Wed. Oct. 31st

Happy Halloween. Luke is still doing well. He's really alert when he's awake. Looking around and rooting a lot too, loving his pacifier. Today I got to start nursing him again and he did very well, best he's done ever. He is up to a full feed today with his feeding tube. His doctors would like to keep his IV antibiotics going through Friday, but he is still having problems with his IV's. Hopefully his last few spots will last, the only other option is to put one in his neck and that doesn't sound like such a nice thing. We hate seeing him poked so much.
Overall he looks good and is doing well. He had on an orange little pumpkin outfit today, it's one that Bryan wore, it's a little big, but very cute. His nurse made him a paper pumpkin and put his picture in the middle, very sweet.
Melinda

Tues. Oct. 30th

Luke will be up to a full feed by tomorrow since he's tolerating more food with ease. This will also allow them to put some of his IV needs into his food and will help eliminate the IV's by Friday. They are running out of IV spots on him and today tried putting a PIC line in to avoid having more IV's, but after 2 attempts it wouldn't work, so we just pray his IV now can hold up. Luke looks good and his tummy looks good too, not so distended like it had been for so long. It is very nice to see him looking and feeling better.
Melinda

Mon. Oct. 29th

Luke is doing better today. In fact I got to hold him for a long time today, which was wonderful after not being able to for a few days. He is breathing well and they increased his feeds a little more today and then a little more tonight. They did find his C-reactive protein elevated slightly which means that he could have developed some sort of infection, but it's nothing serious and it could even be viral. They have had problems with his IV's, which is normal for babies to have tricky veins to work with, so this evening they had to put an IV in his head, which as un-nerving as it sounds, it is actually normal for babies.
Here are his latest statistics:
6lbs. 9.5oz
18.6" long
We were glad to see that even with his set back he still had decent growth.
Melinda

Sun. Oct. 28th

Luke did fine through the night last night and had no fever. His lab work continues to show no signs of infection and his x-rays look better today. They were able to take him off the ventilator this morning and moved him to the high flow nasal cannula. He has been resting pretty comfortably. It is wonderful seeing him off the ventilator and looking better today. They did start some small feeds up today to see how his tummy will do and so far he's doing fine.
The only thing that they have been able to determine why this happened is due to the fluid build up on his lungs from not having the diuretic. He can't go home on diuretics, plus they are not good for him to stay on, so moving forward his doctors will work on a different plan on trying to move him off of them, right now though, it's clear he needs them.
On another note, Jeremy's mom went back to Sacramento today. She's the type of mom-in-law who is very handy around the house. She practically renovated our house. She also became Bryan's favorite playmate, but most importantly she helped create some consistency in our house for the last 10 days, something we haven't had in a long time, plus I enjoyed the late evening talks while I pumped. We all are missing her (especially me) and can't wait for her return.
They will take Luke's statistics tonight, so stay tuned.
Melinda

Sat. Oct. 27th

Luke is still on the ventilator today. They were thinking of moving him off the ventilator, but he started to run a fever. They will possibly take him off the ventilator tomorrow depending on how his night goes and that all his blood cultures they took yesterday still are showing no signs of infection. He is very uncomfortable on the ventilator and have sedated him a bit to relax him enough so he could rest well. In our opinion, feisty is a good sign. He also hasn't ran a fever the rest of the day.
They also moved him back to the intensive care side of the NICU this evening. This will allow him to have more skilled nurses while he gets through this. It's tough to see him back on the other side, but it's also good knowing he will have even more skilled care.
We continue to take things one day at a time.
Melinda

Friday Oct. 26th

Luke is showing us that he doesn't like change in a big way. Last night his breathing became too labored and his blood gas levels were elevated at a scary level. Unfortunately they had to put him on the ventilator to stabilize his breathing. They also needed to do another transfusion to help give him a boost to get through this. They started up the diuretics again to help take some of the moisture off his lungs that was adding to his difficulty in breathing. It's been a rough day, Luke doesn't like the ventilator and reacts to each time they need to suction him or move him or take his blood. He is a tad more stable this evening, but still is making us nervous. There is also no sign so far of any infection lurking about in him, thank goodness.
I didn't hesitate voicing my opinion to Luke's doctors today about what I had been seeing and they continued to push him anyway. Moving forward they will listen to us closer, which we do respect Luke's fine doctors immensely, but part of his care is also what the parents see going on and that can't be set aside.
I've been asked a lot today how we're holding up and I have to honestly say, it's tough, incredibly tough. Seeing an innocent baby struggle is hard, but seeing your own baby struggle is the hardest. It's each of our hearts laying in that little bed struggling along with his. We never fall short on hope though and we owe it to our faith that is keeping us glued together.
Luke needs those prayers that you all diligently provide. Jeremy and I can't thank you enough for them.
Melinda

Wed. Oct. 24th

Luke is pushing back a bit with some of the changes he has had recently, but overall doing okay. He's had more desat spells and is requiring a bit more oxygen, which is most likely going off the diuretics. We're hoping he can adjust to the change, so he won't need those anymore. Another wait and watch type of thing.
This evening Jeremy and I met with the Charge Nurse and the NICU Manager to see about getting continuity in Luke's nursing care. Luke has a primary day nurse and evening nurse, but since they work 12hr shifts they are typically there for no more than 3 days a week, which means the other 4 days can end up with nurses he's never had. When they don't know him it creates a little turmoil when they see some of the things Luke does, which are just the regular things he does. We have a good plan moving forward, so we'll see how it plays out.
Tomorrow Jeremy and I have a CPR class. The NICU asks all parents to take the class. If there are any scenarios that pop up while Luke is in the NICU, then we can practice before we go home. It's more of a just in case type of thing.
Thank you all again for those prayers. They are really helping!!
Melinda

Mon. Oct. 22nd

As promised I have Luke's latest statistics:
6lbs 2oz
18.5"

12 weeks old and 38 weeks gestationaly

Luke is having another good day. We switched from a continuous feed to a 2hr duration of feeding. Tomorrow we'll try a 1 1/2hr duration, just slowly working towards regular feeds. We're also back to working 2 bottle feeds a day and at the breast once a day, gradually increasing it. He has been able to pull out of the desat spells with less intervention and he's been having less of them too. His liver levels look better today too. He's also doing fine without the diuretics. All positives to report. He still has that big belly that we're keeping an eye on.
Melinda

Sunday Oct. 21st (Picture)

Here is a recent picture of Luke. Stay tuned for his latest statistics tomorrow.

Melinda

Sat. Oct. 20th

Luke is doing pretty good, still having less desat spells, which is good, which also means he's doing well without his diuretic. Both Jeremy and I got some good quality time in together with him, which isn't something we get to do too often together. He also has had pretty consistent weight gain this week, so fortifying his food with my hind milk is working.
It was a tough day yesterday in regards to Luke's neighbor Olivia. Despite her many ailments, she was scheduled to go home (her third trip) on Tuesday and I enjoyed sharing the excitement this week with her mother. Suddenly things took a change for the worse yesterday and they couldn't save her. Right next to me sheltered by the curtain, I could hear the pleading of her mother and then the sobbing by everyone involved. I sat there holding (or should I say clinging) to Luke praying that Olivia would make it. Olivia's numbers were on Luke's screen because his nurse was checking on her too, so I could see when the screen went dark. A very tough moment that has shaken me up. Please pray for Olivia's parents.
I will have Luke's latest statistics posted on Monday, so stay tuned.
Melinda

Thurs. Oct. 18th

Luke is doing fine today. They are trying him without his diuretics to see how he does and if he still needs them, then they will keep him on them and start to ween him off slowly. Apparently his diuretics change the sodium and potassium he needs, without the diuretics his sodium and potassium levels should go back to normal and he won't need any added to his diet.
They are attempting to ween him a bit on his oxygen flow level, but he started showing signs that he still needs a little extra flow to help his lungs. He is down on the amount of oxygen he needs, which is a good thing. They did do a blood check since they needed to check a few other levels in him and he is still producing his own blood cells fairly well, which is great.
He's just taking his time. We still dream of when he can come home.
Also, Luke's Grandmother Lynn came into town last night and got to see and hold Luke for the first time (a very special moment). She'll be here for the next 10 days. She's a great help!
Melinda

Tues. Oct. 16th (Picture)

This picture was taken when Luke was on vacation in Rome. Visiting our "Papa" was a treat on his visit. It's actually sponsored by Luke's wonderful Godfather David. What a fun photo!

Well your prayers are working, both of the tests Luke had yesterday came back with no issues or concerns. Since Luke has been gaining a little more consistently the last several days and he's been down on his oxygen we are feeling he is making a positive trend and we'll just wait and see how he continues. He's been having better awake time the last few days too and just looks a little better.

I am working on my milk supply trying to get more milk and also beefing it up with more fat. Apparently I am still producing milk for a preemie, but now that Luke is nearing full term gestationaly my milk fat is lagging behind. A more protein and healthy fat diet will help. Good thing I love avocados!!

I thought I would also share a few pluses and minuses to our NICU life. Pluses are the wonderful nurses that care for Luke. In particular Luke has a primary for day and night, these two nurses follow Luke all along until he goes home. They both do such a good job and I always feel better when they are there because they know Luke and they know Jeremy and I really well. It just makes it reassuring for both of us when these two nurses are there watching over our precious miracle.

A minus is not all babies do make it home. We just lost one yesterday morning that we got to know. Please pray for little Emma, she was born with a complicated birth defect and fought hard to be here, but just couldn't pull it off.

And a plus is seeing babies go home. The first baby Luke was next to in the NICU was a little girl named Riley, born at 30 weeks on July 1st at 18oz in weight because she wasn't growing in the womb, is going home tomorrow at just over 7lbs.

It's impossible to be sheltered from the sad things in the NICU, but we just try to focus on what a miracle our Luke is to us and stay positive.

Melinda

Mon. Oct. 15th

Luke had an Ultrasound and upper GI test today. Both tests went well and Luke tolerated them well. We will find out the results tomorrow. They decided to do the Ultrasound because his liver levels are still high (also why he's still on the yellow side). There are medications that they can start him on, but they wanted to check him out first with the ultrasound.

He did have his weekly statistics last night:
5lbs 11oz.
18.1" long

He's making progress.

Melinda

Saturday Oct. 13th (Picture)

No big changes for Luke. He has started to self-resolve a few of his Desat spells, but when he has a bigger one that he can't pull out of he needs pretty good assistance to pull out of it. Thank goodness for those good nurses.

Luke's tummy his still distended, it's soft, but still pretty big. We've all thought it would gradually go down and some days it does look better than others, but overall, it really hasn't changed. Because of this, on Monday the doctors want to do an upper GI test. It sounds kind of crazy after what he's already been through, but it's possible that a narrow passage could have developed since his surgery, sometimes caused by scar tissue. We'll start with the simple tests and go from there.

Overall, Luke looks content and rests comfortably. He isn't quite as 'bronze' or 'copper' colored, which is nice. He still has good awake time where he's calmly looking around and he does get agitated at the appropriate times, like when he's being messed with. We're holding him more often now and I manage his wires pretty easily now and just take him in and out of his bed as I like.
As always, we'll keep you posted and we'll have his latest statistics posted on Monday.
Melinda

P.S.

This picture was taken by my sister Melissa earlier this week.

Thurs. Oct. 11th

I got to spend a lot of time with Luke today and it was WONDERFUL! He had a great day. He had one big desat spell when I was there and the few others he had, he resolved on his own. Which is a sign that he's gaining a little strength. The doctors have decided that Luke is okay with me having dairy and have told me not to worry about cutting it out of my diet. Yippee, I can have ice cream again!!
They did start Luke on Zantac today for his reflux. They will see how he does on it.
Another thing that they are going to start doing is fortifying Luke's milk with the fatty part of my breast milk. This will add extra calories to his milk without introducing something foreign. They do this when a baby has a sensitive tummy and needs more calories, which is what Luke has and needs. They will suction off the fatty part of the milk that settles at the top and add it to his feed. The part they don't use can be frozen and used later on.
Part of being in the NICU is also being exposed to other babies and families that are going through a lot too. Some have major life changing/altering conditions. We've come to know a few of these babies and it's scary and nerve wracking knowing what they are dealing with, sometimes I feel thankful (that Luke is doing so well comparatively) and sometimes it breaks my heart. All I know is that each baby in the NICU needs our prayers. Which, I can't thank you enough for yours.
Melinda

Wed. Oct. 10th

Luke had a pretty good day today. He ate well with his daddy this morning from the bottle. I again couldn't be with him today, but I am feeling better and will be able to see him tomorrow (I can't wait!!!). Luke did get held today today by close friends and family, which is comforting to me.
The loom of Luke needing a blood transfusion is on hold. His doctor would like to see Luke continue to make cells on his own regardless how slow he is doing it. If Luke receives a transfusion it could signal his body that he has enough blood and doesn't need to produce more, causing him to make even slower progress. As of right now, it's on hold and they will re-check his blood count on Monday. He also will be meeting with his GI doctor in regards to his acid reflux. He will check and see if his reflux is bad enough to warrant medicine. Less reflux episodes could help reduce his desat spells, which would be better for Luke. It is typical that preemies have more reflux.
I am looking forward to seeing Luke tomorrow and holding him a lot!!
Melinda

Tues. Oct. 9th

Luke is doing well today. I couldn't visit him today because I am feeling like I am coming down with something. Hopefully it is nothing and I feel better tomorrow. He did get some great holding time in today from my sister Melissa and his Godmother Kathy. It's nice that other people can hold him, especially when I can't be there. The nurse did put the phone up to Luke's ear so I could tell him how much I love him.
Jeremy fed Luke this morning and he took a small amount. He's been more tired the last few days, mainly because he's anemic. He still is taking the iron supplement and he is reproducing cells, just not quite as fast as his body needs. We are looking at possibly another transfusion for him sometime soon. We are hoping we can work it out that he can use his daddy's blood again.
Luke also is continuing with those desat spells, which are partially because of his anemic state and also because of his reflux. They may start him on reflux meds. to see if it makes a difference. I have also stopped having dairy in my diet to see if that makes any changes for Luke too.
We appreciate all your prayers and support.
Melinda

Mon. Oct. 8th

Luke's latest weekly statistics:
17.72" Long
5lbs 9oz

No real changes for Luke today. He is still having desat (low oxygen saturation) spells, but they think as he gets bigger they will go away. He just needs more growth, which he's taking his time with. We're going to keep on with the same food for him (breast milk with added nutrition) for now. They did add a little iron recently since he is still anemic.

He had an eye exam today. He'll have another follow-up next week to make certain everything is okay.

Overall he looks good and he had some great awake time yesterday with some good nursing and he ate pretty well this a.m from the bottle with his daddy. He was pretty tired today having the eye exam.
Melinda

Sat. Oct. 6th

Luke is doing pretty good. He is down to 200 liters on his oxygen flow, which is great progress. Still the same feeds. On Monday they will try and introduce a different type of food, just a little bit in with his regular breast milk food to add extra nutrition. They've been doing this, but this new kind has more calories. We want him to plump up. We'll see how he does with it and if he tolerates it well, they will add more gradually. He seems to know when something new is being introduced and reacts to it, so we have to sneak it by him slowly.
Luke and I had some great cuddle time yesterday. He just loves laying on me, listening to my heartbeat. Afterwards he was awake for a little while and just stared at me as I talked to him. I also took Bryan up the other day with me and Bryan was very cute with him. He likes to poke a lot, but is very soft with him. He talks to him too and it's really cute.
Melinda

Thurs. Oct. 4th

Luke has been doing pretty good the last few days. We've decided to go to a continuous feed for him. This is helping his tummy not get as full, preventing it from pushing into his lungs, making it easier for him to breath, which has controlled his desats more. We're still working on his bottle and nursing feeds too, but the continuous feeds are helping him not work as hard with his breathing, helping him save energy for growth. This is also helping ween him down a bit on his oxygen, which is another step in the right direction. The continuous feeds also are good to help keep up a full feed for him, which with a full feed he can have his medications added to his food. This keeps him IV free, which of course is wonderful for him not having to be poked. As he gets a little more growth and strength, he'll be moved back to the full feeds every 3 hours.
Luke had a follow-up head Ultrasound yesterday and it looked good, there is nothing concerning, which is good news.
My apologies for not writing the last few days. I've been a little worn out, but back into the swing of things now.
Melinda

Mon. Oct. 1st

Luke had a great session of nursing today and his other 2 bottle feeds are doing good. Soon they will be adding another bottle feed. He still drops in his oxygen level (desats) when he is at a full feed, but typical with the amount of room he has between his lungs and a full tummy. He has had some reflux too, so we are keeping a close eye on that.

He had his weekly statistics last night:
5lbs 6oz.
He's just a tad over 17" long

I want to also share a very neat and inspiring blog written by Luke's Godfather called "The Joyful Mysteries According to Luke", you can check it out at: http://www.davidoforegon.blogspot.com/
I would like to also point out that he wrote a blog called "Evangelium Lux" shortly after Luke was born and you can also read that blog on his blog page.
Both are amazing reads and I think you will agree that David is not only faith inspiring, but an excellent writer. As Luke's proud parents, we found his writings hopeful, inspiring and a definite reminder of God's grace and love.
Melinda