Another day of uncertainty. Today I got a call from the neonatologist as I was getting ready to go into the hospital this morning that he is concerned about Grey's labs. He and I have talked about his labs for several days now, and they are not getting better. The main concern is Grey's WBC or white blood cell count... it is still elevated, like double what it should be. His platelet count is also low. Both of these both dependent and independent of each other point to an infection. SO, Grey got recultured today, consisting of a blood culture and a urine culture to see if there is any bacteria or perhaps most dangerous of all, fungus. The downside of Grey being on antibiotics for such a long period of time is allowing all the "good" bacteria to be killed off letting fungus to grow somewhere, mainly in the blood. We should know in 72 hours if anything grows, bacteria or fungus. Also an ultrasound was done today around Grey's wound site from surgery to look for an abcess, or an infection under the muscle layer of the skin. Nothing was seen. The bowel had increased blood flow to it, which also may be the start of the infection they thought he may have before called NEC. And, you may ask what I think is going on..... hmmm....
I honestly think neither of these things are going on. Now, don't think I am discrediting the medical staff at the hospital, this is not the case. I love the physician that is following him. He is diligent, and a super doctor. I just have a feeling it is neither of these things. I could be wrong. I hope it is neither of these things. I am hoping it is just taking a while for his WBC to come down after his ugly surgery. I think he may have an infection under the muscle layer that is not raring it's ugly head as an abcess yet. According to nurse Brooke, it was like "an explosion of sewage" once his bowel was cut open and removed in surgery, and it is likely impossible that some of that didn't stay in the peritineal cavity (belly area). He is on some of the strongest antibiotics that he can be. Perhaps it is just taking time for them to work. He did run a fever today.... but it has broke. I did hold him today. I read him a book called "WHO LOVES GREY". It is a personalized book that my aunt and grandma ordered for the kids. Such a great book! He was awake, and I think he even looked at the pictures when I put them in front of him. All I can do is pray for Grey, and be the best mommy I can be when I get to hold him. I think we will get to the bottom of his issues, and I know in my heart he will be fine. He is a fighter, a fiesty little man when he wants to be. Today as I was holding his pacifier in his mouth when he was crying in his isolette... I prayed over him, just asking GOD for wisdom for the medical staff, and strength for Grey, as well as health and wellness.
Owen got circumcised last night. He seems to be fine, all is healing well. He ate a bit better today. He weighs 5lbs 6 oz... WOW, I know!!! I think he had anticipation for the events he knew would take place last night!
Lillian was a trooper with her bottle today. She weighs 4lbs 6 oz. I fed her at 9pm, and she ate all 37 cc of it, which is a little over an ounce. Both her and Owen are on formula, while I save all my breastmilk for Grey. Grey now weighs 4lbs 9oz. (I think some of it is fluid still left over from having surgery though)
I sit here in this quiet house, in my chair, dogs both laying on their backs sleeping... all 4's up in the air, my husband on the couch, where he fell asleep, almost mid-sentence... and I am so thankful for the blessings I have. This quiet house is about to be transitioned to one full of love for 3 children, and chaos I am sure! I am certainly looking forward to that day when they are all home, healthy, and happy. It is a battle to keep my chin up and trudge forward, but when there is nothing but that to do.. you don't have a choice. The fatigue and emotions are unrelenting, but that is not about to change any time soon.
THREE
Saturday, July 31, 2010
Friday, July 30, 2010
Nursery Decor came too...
On another positive note, we finally got the letters we ordered for the nursery in April. We found this lady on ebay named Erin, and she painted them to match the decor in the nursery and their individual bedding.
I'll dig up some pics of the nursery some time this weekend and post if time allows, but here are the letters for those of you that have seen the nursery.
Thursday, July 29, 2010
ups and downs
Today was another day of ups and downs.
All 3 kids got their eyes examined. Things look good there. Lillian and Owen didn't do too great taking their bottles today, I think their exam wore them out! The criteria from what I understand to discharge from the hospital, is no "alarms" such as oxygen going low, or heart rate going low for 7 days, as well as taking 24 hours of 100% of their bottles, and a few days of "ad lib" feeding, meaning they feed when they cry out for it. We're not there yet... but that's ok, we'll get there.
Grey had somewhat of a setback today. He is back on the CPAP oxygen.... he hates it. It scrunches up his nose and face. He was working too hard to breathe today, and needed a little extra help. Brooke, Lilly's primary nurse, came over today to chat... and made me feel a lot better. She said that "When Grey is doing bad, he does really bad, in a really big hurry.... this is just a rest for him so he can fight the infection..." I likely misquoted that, but you get the picture. She is right. I pray that this isn't another setback that is a really big setback. CPAP really is no big deal, he just hates it. They did draw another set of blood cultures today to make sure nothing is hiding. He continues to be on "big gun" antibiotics. Tonight, I just called and his last blood gas looked good, so he is oxygenating well and they started some breathing treatments for him. I think the treatments help.... they have before.
So again, another day of uncertainty. I felt like Grey looked better today. Even though he cried alot, and sucked on his fingers everytime I was looking in his isolette.... his color looked good, and his belly didn't look as distended as it has in the past few days.
Can you tell it's hard for me to be a mommy, instead of a nurse? I am constantly having to remind myself that there are plenty of people that don't have a medical background, and their kids survive the NICU. Don't get me wrong, we cannot ask for better medical staff and nurses there, we simply just cannot. I sometimes wonder if I was as caring when I worked with my patients both in the ICU and in transplant as these nurses are to our babies. I just don't know.
Please continue to keep us all in your prayers.
All 3 kids got their eyes examined. Things look good there. Lillian and Owen didn't do too great taking their bottles today, I think their exam wore them out! The criteria from what I understand to discharge from the hospital, is no "alarms" such as oxygen going low, or heart rate going low for 7 days, as well as taking 24 hours of 100% of their bottles, and a few days of "ad lib" feeding, meaning they feed when they cry out for it. We're not there yet... but that's ok, we'll get there.
Grey had somewhat of a setback today. He is back on the CPAP oxygen.... he hates it. It scrunches up his nose and face. He was working too hard to breathe today, and needed a little extra help. Brooke, Lilly's primary nurse, came over today to chat... and made me feel a lot better. She said that "When Grey is doing bad, he does really bad, in a really big hurry.... this is just a rest for him so he can fight the infection..." I likely misquoted that, but you get the picture. She is right. I pray that this isn't another setback that is a really big setback. CPAP really is no big deal, he just hates it. They did draw another set of blood cultures today to make sure nothing is hiding. He continues to be on "big gun" antibiotics. Tonight, I just called and his last blood gas looked good, so he is oxygenating well and they started some breathing treatments for him. I think the treatments help.... they have before.
So again, another day of uncertainty. I felt like Grey looked better today. Even though he cried alot, and sucked on his fingers everytime I was looking in his isolette.... his color looked good, and his belly didn't look as distended as it has in the past few days.
Can you tell it's hard for me to be a mommy, instead of a nurse? I am constantly having to remind myself that there are plenty of people that don't have a medical background, and their kids survive the NICU. Don't get me wrong, we cannot ask for better medical staff and nurses there, we simply just cannot. I sometimes wonder if I was as caring when I worked with my patients both in the ICU and in transplant as these nurses are to our babies. I just don't know.
Please continue to keep us all in your prayers.
Wednesday, July 28, 2010
T minus 2 weeks.... or sooner
Well, talked to the neonatologist today, and Owen and Lillian will be ready to come home in about 10 days to 2 weeks. Todd and I are very happy about this. It's bitter sweet though, since Grey will still be in the NICU. Grey will hopefully have his intestine reconnected by mid Sept, and home not to much longer than that. It is very hard to be torn between so happy for Lil and Owen.... and grieving that Grey won't be joining us at home for quite some time. We'll have to make it work though.
Today Lilly ate pretty well. There was really nothing much new with her.
Owen at well too. He ate most of his bottles. They are both starting to cry before meals, which is a cue that they are getting the hang of this eating thing.
Grey will start to get 1ml an hour of breastmilk tomorrow through his tube in his nose. That is exciting. His white blood cell counts are still up. I will be praying that this comes down, and that he has no more infection. Grey is due for some good luck!
On another note... Todd is planning a "date night" for Saturday. Dinner and a movie sounds really good. He also is planning what he calls "CABO 2012". He is pretty adament that we are going to Cabo in May 2012.... The kids will be almost 2! Wow, that is hard to picture! We'll see. I'll let him put the money away, and we both may change our minds on that one. It'd be hard to leave the triplets to go out of the country.
This weekend we are going to have to work on the house a little bit. Make sure things are in place for the kids to come home, which includes getting up some dog gates. I think the dogs will not particularly like this... but until we know how they'll react to the kids we're going to have to make it safe for all of us. The dogs are good dogs. But, we've never made them be gentle. They've never really had a reason to be; no children were ever in our house. It will definitely be interesting the next few weeks!
Today Lilly ate pretty well. There was really nothing much new with her.
Owen at well too. He ate most of his bottles. They are both starting to cry before meals, which is a cue that they are getting the hang of this eating thing.
Grey will start to get 1ml an hour of breastmilk tomorrow through his tube in his nose. That is exciting. His white blood cell counts are still up. I will be praying that this comes down, and that he has no more infection. Grey is due for some good luck!
On another note... Todd is planning a "date night" for Saturday. Dinner and a movie sounds really good. He also is planning what he calls "CABO 2012". He is pretty adament that we are going to Cabo in May 2012.... The kids will be almost 2! Wow, that is hard to picture! We'll see. I'll let him put the money away, and we both may change our minds on that one. It'd be hard to leave the triplets to go out of the country.
This weekend we are going to have to work on the house a little bit. Make sure things are in place for the kids to come home, which includes getting up some dog gates. I think the dogs will not particularly like this... but until we know how they'll react to the kids we're going to have to make it safe for all of us. The dogs are good dogs. But, we've never made them be gentle. They've never really had a reason to be; no children were ever in our house. It will definitely be interesting the next few weeks!
New Scenery in the NICU
Today Lillian and Owen got their own "rooms" in the NICU. We got to move from the spot we were at, and are now all the way across the unit to the rooms. Grey then moved to a spot right beside them in another "pod" area. We are in a little corner, and it is much quieter than where we were before. Lilly and Owen's rooms open up into each other with sliding glass 
doors, so I feel like I can see them all 3 at once, and I like that. Lilly and Owen are eating great! Owen did not get circumcised, I think his date with destiny will come soon though.
I got to hold Grey today. He is now off the ventilator, and is on nasal canula, or oxygen in his nose. I read him a book Brown Bear, Brown Bear WHAT do you see? He slept through it, but I'd like to think he enjoyed it. Honestly, it was just nice to feel him in my arms again, and knowing he is on the mend! He is still having good ole green liquid poop in his ostomy, and that remains a victory. Dr. Hendrickson came by today, and was really happy with is progress... and was surprised to see him off the vent. What can he say, the little man is almost at superhero status! Candice the respiratory therapist calls him her little superman. I tend to agree!
doors, so I feel like I can see them all 3 at once, and I like that. Lilly and Owen are eating great! Owen did not get circumcised, I think his date with destiny will come soon though.I got to hold Grey today. He is now off the ventilator, and is on nasal canula, or oxygen in his nose. I read him a book Brown Bear, Brown Bear WHAT do you see? He slept through it, but I'd like to think he enjoyed it. Honestly, it was just nice to feel him in my arms again, and knowing he is on the mend! He is still having good ole green liquid poop in his ostomy, and that remains a victory. Dr. Hendrickson came by today, and was really happy with is progress... and was surprised to see him off the vent. What can he say, the little man is almost at superhero status! Candice the respiratory therapist calls him her little superman. I tend to agree!
Monday, July 26, 2010
Poop in the ostomy!!!
Small victories! Grey has poop in his ostomy! Last surgery he had on his bowel, it took about 2 weeks for him to have poop in his ostomy, but now that liquid green stuff in the bag makes me VERY happy!
He should be able to come off the ventilator tomorrow. My worry for him is pain control. The nurses do a great job assessing and treating him for pain, it's just easier to see him snockered, cause I know he is not in pain then. BUT, he has to come off the vent asap... so it's a trade off.
Owen was supposed to get circumcised, but as of 2230 tonight, he wasn't on the schedule. He'll get done soon though I'm sure. He took his whole bottle tonight, I just talked to his nurse. He is now starting to fuss a little before his bottles, so they are definitely getting to be like "real babies".
Lilly is also doing well. She eats like a trooper!
Both Lilly and Owen are what the NICU calls "growers and feeders". I can't wait until Grey is looped into that category. His time is coming!
Today I went to the pool for an hour. There is something about a hot day and the sun beating down on you that makes all the stress go away. Although I couldn't stop thinking about the kids, it was a nice hour just to get away. I was thinking about being able to bring them all 3 down to the pool next year, and what their little swimsuits will look like.
I'm making Grey's goal to get out of the hospital Halloween. I think this is realistic, and I think the nurses think the same. I am so glad he is getting better. I will take small victories on top of none at all! It's going to be a longer road with Grey, but as long as he is well and happy... we'll deal with whatever we need to!
I did talk to my NEW boss today. 1.5 years in my job at Anthem, this is my 4th manager in the same position! Amy is her name, and she was very friendly on the phone. It was a bit awkward to call her on the phone, she's never worked with me and doesn't know my work ethic. It was hard to say, "Hey, you've not met me, nor have I worked in months... but I need 3 more months off!". So I am applying for a personal leave maximum of 3 months. I really don't anticipate being off that long. I want to get Lillian and Owen home for a few weeks, and then I'll start back to work. Then when Grey comes home, I should have atleast a few days of PTO I can take off. I've been thinking a lot about how it will be to have 2 kids at home, and 1 still in the NICU. It will be difficult. My concern is that Grey gets the amount of attention and bonding that he needs. We'll just have to make it work. There is no choice in the matter. I look forward to the day of having all 3 home, but tomorrow... I should be able to hold Grey again, so another small victory is what we are celebrating!
Thanks for everyones' prayers! They are working, but we still have a long road.... so keep em coming!
He should be able to come off the ventilator tomorrow. My worry for him is pain control. The nurses do a great job assessing and treating him for pain, it's just easier to see him snockered, cause I know he is not in pain then. BUT, he has to come off the vent asap... so it's a trade off.
Owen was supposed to get circumcised, but as of 2230 tonight, he wasn't on the schedule. He'll get done soon though I'm sure. He took his whole bottle tonight, I just talked to his nurse. He is now starting to fuss a little before his bottles, so they are definitely getting to be like "real babies".
Lilly is also doing well. She eats like a trooper!
Both Lilly and Owen are what the NICU calls "growers and feeders". I can't wait until Grey is looped into that category. His time is coming!
Today I went to the pool for an hour. There is something about a hot day and the sun beating down on you that makes all the stress go away. Although I couldn't stop thinking about the kids, it was a nice hour just to get away. I was thinking about being able to bring them all 3 down to the pool next year, and what their little swimsuits will look like.
I'm making Grey's goal to get out of the hospital Halloween. I think this is realistic, and I think the nurses think the same. I am so glad he is getting better. I will take small victories on top of none at all! It's going to be a longer road with Grey, but as long as he is well and happy... we'll deal with whatever we need to!
I did talk to my NEW boss today. 1.5 years in my job at Anthem, this is my 4th manager in the same position! Amy is her name, and she was very friendly on the phone. It was a bit awkward to call her on the phone, she's never worked with me and doesn't know my work ethic. It was hard to say, "Hey, you've not met me, nor have I worked in months... but I need 3 more months off!". So I am applying for a personal leave maximum of 3 months. I really don't anticipate being off that long. I want to get Lillian and Owen home for a few weeks, and then I'll start back to work. Then when Grey comes home, I should have atleast a few days of PTO I can take off. I've been thinking a lot about how it will be to have 2 kids at home, and 1 still in the NICU. It will be difficult. My concern is that Grey gets the amount of attention and bonding that he needs. We'll just have to make it work. There is no choice in the matter. I look forward to the day of having all 3 home, but tomorrow... I should be able to hold Grey again, so another small victory is what we are celebrating!
Thanks for everyones' prayers! They are working, but we still have a long road.... so keep em coming!
A better day in the NICU
Yesterday and today have left Grey with improvement. Today he is off all of his blood pressure medicine, he is on very low ventilator settings, (he could probably come off of it, but he is on some medicine to keep him sleepy for pain control) he didn't get any more blood today, and his labs look better. We count every blessing we get! He is starting to open his ey
es a little as well. Here are two pics of him from a week ago.
es a little as well. Here are two pics of him from a week ago. Wow what a difference a week has made. Although he looks and is doing so much better, I cannot wait for him to look like this again! It's also amazing how all 3 of the kids look very similar! We have to continue to pray that Grey heals, and has no more complications. We start the clock with him again, he will have the surgery to put his intestine back together again in about 8 weeks, then we have to make sure he eats well, and tolerates his feedings. He can do it, he's quite the little soldier!
Lilly and Owen are doing very well. Todd gave them a bath today in the sink in the NICU. They are eating well, and growing appropriately. Owen should get circumcised tomorrow evening. That will be interesting!
I must say it is difficult to celebrate the milestones of Lillian and Owen, when Grey is having such a rough road. We just have to take it day by day.... and some days minute by minute.
Saturday, July 24, 2010
Let's hope to never have to repeat 7/23/10
I have little time to update, but Grey had a bad day yesterday. He started to get worse mid morning, very unstable.... Literally, we were watching him die.
After much thought, and praying, and the instinct to follow my intuition, the GI surgeon came to Grey's bedside and basically told us there was no huge blaring reason to take him to surgery, but that he knew I had been "wanting" Grey to go to surgery for 2 days now to explore his belly as that is where I thought his problem was coming from, and he would do it if we felt that strongly about it. At the end of the conversation, Todd and I basically decided, nothing was making him better, we had to take the chance of surgery even though we knew he may not make it out of surgery. After a quick baptism, and many tears, we said our "good bye until later's" kissed him and let it all be in the hands of God.
After about 30 minutes, one of our nurses that had her day off (Grey's primary nurse) Becca came through the door of the room we were in, and she was definitely a site for sore eyes! LOVE YOU BECCA! We talked about Grey, cried a bit, and just waited.
Then the good news came from Lilly's primary nurse Brooke, that was taking care of Grey... and helping out in surgery (at the bedside in the middle of the NICU because he was so sick they didn't want to move him down to the OR suite)... she came in and told us that the majority of the intestine looked good. LOVE YOU BROOKE! About a minute after that, our neonatologist came in, and said that there was about a 10 cm place that may need to come out..... and indeed that was the case. They resected 10 more cm of his small intestine.... (jejunum) and that Grey was doing very well in surgery, this would still leave him with plenty of intestine, and really was the best case scenario.
After many sighs of relief, Dr. Hendrickson came in and told us that story as well.
Grey's night was better. He has gotten a lot of blood products, but is stable on the blood pressure medicine and is continuing to improve. We are not out of the woods yet, as he is still sick, but he is continuing to improve, and not declining like he did before surgery.
Please say a little prayer for Grey today, he is in need. This little man is a fighter, he will be just fine! I think the worst is behind us, better things to come soon!
After much thought, and praying, and the instinct to follow my intuition, the GI surgeon came to Grey's bedside and basically told us there was no huge blaring reason to take him to surgery, but that he knew I had been "wanting" Grey to go to surgery for 2 days now to explore his belly as that is where I thought his problem was coming from, and he would do it if we felt that strongly about it. At the end of the conversation, Todd and I basically decided, nothing was making him better, we had to take the chance of surgery even though we knew he may not make it out of surgery. After a quick baptism, and many tears, we said our "good bye until later's" kissed him and let it all be in the hands of God.
After about 30 minutes, one of our nurses that had her day off (Grey's primary nurse) Becca came through the door of the room we were in, and she was definitely a site for sore eyes! LOVE YOU BECCA! We talked about Grey, cried a bit, and just waited.
Then the good news came from Lilly's primary nurse Brooke, that was taking care of Grey... and helping out in surgery (at the bedside in the middle of the NICU because he was so sick they didn't want to move him down to the OR suite)... she came in and told us that the majority of the intestine looked good. LOVE YOU BROOKE! About a minute after that, our neonatologist came in, and said that there was about a 10 cm place that may need to come out..... and indeed that was the case. They resected 10 more cm of his small intestine.... (jejunum) and that Grey was doing very well in surgery, this would still leave him with plenty of intestine, and really was the best case scenario.
After many sighs of relief, Dr. Hendrickson came in and told us that story as well.
Grey's night was better. He has gotten a lot of blood products, but is stable on the blood pressure medicine and is continuing to improve. We are not out of the woods yet, as he is still sick, but he is continuing to improve, and not declining like he did before surgery.
Please say a little prayer for Grey today, he is in need. This little man is a fighter, he will be just fine! I think the worst is behind us, better things to come soon!
This picture was of Grey a little before he got sick with his first round of infection, which makes me think it was his bowel the whole time.
The little bag you see on him is from his first bowel resection where they took out 1cm of jejunum.... Love the little smile in this picture! Note the diaper that he has on is a preemie diaper, it's a bit to big! lol
Thursday, July 22, 2010
Another day and 1 month celebrations
Another day, is quite the understatement!
Lillian and Owen are doing great. Both took bottles for us today. They graduated out of their isolettes, now in cribs and that was nice to see.
Grey was about the same today. He is still on the ventilator, and minimal settings. He was incredibly touchy today when the nurses had to do his care. His vital signs were stable, but his oxygenation would drop very quickly. He did this last week when he was sick too. Once he was getting better that stopped last week.
Grey's white blood cell count was better today. Half way thru the day the doctor thought he might have perforated his bowel, but after a repeat xray, showed that he had not. It was a day of ups and downs. He did have 1 set of blood cultures come back with a staph infection. This could be a contaminated culture, so it was repeated. He is on antibiotics to cover that, as well as all the other possible causes of whatever may be going on. I am not convinced that this is NEC, nor am I convinced that he has a meconium plug, nor am I convinced that he has a staph infection, all of which were discussed as diagnoses today. To me, nothing adds up to fit quite right, I am still waiting for the pieces to fall together to get a definite answer as toward what this is. Most importantly, he is not decompensating, and continues to be the same. We just need him to get better, SOON!
On a different note, I wanted to post pictures that were taken by our kids primary nurses last week for their 1 month birthday.
Here they are in no particular order:
They kind of look like little garden gnomes in this picture! This was taken last week, and Grey has a CPAP nasal oxygenation in this picture, as you can see it scrunches up his nose and face.
Here you can see their faces. It is amazing how much they really do look alike. If it weren't for their size difference, it may be difficult to tell them apart.
Left to right it's Owen, Lilly, and Grey.
I like this picture, just shows them moving their little hands around.
OWEN TRAVIS MAURER
LILLIAN KATE MAURER
GREY NOLAN MAURER
Lillian and Owen are doing great. Both took bottles for us today. They graduated out of their isolettes, now in cribs and that was nice to see.
Grey was about the same today. He is still on the ventilator, and minimal settings. He was incredibly touchy today when the nurses had to do his care. His vital signs were stable, but his oxygenation would drop very quickly. He did this last week when he was sick too. Once he was getting better that stopped last week.
Grey's white blood cell count was better today. Half way thru the day the doctor thought he might have perforated his bowel, but after a repeat xray, showed that he had not. It was a day of ups and downs. He did have 1 set of blood cultures come back with a staph infection. This could be a contaminated culture, so it was repeated. He is on antibiotics to cover that, as well as all the other possible causes of whatever may be going on. I am not convinced that this is NEC, nor am I convinced that he has a meconium plug, nor am I convinced that he has a staph infection, all of which were discussed as diagnoses today. To me, nothing adds up to fit quite right, I am still waiting for the pieces to fall together to get a definite answer as toward what this is. Most importantly, he is not decompensating, and continues to be the same. We just need him to get better, SOON!
On a different note, I wanted to post pictures that were taken by our kids primary nurses last week for their 1 month birthday.
Here they are in no particular order:
They kind of look like little garden gnomes in this picture! This was taken last week, and Grey has a CPAP nasal oxygenation in this picture, as you can see it scrunches up his nose and face.
Here you can see their faces. It is amazing how much they really do look alike. If it weren't for their size difference, it may be difficult to tell them apart.
Left to right it's Owen, Lilly, and Grey.
I like this picture, just shows them moving their little hands around.
OWEN TRAVIS MAURER
LILLIAN KATE MAURER
GREY NOLAN MAURER
Wednesday, July 21, 2010
Intuition and a set back
No post yesterday, for good reason.
Yesterday in the NICU, things were good. The issue with a staff member I had was taken care of, and won't have to worry about that again. I didn't want to be "that parent" that "fired" a nurse, but once the trust with her was completely injured it cannot be recovered.
Then, once it was time to leave, I really felt like things weren't right, kind of had some reservations about leaving, but all the kids had a good day; I really couldn't pinpoint the issue.
I returned to the hospital at about 11pm and still felt something wasn't right with Grey. I talked to the staff, as his heart rate, and oxygenation fluctuated, both of which is normal for preemies at times. I got home at about 3am.
At 10am, I received a call from the nurse taking care of Grey. He was put back on the ventilator, and they think he has a bowel infection.
Once arriving at the NICU, Grey was calm, his color looked good, and his ventilator settings were minimal. Yet, he is still sick, very sick. After being debriefed by the nurse and doctor, the fear of your child being sick sets in. The fear of him being in pain, the fear of him having to go through yet again something major etc.... Once the surgeons looked at his xray, it was decided that they would treat him like he had NEC. http://en.wikipedia.org/wiki/Necrotizing_enterocolitis- although wikipedia is not usually where you should go for your medical advise, this is actually a decent description.
Now, we wait and pray. Wait while the antibiotics work, pray that he continues to fight and that he gets better, and that this is the last illness he is plagued with.
I did just call on him, and he is no different... xrays look a little better, and he is resting comfortably, still has stable vital signs.
Prayers much appreciated.....
Now that all the negative stuff is out of the way.... allow me to update you on the other 2, and tell you what we took away from today.
Lillian- is truly enjoying her bottle. She can be heard about 3 feet away burping and smacking her lips when you are burping her. She is doing well with her bottle. She eats about 40% of her bottles. This needs to increase to 100% before discharge home.
Owen- continues to be the biggest. Our nurse today called him a grande gordita. He is 4lb 11oz, and some of the preemie sleepers he is too long for. He too likes his bottles, and eating about the same as Lilly. Feeding them makes me happy. He will likely come out of his isolette tonight, and be in a crib! YAY!
Also they did do a head ultrasound on Grey today... as strokes are another reason for decompensation in many preemies.... it was negative, no strokes! THANK YOU GOD! As one of our primary nurses was telling me that it was negative, she then told me that when the doctor told her it was negative, she cried.
(Each kid has a nurse that is their "primary nurse". These nurses picked our kids to take care of the majority of the time that they work.)
I then realized that there were positive things that were going to come out of this day. It was solidified that:
1. Our primary nurses take excellent care of them. They never hesitate to go above and beyond for our kids.
2. They too care so much for our kids. Not just as a nurse, but it's a maternal care.... a care that is unique with each of the primary nurses, and their kid (ours too... lol). I realized today again, what special nurses we have. Even when things are touchy they know just what to say.
We cannot thank them enough, nor can we say enough about them or to them to make them know how much we appreciate their competent care.
Tomorrow we are hoping for a different day. One that is better of course. Grey will beat this, in my heart of hearts, I really feel he will be just fine. He certainly has had a rough few weeks, but once he beats this, and he's running around at 2 years old, this will just be a memory... and something that we were meant to go through for reasons we may never know.
Yesterday in the NICU, things were good. The issue with a staff member I had was taken care of, and won't have to worry about that again. I didn't want to be "that parent" that "fired" a nurse, but once the trust with her was completely injured it cannot be recovered.
Then, once it was time to leave, I really felt like things weren't right, kind of had some reservations about leaving, but all the kids had a good day; I really couldn't pinpoint the issue.
I returned to the hospital at about 11pm and still felt something wasn't right with Grey. I talked to the staff, as his heart rate, and oxygenation fluctuated, both of which is normal for preemies at times. I got home at about 3am.
At 10am, I received a call from the nurse taking care of Grey. He was put back on the ventilator, and they think he has a bowel infection.
Once arriving at the NICU, Grey was calm, his color looked good, and his ventilator settings were minimal. Yet, he is still sick, very sick. After being debriefed by the nurse and doctor, the fear of your child being sick sets in. The fear of him being in pain, the fear of him having to go through yet again something major etc.... Once the surgeons looked at his xray, it was decided that they would treat him like he had NEC. http://en.wikipedia.org/wiki/Necrotizing_enterocolitis- although wikipedia is not usually where you should go for your medical advise, this is actually a decent description.
Now, we wait and pray. Wait while the antibiotics work, pray that he continues to fight and that he gets better, and that this is the last illness he is plagued with.
I did just call on him, and he is no different... xrays look a little better, and he is resting comfortably, still has stable vital signs.
Prayers much appreciated.....
Now that all the negative stuff is out of the way.... allow me to update you on the other 2, and tell you what we took away from today.
Lillian- is truly enjoying her bottle. She can be heard about 3 feet away burping and smacking her lips when you are burping her. She is doing well with her bottle. She eats about 40% of her bottles. This needs to increase to 100% before discharge home.
Owen- continues to be the biggest. Our nurse today called him a grande gordita. He is 4lb 11oz, and some of the preemie sleepers he is too long for. He too likes his bottles, and eating about the same as Lilly. Feeding them makes me happy. He will likely come out of his isolette tonight, and be in a crib! YAY!
Also they did do a head ultrasound on Grey today... as strokes are another reason for decompensation in many preemies.... it was negative, no strokes! THANK YOU GOD! As one of our primary nurses was telling me that it was negative, she then told me that when the doctor told her it was negative, she cried.
(Each kid has a nurse that is their "primary nurse". These nurses picked our kids to take care of the majority of the time that they work.)
I then realized that there were positive things that were going to come out of this day. It was solidified that:
1. Our primary nurses take excellent care of them. They never hesitate to go above and beyond for our kids.
2. They too care so much for our kids. Not just as a nurse, but it's a maternal care.... a care that is unique with each of the primary nurses, and their kid (ours too... lol). I realized today again, what special nurses we have. Even when things are touchy they know just what to say.
We cannot thank them enough, nor can we say enough about them or to them to make them know how much we appreciate their competent care.
Tomorrow we are hoping for a different day. One that is better of course. Grey will beat this, in my heart of hearts, I really feel he will be just fine. He certainly has had a rough few weeks, but once he beats this, and he's running around at 2 years old, this will just be a memory... and something that we were meant to go through for reasons we may never know.
Tuesday, July 20, 2010
Faith...
Well, nothing really new with the kids. Thank you GOD they are all doing well.
Today really was a good day. Each day with the trio is truly a blessing. I did get my hair cut, that too could be considered a blessing!
Todd and I went back to the hospital tonight to see the kids, as he didn't get a chance to go during the day. I had some struggling moments at the hospital tonight. Grey's health still worries me more than Lillian and Owen, and it's very difficult for me to trust those that take care of him, unless.... the nurses are truly exceptional.... those of you know who you are. And then there are those that are less exceptional, as in any profession. So anyone new, or anyone that a previous experience was less than stellar, I have an inner struggle. Read between the lines, I just had a hard time leaving the hospital.
And, so on the way home, Todd knows my struggle, and it was mostly silent. In that time, I really thought about faith. Faith in GOD, faith in healthcare, faith in myself as a mom.... etc. What I decided about this whole process is that you have to have faith that things are just going to be okay. Faith that GOD will take care of your children. I had faith that GOD would bring me children, albeit a difficult process to get there... at some point I just gave my issues to GOD and told him that do with it what you will, I am no longer in charge. I am not there yet.... but I need to get there. I can't be in the NICU 24/7, when they grow and go to school, I won't be there. When they get married and have their own children, I won't always be there. I'm learning that the worry will never end, but I just have to have faith.
I know this is really deep, especially to have Real Housewives of New Jersey on in the background while I type this, but.... in order to sleep, in order to indure the battle of having 3 kids in an ICU.... I have to have faith.
Today really was a good day. Each day with the trio is truly a blessing. I did get my hair cut, that too could be considered a blessing!
Todd and I went back to the hospital tonight to see the kids, as he didn't get a chance to go during the day. I had some struggling moments at the hospital tonight. Grey's health still worries me more than Lillian and Owen, and it's very difficult for me to trust those that take care of him, unless.... the nurses are truly exceptional.... those of you know who you are. And then there are those that are less exceptional, as in any profession. So anyone new, or anyone that a previous experience was less than stellar, I have an inner struggle. Read between the lines, I just had a hard time leaving the hospital.
And, so on the way home, Todd knows my struggle, and it was mostly silent. In that time, I really thought about faith. Faith in GOD, faith in healthcare, faith in myself as a mom.... etc. What I decided about this whole process is that you have to have faith that things are just going to be okay. Faith that GOD will take care of your children. I had faith that GOD would bring me children, albeit a difficult process to get there... at some point I just gave my issues to GOD and told him that do with it what you will, I am no longer in charge. I am not there yet.... but I need to get there. I can't be in the NICU 24/7, when they grow and go to school, I won't be there. When they get married and have their own children, I won't always be there. I'm learning that the worry will never end, but I just have to have faith.
I know this is really deep, especially to have Real Housewives of New Jersey on in the background while I type this, but.... in order to sleep, in order to indure the battle of having 3 kids in an ICU.... I have to have faith.
Sunday, July 18, 2010
update and randomness
Update on today: Grey is off CPAP, and seems so much happier when I held him today. His little face isn't scrunched up anymore, and everytime I looked in his isolette he was sleeping with his little arms above his head, which is how he likes to sleep.
Owen is doing well, he drank almost all of his bottle for daddy.
Lillian took about 15 cc of a bottle for me.
My brother and his girlfriend came down to see them. It was nice to visit with him a little.
On to randomness...
I went to the grocery store for the first time in about 7months. Kroger at Geist has changed everything around, imagine my surprise. I do remember how much grocery shopping isn't my favorite thing to do. Nevertheless it's done, and I bought some "GUSHERS" which happen to be my favorite thing to eat along with fruit roll-ups. This is a new favorite, and I'm sure it will pass... but for now I'm addicted.
Tomorrow I am FINALLY getting my hair cut and my eyebrows done. My mother in law is bringing over supper, which will be super! My mom is coming for a visit. I'm looking forward to all of that, but especially my hair cut. It's in desperate need of cutting. It needs color too, but that takes too much time right now.
Big Brother is on tonight. Oh, the smut that I enjoy on TV is truly sad.
Nachos for dinner....I'm gonna figure out how to post pictures tomorrow....
Owen is doing well, he drank almost all of his bottle for daddy.
Lillian took about 15 cc of a bottle for me.
My brother and his girlfriend came down to see them. It was nice to visit with him a little.
On to randomness...
I went to the grocery store for the first time in about 7months. Kroger at Geist has changed everything around, imagine my surprise. I do remember how much grocery shopping isn't my favorite thing to do. Nevertheless it's done, and I bought some "GUSHERS" which happen to be my favorite thing to eat along with fruit roll-ups. This is a new favorite, and I'm sure it will pass... but for now I'm addicted.
Tomorrow I am FINALLY getting my hair cut and my eyebrows done. My mother in law is bringing over supper, which will be super! My mom is coming for a visit. I'm looking forward to all of that, but especially my hair cut. It's in desperate need of cutting. It needs color too, but that takes too much time right now.
Big Brother is on tonight. Oh, the smut that I enjoy on TV is truly sad.
Nachos for dinner....I'm gonna figure out how to post pictures tomorrow....
My furry friends
Allow me to get away from the NICU in my blogging. (Even though it is constantly in my mind!)
Todd and I have 2 siberian huskies. Jasmine is black and white, blue eyes.... 9 years old. Hendrix is grey and white, blue eyes.... 8 years old. These dogs have been our life forever now. We got Jaz as a 9week old pup; we got Hendrix from a rescue when he was 18 months. They are loyal friends, and always there when the world has seemed to crumble. I remember my first miscarriage. I crawled in bed, and was planning on crying myself to sleep when 2 furry friends jumped up in the bed, Jaz licked me first, and laid down, and then Hendrix came up to me wooo'd in my ear and laid down beside Jaz. They are rarely in the bed together, and aren't wrestling around. They laid there while I cried, and both of them put their heads on my belly as to know that they knew something was wrong, but to tell me it would be ok. Little did I know, they were so right.
Now that we have the triplets, and the NICU is our priority, they are getting less attention. It bothers me a bit, but I know this is just the way it has to be. They honestly don't seem to mind. At their age, they sleep so much of the day. As long as they get their yogurt for breakfast, potty breaks, and dogfood for dinner they are quite satisified with life.
Once the kids come home, there will be a bigger adjustment. We are planning on gating half of the downstairs off so that there is containment for the dogs while the babies are growing. There is just no way that for the first few months we can keep the trips safe around dogs that we have never trained to be gentle, or even been around infants. This does bring me some guilt, but I know that it is a necessity. I'm sure more to come on this.
Once I figure out how to post pics, I'll get some furry friend pics posted!
Todd and I have 2 siberian huskies. Jasmine is black and white, blue eyes.... 9 years old. Hendrix is grey and white, blue eyes.... 8 years old. These dogs have been our life forever now. We got Jaz as a 9week old pup; we got Hendrix from a rescue when he was 18 months. They are loyal friends, and always there when the world has seemed to crumble. I remember my first miscarriage. I crawled in bed, and was planning on crying myself to sleep when 2 furry friends jumped up in the bed, Jaz licked me first, and laid down, and then Hendrix came up to me wooo'd in my ear and laid down beside Jaz. They are rarely in the bed together, and aren't wrestling around. They laid there while I cried, and both of them put their heads on my belly as to know that they knew something was wrong, but to tell me it would be ok. Little did I know, they were so right.
Now that we have the triplets, and the NICU is our priority, they are getting less attention. It bothers me a bit, but I know this is just the way it has to be. They honestly don't seem to mind. At their age, they sleep so much of the day. As long as they get their yogurt for breakfast, potty breaks, and dogfood for dinner they are quite satisified with life.
Once the kids come home, there will be a bigger adjustment. We are planning on gating half of the downstairs off so that there is containment for the dogs while the babies are growing. There is just no way that for the first few months we can keep the trips safe around dogs that we have never trained to be gentle, or even been around infants. This does bring me some guilt, but I know that it is a necessity. I'm sure more to come on this.
Once I figure out how to post pics, I'll get some furry friend pics posted!
Saturday, July 17, 2010
Nicu take #1
Oh the NICU rollercoaster..... To summarize, and just make it easy to read... and not feel like you want to scoop my little Grey up and take him home RIGHT NOW.... here it goes.
Owen and Lillian have really done quite well since birth. They were a little bigger. Owen was 3lb 3oz, Lillian was 2lb 6 oz, Grey was 2lb 1 oz. I was released from the hospital Monday June 21st. Still feeling a bit out of sorts, we spent the afternoon in the NICU. Lillian and Owen were doing fine, on CPAP, but doing great. Grey had some issues with his bowels. His bowel sounds were a bit slow, and he was having some vomiting of his feedings. To make a long story short, Grey had a test the next day, and went to surgery about 2 hours after that. I will skip all the crying, and blubbering I did... feeling like I could pass out, and simply vomit at any time.... Grey had his small intestine resected, and now has what is called an ostomy to rest his bowel. He will have another surgery to reconnect his bowel before discharge home.
All is well for a while..... enter heart murmurs... on all 3 babies. Lillian and Owen, were given medication for 2 days to close the murmur..... Done! Repeat echo shows improvement.
Grey, can't have medication because it is costic on his bowels. June 30th he had his heart murmur surgically repaired. shew.... typing this makes me emotional. (thank you hormones!)
My little Grey strives like a rockstar after that. He gets off the ventilator in a few days....
AND THEN, July 11th, we receive an early morning call from his nurse stating that he was put back on the ventilator. After a lot of ventilator support, and support to help his blood pressure, he turned around in about 24 hours. Cause: unknown, likely an infection somewhere. All cultures are negative. We will likely never know the cause, which is fine. I just don't want it to happen again!
Let's just say that all week, there has been some intense praying for the kids. There really isn't much else to do. You have no control, the only real thing is to drop to your knees and hope that GOD is listening and has the same plan as you do!
Updates currently:
Grey is doing great. Tomorrow he should get back to just a nasal canula oxygen. He is on CPAP now, which has his poor little nose scrunched up, and truly makes the little man mad! He is getting breastmilk again, and up to where he was before his bout of whatever it was.
Lillian is a superstar. She has been taking some of her food in a bottle. Today she took less than days previously, but that is to be expected. She is not on any oxygen, and gaining weight!
Owen is the big boy! He too is growing, and taking some bottle breastmilk. He is off oxygen. It's quite funny that some have said that his hair is turning red. I'm not seeing it, and Todd says, "NO it isn't!" nonetheless, it's interesting to see them grow.
More later....brauts and mashed potatoes for dinner!
Owen and Lillian have really done quite well since birth. They were a little bigger. Owen was 3lb 3oz, Lillian was 2lb 6 oz, Grey was 2lb 1 oz. I was released from the hospital Monday June 21st. Still feeling a bit out of sorts, we spent the afternoon in the NICU. Lillian and Owen were doing fine, on CPAP, but doing great. Grey had some issues with his bowels. His bowel sounds were a bit slow, and he was having some vomiting of his feedings. To make a long story short, Grey had a test the next day, and went to surgery about 2 hours after that. I will skip all the crying, and blubbering I did... feeling like I could pass out, and simply vomit at any time.... Grey had his small intestine resected, and now has what is called an ostomy to rest his bowel. He will have another surgery to reconnect his bowel before discharge home.
All is well for a while..... enter heart murmurs... on all 3 babies. Lillian and Owen, were given medication for 2 days to close the murmur..... Done! Repeat echo shows improvement.
Grey, can't have medication because it is costic on his bowels. June 30th he had his heart murmur surgically repaired. shew.... typing this makes me emotional. (thank you hormones!)
My little Grey strives like a rockstar after that. He gets off the ventilator in a few days....
AND THEN, July 11th, we receive an early morning call from his nurse stating that he was put back on the ventilator. After a lot of ventilator support, and support to help his blood pressure, he turned around in about 24 hours. Cause: unknown, likely an infection somewhere. All cultures are negative. We will likely never know the cause, which is fine. I just don't want it to happen again!
Let's just say that all week, there has been some intense praying for the kids. There really isn't much else to do. You have no control, the only real thing is to drop to your knees and hope that GOD is listening and has the same plan as you do!
Updates currently:
Grey is doing great. Tomorrow he should get back to just a nasal canula oxygen. He is on CPAP now, which has his poor little nose scrunched up, and truly makes the little man mad! He is getting breastmilk again, and up to where he was before his bout of whatever it was.
Lillian is a superstar. She has been taking some of her food in a bottle. Today she took less than days previously, but that is to be expected. She is not on any oxygen, and gaining weight!
Owen is the big boy! He too is growing, and taking some bottle breastmilk. He is off oxygen. It's quite funny that some have said that his hair is turning red. I'm not seeing it, and Todd says, "NO it isn't!" nonetheless, it's interesting to see them grow.
More later....brauts and mashed potatoes for dinner!
HELLO!!!!!
Well, this is my first attempt to blog EVER! I really want to give this my best effort, so that I can document the triplets, and our journey from the NICU to all the wonderful events that we are looking forward to.
Let me start out by saying, I am not an english major.... soooooo, it is unlikely that there will always be correct grammar and spelling.
A little about my family!!!
I am married to Todd. We have been married since November 9, 2002. I am a nurse. I have a job now that is super.... I work at home, for a large insurance company and it REALLY fits my life! In my former life, I worked many ICU jobs, and also worked as a transplant coordinator for several years. My husband works in finance, and always has. That is our boring professional life.
Now for the real things that count..... After both earning or graduate degrees, we decided it was time to have children...... SO, after 4 rounds of Clomid, 2 rounds of femara/follistim IUI's, 2 fresh IVF, 1 frozen IVF.... 2 miscarriages, a diagnosis of hypothyroid, and MTHFR.... we hit the jackpot with TRIPLETS!
Pregnancy with triplets is no joke, that is the best I can say about it. At 9 weeks I had a kidney stone, (while traveling out of town for work). At 13 weeks I had an abdominal cerclage (TAC). 16 weeks hospitlization for dehydration. 22 weeks hospitalization for preterm labor. 27 weeks hospitalization for pre-eclampsia.... delivery at 30 weeks, on the button!
There were some complications with the c-section. The spinal was unsuccessful, and I ended up needing general anesthesia. Let me also just throw out there that mag drips have to be some form of torture somewhere! AND our family quickly expanded from 2, to 5!!!!!
THEN, starts the NICU rollercoaster!
Let me start out by saying, I am not an english major.... soooooo, it is unlikely that there will always be correct grammar and spelling.
A little about my family!!!
I am married to Todd. We have been married since November 9, 2002. I am a nurse. I have a job now that is super.... I work at home, for a large insurance company and it REALLY fits my life! In my former life, I worked many ICU jobs, and also worked as a transplant coordinator for several years. My husband works in finance, and always has. That is our boring professional life.
Now for the real things that count..... After both earning or graduate degrees, we decided it was time to have children...... SO, after 4 rounds of Clomid, 2 rounds of femara/follistim IUI's, 2 fresh IVF, 1 frozen IVF.... 2 miscarriages, a diagnosis of hypothyroid, and MTHFR.... we hit the jackpot with TRIPLETS!
Pregnancy with triplets is no joke, that is the best I can say about it. At 9 weeks I had a kidney stone, (while traveling out of town for work). At 13 weeks I had an abdominal cerclage (TAC). 16 weeks hospitlization for dehydration. 22 weeks hospitalization for preterm labor. 27 weeks hospitalization for pre-eclampsia.... delivery at 30 weeks, on the button!
There were some complications with the c-section. The spinal was unsuccessful, and I ended up needing general anesthesia. Let me also just throw out there that mag drips have to be some form of torture somewhere! AND our family quickly expanded from 2, to 5!!!!!
THEN, starts the NICU rollercoaster!
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