Cpap day

Steroids about to start. CPAP at 3:00! Thank you for your prayers thus far. Please pray pray pray that her lungs are strong enough to withstand CPAP and pray that she does not have to be reintubated. Please pray that she stays infection free as well! Thank you so much!

Big girl crib!

Molly's 4:00 blood gas showed CO2 of 62. Good enough to wean one setting on the ventilator. We didn't get to talk to the doctor again after the gas and it was just about doctor changeover time. So, my guess is we will get another gas tonight and hopefully try for Cpap in the morning. Don't stop the prayers though! We have another gas tonight. Pray for more CO2 less than 60 and good a pH level. Please! And thank you everyone for all the thoughts and prayers so far!

Miss Molly moved into a big girl crib today thanks to her loving nurse Diane!

02/27/14 part deux

Okay, today is deja vu. The same thing that happened yesterday is happening today. Her noon blood gas was ick. CO2 was 70. No changes to the vent. Another blood gas 4:00. Here's praying for a stellar gas at 4:00! We need this!

Occupational therapy!

She loves sitting up and tracked her wubbanub (thank you jennifer!) very well. Once she got in the seat, she was trying her hardest to find me! She did so good today. It wore her out and she is napping now!

5 months old

I can't believe Molly is 5 months old today. For her 5 month birthday, she just may get to try Cpap. Her blood gas this morning was good! Your prayers are definitely working. We need them some more though! Next gas is at noon. If that one is good, they will give her a short 2 or 3 dose course of steroids to alleviate inflammation in her throat. Get another blood gas this afternoon, and if all goes well, try Cpap either tonight or tomorrow. The pulmonologist came by this morning and said her lungs on xray looked beautiful. She sounded good, and he thought she was doing wonderfully! So, specific prayer requests for our little munchkin: please pray for another good blood.gas at noon with CO2 less than 60. That is a big one, so pray like you've never prayed before! Also, please pray that Molly stays infection free, this is absolutely imperative.

I will update after the noon gas with the results. In the meantime, miss Molly is going to get occupational therapy, and they are going to try her out in a bumbo seat! Pictures to follow!

Blood gases for everyone

Isn't it strange how your life can be ruled by a heel stick? Molly's 4:00 blood gas showed CO2 levels of 56, which is superb! Her oxygen requirement was a little high at 57%, so Dr. Lucena did not make any change to the vent. Another blood gas in the morning. Please say a little prayer that her morning blood gas will be superb as well with CO2 levels less than 60! Thank you!

02/26/14 part 2

Molly's noon blood gas was a bust. CO2 was 70. So, not what we wanted. But, no changes were made on the vent. So, no going forward, but not going back either. Next blood gas at 4:00. Please say a little prayer right now that her CO2 level at 4:00 will be less than 60!  Molly says, please and thank you!

02/26/14

So....Dr. Lucena is the day doctor this week. He is the director of neonatology. Tim and I had a meeting to discuss the possibility of a trach. While it is definitely still on the table, he still wants to give Molly a chance at extubation and move her to CPAP. Today might be that day. She has a blood gas at noon. That gas will decide whether or not we move her over to CPAP. So, I have some specific prayer requests. Please ask all of your friends to say a few prayers for Molly. Please pray that the CO2 at her noon gas is less than 60. This will determine whether or not the vent can be weaned to CPAP settings. Please pray that Molly can successfully be extubated and moved to CPAP. Please pray that Molly's lungs are strong enough to stay on CPAP. If she can stay on Cpap for 24 hours, she has the best chance to stay on it and not have to be reintubated. Please pray all of these things for our sweet Molly. I will update after the noon gas to let everyone know the outcome. Thank you to everyone!

02/22/14

I apologize for being quiet lately. It has been a rough week for us. I just want to quickly say that I asked one of the doctors what our plan is now that Molly has had her surgery. Because of Molly's chronic lung disease, in order for her to come home, she will need a tracheostomy. With that comes a g-tube.  A g-tube is a feeding tube. Once she is up to full feeds we will look into these surgeries. That should be in a couple of weeks. I hate that she has to go through any of this. She is such an innocent and sweet baby girl. The sweetest baby girl. But, these things are not permanent. She will have the trach for 2 years. This will give her lungs a chance to heal. We have a long road ahead of us. Please pray for all three of us.

Day 139 and patience

I need more patience. We are 72 hours into the steroids and haven't made much headway. Dr. Jain was very aggressive in weaning on Monday night and by the next blood gas yesterday morning, we had to backtrack. The next 2 gases were not good enough to wean. So, we have our next gas at 8:00 this morning. Little Mo is still on the oscillator. Please say a little prayer that she will have a great and very weanable blood gas. We have to make the most of these steroids. Once we get on the conventional vent, she can have xopenex and pulmicort treatments. I think these really helped last time. I really believe we were on the verge of CPAP before surgery. We really need continuous stellar blood gases and we have to get to the conventional vent soon. Please also say a little prayer for me that I will have patience!

In other news, Molly had a 200cc (I think that's the measurement) diaper last night. That is HUGE!  Hopefully that pulled more fluid off of her lungs. She weighed in at 9 lbs 9 oz last night. So, pretty much no more edema! She has been doing okay with the smaller drip of fentanyl. Yesterday morning she did have to get a bolus of fentanyl and one of versed though. She just wouldn't calm down. Her heart rate was up and she was just agitated. I thought it was a combination of pain, withdrawals, and roid rage. At any rate, she did better last night. Other than that, not much else to report.

Tim may finally have to go back to work next week. He hasn't worked since we came to Plano. We have been making it so far. But we need that income. I know he will miss seeing Molly as much. But, hopefully we will be home soon.

I will leave you with a few pictures. One is from the day M was born. The other is from earlier this week.

Day 137

The peanut had a good night last night and is having a good day so far. The bumex she got yesterday really did the trick. Mo (I am trying to come up with a cute little nickname for the munchkin) lost a pound of fluid overnight. She weighed in at 9 pounds 14 ounces. She tolerated her touch time like a champ this morning. She did not desat once. She also nicely handled the lower vent settings that were made overnight. They will get another blood gas at noon. I am confident that it will be great as well! Not much else to report. I will leave you with a cute little pic of MoMo.

3 days post-surgery

So, we are 72 hours out from surgery. Molly is doing rather well. She does unfortunately have an excess of 2 pounds of fluid on her little body. She weighed in at 10 lbs 14 oz last night. The settings on the vent are coming down, which is fantastic! Today is Dr. Jain's last day as the day doc, so before he is done, we all came up with the next plan of action. He wrote orders for 2 doses of bumex. It is a stronger diuretic and it's what he used after she swelled up after her first surgery. He will follow the bumex with an increased dosage of lasix. Then, we are starting our next 14-day round of steroids. I think this might be the push we need to move to CPAP. Keep your fingers crossed and say a little prayer! He is also mixing up her pain management a bit. She is getting lots of boluses of versed and fentanyl along with the regular drip of fentanyl. So, he has decided to add a drip of versed, deccrease the fentanyl drip a little, and decrease the boluses. So, lots of changes in the world of Molly! But I think they are just what we need to get this party started! 

Here are a few pictures of M's wicked wound!

howdy folks

I have been wanting to start a blog forever. What better time than now! Caringbridge has been great, but I cannot upload pictures from my phone nor can I upload videos. And let me tell you, between my phone and Tim's, we have tons of both. I also read A LOT of other blogs, mainly about other preemies and medically fragile babies. They have helped me learn a lot and it's comforting to read about other people who have similar stories to ours. I hope that one day someone else in our situation can find comfort in my words. I will transition from Caringbridge to here over the next couple of days. I will also post on facebook a link to here. 

For those who don't know what a flibbertyjibbet is, let me explain. Have you ever seen the movie 'Joe versus the volcano'? Meg Ryan and Tom Hanks are in it. It's a quirky movie, right up my alley. Anyway, Meg Ryan has a line in the movie calling herself a flibbertyjibbet (or flibbertygibbet). When I made soap, I called my little soap making business Flibbertyjibbet. If you look up the meaning of the word, it fits me pretty well. It means a whimsical lady. 

Anywho, enough of that. I will end this post with pictures of my sweet baby girl before and after surgery. Sorry if you have a weak stomach, this is reality folks. I promise to add sweet pictures later!