Hi family and friends,
Elizabeth continues to get food by mouth, and for the most part is keeping it down. Today she had a test to determine if her digestive system was working properly and everything came back normal. That is a relief, and we're praying that the difficulty she had with keeping her feeding tube down was simply an issue of discomfort with the tube and will be easily resolved by our new method of food delivery. She's still figuring out how to coordinate the whole suck/swallow thing, but we're taking it slowly, and we have to remember that when it comes to eating by mouth, she's only 24 hours old!
Please continue to pray
-that Elizabeth will learn how to feed, keep her food down and start gaining weight (so far, since birth she's lost and never regained over a pound. She's getting lots of nutrition and fluids through IV, but hasn't been able to gain weight...She should be gaining 30 grams a day...and this will need to happen before she can eventually leave the hospital.)
-for grace for Matt and I as we learn our limits. Right now we have very little energy for anything other than keeping vigil at the hospital and rooting for Elizabeth. We need restorative sleep and moments of respite and refreshment along this journey. We are praising God for family and friends who are making such an effort to nurture us (through phone messages, emails, cards, care packages, meals and prayers) so that we can expend our energy to nurture Elizabeth. Thank you for your understanding when your phone calls and emails go unanswered. We are definitely blessed by each one, and you are loving her as you love us...
-for continued health for both of us (and our families as they come to visit)
Finally Elizabeth's medical issues remain the same as yesterday...she still has mysteriously low sodium, her chest tube drainage continues to hit around 200 cc's/day, she's not peeing enough and her blood clot remains. Pray for Elizabeth's doctors and nurses to have wisdom beyond their experience as they seek to find the reasons for and treat these problems. What is a mystery to them is completely known to God who created and holds Elizabeth's life in His hands. Pray for insight for everyone involved in Elizabeth's care.
We love you and continue to be sustained by your prayers and love. There simply are not words to say "Thank You" enough...
love,
Sara & Matt
Monday, November 7, 2005
Sunday, November 6, 2005
Elizabeth Archives - Day 23
Dear Friends and Family,
If you're rushed and don't need the details, skip to the prayer requests below. But if you're interested in the the Saga of Elizabeth and her feeding tubes, read on.
To briefly recap: The composition of Elizabeth's chest tube drainage is lymphatic fluid. When humans eat a meal filled with fatty acids and triglycerides, the intestines absorb these nutrients. They are turned into "chylomicrons" that are then shuttled to the lymphatic vessels of the intestines, and from there on up to where the lymphatics meet the veins. From the veins, they are distributed to the rest of the body.
The big hold-up in Elizabeth's recovery is the healing of the lymphatics damaged by her surgery. If she were to eat a fatty meal right now (like breast milk), her lymphatic flow would increase dramatically and delay the sealing off of those damaged lymphatic vessels. So for now, we are trying to get a fatty-acid free diet into her. The Team has been trying to do this using a feeding tube.
There are several types of feeding tubes. The type Elizabeth has had is called a Naso-Gastric ("NG") feeding tube. It's a thin rubber tube that gets inserted through the nose, runs down the esophagus into the stomach. There is a Naso-Jejunal ("NJ") tube which is just like the NG tube except that the tip goes past the stomach and ends in the jejunum (the first portion of the small intestine). Lastly, there is a "PEG" tube, which stands for percutaneous endo-gastrostomy. This is a surgically inserted feeding tube that is placed through the wall of the abdomen and into the stomach or jejunum and stitched into place. The PEG tube is usually reserved for situations for a feeding tube will be required for an extended period of time. The NG and NJ tubes can only be used for a month or two before they start doing erosive damage to the nose.
As you have been reading, The Team has been fighting to get Elizabeth an NJ tube because all of her NG feeding tubes have resulted in vomiting. Why this is the case has been unclear. It could simply be that Elizabeth's throat is very sensitive to the presence of the tube and it causes her to gag frequently enough to bring the food up. Or it could be a problem with the pyloric valve. The pyloric valve is the outlet valve of the stomach. It acts like a sphincter, periodically relaxing to allow small amounts of food to exit the stomach and proceed to the intestines. The pylorus is something like the metering light on a freeway- controlling how much food is passing through the intestines at one time. Of course, if the metering light stays red all the time, the cars back up onto the on-ramp and cog the surface city streets. If the pylorus is not relaxing properly, the food fills up the stomach, backs up into the esophagus and causes vomiting.
None of Elizabeth's 7(!!!!!) feeding tubes has ever made it out of the stomach, even when using X-ray guidance. One went down into the stomach, did some loops in there and the tip came back up the esophagus and up into her nose! Yesterday's tube slowly slid back up and Sara found it coiled around in her mouth this morning! As a result of these difficulties, some have suspected something might be wrong with the pyloric valve. However, ultrasound pictures have failed to find a problem with it.
After her feeding tube had to be removed this morning, my brilliant wife had the brilliant idea of trying to feed Elizabeth the non-fat formula with a bottle! In retrospect, it isn't quite clear to us why The Team hadn't thought of this simple solution before. Maybe it's because the formula apparently tastes horrible and babies usually spit it out. Grandma Suzie tasted it and says it reminds her of wet cardboard (where she's been sampling wet cardboard remains a mystery). After hitting themselves in the forehead and saying "Duh" under their breaths, they agreed to let us try the bottle. We got off to a slow start. We ended up dripping about 1/2 a teaspoon into her mouth because she really didn't know what to do with the nipple. Even that small amount came back up about 30 minutes later. When we returned to the hospital this evening, Sara decided we should try again with a different nipple on the bottle. In less than 5 minutes she'd consumed a whole Teaspoon! That's all they want her to have each time for now. She didn't seem to mind the taste, probably because the only other thing that's been in her mouth is a pacifier and Vaseline. We're really looking forward to holding and feeding her.
Prayer requests:
1- That Elizabeth would continue to hold down her feedings, keeping us from having to try yet another feeding tube.
2- She had another fever today, so pray that she's not developing another nasty infection.
3- She's still on blood thinners for that clot, so pray that she doesn't have more bleeding or clot growth.
4- Her sodium is still low, but slowly rising. Where it is going is still a mystery.
5- She hasn't been peeing hardly at all. While this might just be dehydration, pray that it's not something more serious.
6- I will probably go back to work a week from tomorrow, a thought which is already making Sara and me hyperventilate.
If you're rushed and don't need the details, skip to the prayer requests below. But if you're interested in the the Saga of Elizabeth and her feeding tubes, read on.
To briefly recap: The composition of Elizabeth's chest tube drainage is lymphatic fluid. When humans eat a meal filled with fatty acids and triglycerides, the intestines absorb these nutrients. They are turned into "chylomicrons" that are then shuttled to the lymphatic vessels of the intestines, and from there on up to where the lymphatics meet the veins. From the veins, they are distributed to the rest of the body.
The big hold-up in Elizabeth's recovery is the healing of the lymphatics damaged by her surgery. If she were to eat a fatty meal right now (like breast milk), her lymphatic flow would increase dramatically and delay the sealing off of those damaged lymphatic vessels. So for now, we are trying to get a fatty-acid free diet into her. The Team has been trying to do this using a feeding tube.
There are several types of feeding tubes. The type Elizabeth has had is called a Naso-Gastric ("NG") feeding tube. It's a thin rubber tube that gets inserted through the nose, runs down the esophagus into the stomach. There is a Naso-Jejunal ("NJ") tube which is just like the NG tube except that the tip goes past the stomach and ends in the jejunum (the first portion of the small intestine). Lastly, there is a "PEG" tube, which stands for percutaneous endo-gastrostomy. This is a surgically inserted feeding tube that is placed through the wall of the abdomen and into the stomach or jejunum and stitched into place. The PEG tube is usually reserved for situations for a feeding tube will be required for an extended period of time. The NG and NJ tubes can only be used for a month or two before they start doing erosive damage to the nose.
As you have been reading, The Team has been fighting to get Elizabeth an NJ tube because all of her NG feeding tubes have resulted in vomiting. Why this is the case has been unclear. It could simply be that Elizabeth's throat is very sensitive to the presence of the tube and it causes her to gag frequently enough to bring the food up. Or it could be a problem with the pyloric valve. The pyloric valve is the outlet valve of the stomach. It acts like a sphincter, periodically relaxing to allow small amounts of food to exit the stomach and proceed to the intestines. The pylorus is something like the metering light on a freeway- controlling how much food is passing through the intestines at one time. Of course, if the metering light stays red all the time, the cars back up onto the on-ramp and cog the surface city streets. If the pylorus is not relaxing properly, the food fills up the stomach, backs up into the esophagus and causes vomiting.
None of Elizabeth's 7(!!!!!) feeding tubes has ever made it out of the stomach, even when using X-ray guidance. One went down into the stomach, did some loops in there and the tip came back up the esophagus and up into her nose! Yesterday's tube slowly slid back up and Sara found it coiled around in her mouth this morning! As a result of these difficulties, some have suspected something might be wrong with the pyloric valve. However, ultrasound pictures have failed to find a problem with it.
After her feeding tube had to be removed this morning, my brilliant wife had the brilliant idea of trying to feed Elizabeth the non-fat formula with a bottle! In retrospect, it isn't quite clear to us why The Team hadn't thought of this simple solution before. Maybe it's because the formula apparently tastes horrible and babies usually spit it out. Grandma Suzie tasted it and says it reminds her of wet cardboard (where she's been sampling wet cardboard remains a mystery). After hitting themselves in the forehead and saying "Duh" under their breaths, they agreed to let us try the bottle. We got off to a slow start. We ended up dripping about 1/2 a teaspoon into her mouth because she really didn't know what to do with the nipple. Even that small amount came back up about 30 minutes later. When we returned to the hospital this evening, Sara decided we should try again with a different nipple on the bottle. In less than 5 minutes she'd consumed a whole Teaspoon! That's all they want her to have each time for now. She didn't seem to mind the taste, probably because the only other thing that's been in her mouth is a pacifier and Vaseline. We're really looking forward to holding and feeding her.
Prayer requests:
1- That Elizabeth would continue to hold down her feedings, keeping us from having to try yet another feeding tube.
2- She had another fever today, so pray that she's not developing another nasty infection.
3- She's still on blood thinners for that clot, so pray that she doesn't have more bleeding or clot growth.
4- Her sodium is still low, but slowly rising. Where it is going is still a mystery.
5- She hasn't been peeing hardly at all. While this might just be dehydration, pray that it's not something more serious.
6- I will probably go back to work a week from tomorrow, a thought which is already making Sara and me hyperventilate.
Saturday, November 5, 2005
Elizabeth Archives - Day 22
Today was much like yesterday...a few setbacks with Elizabeth's medical condition but continued progress in our relationship with her and sense of our being a family.
Several days ago, The Team suspected Elizabeth might have a blood clot filling up one of the major vessels leading to her heart. They thought this would likely explain her legs turning blue when she cries. An ultrasound performed yesterday or late Thursday confirmed their suspicions. Normally, they don't treat these clots, but unfortunately, this is no ordinary blood clot. Setting yet another record, it extends from the vessel behind her left knee all the way up to where blood enters her heart. There is a much smaller one forming on the right side too. Because they fear it might extend further without treatment (possibly risking her kidneys or heart) she has been started on a blood thinner. This is a risky decision because she just stopped having the bleeding from her stomach and it could restart. With her blood thinned now, this re-bleeding could be difficult to stop and prove even more serious.
Elizabeth's sodium continues to be mysteriously low and difficult to appropriately elevate. Lab tests have failed to reveal a clear cause, so we're tinkering with giving her tons more sodium.
The good news:
The results of the brain wave scan (EEG) came back normal. We've included a photo of the Elizabeth getting her EEG- quite a few wires!
This morning, they placed another feeding tube into Elizabeth's stomach, hoping food would go down and stay down...so far so good. She's had some VERY minor vomiting compared to previous tries. Tonight, we learned that once Elizabeth gets enough of the Portagen feedings in her system, her pee, poop and sweat will all begin smelling like rotten eggs! Somehow, I doubt that will dissuade us from wanting to be close to her.
The chest tube drained 180 ml of fluid, slightly down from the previous 24 hours.
We heard that if we can get to the stage where the chest tube comes out, the tube feedings and intravenous antibiotics are things we can learn to do at home.
Specific Prayer requests:
1. That Elizabeth's stomach would stop bleeding and not restart now that she is on blood thinners.
2. That the blood clot would not propagate, but start to dissolve and go away
3. That her sodium level would correct to normal
4. That she would continue tolerating the tube feedings without much vomiting
5. That our nightly bath and holding ritual would continue FOREVER!
6. That Jeannie or Sheila would always be assigned as her nurse, and come home to live with us when Elizabeth does.
Look forward to a Sara-authored update soon! Guaranteed to include many more details on our non-medical thoughts, feelings, hopes, and aspirations!
Love you all,
Matt (and Sara)
Several days ago, The Team suspected Elizabeth might have a blood clot filling up one of the major vessels leading to her heart. They thought this would likely explain her legs turning blue when she cries. An ultrasound performed yesterday or late Thursday confirmed their suspicions. Normally, they don't treat these clots, but unfortunately, this is no ordinary blood clot. Setting yet another record, it extends from the vessel behind her left knee all the way up to where blood enters her heart. There is a much smaller one forming on the right side too. Because they fear it might extend further without treatment (possibly risking her kidneys or heart) she has been started on a blood thinner. This is a risky decision because she just stopped having the bleeding from her stomach and it could restart. With her blood thinned now, this re-bleeding could be difficult to stop and prove even more serious.
Elizabeth's sodium continues to be mysteriously low and difficult to appropriately elevate. Lab tests have failed to reveal a clear cause, so we're tinkering with giving her tons more sodium.
The good news:
The results of the brain wave scan (EEG) came back normal. We've included a photo of the Elizabeth getting her EEG- quite a few wires!
This morning, they placed another feeding tube into Elizabeth's stomach, hoping food would go down and stay down...so far so good. She's had some VERY minor vomiting compared to previous tries. Tonight, we learned that once Elizabeth gets enough of the Portagen feedings in her system, her pee, poop and sweat will all begin smelling like rotten eggs! Somehow, I doubt that will dissuade us from wanting to be close to her.
The chest tube drained 180 ml of fluid, slightly down from the previous 24 hours.
We heard that if we can get to the stage where the chest tube comes out, the tube feedings and intravenous antibiotics are things we can learn to do at home.
Specific Prayer requests:
1. That Elizabeth's stomach would stop bleeding and not restart now that she is on blood thinners.
2. That the blood clot would not propagate, but start to dissolve and go away
3. That her sodium level would correct to normal
4. That she would continue tolerating the tube feedings without much vomiting
5. That our nightly bath and holding ritual would continue FOREVER!
6. That Jeannie or Sheila would always be assigned as her nurse, and come home to live with us when Elizabeth does.
Look forward to a Sara-authored update soon! Guaranteed to include many more details on our non-medical thoughts, feelings, hopes, and aspirations!
Love you all,
Matt (and Sara)
Friday, November 4, 2005
Elizabeth Archives - Day 21
When I was in Boston attending college, I would call my parents whenever things were going badly- stress with classes, work, friends, etc. They thought I was miserable there because I never called when things were going well. So I've learned to be diligent in passing along good news quickly...hence, an evening edition of today's update.
Before I go any further, I realize we're sending out a lot of emails and reams of InBox clogging photos. If all of this is too much for you, we won't be offended if you'd like off this mailing list. Just drop us a note and we'll take you off. And if in several days, you realize you miss the pics, just email us again and we'll add you back!
Returning to the update, I'll begin by saying that nothing much has changed with Elizabeth's medical condition, except that she vomited a lot less this afternoon. Her sodium is still too low (but moving in the right direction) and there is still no firm plan on how she's going to get fed given her stomach issues. But OUR mental condition IS improving greatly. The nurse assigned to Elizabeth tonight is a gift from God. She has a can-do attitude and let us bathe, dress and then hold the daylights out of our daughter. Elizabeth was better able to focus on our faces and at one point, obviously recognized her mother's voice and moved around to try and find Sara. We naturally found all of this deeply nourishing. For the first time, we felt like real parents!
Love,
Matt and Sara
Before I go any further, I realize we're sending out a lot of emails and reams of InBox clogging photos. If all of this is too much for you, we won't be offended if you'd like off this mailing list. Just drop us a note and we'll take you off. And if in several days, you realize you miss the pics, just email us again and we'll add you back!
Returning to the update, I'll begin by saying that nothing much has changed with Elizabeth's medical condition, except that she vomited a lot less this afternoon. Her sodium is still too low (but moving in the right direction) and there is still no firm plan on how she's going to get fed given her stomach issues. But OUR mental condition IS improving greatly. The nurse assigned to Elizabeth tonight is a gift from God. She has a can-do attitude and let us bathe, dress and then hold the daylights out of our daughter. Elizabeth was better able to focus on our faces and at one point, obviously recognized her mother's voice and moved around to try and find Sara. We naturally found all of this deeply nourishing. For the first time, we felt like real parents!
Love,
Matt and Sara
Thursday, November 3, 2005
Elizabeth Archives - Day 20
I've decided to try and write these updates during the day...the situation always seems less bleak after a good night of sleep! Additionally, some of you might get the email in time to pray for the upcoming day's events.
Since yesterday's mid-afternoon update, not much progress has been made. They were able to get another long-term IV in her right arm, allowing them to (finally!) remove her groin IV. Now she can kick her feet around at will (which she has been doing frequently to express her irritation). Sadly, the overnight nurse thought Elizabeth needed a "back-up" IV and found a vein on the side of her head. Now she can't turn her head or wear any of her cute hats!
They managed to fit her in for another try at placing the feeding tube past her stomach. Sadly, they failed a second time, and in trying, caused her stomach to start bleeding. Shortly after the procedure, she began vomiting blood and blood clots, enough that her blood count dropped low and she required yet another blood transfusion. To help get the blood out of her stomach, they had to put another tube through her mouth and down into the stomach. Today, a pediatric gastroenterologist will see Elizabeth to figure out where the bleeding is coming from, how to stop it, and figure out why the feeding tubes keep getting stuck in her stomach.
I briefly mentioned yesterday the problem with Elizabeth's electrolyte levels. I thought it would turn out to be a lab error...but I was wrong. The reasons are still unclear, but Elizabeth's sodium did, in fact, get dangerously low. Often, a level that low would produce a coma or seizure. Thankfully, neither of these developed. The Team is working hard to find out why the sodium got so low, and it may be something as stupid as giving her the wrong IV fluids.
I haven't mentioned this before, but since she began opening her eyes, Elizabeth has been periodically making strange eye movements. I thought they were probably just "ICU baby" eye movements and didn't make a big deal of them until they started becoming more frequent yesterday. So ophthamology and neurology stopped by to see her. The ophthamologist said that everything looks good with her eyes and agreed that the types of movements I was seeing are common in sick newborns. The neurologists agreed, but recommended that we exclude the possibility of seizures with a brain wave scan (an EEG) and to some time in the future do an MRI to see exactly what's going on with the brain. The EEG was performed yesterday, but the results aren't back yet. We are reassured by these findings.
Watching Elizabeth gagging on the tubes and frequently vomiting has been one of the hardest aspects of our journey so far. When you can't do anything to soothe her, things start feeling hopeless and unending. We are trying hard to keep perspective, but these "light and momentary afflictions" seem too heavy and long-lasting.
On the brighter side, Elizabeth is now three weeks old (technically not until 4:02pm). There were times earlier in her hospitalization where we weren't sure she would survive this long. For this we are truly grateful. Additionally, one of our favorite nurses is taking care of Elizabeth today and has NO other patients to distract her.
For your prayerful consideration:
1. That Elizabeth might be able to find a comfortable position and some sweet sleep
2. That the bleeding from her stomach lining would stop and a cause easily found
3. That her white blood cell count would come down and remaining infections cleared out
4. That her mother and father's hope would be restored and faith buoyed
Sincerely,
Matt and Sara
Since yesterday's mid-afternoon update, not much progress has been made. They were able to get another long-term IV in her right arm, allowing them to (finally!) remove her groin IV. Now she can kick her feet around at will (which she has been doing frequently to express her irritation). Sadly, the overnight nurse thought Elizabeth needed a "back-up" IV and found a vein on the side of her head. Now she can't turn her head or wear any of her cute hats!
They managed to fit her in for another try at placing the feeding tube past her stomach. Sadly, they failed a second time, and in trying, caused her stomach to start bleeding. Shortly after the procedure, she began vomiting blood and blood clots, enough that her blood count dropped low and she required yet another blood transfusion. To help get the blood out of her stomach, they had to put another tube through her mouth and down into the stomach. Today, a pediatric gastroenterologist will see Elizabeth to figure out where the bleeding is coming from, how to stop it, and figure out why the feeding tubes keep getting stuck in her stomach.
I briefly mentioned yesterday the problem with Elizabeth's electrolyte levels. I thought it would turn out to be a lab error...but I was wrong. The reasons are still unclear, but Elizabeth's sodium did, in fact, get dangerously low. Often, a level that low would produce a coma or seizure. Thankfully, neither of these developed. The Team is working hard to find out why the sodium got so low, and it may be something as stupid as giving her the wrong IV fluids.
I haven't mentioned this before, but since she began opening her eyes, Elizabeth has been periodically making strange eye movements. I thought they were probably just "ICU baby" eye movements and didn't make a big deal of them until they started becoming more frequent yesterday. So ophthamology and neurology stopped by to see her. The ophthamologist said that everything looks good with her eyes and agreed that the types of movements I was seeing are common in sick newborns. The neurologists agreed, but recommended that we exclude the possibility of seizures with a brain wave scan (an EEG) and to some time in the future do an MRI to see exactly what's going on with the brain. The EEG was performed yesterday, but the results aren't back yet. We are reassured by these findings.
Watching Elizabeth gagging on the tubes and frequently vomiting has been one of the hardest aspects of our journey so far. When you can't do anything to soothe her, things start feeling hopeless and unending. We are trying hard to keep perspective, but these "light and momentary afflictions" seem too heavy and long-lasting.
On the brighter side, Elizabeth is now three weeks old (technically not until 4:02pm). There were times earlier in her hospitalization where we weren't sure she would survive this long. For this we are truly grateful. Additionally, one of our favorite nurses is taking care of Elizabeth today and has NO other patients to distract her.
For your prayerful consideration:
1. That Elizabeth might be able to find a comfortable position and some sweet sleep
2. That the bleeding from her stomach lining would stop and a cause easily found
3. That her white blood cell count would come down and remaining infections cleared out
4. That her mother and father's hope would be restored and faith buoyed
Sincerely,
Matt and Sara
Wednesday, November 2, 2005
Elizabeth Archives - Day 19
Hello All-
Our email server was down yesterday, hence the combined report for today...
After Elizabeth's chest tube almost fell out the other day, the doctor-in-me decided to become more involved in Elizabeth's care. The hospital doctors and nurses are wonderful and competent, but an extra set of eyes and ears seems only beneficial. So I have begun scrutinizing her labs and X-rays, and this morning started attending "rounds." "Rounds" means the 10 minute block of time where "The Team" (nurses, on-coming attending, out-going attending, residents, fellows and case managers) gets together to discuss the patient's progress and care. The MDs were very open to having me there and allowed me to input and question their plans. As a result of my prodding, I think they are moving faster on some things than they had planned initially.
Yesterday, Elizabeth went to the Interventional Radiology labs where they attempted to place yet another feeding tube past her stomach and into the intestines. For the first time in 12 years (according the head MD), they failed! So they left the tube in her stomach only and decided to try feeding her for the fourth time. And for the fourth time, she started throwing it all up again. The Team was planning to give her another day to see if her stomach starts working better before asking Interventional Radiology to try again. I politely reminded them that we've been trying this approach for almost a week and insisted that they make the Interventional Radiology plans now.
While sitting with her yesterday, Sara noticed that whenever Elizabeth cried both of her legs would become slightly purplish, as if the blood wasn't getting there appropriately. The doctors suspect that large vein feeding into the heart may have clotted off and they are running tests to see if this is true. In the meantime, I convinced them that the IV in her groin needed to come out and be replaced elsewhere. I'm writing this message while they are doing that procedure.
Despite all of this, Elizabeth is hanging in there and continues to look cute. Her weight loss has stabilized. She gets less irritated by diaper changes, the blood pressure cuff and temperature checks. She recovers more quickly from each episode of vomiting. Yesterday, Sara very boldly trimmed Elizabeth's finger nails for the first time. We finally found some onesies that snap down the left side (to allow an exit for her chest tube) and at the bottom (for the heart monitors and IV tubing), so starting today, she may be able to wear clothes!
Sara and I are hanging in there as well, thanks no doubt to your sustaining prayers. It is hard for us to pray sometimes, and we appreciate you taking these requests to God on our behalf.
Thanks a million,
Matt
Our email server was down yesterday, hence the combined report for today...
After Elizabeth's chest tube almost fell out the other day, the doctor-in-me decided to become more involved in Elizabeth's care. The hospital doctors and nurses are wonderful and competent, but an extra set of eyes and ears seems only beneficial. So I have begun scrutinizing her labs and X-rays, and this morning started attending "rounds." "Rounds" means the 10 minute block of time where "The Team" (nurses, on-coming attending, out-going attending, residents, fellows and case managers) gets together to discuss the patient's progress and care. The MDs were very open to having me there and allowed me to input and question their plans. As a result of my prodding, I think they are moving faster on some things than they had planned initially.
Yesterday, Elizabeth went to the Interventional Radiology labs where they attempted to place yet another feeding tube past her stomach and into the intestines. For the first time in 12 years (according the head MD), they failed! So they left the tube in her stomach only and decided to try feeding her for the fourth time. And for the fourth time, she started throwing it all up again. The Team was planning to give her another day to see if her stomach starts working better before asking Interventional Radiology to try again. I politely reminded them that we've been trying this approach for almost a week and insisted that they make the Interventional Radiology plans now.
While sitting with her yesterday, Sara noticed that whenever Elizabeth cried both of her legs would become slightly purplish, as if the blood wasn't getting there appropriately. The doctors suspect that large vein feeding into the heart may have clotted off and they are running tests to see if this is true. In the meantime, I convinced them that the IV in her groin needed to come out and be replaced elsewhere. I'm writing this message while they are doing that procedure.
Despite all of this, Elizabeth is hanging in there and continues to look cute. Her weight loss has stabilized. She gets less irritated by diaper changes, the blood pressure cuff and temperature checks. She recovers more quickly from each episode of vomiting. Yesterday, Sara very boldly trimmed Elizabeth's finger nails for the first time. We finally found some onesies that snap down the left side (to allow an exit for her chest tube) and at the bottom (for the heart monitors and IV tubing), so starting today, she may be able to wear clothes!
Sara and I are hanging in there as well, thanks no doubt to your sustaining prayers. It is hard for us to pray sometimes, and we appreciate you taking these requests to God on our behalf.
Thanks a million,
Matt
Tuesday, November 1, 2005
Elizabeth Archives - Day 18
My, my, my. Today was a toughie. It started with attempts to place a new feeding tube through Elizabeth's nose, through her esophagus, her stomach and into the intestines...at 4 am. You can guess what she thought of that! After an hour of recovery, they changed the IV line that enters her femoral vein near her groin...also fun. She got to sleep until early afternoon, when we got her out of bed for me to hold her. While she sat fussing on my lap, I noticed that the fluid draining from her side was frothy and noticed the sound of air escaping around her chest tube. In case you are wondering- that's not good at all. I called in the nurse and asked her to get the surgeon and some other staff. Squeamish folks stop here! The chest tube had been moving around enough to stretch the opening into her chest and the stitches holding it in place had broken. We caught it just prior to falling out (which would have been a disaster). Ideally, the chest tube would have been pulled out and a new one placed. Unfortunately, Elizabeth's body is quite small and the available spots to put the new one have already been used up. So they cleaned the tube and area as best they could and sewed it back into place. Now we hope it doesn't become infected! She became anemic enough overnight to require another blood transfusion, they still haven't managed to get the feeding tube passed her stomach, her groin IV isn't allowing them to draw blood through it (one of its main functions) and the same IV seems to be obstructing venous outflow so that her left leg keeps turning slightly bluish.
As you might have guessed from the lead-up, tonight's prayer request list is somewhat lengthy:
1. We're bummed. Today feels like four steps backward and it seems like our last step forward was quite awhile ago. We need better strength and stamina for this ICU roller coaster.
2. Low red blood cells: the constant decline in her red blood cells mostly comes from the blood they need to constantly remove for cultures and tests. She's now required two transfusions. The most recent drop in her count was faster than expected and we're still not sure where its going.
3. IV access: the IV line in Elizabeth's groin is very important and is supposed to do three things. First, allow several different medications and solutions to be administered simultaneously. Second, allow easy drawing of blood samples without have to stick Elizabeth with a needle. Lastly, it allows them to measure her venous blood pressure. But it's not working for drawing blood currently and so every test Elizabeth needs requires finding another vein and putting her through the pain of sticking her. The IV line is also a major infection risk. Since they changed the tubing this morning, her leg turns blue in certain positions. Pray that they will know whether to find a new site or stick with this one.
4. Infection: Elizabeth continued to have fevers today and her white blood cells are still very elevated (a sign of infection). A clear source for this has not yet been found. We also found out that she will need at least 6 weeks of intravenous antibiotics for those blood bacteria she had last week. What this means for our hopes to bring her home before I go back to work is unclear.
5. Chest tube: We used to be ultra-concerned about how much fluid was coming out. Our new worry is whether the chest tube itself its coming out! We're very nervous now about holding her, afraid of dislodging the stitches. It could also be the source a new infection since it was exposed to the air.
6. Nutrition: Tonight, they're going to try a fourth time to get a feeding tube past the stomach. Because the tube passes through the nose and down the throat, it rubs constantly and produces a nearly continuous gagging sensation. Babies get used to this eventually, but it is very uncomfortable at first. The plans to start feeding her have been delayed now three days as a result of not getting it to the right spot. Pray that it gets there and that Elizabeth will get used to its presence quickly.
Enough for now. It's easy to lose perspective late at night. We have truly experienced the fact that God's mercies are new every morning. And we're still trusting in his faithfulness.
Matt and Sara
As you might have guessed from the lead-up, tonight's prayer request list is somewhat lengthy:
1. We're bummed. Today feels like four steps backward and it seems like our last step forward was quite awhile ago. We need better strength and stamina for this ICU roller coaster.
2. Low red blood cells: the constant decline in her red blood cells mostly comes from the blood they need to constantly remove for cultures and tests. She's now required two transfusions. The most recent drop in her count was faster than expected and we're still not sure where its going.
3. IV access: the IV line in Elizabeth's groin is very important and is supposed to do three things. First, allow several different medications and solutions to be administered simultaneously. Second, allow easy drawing of blood samples without have to stick Elizabeth with a needle. Lastly, it allows them to measure her venous blood pressure. But it's not working for drawing blood currently and so every test Elizabeth needs requires finding another vein and putting her through the pain of sticking her. The IV line is also a major infection risk. Since they changed the tubing this morning, her leg turns blue in certain positions. Pray that they will know whether to find a new site or stick with this one.
4. Infection: Elizabeth continued to have fevers today and her white blood cells are still very elevated (a sign of infection). A clear source for this has not yet been found. We also found out that she will need at least 6 weeks of intravenous antibiotics for those blood bacteria she had last week. What this means for our hopes to bring her home before I go back to work is unclear.
5. Chest tube: We used to be ultra-concerned about how much fluid was coming out. Our new worry is whether the chest tube itself its coming out! We're very nervous now about holding her, afraid of dislodging the stitches. It could also be the source a new infection since it was exposed to the air.
6. Nutrition: Tonight, they're going to try a fourth time to get a feeding tube past the stomach. Because the tube passes through the nose and down the throat, it rubs constantly and produces a nearly continuous gagging sensation. Babies get used to this eventually, but it is very uncomfortable at first. The plans to start feeding her have been delayed now three days as a result of not getting it to the right spot. Pray that it gets there and that Elizabeth will get used to its presence quickly.
Enough for now. It's easy to lose perspective late at night. We have truly experienced the fact that God's mercies are new every morning. And we're still trusting in his faithfulness.
Matt and Sara
Monday, October 31, 2005
Elizabeth Archives - Day 17
The highlights and lowlights:
+001+(Medium).jpg)
~They had to stop feeding Elizabeth because she continued to throw up throughoutlast night and today. Finally they gave her some meds intended to help her tummy hold onto the Portagen and tomorrow they'll replace her NG tube with one that will go all the way in and out of her stomach and drop the food off past the point where it is causing her to vomit. Hopefully this will keep more of the nutrients moving through her. Please pray that this is effective. They may also reassess the decision to feed her at all before her chest-tube drainage has stopped. They may decide to backtrack and hold off future feedings until she's completely "dry". In that case they would still give her the nutrient rich fluids she was previously receiving. We don't know what is best for her. Our end goal is for her fluid drainage to stop altogether and for her to be able to breastfeed as soon as possible. God knows the best path toward this end and we're asking Him to give the doctors wisdom.
~After my email last night regarding our worries about how to comfort her, I think we made a breakthrough today. After being awake all day (from about 10am until 5pm) Elizabeth was clearly distraught. She had a fever and all her vital signs showed that she was in distress. Finally, the nurse suggested I hold her (something I had been hesitant to do since she was throwing up and I didn't want to make her more uncomfortable). The moment I put her up on my shoulder (see the attached picture) she immediately went to sleep! I had to put her down after about an hour for a weighing and blood draw, but she went right back to sleep and stay that way- all evening. It was wonderful to be able to comfort her. It is my prayer that even in my absence she would feel cradled all night by her Heavenly Father.
We will all sleep well tonight,
Love,
Sara & Matt
+001+(Medium).jpg)
~They had to stop feeding Elizabeth because she continued to throw up throughoutlast night and today. Finally they gave her some meds intended to help her tummy hold onto the Portagen and tomorrow they'll replace her NG tube with one that will go all the way in and out of her stomach and drop the food off past the point where it is causing her to vomit. Hopefully this will keep more of the nutrients moving through her. Please pray that this is effective. They may also reassess the decision to feed her at all before her chest-tube drainage has stopped. They may decide to backtrack and hold off future feedings until she's completely "dry". In that case they would still give her the nutrient rich fluids she was previously receiving. We don't know what is best for her. Our end goal is for her fluid drainage to stop altogether and for her to be able to breastfeed as soon as possible. God knows the best path toward this end and we're asking Him to give the doctors wisdom. ~After my email last night regarding our worries about how to comfort her, I think we made a breakthrough today. After being awake all day (from about 10am until 5pm) Elizabeth was clearly distraught. She had a fever and all her vital signs showed that she was in distress. Finally, the nurse suggested I hold her (something I had been hesitant to do since she was throwing up and I didn't want to make her more uncomfortable). The moment I put her up on my shoulder (see the attached picture) she immediately went to sleep! I had to put her down after about an hour for a weighing and blood draw, but she went right back to sleep and stay that way- all evening. It was wonderful to be able to comfort her. It is my prayer that even in my absence she would feel cradled all night by her Heavenly Father.
We will all sleep well tonight,
Love,
Sara & Matt
Sunday, October 30, 2005
Elizabeth Archives - Day 16
Hi Friends and Family,
Today was a better day...Grandpa Peterson drove over from Clovis to visit, bless us with his presence and his guitar, and take my mom home for some much needed rest. Grandma & Grandpa Harms and Auntie Julia (who's feeling much better!) came up and the whole family had a great time of prayer and worship. We have so much to be thankful for and we were able to express our gratitude for God's faithfulness.
Elizabeth is progressing. They gave her an NG tube (down her nose and into her stomach for direct feedings) and have started her on "Portagen" (an elemental diet)...which they tell us tastes pretty gross. As a result of that and because her digestive system hasn't done ANY work in the last 15 days, her stomach is basically NOT excited about the activity, so a few tablespoons have come right back up. That's typical (they tell us) so we're praying she'll acclimate to the whole eating thing pretty fast and hold down the much needed nutrients. So far, her fluid output is also decreasing...also a good sign. Please pray that it continues to decrease even with the increased input of food. Later tonight they'll take out her only IV (just in case it's harboring that pesky bacteria) and try to start another one so she can continue to receive the antibiotics and other necessary fluids.
+004+(Medium).jpg)
Both Matt and I held her today; a wonderful treat. We look forward to the days of "passing her around" for all our friends and family to enjoy, but until then, we are savoring the moments we have with her. During these days of hospitalization we've begun to realize how insecure we feel about how to take care of her...how to recognize if she's comfortable, irritable or in pain...and often feel inadequate to meet her needs, since they've been so well-met by such competent nurses and doctors for the last two weeks. Without a machine to tell us if she's ok, how will we know what to do?!?! We would appreciate your prayers for grace during this unique transition into parenting, as well as for confidence in the God-given intuition that (we've been told) all parents have. At the same time, we're still working overtime to touch and talk to her as much as possible and trust that a bond is developing from more than just our end.
Finally, Matt's department has been absolutely incredible...loaning us a call-room in which to take breaks and rest while we're at the hospital, giving Matt the go ahead to take the past 2 weeks off while still getting paid as well as numerous visits, cards and presents from colleagues and faculty. He'll start his 2 weeks of vacation Nov. 1-13th, and we would really like to bring Elizabeth home during that time. Will you join us in praying that God would speed her recovery in order to allow us some "family time" before Matt resumes work?
As we spent time in prayer today, we specifically thanked God for each of you...you have been integral to our survival over the last weeks. These emails have been forwarded to literally hundreds of people, many of whom we've never met, who have carried this burden with us through prayers for our daughter and our family. We are forever grateful and deeply touched.
We love you all,
Sara (for all three of us
Today was a better day...Grandpa Peterson drove over from Clovis to visit, bless us with his presence and his guitar, and take my mom home for some much needed rest. Grandma & Grandpa Harms and Auntie Julia (who's feeling much better!) came up and the whole family had a great time of prayer and worship. We have so much to be thankful for and we were able to express our gratitude for God's faithfulness.
Elizabeth is progressing. They gave her an NG tube (down her nose and into her stomach for direct feedings) and have started her on "Portagen" (an elemental diet)...which they tell us tastes pretty gross. As a result of that and because her digestive system hasn't done ANY work in the last 15 days, her stomach is basically NOT excited about the activity, so a few tablespoons have come right back up. That's typical (they tell us) so we're praying she'll acclimate to the whole eating thing pretty fast and hold down the much needed nutrients. So far, her fluid output is also decreasing...also a good sign. Please pray that it continues to decrease even with the increased input of food. Later tonight they'll take out her only IV (just in case it's harboring that pesky bacteria) and try to start another one so she can continue to receive the antibiotics and other necessary fluids.
+004+(Medium).jpg)
Both Matt and I held her today; a wonderful treat. We look forward to the days of "passing her around" for all our friends and family to enjoy, but until then, we are savoring the moments we have with her. During these days of hospitalization we've begun to realize how insecure we feel about how to take care of her...how to recognize if she's comfortable, irritable or in pain...and often feel inadequate to meet her needs, since they've been so well-met by such competent nurses and doctors for the last two weeks. Without a machine to tell us if she's ok, how will we know what to do?!?! We would appreciate your prayers for grace during this unique transition into parenting, as well as for confidence in the God-given intuition that (we've been told) all parents have. At the same time, we're still working overtime to touch and talk to her as much as possible and trust that a bond is developing from more than just our end.Finally, Matt's department has been absolutely incredible...loaning us a call-room in which to take breaks and rest while we're at the hospital, giving Matt the go ahead to take the past 2 weeks off while still getting paid as well as numerous visits, cards and presents from colleagues and faculty. He'll start his 2 weeks of vacation Nov. 1-13th, and we would really like to bring Elizabeth home during that time. Will you join us in praying that God would speed her recovery in order to allow us some "family time" before Matt resumes work?
As we spent time in prayer today, we specifically thanked God for each of you...you have been integral to our survival over the last weeks. These emails have been forwarded to literally hundreds of people, many of whom we've never met, who have carried this burden with us through prayers for our daughter and our family. We are forever grateful and deeply touched.
We love you all,
Sara (for all three of us
Saturday, October 29, 2005
Elizabeth Archives - Day 15
Hopefully you have all remembered to set your clocks back tonight- hooray for an extra hour of sleep. After today, we sure could use it! Today we got our first "new parent" taste of what its like to have a difficult-to-console child. For some reason, Elizabeth cried a lot and couldn't find a comfortable position. And no matter what we tried, we couldn't make it better (certainly raising our stress level).
+012+(Medium).jpg)
Be praying for:
1. With the anti-chest drainage medication turned off, Elizabeth's fluid output has gone back up, nearly doubling (from 100 to 200cc/day). It's not a big jump and still a very manageable, but we'd hoped for continued improvement.
2. Despite the three antibiotics, that pesky bacteria continues to be found in blood stream. She is not acting seriously infected, leaving the docs stumped.
3. Suzie, my precious and very helpful mother-in-law, will be returning to Clovis tomorrow...leaving me to fill her giant cooking/cleaning/caring shoes.
4. Her voice was a little louder today, but still not what it should be. Keep praying that the cords and nerves will heal completely.
5. Tomorrow, we will again gather in her room for church, hoping to have another time of peace-bringing worship and prayer.
Love you folks,
Matt
+012+(Medium).jpg)
Be praying for:
1. With the anti-chest drainage medication turned off, Elizabeth's fluid output has gone back up, nearly doubling (from 100 to 200cc/day). It's not a big jump and still a very manageable, but we'd hoped for continued improvement.
2. Despite the three antibiotics, that pesky bacteria continues to be found in blood stream. She is not acting seriously infected, leaving the docs stumped.
3. Suzie, my precious and very helpful mother-in-law, will be returning to Clovis tomorrow...leaving me to fill her giant cooking/cleaning/caring shoes.
4. Her voice was a little louder today, but still not what it should be. Keep praying that the cords and nerves will heal completely.
5. Tomorrow, we will again gather in her room for church, hoping to have another time of peace-bringing worship and prayer.
Love you folks,
Matt
Friday, October 28, 2005
Elizabeth Archives - Day 14
Elizabeth is 14 days old today! Throughout her post-surgical course, she has been on a medication called octreotide to try and slow her chest fluid drainage. Today, the doctors stopped that medicine to see if her fluid output would continue to decline. We'll know tomorrow. +007+(Medium).jpg)
I got to hold her all afternoon, and learned first hand just how irritated babies become when their diapers are wet! Fortunately, one of the antibiotics makes her pee bright orange, so it's pretty easy to see whether she's wet or not.Even better, the hospital is going to great lengths to "normalize" Elizabeth's environment. They've brought in a bed that looks more like a crib and given her a mobile. They also said we could begin dressing her in clothes as the pictures reveal.
She also passed her hearing test+013+(Medium).jpg)
with flying colors, which might explain why she gets super calm when her mother is singing her lullabies.Current issues include:1. Continued reduction of her chest tube drainage2. Successful treatment of the bacteria that were in her blood stream3. My sister arrived from Germany yesterday with a cold! Pray that she will recover quickly so that we can let her spend time with her niece.
Thanks for your support,
Matt and Sara
+007+(Medium).jpg)
I got to hold her all afternoon, and learned first hand just how irritated babies become when their diapers are wet! Fortunately, one of the antibiotics makes her pee bright orange, so it's pretty easy to see whether she's wet or not.Even better, the hospital is going to great lengths to "normalize" Elizabeth's environment. They've brought in a bed that looks more like a crib and given her a mobile. They also said we could begin dressing her in clothes as the pictures reveal.
She also passed her hearing test
+013+(Medium).jpg)
with flying colors, which might explain why she gets super calm when her mother is singing her lullabies.Current issues include:1. Continued reduction of her chest tube drainage2. Successful treatment of the bacteria that were in her blood stream3. My sister arrived from Germany yesterday with a cold! Pray that she will recover quickly so that we can let her spend time with her niece.Thanks for your support,
Matt and Sara
Thursday, October 27, 2005
Elizabeth Archives - Day 13
Sara and I have heard that many of you are on "pins and needles" wondering what's the latest with Elizabeth. Several of you have suggested brief daily updates on her progress to reveal God's answers to prayers and guide prayers for the future. There's nothing we like better than talking about our new daughter, so here goes...(you're going to have to tell us when to shut up, or at least ask to get off the distribution list :-)
-Elizabeth had one of her chest tubes removed. The fluid draining from that one had dwindles to almost nothing. A little bit of morphine, a few snips on the stitches and it was out!
-Her fluid output was lower than yesterday's by about 50ml!
-Her blood cultures continue to grow small amounts of a bacteria called Staphylococcus aureus. It is very resistant to several usual antibiotics, so they already had her on two powerful antibiotics called vancomycin and gentimicin. Now they are adding rifampin which will turn her urine, chest tube fluid and even her tears bright orange. While we anticipate the successful treatment of this bacteria, it can stick to and destroy heart valves, lodge in joints and cause bone infections. Pray that none of these occur.
-Her bacterial infection reminds us that she has lost a lot of immune cells and proteins out her chest tube fluid, and as a result, is mildly immunocompromised (more susceptible to bacteria and viruses that we, or any staff, might bring with them). Pray for her protection and our continued health so that we can continue to visit and hold her.
-Sara got to hold Elizabeth again for several hours today...made possible by her continued healing from delivery.
Time to sleep,
Matt
-Elizabeth had one of her chest tubes removed. The fluid draining from that one had dwindles to almost nothing. A little bit of morphine, a few snips on the stitches and it was out!
-Her fluid output was lower than yesterday's by about 50ml!
-Her blood cultures continue to grow small amounts of a bacteria called Staphylococcus aureus. It is very resistant to several usual antibiotics, so they already had her on two powerful antibiotics called vancomycin and gentimicin. Now they are adding rifampin which will turn her urine, chest tube fluid and even her tears bright orange. While we anticipate the successful treatment of this bacteria, it can stick to and destroy heart valves, lodge in joints and cause bone infections. Pray that none of these occur.
-Her bacterial infection reminds us that she has lost a lot of immune cells and proteins out her chest tube fluid, and as a result, is mildly immunocompromised (more susceptible to bacteria and viruses that we, or any staff, might bring with them). Pray for her protection and our continued health so that we can continue to visit and hold her.
-Sara got to hold Elizabeth again for several hours today...made possible by her continued healing from delivery.
Time to sleep,
Matt
Tuesday, October 25, 2005
Elizabeth Archives - Day 11
Dear Friends and Family,
+015+(Medium).jpg)
Thank you all for your continuing prayers. Today, Elizabeth's chest tube drainage has continued to slow and her hand infection has nearly resolved. As an added bonus, her breathing has improved enough that they took her off the breathing machine altogether! As you can see by the photos attached, this has allowed us to start holding her again...a very good thing for our parent hearts.
+008+(Medium).jpg)
Keep up the good work...things are heading in the right direction.
Love,
Matt and Sara
+015+(Medium).jpg)
Thank you all for your continuing prayers. Today, Elizabeth's chest tube drainage has continued to slow and her hand infection has nearly resolved. As an added bonus, her breathing has improved enough that they took her off the breathing machine altogether! As you can see by the photos attached, this has allowed us to start holding her again...a very good thing for our parent hearts. +008+(Medium).jpg)
Keep up the good work...things are heading in the right direction.
Love,
Matt and Sara
Sunday, October 23, 2005
Elizabeth Archives - Day 9
Dear Friends and Family,
Today, Sara and I invaded Elizabeth’s room armed with all four grandparents, a guitar and a stack of worship songs. We cordoned off her room with curtains and spent some time+001+(Medium).jpg)
worshipping and praying for Elizabeth and over her. We could definitely feel God’s presence and peace there, and I feel our hope has been given a shot in the arm.
The last 24 hours have been better for Elizabeth. Yesterday, her right arm (which had two important I.V. lines in it) became hot, red and swollen to twice its normal size. This is due to a cellulitis (a bacterial infection of the tissue just below the skin) and she had to have antibiotics started to treat it. Both I.V. lines had to be removed and new sites found. They tried both sides of her forehead (ouch!) that required shaving off some of her cute hair. Eventually they had to put it in her groin.
This morning, her right foot started swelling and turning red as well, requiring the removal of that I.V. as well.All of that minor drama seems forgettable though in light of the fact that her chest tube drainage as been steadily decreasing over the last twelve hours! Things couldn’t have started to turn around at a better time- the doctors we’re starting to discuss re-operating!
While the medical interventions may be playing a role in her apparent recovery, we’re giving God the credit tonight. Keep those prayers coming.
Gratefully,
Matt and Sara
Today, Sara and I invaded Elizabeth’s room armed with all four grandparents, a guitar and a stack of worship songs. We cordoned off her room with curtains and spent some time
+001+(Medium).jpg)
worshipping and praying for Elizabeth and over her. We could definitely feel God’s presence and peace there, and I feel our hope has been given a shot in the arm.
The last 24 hours have been better for Elizabeth. Yesterday, her right arm (which had two important I.V. lines in it) became hot, red and swollen to twice its normal size. This is due to a cellulitis (a bacterial infection of the tissue just below the skin) and she had to have antibiotics started to treat it. Both I.V. lines had to be removed and new sites found. They tried both sides of her forehead (ouch!) that required shaving off some of her cute hair. Eventually they had to put it in her groin.
This morning, her right foot started swelling and turning red as well, requiring the removal of that I.V. as well.All of that minor drama seems forgettable though in light of the fact that her chest tube drainage as been steadily decreasing over the last twelve hours! Things couldn’t have started to turn around at a better time- the doctors we’re starting to discuss re-operating!
While the medical interventions may be playing a role in her apparent recovery, we’re giving God the credit tonight. Keep those prayers coming.
Gratefully,
Matt and Sara
Friday, October 21, 2005
Elizabeth Archives - Day 7
Dear Friends and Family: Before retiring for some much needed rest, Sara and I wanted to update you on Elizabeth’s status. First off, she is now one whole week old! It is hard to believe that her delivery was only seven days ago- in some ways it seems like minutes and in others, nearly forever.
Since her surgery three days ago, she has had a ventilator assisting her breathing and a tube exiting her left chest to drain off lymphatic fluid. Attempts so far to remove the breathing tube and to get the fluid drainage to slow down have been unsuccessful. The longer the breathing tube stays in, the more at risk she is for several problems, including pneumonia and permanent damage to her trachea and vocal cords. Each time the doctors change her ventilator settings to move toward getting her off the breathing machine, her left lung collapses, apparently because her chest is filling so quickly with lymphatic fluid.
The drainage of lymphatic fluid also continues. In fact, her drainage is the most anyone has ever seen. She’s leaking about 1.3 liters per day, a huge amount when you consider that represents approximately 1/3 of her body weight! As I mentioned in our last message, this fluid contains clotting factors, proteins necessary for fighting infection and the nutrients necessary for growth. Given how much fluid she is losing, the doctors are trying to keep up in replacing these necessary components, but it is unclear how long that can continue.
Would you join us in praying that this fluid drainage would stop? If there’s time left over, pray that she would be spared additional complications. And if there’s still time, pray that Sara and I would not lose heart in the face of bad news. Your prayers, kind emails, cards and phone messages have encouraged us through some very dark hours this week. We thank you from the bottom of our hearts.
Love,
Matt and Sara
Since her surgery three days ago, she has had a ventilator assisting her breathing and a tube exiting her left chest to drain off lymphatic fluid. Attempts so far to remove the breathing tube and to get the fluid drainage to slow down have been unsuccessful. The longer the breathing tube stays in, the more at risk she is for several problems, including pneumonia and permanent damage to her trachea and vocal cords. Each time the doctors change her ventilator settings to move toward getting her off the breathing machine, her left lung collapses, apparently because her chest is filling so quickly with lymphatic fluid.
The drainage of lymphatic fluid also continues. In fact, her drainage is the most anyone has ever seen. She’s leaking about 1.3 liters per day, a huge amount when you consider that represents approximately 1/3 of her body weight! As I mentioned in our last message, this fluid contains clotting factors, proteins necessary for fighting infection and the nutrients necessary for growth. Given how much fluid she is losing, the doctors are trying to keep up in replacing these necessary components, but it is unclear how long that can continue.
Would you join us in praying that this fluid drainage would stop? If there’s time left over, pray that she would be spared additional complications. And if there’s still time, pray that Sara and I would not lose heart in the face of bad news. Your prayers, kind emails, cards and phone messages have encouraged us through some very dark hours this week. We thank you from the bottom of our hearts.
Love,
Matt and Sara
Tuesday, October 18, 2005
Elizabeth Archives - Day 4
After a long morning spent in the waiting room, we were blessed to hear that Elizabeth's surgery went well. The surgeon was surprised to find that her coarctation was more severe and of a longer length than pre-operative testing had indicated. Despite this, he seemed optimistic that he'd done all the necessary repairs. Taking a cue from my brilliant sister-in-law, I found a web image of Elizabeth's surgery and altered it to show the normal anatomy, the severity of Elizabeth's narrowing, and finally an approximate sense of where her stitches are.
Although we are rejoicing that she came through the surgery, this feels like the first step on a very long and bumpy road. Pre-surgery, the doctors predicted abnormal fluid build-up around her left lung and that started to occur even before the operation was over. If it keeps up (and they expect it to), she could be in the ICU for a very long time waiting for the leaking to heal (months?). The fluid that is leaking contains the proteins necessary to protect against infection and to stop her blood from clotting inside her vessels (which could lead to strokes). They will try to replace those proteins (amazing that they know exactly which ones to give her!), but she's at high risk for those problems.
Elizabeth will probably be on the breathing machine and high doses of pain medication for the next two days. We'll visit her several times per day, but plan on using this time to catch up on the sleep and processing time we need.
Pray that God will rejuvenate our bodies and spirits sothat we'll be strong and ready to spend lots of time with her after she wakes up.Thank you again for bearing this heavy load with us. We still trust that God has some purpose in all of this and are relying on his daily mercies to get through it.
We love each of you,
Matt and Sara
Although we are rejoicing that she came through the surgery, this feels like the first step on a very long and bumpy road. Pre-surgery, the doctors predicted abnormal fluid build-up around her left lung and that started to occur even before the operation was over. If it keeps up (and they expect it to), she could be in the ICU for a very long time waiting for the leaking to heal (months?). The fluid that is leaking contains the proteins necessary to protect against infection and to stop her blood from clotting inside her vessels (which could lead to strokes). They will try to replace those proteins (amazing that they know exactly which ones to give her!), but she's at high risk for those problems.
Elizabeth will probably be on the breathing machine and high doses of pain medication for the next two days. We'll visit her several times per day, but plan on using this time to catch up on the sleep and processing time we need.
Pray that God will rejuvenate our bodies and spirits sothat we'll be strong and ready to spend lots of time with her after she wakes up.Thank you again for bearing this heavy load with us. We still trust that God has some purpose in all of this and are relying on his daily mercies to get through it.
We love each of you,
Matt and Sara
Monday, October 17, 2005
Elizabeth Archives - The Arrival of Elizabeth Joy Harms
.jpg)
Dearest Friends and Family,
Sara and are beside ourselves with happiness to announce the birth of Elizabeth Joy Harms! She came at 4:02 PM on October 14th, weighing 6 pounds, 13 ounces and measuring 19 inches in length. We had hoped to call many of you and announce our news, but the days since her birth have been somewhat consumed.
Late Thursday night, just as Sara was chastising me for not having made enough progress in our birthing workbook, she started having very faint contractions. Within 3 hours, they were growing in strength and happening every TWO minutes. We hurried to the hospital and even though we were in earlier labor, Elizabeth's heart rate wasn't acting "optimally" and they admitted us for observation. Six hours, a few contractions and an epidural later, Elizabeth's heart rate suddenly plummeted and before we could react our room filled with people in scrubs preparing to wheel us into the operating room for a crash C-section. Just as the "wheeling" began, her heart rate popped back into the normal range and surgery was averted! We (i.e. Sara) labored another six hours and then it was time to push. The bed was being set up for that purpose when Elizabeth's heart rate suddenly plummeted again. This time it didn't come back up.
Within seconds, the room filled with scrubs a second time, and eight minutes after the trouble started, Elizabeth was delivered by a very dramatic forceps procedure. A very skilled team of pediatricians whisked her away immediately and did something that got her heart goingagain and got her to take her first breaths. She perked up enough that Sara got to hold her for a few brief minutes before they took her off to the Neonatal ICU for the testing her heart and aorta needed. Since then, Elizabeth has remained in the ICU under very close observation. The tests on her heart confirmed that surgery to fix her aorta is needed, and they plan to perform the repairs this Wednesday. In the meantime, she'll remain in the ICU for observation and medications to keep her heart working properly until fixed. But overall, the doctors are very happy with how she's doing otherwise. The ICU has unlimited visiting hours and we've been making great use of them. Naturally, it's very hard for us to see our daughter attached to lines and tubes when we desperately want her home with us.Some major praises!1. Elizabeth survived not one, but two, very scary moments before delivery.2. Aside from the aorta issues soon to be fixed, she's doing very well.3. We live two blocks away and will be able to visit more frequently than typical.4. Great family and nearby friends who have already proved a tremendous blessing.5. A mother-in-law willing to stay with us and to help me care for Sara.
Some things to pray specifically about:
1. Rest and a quick recovery for Sara (and me), so that we have energy for surgery.
2. Rest and a quick recovery for Elizabeth so that she's ready for surgery.
3. Rest and good judgment for the surgeons who will be involved in her surgery.
Of course, there's much more to share that will have to wait until we have time. For now, we're hunkering down, getting as much sleep between ICU trips as we can and preparing for the big surgery on Wednesday. Our phones (home and cells) are technically on, but the ringers are mostly off. So feel free to try calling. We'll only answer if a) we're here and b) we've got the emotional and physical energy to chat.We love you all immensely and thank you for your concerns and prayers. If you're just dying for more information and can't reach us, feel free to call our tremendous point person, Abby Haynes.
Off to hold the baby.
Matt, Sara, and Elizabeth
Tuesday, October 4, 2005
Elizabeth Archives - Pregnancy Update
Hello Everyone,
Last week was a very busy one for Elizabeth and us- one echocardiogram, one visit with the OB, one fetal non-stress test, and an ultrasound to assess her growth! To briefly summarize, there is still evidence of the coarctation of the aorta, the cystic hygroma, and although her head and body are growing appropriately (she almost weighs 6 lbs!), her limbs are seeing the effects of Turner's (they're much shorter than they should be).
These findings combined with the meetings we've had with the doctors have given us a better idea of what to expect after birth. If things don't change:
- There is no reason for a C-section unless something else comes up, and the actual labor & delivery should be able to progress as if our pregnancy were completely normal.
- As long as no other complications arise, we should be able to hold Elizabeth for "awhile" after delivery, but no one knows whether that "awhile" is seconds, minutes or hours.
- Soon after birth, she will have to go Neonatal ICU for testing to see if her aorta will be sufficient to supply her body with blood. Dr. Hornberger, our pediatric cardiologist (fun note - she was quoted multiple times in the most recent issue of Newsweek!) thinks all signs are pointing to needing early surgery, but these tests will tell. Best case scenario in her mind is being able to put surgery off until 6-8 weeks after delivery. Depending on which part of the aorta is affected and how long the involved segment is, Elizabeth will either need repair through the side of the chest (much easier on her) or through the sternum (a much bigger deal). The mortality from this surgery is still about 10%, a number which doesn't seem that great to us. The longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster. Because she has Turner's however, she may have a slower recovery due to her compromised lymphatic (drainage) system.
Naturally, we're ambivalent about the potential of surgery and its risks, though we've had several months to prepare for that possibility. Right now, we're actually finding it much more emotionally difficult to think about her being taken away from us to the ICU. Our perspective may seem a bit "off," but after waiting so long for her to arrive, our hearts are heavy about the fact that our bonding time may be shortened. Will you pray with us that whatever time we're given with her will be maximized for her benefit and for ours?
An answer to prayer - We've found a highly recommended pediatrician willing to make room in her schedule (her practice is officially closed) for Elizabeth once she's arrives, and in the next week or two we'll be meeting with her to talk plans. And as the clock ticks down, please join us in praying for the right mix of obstetricians, nurses, residents and medical students to be on duty when we deliver. In addition to the hospital staff, Sara's mom will be driving over from Clovis to help us with the birth.
As the day for her arrival approaches, we feel more grateful than ever for the brilliant and skilled doctors we have - literally - at our doorstep (since UCSF is only a block away!) and while we believe they are reading the reports as accurately as they know how, we also know that it is God who gives life and calls those things which do not exist as though they did. (Romans 4:17). So even as the odds for a completely healed Elizabeth look slim, we still believe that God's plan...whatever that looks like...is perfect. Hopefully the next email you receive from us will be to say we're in labor or Elizabeth has been born! Thank you again for your prayers.
Love,
Matt, Sara & Elizabeth
Last week was a very busy one for Elizabeth and us- one echocardiogram, one visit with the OB, one fetal non-stress test, and an ultrasound to assess her growth! To briefly summarize, there is still evidence of the coarctation of the aorta, the cystic hygroma, and although her head and body are growing appropriately (she almost weighs 6 lbs!), her limbs are seeing the effects of Turner's (they're much shorter than they should be).
These findings combined with the meetings we've had with the doctors have given us a better idea of what to expect after birth. If things don't change:
- There is no reason for a C-section unless something else comes up, and the actual labor & delivery should be able to progress as if our pregnancy were completely normal.
- As long as no other complications arise, we should be able to hold Elizabeth for "awhile" after delivery, but no one knows whether that "awhile" is seconds, minutes or hours.
- Soon after birth, she will have to go Neonatal ICU for testing to see if her aorta will be sufficient to supply her body with blood. Dr. Hornberger, our pediatric cardiologist (fun note - she was quoted multiple times in the most recent issue of Newsweek!) thinks all signs are pointing to needing early surgery, but these tests will tell. Best case scenario in her mind is being able to put surgery off until 6-8 weeks after delivery. Depending on which part of the aorta is affected and how long the involved segment is, Elizabeth will either need repair through the side of the chest (much easier on her) or through the sternum (a much bigger deal). The mortality from this surgery is still about 10%, a number which doesn't seem that great to us. The longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster. Because she has Turner's however, she may have a slower recovery due to her compromised lymphatic (drainage) system.
Naturally, we're ambivalent about the potential of surgery and its risks, though we've had several months to prepare for that possibility. Right now, we're actually finding it much more emotionally difficult to think about her being taken away from us to the ICU. Our perspective may seem a bit "off," but after waiting so long for her to arrive, our hearts are heavy about the fact that our bonding time may be shortened. Will you pray with us that whatever time we're given with her will be maximized for her benefit and for ours?
An answer to prayer - We've found a highly recommended pediatrician willing to make room in her schedule (her practice is officially closed) for Elizabeth once she's arrives, and in the next week or two we'll be meeting with her to talk plans. And as the clock ticks down, please join us in praying for the right mix of obstetricians, nurses, residents and medical students to be on duty when we deliver. In addition to the hospital staff, Sara's mom will be driving over from Clovis to help us with the birth.
As the day for her arrival approaches, we feel more grateful than ever for the brilliant and skilled doctors we have - literally - at our doorstep (since UCSF is only a block away!) and while we believe they are reading the reports as accurately as they know how, we also know that it is God who gives life and calls those things which do not exist as though they did. (Romans 4:17). So even as the odds for a completely healed Elizabeth look slim, we still believe that God's plan...whatever that looks like...is perfect. Hopefully the next email you receive from us will be to say we're in labor or Elizabeth has been born! Thank you again for your prayers.
Love,
Matt, Sara & Elizabeth
Wednesday, September 28, 2005
Elizabeth Archives - Pregnancy Update
Hello Family and Friends,
Matt will follow up with a more formal explanation of the findings, but the short story is, there is a definite Coarctation, and the left heart is still small, though not definitely problematic...(they'll do tests after she's born)
In light of these findings, we've got a better idea of what things will look like after she's born. If things don't change, the prognosis for birth is:
As long as there are no other complications, I'll be able to hold her for a few moments (don't know how long) right after birth, then she will definitely have to go to the NICU or the Cardiac ICU where they'll test her vitals and give her a test to see how soon she'll need surgery. From what I could tell, Dr. Hornberger (her Pediatric Cardiologist) is leaning toward her needing surgery soon after, but it could be anywhere from a few hours to 6 weeks. If she doesn't need immediate surgery and has no other complications, she should be able to come home with us for a while before the surgery. If she does need immediate surgery, they'll determine which one (the less dramatic entry through the side, or the open heart surgery through the chest wall) and then she'll be in the NICU (or CICU) until she's recovered. (the longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster...though because she has Turner, she may have a slower recovery due to her compromised lymphatic (drainage) system)
Ironically, the toughest part is hearing that she won't be able to stay with me after birth and possibly won't be able to come home with us. My heart is heavy about this. Part of me wants to just go in and take her out now, just so we can deal with a "definite" scenario. Waiting and not knowing when she'll come, and then after that what will happen, is a little tough.
We're doing alright. Tomorrow we've got another apt. with my OB - will you pray that Matt can come? My last appt. with her was really frustrating as she breezed in and out and I couldn't ask questions. Matt will be able to remember what we need to ask her and hopefully will be able to decipher her med-speak for me.
We'll have an ultrasound on Friday - just to measure her size and see what's going on with the Hygroma and the Cerebellum...
Will you pray also that we would have favor with the Pediatricians that we've emailed? Our OB has recommended us to some Sr. Faculty (who would be better at dealing with a Turner case and all the complications that brings) but so far none of them have responded to our requests for them to open their service to us (they're technically "full" and not accepting patients, so this is how it's done). We'd like to get in with one of them and have an appt. before Elizabeth is born so we can set up the game plan for how to treat her after birth. So many things to think about.
Matt went straight from our apt. to his Wed. Conference, so we haven't had a chance to process, so as a result I'm not really wanting to get on the phone...I'm not doing badly, just don't have much to say. Thanks for your prayers. I was reminded in the moments before we left for the Echo...God's plan is perfect. We still believe this.
Love you all,
Sara
Matt will follow up with a more formal explanation of the findings, but the short story is, there is a definite Coarctation, and the left heart is still small, though not definitely problematic...(they'll do tests after she's born)
In light of these findings, we've got a better idea of what things will look like after she's born. If things don't change, the prognosis for birth is:
As long as there are no other complications, I'll be able to hold her for a few moments (don't know how long) right after birth, then she will definitely have to go to the NICU or the Cardiac ICU where they'll test her vitals and give her a test to see how soon she'll need surgery. From what I could tell, Dr. Hornberger (her Pediatric Cardiologist) is leaning toward her needing surgery soon after, but it could be anywhere from a few hours to 6 weeks. If she doesn't need immediate surgery and has no other complications, she should be able to come home with us for a while before the surgery. If she does need immediate surgery, they'll determine which one (the less dramatic entry through the side, or the open heart surgery through the chest wall) and then she'll be in the NICU (or CICU) until she's recovered. (the longer they are able to wait to do surgery, the quicker the recovery should be - older babies heal faster...though because she has Turner, she may have a slower recovery due to her compromised lymphatic (drainage) system)
Ironically, the toughest part is hearing that she won't be able to stay with me after birth and possibly won't be able to come home with us. My heart is heavy about this. Part of me wants to just go in and take her out now, just so we can deal with a "definite" scenario. Waiting and not knowing when she'll come, and then after that what will happen, is a little tough.
We're doing alright. Tomorrow we've got another apt. with my OB - will you pray that Matt can come? My last appt. with her was really frustrating as she breezed in and out and I couldn't ask questions. Matt will be able to remember what we need to ask her and hopefully will be able to decipher her med-speak for me.
We'll have an ultrasound on Friday - just to measure her size and see what's going on with the Hygroma and the Cerebellum...
Will you pray also that we would have favor with the Pediatricians that we've emailed? Our OB has recommended us to some Sr. Faculty (who would be better at dealing with a Turner case and all the complications that brings) but so far none of them have responded to our requests for them to open their service to us (they're technically "full" and not accepting patients, so this is how it's done). We'd like to get in with one of them and have an appt. before Elizabeth is born so we can set up the game plan for how to treat her after birth. So many things to think about.
Matt went straight from our apt. to his Wed. Conference, so we haven't had a chance to process, so as a result I'm not really wanting to get on the phone...I'm not doing badly, just don't have much to say. Thanks for your prayers. I was reminded in the moments before we left for the Echo...God's plan is perfect. We still believe this.
Love you all,
Sara
Thursday, September 15, 2005
Elizabeth Archives - Pregnancy Update
Hi Everyone,
It's been a while since we updated you, and thankfully, that's because there's been nothing dramatic to report! Our daughter continues to grow...proving by her kicks that her current dwelling is shrinking fast. Our last ultrasound indicated that she's in the 56th percentile for growth, and showed evidence that she's thriving. It also revealed that her Cystic Hygroma (the fluid collection at the back of her neck) is shrinking! We've now made it past the 35 week mark and if necessary could safely deliver her without many of the risks associated with premature delivery. These are all direct answers to prayer.
In a few weeks we'll have another appointment (they come every 2 weeks now) as well as another Fetal Echocardiogram. This will be our last chance to see what's going on with her heart and we're praying for continued healing. And we are so grateful for your prayers. A few nights ago, our God-daughter, Quinlee, (who is 2) called (with the help of her parents) and on the answering machine prayed, "Lord, bless Baby Harms!" On our way out of church last week, a gentleman stopped Matt and I and said, "The Lord told me to pray for your baby's salvation...so we're praying for her health and that she would come to know God at an early age." Perfect strangers are being moved to pray for our daughter...God is so good to us.
Overall, Matt and I are doing really well. The bible verse that has best expressed my heart lately is Psalm 30:11-12 ~
You have turned for me my mourning into dancing; You have put off my sackcloth and clothed me with gladness, to the end that my soul may sing praise to You and not be silent. O Lord my God, I will give thanks to you forever.
I feel like we've turned a corner, from mourning to rejoicing and we are eager to see what God does in our daughter between now and the day she arrives. In the meantime, we're painting, carpeting, installing furniture, washing clothes, sewing bedding, and last Saturday, we went to a class where we finally learned how to have a baby!
Finally, we have a name! We've chosen Elizabeth Joy Harms. Elizabeth is my middle name and means, "devoted to God" and Joy, well, joy is what we feel about her!
I've attached a picture of our progress...both in belly size
With Love,
Sara, Matt & Elizabeth Joy
It's been a while since we updated you, and thankfully, that's because there's been nothing dramatic to report! Our daughter continues to grow...proving by her kicks that her current dwelling is shrinking fast. Our last ultrasound indicated that she's in the 56th percentile for growth, and showed evidence that she's thriving. It also revealed that her Cystic Hygroma (the fluid collection at the back of her neck) is shrinking! We've now made it past the 35 week mark and if necessary could safely deliver her without many of the risks associated with premature delivery. These are all direct answers to prayer.
In a few weeks we'll have another appointment (they come every 2 weeks now) as well as another Fetal Echocardiogram. This will be our last chance to see what's going on with her heart and we're praying for continued healing. And we are so grateful for your prayers. A few nights ago, our God-daughter, Quinlee, (who is 2) called (with the help of her parents) and on the answering machine prayed, "Lord, bless Baby Harms!" On our way out of church last week, a gentleman stopped Matt and I and said, "The Lord told me to pray for your baby's salvation...so we're praying for her health and that she would come to know God at an early age." Perfect strangers are being moved to pray for our daughter...God is so good to us.
Overall, Matt and I are doing really well. The bible verse that has best expressed my heart lately is Psalm 30:11-12 ~
You have turned for me my mourning into dancing; You have put off my sackcloth and clothed me with gladness, to the end that my soul may sing praise to You and not be silent. O Lord my God, I will give thanks to you forever.
I feel like we've turned a corner, from mourning to rejoicing and we are eager to see what God does in our daughter between now and the day she arrives. In the meantime, we're painting, carpeting, installing furniture, washing clothes, sewing bedding, and last Saturday, we went to a class where we finally learned how to have a baby!Finally, we have a name! We've chosen Elizabeth Joy Harms. Elizabeth is my middle name and means, "devoted to God" and Joy, well, joy is what we feel about her!
I've attached a picture of our progress...both in belly size
With Love,
Sara, Matt & Elizabeth Joy
Subscribe to:
Posts (Atom)
.jpg){kind=link}