Welcome to my blog!

A blog about our busy family with two amazing kids, one of whom happens to have Down syndrome!

Friday, March 30, 2012

Post Op Day 1

"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!

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!

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!

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!

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!

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.

Wednesday, March 14, 2012

OHS is scheduled

Lauren's open heart surgery is scheduled for Monday March 19th. 5 days from now. I am so scared and yet so ready to put this major hurdle behind her. I'm excited for her to be able to breathe. I'm excited for her to grow. I'm excited to take her home. I'm trying really hard to focus on the positives because otherwise I think I'll fall apart.

I don't know any particulars about what time or how all of this really works so far. We can't stay with her when she's in the ICU so I think at least the first night we'll be staying at the Ronald McDonald house, which we can currently see from our window! I'm glad we'll still be able to stay very close by.

It's been in the 70's and beautiful here! I went for a nice walk this afternoon and when I got back I told Lauren all about how when she's all better we can go for long walks and play at the park when it's this nice outside! The nice weather does a lot to boost my mood and spirit so I'm very thankful for sunshine and warmth.

Again, we so appreciate your continued prayers for everything that's going on right now.

Monday, March 12, 2012

Happy 1 month birthday Lauren!!!

It's my sweet baby girl's one month birthday today!!

Yes, in this family we celebrate months. No joke, I sang my son "happy birthday" on every month-birthday for at least the first year. Bonus points for me if I remembered at 4:04pm, the time he was born.

The game plan so far is that the doctors are just going to watch Lauren closely and let her grow for a few more days at least before making any decisions or concrete surgery plans. That's definitely fine by me! I'll speak with her main cardiologist sometime today and get some more information about what they're thinking.

I personally think it's really great that she's doing well enough that we can wait a little while. Every day is another day for her to grow stronger and hopefully bigger before her surgery. Praise God for that!

I'll be sure to update either here or on facebook (or both!) as we learn new information. Thanks everybody!

Sunday, March 11, 2012

Quick update

Lauren is sleeping comfortably in her hospital crib so I thought I'd update again really quick!

During rounds this morning we had the same doctor as yesterday. His name is Dr. Dick so I've been referring to him as Dr. Dickhead. Not very Christ-like but hey, I'm human. I actually did like him better today! I asked him why he feels that surgery is "the sooner the better". He said that actually kids with this type of surgery that are in heart failure like she is tend not to grow until after surgery and then they do quite well. He feels that surgery is the only option to get her healthy, even though it's earlier than planned. I also asked about the risks with her being so much younger than babies typically are for this surgery. He said that we're past the huge risk age, which is the newborn period. She'll be a month old tomorrow. He said it's really not a whole lot riskier with her being a bit older, especially if we can wait until 6 weeks or older. So I honestly DO feel better about it. I did NOT expect him to set me at ease about this, but he did!

Thanks for al the prayers, we really appreciate it!

Saturday, March 10, 2012

Day 6 and possible surgery timeline

It's looking like Lauren will be in the hospital until her open heart surgery. One of the doctors on her team put it this way: We're having a hard time getting her to gain weight while in the hospital so it isn't reasonable to expect it at home. She is back to her birthweight though which I think is pretty awesome. She gained weight initially but it was fluid weight and she's had (and is still getting) a ton of diuretics by her IV to get rid of the extra fluid. This should help her breathing as well as give everyone a more accurate assessment of her weight.

I totally understand that she needs to be here but honestly, this sucks. I just want my baby at home and have her be well and feeling great.

Her breathing has slowed down to a more "acceptable" range but she still is breathing fast. This is because due to the whole in her heart blood is being shunted over to her lungs. She's breathing very fast to compensate for the extra fluid. She's also using up a ton of calories by breathing so fast and heavy which is why she isn't growing they way we'd like to see.

One of the doctors on her team said surgery could be in as little as 2 weeks. This terrifies me, I was expecting four months, not 6 weeks old. But then later her main cardiologist came in and said her breathing looks a lot better which is a good sign that the medications are working. I'm pretty sure we'll be seeing how things go over the weekend before any type of decision will be made. I am so scared of the possibility of surgery being so soon. I'm not ready. Will I ever be ready? Part of me wants it over with so we can get Lauren home and she can be a normal kid and we can be a normal family. And the other part of me wants to throw up at the thought of my tiny little baby having open heart surgery.

The weekend on-call cardiologist is not my favorite person. He stormed in our room while I was sleeping and said, "I guess I'm supposed to introduce myself. I'm just the weekend guy, I'm old so they don't let me make decisions anymore. But as for surgery, I say the sooner the better."
This was after he listened to her for maybe 5 seconds. Really?! I honestly would've laughed if I wasn't so sad. He was seriously like a character from a movie. I'm glad he's just here on the weekend!! We get our (amazing) regular team back on Monday, which is also Lauren's 1 month birthday!! I think we should have a party for sure.

Please pray for us. Pray for acceptance on my part. Pray for skill and wisdom for her doctors. Pray that Lauren feels as good as possible. Pray for healing.

Her middle name is Hope for a reason!

Tuesday, March 6, 2012

We're in the hospital

I spoke too soon!

We weren't able to manage everything with every other day appointments and Lauren was admitted to the hospital yesterday. The main concerns are getting her to gain weight and to keep her breathing at a more normal rate (in the 60's rather than the 120's). Right now she's getting IV Lasix and she's getting aldactone via NG tube. We might start digoxin soon, which will hopefully help her heart a little bit since it has an increased workload.

She's taking all of her feeds through her tube for now until we can get her some more energy. We will be going home with the NG tube though and most of her feeds will be through that. Once we're home we can start out her feeds by bottle and tube everything she doesn't finish in 15-20 minutes.

Thanks again for the prayers and kind thoughts, I'll keep you updated! It's looking like we'll be here until Friday at least.

Thursday, March 1, 2012

Newborn pictures and no hospitalization!!

Lauren gained enough weight to NOT have to be admitted to the hospital! We are so happy that our prayers have been aswered with a yes!

She's gained an ounce per day since we started adding powdered formula to her breastmilk bottles. She's up to 6lbs 7oz!

Her oxygen saturation kept dropping into the low 90's so we will have to go to the pediatrician every other day for a while to monitor her, but it's definitely better than hospitalization!

Thank you so much for all of the prayers, kind words and encouragement!

Also, we had Lauren's newborn pictures taken!! The photographer, Abbie, is amazing and super nice! Check out her website at http://a-lloyd-photography.com/