26 weeks today, 5 days old

Lucas is five days old today and would have been 26 weeks along. He had a challenging morning today as his oxygen levels dropped and his lungs appeared to collapse some. His heart rate was irratic while they worked to stablize him. The NICU team put him up to 100% oxygen for a while but by 11 AM when I could see him, his heart rate and blood oxygen levels were all stable. This is one of the first scary moments but it was a relief to have it explained starting with "Lucas is stable now, but..." The doctor still has him off the photo therapy light for jaundice but reminded again that the jaundice will likely get worse and need to be treated again.

Because of the episode this morning, the ultrasound tech was unable to do the scan of Lucas's heart again to see it the PDA treatment worked. The next biggest hurdle for us is getting this heart valve closed. Until it is, Lucas will continue to have issues like this morning because his heart is not pumping blood and oxygen the way its supposed to. This may mean Lucas will have to have surgery which means he'll be transferred to Children's Hospital. It increases the risk we'll lose him too. The doctor is looking at his options to remove Lucas's umbilical cord IV and insert a ***PICC line because it lasts longer and is more suited for the efforts of giving Lucas medicine

 We are gathering hope in the success stories of other micropremies, but are reminded daily to be prepared to lose our son. Going home without him today was hard but not nearly as hard as being home alone with an empty crib knowing it may never have my baby in it.

The bright news today is that the new medication I started last night has brought my blood pressure down well and I'm maintaining below 150's/90's. I'm moving slowly, but my furry babies were as excited as I've ever seen them to have me home. I've got plenty of chocolate to make me feel better and most of my fish lived through me being away though Brandon forgot to feed them most days. Thank you for follow our story and I hope you have a blessed night!

~Kristen
P.S. Prayers and best wishes to Aunt Alisa and her family for her surgery and recovery today.

***     Definition: Percutaneously inserted central catheters (PICC lines), are long, thin, plastic tubes that travel from a vein in an arm or leg into one of the large veins near the heart. In premature infants, they are used to deliver fluids or medications.

A PICC line is similar to a peripheral IV, but is longer and lasts longer. Premature infants have fragile veins, and peripheral IVs usually last only 1 to 3 days. A PICC line, though more difficult to insert, can be used for 1 to 2 weeks or more.  PICC insertions are less invasive, have decreased complication risk associated with them, and remain for a much longer duration than other central or periphery access devices.

Staying another night

Just as Brandon and I were ready to leave, the nurse advised she needed to check my blood pressure.  Upon checking, it came back high at 169/120  which sounded crazy. We did it again and it was 162/98.  A half hour later after laying down it was 175/99.  So alas, I'm staying here another night while they try different medications to lower my blood pressure.

Good news though! Lucas's ultrasound of his brain came back with everything looking normal. There was nothing alarming at this time about what they saw on the scan. Plus, the nurse told Brandon that there are indications baby is attempting to breath some on his own on the new ventilator. Mommy and daddy are happy with todays progress and even happier that we got to touch him again for the first time since Saturday. We have a few more pictures, but I cant figure out how to post at the moment and I'm supposed to be relaxing so I'll work on it tomorrow.
Lets see what Wednesday brings...

Four days old and Counting...

Lucas update! We got positive news this morning from Dr. Kerr in the NICU. Lucas's electrolites have improved and so has his jaundice. They're taking him off of the photo therapy, although the warned that most likely he'll have to go back on later. This is a good sign. He was removed from the oscillating ventilator and placed on the regular one that means his need for higher oxygen levels has reduced.

The results of his heart scan show the PDA (open heart valve issue) was not fixed with the first treatment, so they have given him a second treatment and will look at his heart again. If his PDA does not improve, it is possible that they may need to send him to Children's for surgery, but they will only do this if the impact of the PDA is greater than the impact surgery would have to his health. The scan of his brain has been done, but as of right now, the results are not in.

Brandon and Kristen are excited to have some positive news to help keep our heads up and staying positive. We continue to pray that things will go well and remain educated about what might not go well. Brandon prays every night for his son and other families going through the same thing.

Mommy Update

This week has been one of the scariest of my life. I went from common complaining to being told to make a choice between my life/health and giving my son a better shot at his. I experienced a lot of 'firsts' including my first surgery, first hospital stay, first baby and first realization that my whole life has just changed. At first I struggled to fully grasp my situation and the feelings I've been having. I've learned a whole lot about premature babies, whats normal and that I'm not crazy for struggling with my emotions as I've been. Everyone has been extremely supportive and I'm discovering that I'm stronger than I ever thought I could be, which I hope lasts over the next three months and beyond.

The hospital out here and the staff are amazing! I've never felt so well taken care of or felt such concern from utter strangers. The nurses fill many roles from housekeeper to friend. Without their support and concern I think that this would have been a much harder process. I am still struggling to control my blood pressure and still have moments where I am lectured to take it easy, but most who know me know this will be a greater challenge. I will do my best to remember that I must take care of myself so I can be around for my Lucas and continue working with my doctors to find the right medication combination to keep me safe and healthy.

No matter what happens with my son or myself, I feel all of this is happening as its supposed and for a purpose. I don't ask why its happening to me anymore. I ask instead who is this going to make me be going forward. My challenges are so small compared to my son's. He is my inspiration and I cannot wait to be the mommy I've always wanted to be...   ~Kristen

All stable on the Lucas front.

What weighs 1 pound, yet is made of pure awesome?

Answer: Lucas Matthew Sharp!

It's good and bad to say that things are "same old, same old". On the good side, Lucas hasn't really gotten worse. He's very sensitive today - so the nurse told us that when he would need to be touched earlier in the day, his desaturation on his oxygen would go lower, which meant they needed to increase his oxygen.

He's currently at 50% oxygen.

We haven't gotten the test results back on his PDA (heart valve condition), but that's because it was run in the afternoon today and we're unsure of how long it takes to run the results. The cardiologist was very very busy today.

The head scan is due for tomorrow.

He's still stable.

It's going to be a slow moving process. We understand that. My sister said, "We just need to make it four more days." When we get to the end of the week, Lucas will have hit a huge milestone. Baby steps. Slow and steady wins the race.

Kristen has made tremendous strides in her milk production. She's still producing colostrum, but a lot more of it.

oh, and LUCAS is POOPING! I forgot the name they called it, but pooping is a good sign!


I also know that the volunteers were gone for the holiday and so they didn't have his name on the window, but today I saw that they had put it up:

We know he's very very sick, but it's still nice to see that they're making this more of a home for him.

We're looking ahead to the immediate future. We know about the honeymoon phase that many preemies go through, and we're preparing ourselves for the rollercoaster ride that (hopefully) will last the next few months. Kristen and Brandon have already started their emotional trials and tribulations, and again, thank you very dearly for the support.

Kristen is expecting to be released tomorrow.  And now... for cute, super adorable prints:

First Daddy Photo

Kristen also said they got little handprints and footprints. When we have pictures of those, we'll upload them, too. :) 

Baby steps forward...

**Note from Jamie**
I've enabled you to leave comments "anonymously" so that you don't have to have an account or a Facebook account to leave comments. Please leave your name so we know who is directing the comments. Thanks again for your concern!

Update from Kristen:

Latest update from NICU: Lucas is still stable and his blood oxygen levels are good. His weight and white blood cell count are still of concern. He will have another heart scan on Tuesday to see if his PDA has improved. We think they put off the ultrasound of his head, but we need to double check.

I was able to successfully produce some collostrum for Lucas through pumping which was very exciting for me. I want to help him get stronger! My blood pressures were pretty high this morning, but they put me back on the medicine to bring it down and its been better later throughout the day.

Update from Kristen

At last visit, little Lucas was on the oscillating ventilator and responding well- his blood oxygen levels improved. However, he was too sensitive tonight for Brandon or I to touch him. We will be hearing more about the ultra sound of his brain tomorrow that looks for hemoroaging- a potential condition in preemies. My pumping schedule is 8:30, 11:30, 2:30, 5:30 repeating. If you'd like to visit, please plan 1/2 hour after these times and call first so I know to expect you and tell you where I'll be. We have decided to limit visitors to the baby to immediate family for now to reduce stimulation to his environment. Thanks again for all the prayers and support!

1 day 7 hours strong!

Hello everybody!

I'm sitting at the hospital with Kristen and Brandon bringing you updates about Lucas.

Quick update on his status:

• Lucas has lost some weight, which is common in preemies like him. He's at 1 pound  now.
• He had some trouble breathing this morning. He's having trouble converting his blood gasses. The doctors are switching him to a different type of respirator called an oscillator which will help do that for him.
• They tested his heart today because he was having some blood pressure issues. When babies are in the womb, they have an open valve in their heart which is supposed to close when they are born. The neonatologist told us about this on Wednesday and said that with preemies like Lucas, sometimes the heart doesn't realize that it needs to close. This is called patent ductus arteriosis.
• They're monitoring his heart and if it looked open, they'll give him a shot.
• We don't have the results back yet on that.
• He has high levels of billirubin, which causes jaundice. They're giving him phototherapy for that condition.

The good news: He has 10 little fingers, and 10 little toes. He's super active, and he made it through the first 24 hours!  He is also peeing normally.

Kristen says he's adorable, and I agree :) Kristen says she is able to have a few more visitors, but she needs to know ahead of time if they are coming. She is starting to pump every three hours, so she wants to make sure if she has visitors it's not during that time. She still is limiting visitors to one or two at a time. Please let her know before you come. Hopefully, she expects to be discharged on Tuesday, but she won't be returning to work for a little while.

Here are some pictures and a video of baby Lucas:

More information about micro preemies...

I talked to my sister again and she appreciates all the support, but wanted me to collect some information. She is on visitor restriction because she's still being tested for a lot of things. The reason she was in the hospital and had to deliver early was because her blood pressure was sky-rocketing, and she needs a lot of rest to get that under control.

 I'm debating if I should even be visiting her or if we just need to give her time. She's very very tired. So, at this time only immediate family (so far it's just been Brandon, my parents, his mother, and me) are visiting.

She's thinking of coming up with a visitor schedule so that she has time to rest but also has time to see people, but she's groggy and sore - so I'll let you know if we come up with anything.

She also asked that I share some information about Lucas and what babies in his condition are likely to experience.

Earlier I mentioned that Lucas is in an isolette in the NICU and that it's very dark. The main thing he needs right now is dark and warmth to simulate being in the womb. He wasn't supposed to come out until March. Kristen said that although it's nice that she and Brandon and family want to see him, the act of visiting him is strange stimulation for him because he's not supposed to be out of his shell for a couple more months.

He's 25 weeks, but his weight makes me think his development is closer to 24 weeks. Right now, his lungs will not have developed fully. Lucas is on a breathing tube. He's also on an NG tube because he hasn't developed the ability to suck, swallow, or probably even cry. His eyes are closed because his eyes have not fully developed. He needs as much dark and as much quiet as possible. He's completely swaddled and covered because his body lacks the fat to produce heat and warmth.

Infection is a huge risk for Lucas because he will be less he will be less likely than a full-term baby to fight them off. I was so nervous today that I washed my hands AND sanitized them, and I didn't even get to touch him or see him beyond the glass case he was in... it's scary!

For more information on complications that happen with micro-preemies, I've found these websites very helpful (including the hospital that Lucas is residing):

http://preemies.about.com/od/preemiehealthproblems/f/veryprematurebabies.htm
http://kidshealth.org/parent/growth/growing/preemies.html?tracking=P_RelatedArticle#
http://www.bestcare.org/mhsbase/mhs.cfm/SRC=SP/SRCN=serv_detail/GnavID=68/servid=390

So... what does this mean for us? It's so scary to know that Kristen's little one is stuck in a room virtually by himself (I mean, he has a lot of support, but we can't hold him and we're being asked not to see him). Kristen's too sick right now to be able to see him. So what do we do?

Well, we have some options. I explained to Kristen that I really want to be able to see him to take some pictures so I can keep everyone updated on here. She's going to see about getting me a special pass to visit him by myself if she or Brandon can't be there. I promise that as much as I can, I'll update. This way Brandon can focus on his family, and I'll focus on the rest of us who are worried and want to know details.

If you want to give items to the family, the Methodist Women's hospital has a list of acceptable items and unacceptable for the NICU:

http://www.bestcare.org/mhsbase/mhs.cfm/SRC=SP/SRCN=serv_detail/GnavID=68/servid=392

• No stuffed animals
• No plants or live flowers
• No balloons

Appropriate gifts include:

• Books
• Baby hats
• booties
• photo frames or albums
• music cds
• restaurant gift cards
• help with transportation or home care

Kristen and Brandon are going to be at the hospital for a long time, and since baby Lucas can't wear clothes because he's technically still growing and developing as though he were inside the womb, it's probably not advisable to bring clothes or diapers. The hospital has all the equipment they need for that.

I've been reading a lot about what is awesome to provide for the parents of  a NICU baby. Kristen and Brandon will benefit from your well wishes, but they'll be making frequent trips here from home (which is a considerable distance - 22 minutes each way; about 14 miles each way). So, gas cards and restaurant cards would be great if you want to get them something.

If baby Lucas pulls through and he improves and grows, we will have a baby shower for him. Right now, the first 24 hours, the first week, the first month is critical in his development. We really just need to wait and see.

Thank you again so much for your well-wishes of support, for your prayers, and for your kindness. Please email me if you have any questions: jamie.demson@gmail.com

I will do my best to keep you updated.

Baby's here!

I've been hearing that a lot of people are following this blog. Thank you so much! Kristen and Brandon are very appreciative of your thoughts and concerns.

I talked to Kristen, and I wanted to wait until I had a lot of information before posting. So, here it is:

Lucas Matthew Sharp was born at 9:03 a.m. this morning by cesarian. He weighs approximately 1 pound, 1 ounce, and I don't know how long he is, but Brandon and I estimated he is a little longer than one man's hand (as he has a picture of the baby being held up by the doctor, which I won't post because it's bloody).

I was able to visit the NICU today and see him. It's very dark because he needs to be protected so he can grow, but he has a whole room to himself. He's sooo tiny, but his color is really good. The nurse said that he had some complications getting the tubes in, but they're in now and he's stable. He's a pocket-size little piece of adorable if you ask me.

Kristen is asking that only immediate family visit her at the hospital. She's very sore and needs a lot of rest. Plus, it's probably very stressful knowing that she won't be able to see her baby (due to having just had major surgery) outside of seeing pictures. We won't be able to hold him for a while either. She does appreciate your warm thoughts and prayers.

If you want me to tell her anything, comment on this post, and I'll make sure to get the message to her.  You can also add me on Facebook: Jamie Demson.

Here are some pictures of Lucas (and Lucas accessories) from today.

Right after he was born.

It's dark, but he's in his isolette now. You can see his fingers.

Much clearer than the first picture. The goop in his eyes is to keep them closed so they can develop.

Diane's cellphone on top of one of his diapers. The diaper fits into her hand, and it's actually too big on him!

And we wait...

Happy Thanksgiving, everyone!

Everyone is hoping that the longer we wait, the better chance little Lucas has to develop and be stronger when he is born.

This morning Kristen felt sick, and the doctors upped the amount of blood pressure medication she is on. Her body isn't reacting positively - her blood pressure hasn't gotten worse, but it hasn't gone down either. They also cautioned her about the number of visitors she's been receiving because the act of talking and having people around doesn't help her blood pressure.

She's had a headache all day.

We're not sure when the baby is going to come, but we have a feeling it will be tomorrow (last night the neonatologist said it will be tomorrow anyway). Kristen's kidneys have been tested and she has another test to go to see if it's time for the baby to come out. The test will probably be tomorrow at 7 a.m. and then they'll make their decision. We predict she will have the baby tomorrow morning or afternoon.

While we wait, I've been reading about premature birth. A baby like Lucas (last Wednesday he was 456 grams and he needs to be 500) who is born before 29 weeks is not just a preemie, but a micro preemie. He will have a breathing tube when he's born, and he'll be in an isolette for the next few months.

I also read about the March of Dimes, an organization that works to raise awareness about premature birth and to help mothers who deliver early. I found a couple websites with personal stories about babies like Lucas, and I found a cool website where this woman makes clothes specifically for NICU babies. I'll post the links below.

http://www.marchofdimes.com/
http://www.perfectlypreemie.com/catalog/

So, we begin...

Meet baby Lucas.
He is my sister's little baby boy, who has not yet been born, but he's in a precarious situation.

My sister is currently in the hospital after carrying him for 25 weeks. It started with a coincidental dentist appointment, a random "let's take our blood pressure" moment in the grocery store, and a follow-up appointment with her doctor.
My sister has preeclampsia, and although friends and family are all trying to comfort her with stories about how they've had pre-mature babies, or they've had preeclampsia, we both know that each baby is different. So we're going to focus all our attention on this little guy and pray and pray that he does okay and that he has a lot of fight in him.

We're thinking that Kristen is going to deliver on Friday, which puts her at 25 weeks. Then, Baby Boy will be spending some time in the NICU.

The more I write, the more therapeutic this feels, so I'm hoping to be updating this blog every step of the way.

If' you're reading this, your prayers are appreciated!