"I love you. I always wanted you."
Words from a mother terrified to let go. Handing Lauren to the surgical team yesterday was the hardest thing I've ever done. They would literally hold my child's life in their hands. I have never been so scared.
Today she is doing really well! She's currently in the middle of her second practice run without the ventilator. Her breathing tube should be out tonight or tomorrow and I'm really hoping we can hold her sometime this weekend or early next week. I miss cuddling her so much already!
Thank you all so much for every prayer, though and kind word. We have felt so supported by our family and friends, both present and virtual. Please continue praying for a very uneventful recovery!
Friday, March 30, 2012
Thursday, March 29, 2012
Surgery is done!!
We should get to see her soon! Everything went really well and according to plan!!
Surgery Update
The actual procedure itself is finished and Lauren should be off bypass soon and have her echo right in the OR. We should be getting an update within the next half hour.
I will feel so much better once she's off bypass!
I will feel so much better once she's off bypass!
Wednesday, March 28, 2012
OHS is in less than 7 hours
I'm writing this post with a sleeping baby on my lap!
I am terrified. I can't make myself say it out loud, but what if she dies? I am so scared. I wish I could take back every ounce of sadness I felt when we found out that Lauren had Down syndrome. I wish I could tell my 18 weeks pregnant self that she would be a true gift. I love her so much and I honestly feel so LUCKY to have the honor of parenting a child with Down syndrome. And even luckier that it's my sweet, snuggly, redheaded Lauren Hope.
We have truly the best team of doctors, nurses, anesthesia people, and etc tomorrow. We also have God! I truly believe that Lauren has so much to teach the world and I'm honored to help her learn to do just that.
Please pray for the medical professionals working on Lauren, pray for peace and calm in my part and pray that my beautiful daughter wakes up to a healed heart tomorrow.
I will update here and on facebook tomorrow!
I am terrified. I can't make myself say it out loud, but what if she dies? I am so scared. I wish I could take back every ounce of sadness I felt when we found out that Lauren had Down syndrome. I wish I could tell my 18 weeks pregnant self that she would be a true gift. I love her so much and I honestly feel so LUCKY to have the honor of parenting a child with Down syndrome. And even luckier that it's my sweet, snuggly, redheaded Lauren Hope.
We have truly the best team of doctors, nurses, anesthesia people, and etc tomorrow. We also have God! I truly believe that Lauren has so much to teach the world and I'm honored to help her learn to do just that.
Please pray for the medical professionals working on Lauren, pray for peace and calm in my part and pray that my beautiful daughter wakes up to a healed heart tomorrow.
I will update here and on facebook tomorrow!
Friday, March 23, 2012
New surgery date
I'm posting from my phone, so please forgive any format issues!
Lauren's surgery is scheduled for Thursday March 29th! This is the third date we've gotten and we keep.having setbacks. Lets hope this one sticks! My nerves are shot after mentally preparing so many times.
Great news...Lauren now weighs 6lbs 12oz !!!! I am so excited. I think once she hits 7lbs I'm going to throw a party. She'll be 6 weeks old on Monday, where has the time gone?! She's getting so big and is so awake and alert. I thought I might've seen a smile the other day but brushed it off and said, "no way!". But today her nurse (my favorite) said she thinks she got a real smile this morning! What a big milestone!
I'll update more when I have my laptop back here at the hospital!
Lauren's surgery is scheduled for Thursday March 29th! This is the third date we've gotten and we keep.having setbacks. Lets hope this one sticks! My nerves are shot after mentally preparing so many times.
Great news...Lauren now weighs 6lbs 12oz !!!! I am so excited. I think once she hits 7lbs I'm going to throw a party. She'll be 6 weeks old on Monday, where has the time gone?! She's getting so big and is so awake and alert. I thought I might've seen a smile the other day but brushed it off and said, "no way!". But today her nurse (my favorite) said she thinks she got a real smile this morning! What a big milestone!
I'll update more when I have my laptop back here at the hospital!
Saturday, March 17, 2012
Just thinking...
When I was pregnant with Lauren I thought about Down syndrome all the time. It was always on my mind. I researched online, I read books, I joined message boards (that are awesome!). It was the way I prepared myself before Lauren was born.
Now that she's actually here...it doesn't matter. I don't even think about it. It doesn't cross my mind except for during morning rounds they say she "has a history of trisomy 21" which sounds pretty funny. I'm sure it will "matter" more later on when this hospital stay is behind us and her heart is repaired. But for now it's not even on our radar.
Being in the hospital sucks. I wish I didn't have to see my baby have painful procedures done. I wish more than anything I could do it for her and take her pain on myself. And then I remember...I'm not the only parent in this situation. Every parent on this floor feels the same way I do.
There's a little girl on this floor who is probably around 2 years old. She is absolutely beautiful. Gorgeous. And she needs a heart transplant. Please pray for this little girl and her family. I can't imagine what they are going through, knowing that not only does their little girl need a heart transplant but that in order for her to have one it must come from somebody else's child.
It's humbling to be here at U of M. We are not the only family struggling. We are not the only ones who are sad and Lauren is not the only sick baby.
There was a tornado warning here on Thursday evening and we all had to evacuate to the hallways. It was really nice to make friends and get to know some of the other families here. For me at least, it helped me to realize that we're really not alone in this. Other people here "get it". It really opened my eyes to the fact that we aren't the only ones in this situation.
Just thinking "out loud" today. It's a beautiful, sunny day in Ann Arbor and I'm pretty sure we're taking Ryan to the park later while grandma "babysits" Lauren!
Now that she's actually here...it doesn't matter. I don't even think about it. It doesn't cross my mind except for during morning rounds they say she "has a history of trisomy 21" which sounds pretty funny. I'm sure it will "matter" more later on when this hospital stay is behind us and her heart is repaired. But for now it's not even on our radar.
Being in the hospital sucks. I wish I didn't have to see my baby have painful procedures done. I wish more than anything I could do it for her and take her pain on myself. And then I remember...I'm not the only parent in this situation. Every parent on this floor feels the same way I do.
There's a little girl on this floor who is probably around 2 years old. She is absolutely beautiful. Gorgeous. And she needs a heart transplant. Please pray for this little girl and her family. I can't imagine what they are going through, knowing that not only does their little girl need a heart transplant but that in order for her to have one it must come from somebody else's child.
It's humbling to be here at U of M. We are not the only family struggling. We are not the only ones who are sad and Lauren is not the only sick baby.
There was a tornado warning here on Thursday evening and we all had to evacuate to the hallways. It was really nice to make friends and get to know some of the other families here. For me at least, it helped me to realize that we're really not alone in this. Other people here "get it". It really opened my eyes to the fact that we aren't the only ones in this situation.
Just thinking "out loud" today. It's a beautiful, sunny day in Ann Arbor and I'm pretty sure we're taking Ryan to the park later while grandma "babysits" Lauren!
Surgery is rescheduled
I haven't updated since the "fiasco".
We have had lots of nursing students. I was obviously okay with that, seeing how I just was one not long ago! Until Thursday.
The nursing student assigned to Lauren seemed extremely nervous, which I would've been fine with except for the fact that I only saw the RN once that day. She never double checked the assessment or anything. Lauren had a small red spot on her foot that the student said she'd tell the nurse about. Well, she forgot. It ended up that Lauren's whole left ankle became red, puffy and hot. Lauren was obviously in pain. It wasn't even looked at by a doctor until around 15 hours after it was originally noticed, when the new nurse at shift change saw that it was getting worse (she marked it with her pen at the beginning of her shift).
The student also recorded a fever of 39.6, which is almost 104. She didn't tell anyone and recorded it in the chart. The RN she was following didn't double check the student's charting so it was missed. Nobody noticed that a fever of 104 was recorded until over 4 hours later. If you get a fever of 104 on a 4 week old baby scheduled for surgery in 3 days, you tell somebody immediately.
All of this resulted in Lauren having to get a lumbar puncture (spinal tap) done at 4am. She was so worked up and in pain from her ankle and blood draws and the lumbar puncture that she literally screamed from about 10pm to 5:30am.
I basically flipped out and yelled at everyone who would listen because honestly, all of those things combined are totally unacceptable. There is no excuse. So we no longer have nursing students assigned to Lauren. I feel really bad about it but maybe this group of students should be assigned to less critical patients.
They've been checking her blood for cultures to see what exactly the bacteria is so they can treat it effectively. For now she's on Vancomycin which is super strong and pretty much kills everything. She's had one negative culture since it was started, so that's great!
The problem is that Vanco eats up IV's like nobody's business. So Lauren has had a new IV every day. She is tiny. Her veins are tiny. There are no more spots for IV's. They want to put in a PICC line (a central catheter that goes much further into her vein and is a much better long term solution that repeated needlesticks for IVs that don't last) but the doctors want to wait until her infection is cleared up.
All of this means that surgery cannot happen on Monday! I'm actually a little bummed because I just want it over with. I spoke with the surgeon again (I met with him while I was pregnant) and he really put me at ease about her surgery.
Surgery is tentatively scheduled for Thursday March 22nd, pending blood cultures. She's a lot more comfortable and her ankle looks way better. Happy baby equals happy mommy, so we're all good for now.
I'll update again when we for sure know her surgery date.
We have had lots of nursing students. I was obviously okay with that, seeing how I just was one not long ago! Until Thursday.
The nursing student assigned to Lauren seemed extremely nervous, which I would've been fine with except for the fact that I only saw the RN once that day. She never double checked the assessment or anything. Lauren had a small red spot on her foot that the student said she'd tell the nurse about. Well, she forgot. It ended up that Lauren's whole left ankle became red, puffy and hot. Lauren was obviously in pain. It wasn't even looked at by a doctor until around 15 hours after it was originally noticed, when the new nurse at shift change saw that it was getting worse (she marked it with her pen at the beginning of her shift).
The student also recorded a fever of 39.6, which is almost 104. She didn't tell anyone and recorded it in the chart. The RN she was following didn't double check the student's charting so it was missed. Nobody noticed that a fever of 104 was recorded until over 4 hours later. If you get a fever of 104 on a 4 week old baby scheduled for surgery in 3 days, you tell somebody immediately.
All of this resulted in Lauren having to get a lumbar puncture (spinal tap) done at 4am. She was so worked up and in pain from her ankle and blood draws and the lumbar puncture that she literally screamed from about 10pm to 5:30am.
I basically flipped out and yelled at everyone who would listen because honestly, all of those things combined are totally unacceptable. There is no excuse. So we no longer have nursing students assigned to Lauren. I feel really bad about it but maybe this group of students should be assigned to less critical patients.
They've been checking her blood for cultures to see what exactly the bacteria is so they can treat it effectively. For now she's on Vancomycin which is super strong and pretty much kills everything. She's had one negative culture since it was started, so that's great!
The problem is that Vanco eats up IV's like nobody's business. So Lauren has had a new IV every day. She is tiny. Her veins are tiny. There are no more spots for IV's. They want to put in a PICC line (a central catheter that goes much further into her vein and is a much better long term solution that repeated needlesticks for IVs that don't last) but the doctors want to wait until her infection is cleared up.
All of this means that surgery cannot happen on Monday! I'm actually a little bummed because I just want it over with. I spoke with the surgeon again (I met with him while I was pregnant) and he really put me at ease about her surgery.
Surgery is tentatively scheduled for Thursday March 22nd, pending blood cultures. She's a lot more comfortable and her ankle looks way better. Happy baby equals happy mommy, so we're all good for now.
I'll update again when we for sure know her surgery date.
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