeding purposes. If all goes well she will get her first meal in the next few hours.
They have been giving her medication to reduce the edema. She is looking less like a marshmallow and more like a baby every day. They have turned off the heat lamp since she can now be swaddled. She is maintaining her temperature very well. This is often a problem in preemies, but not for full grown babies. They had her under the heat lamp since they could not wrap or cover her with all the tubes and lines.
She is sleeping pretty well, though there are times that she appears to be sleeping with one eye partially opened. Either she doesn’t trust her neighbor, and to be honest, he isn’t going anywhere unless he figures out how to open an incubator from the inside. Or, she is trying to make up for the time she spent sleeping and is afraid she will miss something. It is nice to see her comfortable enough to sleep now. When she is awake, she spends her time looking at everything. She is definitely exploring with her eyes.
I held her for the first time yesterday afternoon. I sat with her for about an hour. She slept for a while, I was so comfortable, I almost slept for a while too.
4 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
October 26th, 2007 at 5:53 pm
(CDH, Sabrina)
In addition to spending several hours at the hospital each day, I tend to call the hospital two to three times a day to check up on her. The conversations have gotten rather short as equipment has been shutdown. I was asking about settings and levels and test results. We are down to the standard ventilator and the Fentanyl drip (plus a few other minor things). Most of the conversations involves her oxygen level, and her current state of being (rested, calm, agitated, etc). They are going to try and remove the breathing tube again tomorrow. We will see how that goes.
We spent several hours with her this morning. Heather went to a NICU moms meeting and I stayed with her. She had been awake for a while when we got there and her heart rate and blood-pressure kept running high. I spend my time trying to calm her at least a little. I could tell, at times that she was crying. Even though she cannot make any sound, it was obvious that she was crying. She finally went to sleep for a little while and we went down to get some lunch. When we got back to the NICU we did not have much time left with her and as we started to leave she began to cry. I type that last sentence a few minutes ago and I have been sitting her trying to put the experience into words. I cannot find the words. We stayed a few minutes longer to try and calm her down a little and left once she was a bit calmer. We had to walk away while our baby girl was crying. We had to walk away while our baby girl was crying. We had to walk away while our baby girl was crying.
4 Comments
October 25th, 2007 at 5:46 pm
(CDH, Sabrina)
All Sabrina’s settings were down this morning. They ran out of setting on the nitric oxide machine and turned it off. The ventilator was down to 20 breaths per minute at 30% oxygen, so she was doing 50% or more of the work herself. We arrived during rounds and the nurse came over to say good morning and to let us know that they were talking about taking the intubation tube out of her throat and thus taking her off ventilators completely. I asked if they had a plan and she said some time later. A few minutes later the neonatologist, who also happens to be the neonatologist who worked with Douglas at a different hospital when he was born, came over to say they were going to go ahead and remove the tube now. This all seemed rather soon after surgery, we are still less than two days from surgery but they were very happy with her progress.
Obviously I was excited. I was pretty amazed at how quickly they took everything offline and I think I blinked and the tube was out. Her numbers dropped off a bit, her blood pressure went way up but no one seemed concerned. She was having some problems but the determined her vocal cords were swollen from having a tube down through them for two weeks so they started her on an aerosol therapy every 15 minutes. She was doing pretty well, considering she was having to relearn how to breath. She was stable and we were starving so we went downstairs for lunch feeling pretty good. We returned to the NICU. Things didn’t go as we had hoped. Her CO2 levels started going up and they were not able to get them back down. They were forced to put the tube back in and turn the ventilator back on.
Several factors appear to have interfered with the move to room air. Her throat is swollen, she got the hiccups and she seemed to be having trouble remembering how breathing works. They are going to work with her over the next few days and try again next week. Right now she is resting comfortably, her numbers are back to normal and she is not fighting the ventilator. She has done better than anyone could have expected and she worked hard today. That is all we can ask of her. She did great today.
6 Comments
October 24th, 2007 at 10:38 pm
(CDH, Sabrina)
We spoke to the surgeon and the neonatologist today. Both of them said, they could not be happier with her progress. They brought her oxygen percentage back up a bit since they are slowing reducing the levels on the nitric oxide. The nitric oxide was at 15 parts per million around midday and now it is around 7 ppm. At midday her oxygen was around 38 percent but they have taken her down to 30 percent now. Her x-rays look great, she is awake… at least when she is not sleeping she is awake. I told them I was surprised to see her awake. I had expected her to be left to sleep for a few days. The said she is showing no signs of pain or agitation, so long as that continues they are not going to sedate her. They took her off the medication for agitation today, so all she is getting is the Fentanyl. They have a standing order for the agitation medication if she were to need it, but the drip is turned off. The only thing they are keeping a close eye on right now is the chest tube that is draining fluid from her body. There is always a concern with infection, so the sooner it’s out the lower the risk.
I don’t know what else to say at this point. I am hoping for many blog entries just like this one. I am hoping they get really, really boring with me tell you the things they turned off, unplugged or some new cute thing she did. I am glad you are all reading this and following Sabrina’s story, and I do intend to continue regular updates. I just can’t say I will be upset if things get very dull. Sorry. Can you blame me?
We will just need to wait and see… we are not out of the woods yet, though we appear to have found a pretty nice path.
3 Comments
October 24th, 2007 at 10:31 am
(CDH, Sabrina)
We are getting ready to go to the hospital right now. So just a quick post. I called at 12:30 last night. She was doing great. They had lowered the pressure on the ventilator and taken her down to 35% oxygen. When I called at 8:00 she was down to 25% and they were getting ready to start taking her off the nitric oxide. They have moved her out of her private suite (Ok, so it was more like a large closet) into the main room with the babies who do not need silence and seclusion. So we have gone from critical and mostly stable to fair and completely stable.
6 Comments
October 23rd, 2007 at 10:20 pm
(CDH, Sabrina)
Bloody hell… that is my favorite statement. Those who know me, know I do not swear unless I truly mean it. I find if you swear all the time, the words have no meaning. When I swear, it means something. I thank Spike from Buffy the Vampire Slayer fame for this statement. It covers today’s events just fine. I am still not entirely sure what happened… something happened but it hasn’t quite sunk in yet.
I received a call at 12:30 from Heather telling me to hold onto my hat… this was difficult as I have no hat to hold. I was expecting some statement about something amazing Douglas had done, or that the neighbor had finally caught the critter that has been digging up his yard. We suspect an armadillo but have no proof yet. Instead I am told she is going to surgery, she is going today and she is going some time after 2:30. I called my parents, posted the previous entry and ran, literally, to my car. I made a 30 minute drive in approximately 20 minutes, at one point realizing there was a motorcycle police officer behind me. Fortunately everyone else was going as fast as I was and he got off at the next exit. I arrived at the hospital just a bit after 1:00. Heather and her father arrived moments before I did.
Sabrina woke up around 1:30 and stayed awake till surgery. She spent her time looking at us and clearly listening to what was going on around her. Her blood pressure was a bit high and her heart rate was a bit high, almost like she knew something was happening. She had her best x-ray yet. They had started her on an inhalant similar to what an asthmatic would use and her airways had opened up and her lungs had expanded dramatically. Her oxygen was around 60% at a rate of about 40 breaths per minute. Not quite the 40% they wanted her at but the neonatologist told us she was doing well, and while they could wait for her to do better, better was actually an enemy here. Waiting for better means increased risk of infection from all the lines, increased risk of complications from the equipment and the medications. Better in the end was not better, today was the best they have seen and that was going to have to be good enough.
Again, she stayed awake with us for almost two and a half hours, we could see her eyes closing, she looked sleepy, but she did not go to sleep before her surgery. She looked at us and listened. It was pretty amazing, especially for a newborn, to be up that long. She has been sleeping for almost two weeks and had some catching up to do. During the wait for her surgery, many people came in and out. We requested the chaplain stop by, fortunately she was already in the NICU so it was a very short walk for her to find us. A short time after she left, our associate pastor arrived. He had been heading to the hospital for a regular visit, read the previous entry and came right over looking for us. He stayed with us for a long time and came back to check in later in the evening too. My parents arrived while he was there and a short time later their pastor arrived. So we covered Sabrina’s bases pretty well, actually a chaplain and two pastors equals bases loaded, all we needed was a surgeon to knock one out of the park to bring them all home.
They came for her around 4:00, it took a little while to move her from her open bed that you have seen in pictures to the isolette (a small lexan box) for transport. We spoke to the surgeon, Dr. Coln, as they were loading her up. We had met him briefly before, Dr. Bell, the surgeon we had spoken to several times was not on duty today. We like Dr. Bell and had heard great things about him. We figured anyone he would chose to be in a practice with must be good and so we had no problem with Dr. Coln performing the surgery. He told us that he was going to go in endoscopicly to see how bad the diaphragmatic hernia was, hoping that if it was small enough he could move the stomach and intestines down and close the hole without opening her up any more than necessary. If there were any problems he would then go in the traditional way. Problems being, the organs not returning to where they belonged or if the hole was larger.
We followed the parade of baby and equipment down to the OR, spoke to the anesthesiologist for a few minutes, felt Sabrina was in good hands and went back upstairs to the NICU to wait for her return. The transport nurse told us that she stayed with the baby during surgery too and would call us with updates. We knew that if everything went perfect that it would take around an hour. Anything that made things more complex would take two or more hours. They called us at 4:30 to tell us surgery had begun. At 4:40 the transport nurse called and told us that the endoscope method would not work, the hole was too big. I asked if it was big or Gore-Tex big. She said Gore-Tex. This was no surprise. It’s always better to not have the Gore-Tex, if things can be sewn up using all natural materials things heal and grow. Gore-Tex does not grow. Gore-Tex, while inert, is still a foreign body inside the body. Gore-Tex increases the risk of re-herniation later in life as the body grows but the plastic does not. However, we will just have to deal with that at some point in the future.
We then proceeded to wait. My wife and I, her father, my mother and father and two of their friends from their church who also came by for support. The time passed quickly with quite a bit of talking and some dinner from the cafeteria. On a side note, St. John’s has some pretty good food. Though, if you ever get the chicken fingers, only get the three piece, the five piece is like getting a whole chicken. Anyway, the next time the phone rang it was around 6:40, we were told the doctor was closing and he would be up soon.
Around 15 minutes later the transport team rolled by with her in the isolette. I quickly followed them into the NICU. Her numbers were good, she looked good. Not as good as when she left us a few hours earlier, but still good. The transport team proceeded to put her back into an open bed like she had been in before. While they were doing that the surgeon arrived to tell us the following; everything went well. There was a little trouble getting everything into her lower abdomen and they would be watching for any problems resulting from this, if necessary they could open her back up and take steps to alleviate any problems. Her numbers stayed good throughout the surgery, she tolerated it very well. The hole in her diaphragm was approximately 2/3 open, so only 1/3 of a diaphragm was present. He was able to stretch what was there and used a patch the size of 1/2 to 1/3 of her diaphragm. So the hole was very large, there was quite a bit of intestine, the stomach and some spleen in her chest. All in all, a very successful surgery.
They took an x-ray a few minutes later to see how the lungs looked, and they looked great. The neonatologist brought up the image from this morning and put it on screen next to the one they had just taken. The image this morning was very nice, a large amount of lung was inflated, the one they had just taken was showing even more left lung than the morning x-ray. It’s hard to tell just how much as there is some air in her chest from the space left after surgery but there was still, clearly, more lung there than there was this morning.
When she left for surgery, she was on the ventilator at around 32 breaths per minute at 60% oxygen. The lowest her oxygen had been was 58% and that did not last long. Now after surgery, they started her at 60% oxygen and 40 breaths per minute. Then they just kept dropping the settings as she was oxygenating at 100% or more. They had dropped it to 40% by the time we left at 30 breaths per minute and she was still at 99% oxygenation. Something appears to be working and working properly. Possibly more importantly, at least for her mother and I, she woke up while we were there, she opened her eyes again and was looking around. Her numbers stayed stable and she did not appear to be in any distress at all. She even wiggled her hands and feet at us. As her mother just said, “A sight we cannot get enough of.”
And that is where I will leave things for tonight. I can’t think of anything else to say except, “A Lady always keeps her bow on during surgery.” She left with a small pink bow on her head, on her return her mother commented that she even kept her bow. To which I replied with the title statement, “A Lady ALWAYS keeps her bow on during surgery.” Think on that one for a while. I will be back tomorrow.
1 Comment
October 23rd, 2007 at 12:41 pm
(CDH, Sabrina)
Bloody hell… Heather just called, they are going ahead with surgery today. After 2:00. I am leaving work now.
1 Comment
October 23rd, 2007 at 8:08 am
(CDH, ClearlyRandom, Sabrina)
I spoke to the nurse a short time ago. There were no more episodes over night. She tolerated being moved and having her head moved. The only change they made was to bring the oxygen back down to 60%. Otherwise she has been steady all night.
There are a few things I have been meaning to post for the last few weeks but, since I have been living in my own little world, I have not. First, Pauline, I have thanked you before for the support you gave my family, my parents, after Jessica died and as Grandpa died. I wanted to thank you again for thinking about us and Sabrina (Little Elvis) (Sorry, inside joke, I will try and avoid them in the future.) even while Roger was passing away. Roger was my grandfathers nephew. Cancer took him from us just a few weeks ago.
Next, a thank you to everyone who has been thinking about Sabrina, praying, lighting candles, etc.
Finally, a link to a story called Welcome to Holland written by Emily Perl Kingsley.
3 Comments