Sunday

Natalie continues to need higher levels of oxygenation and vent support. They did find an infection in her blood cultures so she is on an antibiotic. I was hopeful that her recent set backs where caused by the infection and we would see an improvement with the antibiotics but so far that has not been the case.

When we arrived at the hospital Friday night Natalie had a surprise waiting for us-s card with her hand and foot prints. So sweet! Steve also held her for the first time and of course loved every minute of it despite his initial nervousness.

I met Natalie's new neonatologist yesterday. She will be on a 4 week rotation with a 5 day break. I am hoping she has some new insights into Natalie's care.

I am struggling with the stress of all this and trying my best to focus on loving Natalie and not worrying about her numbers. It is so hard.

Drive-by Update

I meant to update when I came home last night but I fell asleep while tucking Annie in and then was awake long enough to pump and go back to bed.

Natalie is having a better day today. Yesterday morning was rough but by late afternoon she turned the corner. She had extubated herself again Wednesday and they did another quick attempt on C-PAP. It took a lot out of her and it seems her lungs never fully reinflated. They adjusted some vent settings, nothing happened so they adjusted some more and she finally responded. It seemed like a simple solution to be and I was frustrated that it took them so long to try it.

We are really hoping that they give her some time before trying C-PAP again. Each failed attempt causes her to lose ground and she just can't afford to keep going through that stress. I asked yesterday about using a mask rather than prongs for C-PAP but our hospital does not use masks. I am not sure if they would be willing to order one to try on her or if their equipment is even compatible. It can be hard to get a good seal using a mask and babies tend to develop pressure sores from them. Like everything else in the NICU nothing comes without drawbacks.

She is now sedated so she can recuperate. Her feedings have been stopped and started a lot this week but right now they are back on. They increased the amount of high calorie formula she's getting to try to boost her calories again.

I am off to spend the day with Steve, Annie and Natalie as we celebrate our 5th anniversary. I am desperate for Natalie to give us a nice day of rest and recovery as a gift.

Thursday

Natalie has had some ups and downs this week. Today is starting out as another down day. Her O2 requirements are back up at 100% and they don't know why. She extubated herself yesterday and they did a quick try on C-PAP. It only lasted 3 hours. She really fights having the prongs in her nose and if there is not a good seal the pressure is lost and it won't work.

I am feeling lost and frustrated. I do not understand why her O2 requirements have been climbing so much lately and they don't seem to have good answers for us. Please pray hard for Natalie. We need every bit of help we can get.

Tuesday and some sighs of relief...

I just got off the phone with Natalie's nurse. After that happened all yesterday it took everything I had to make the call. I was so afraid of what I would hear.

Today so far is looking much better than yesterday. Her oxygen requirements have been in the 30-50's compared to yesterday's 80's to 100%.

They were not able to pinpoint a cause for her increased difficulties. The poor baby had 4 chest X-rays yesterday among other tests. They did feel her right lung had collapsed a little but that it was not enough to be the entire problem. Her lungs actually looked less wet than they had been so that was not the entire problem either. The neonatologist felt it might be a rebound reaction from coming off the steroids. We did agree to do a longer course of steroids with a very slow weaning period of 21 days.

They changed her ET tube (breathing tube) to a larger size this morning. It is possible that she had outgrown the tube and had an air leak.

So, her vent settings are the highest they have been in a long time, but at least her oxygen requirements have come down from yesterday.

They had discontinued her feeds yesterday to give her a break and moved all her meds from oral doses back to IV meds. They are now in the process of moving everything back to oral (well, by oral they mean the tube that runs from her nose into her intestine). So, that is great progress.

The other big news today is she finally had her eye exam and her eyes look mature with no issues. SO nice to have one less thing to worry about.

Thank you all for your support yesterday. Days like that really test my limits and it is comforting to know there are people thinking of her and praying hard. I will update later if there is anymore news.

GO steroids!!! I hope they do all they can do and we see some decreased vent settings soon (although right now I will be patient and not too greedy. Today is already more than I thought we would get).

Monday

Please keep Natalie close in your hearts and prayers. Her oxygen requirements have been going up and they don't know why. They had hoped to try her on C-PAP again today but things have gotten worse instead of better. They have made some adjustments to her meds and vent settings so hopefully she will be requiring less oxygen support soon.

Update

Natalie had some struggles today on C-PAP and had to be reintubated and put back on the ventilator. They expect her to be on low settings. As much as I knew this was a possibility it is still so hard to take a step back. I am trying to see this as time for her to rest and grow so next time it will be for keeps.

One Month Old and....Extubated!!!

Wednesday evening I was able to hold Natalie despite her being on the vent. It was incredible. She tolerated it for over an hour and slept peacefully the entire time. It is a bit unusual to hold your baby with vent tubes taped to your arm and an infusion pump filled with breast milk on your lap. At the same time it felt like the most natural thing in the world. I spent the first ten minutes crying at the relief of finally having her in my arms.




When the doctor stopped by he gave us a good report and felt she was responding well to the steroids. He predicted she would be off the vent by Thursday evening but neither of us could quite get our hopes up.

Yesterday I called around 4:30 and received a glowing report from her nurse. Natalie had gone down on her vent pressures twice in the morning and tolerated the changes well. Her afternoon blood gas was "too good" so they would have to make another change. When we arrived at the hospital I walked around to check her new settings and at the top of the screen I saw the word "CPAP." I nearly hit the floor.




Five minutes after I had hung up with the nurse Natalie decided for herself that she was done with the vent and coughed her tube out. The doctors came over, said "she read our minds" and put her on C-PAP. She has been tolerating it so far but clearly finds the prongs in her nose to be very uncomfortable (the nurses say all babies do). The next 3-5 days will tell us ff she is truly ready to be off the vent and we understand that sometimes it takes a few attempts to really move on. At the same time nothing last night could dampen the joy of watching our baby breath and hearing her cry. Simply amazing.

Now.....here's Natalie with her new breathing gear!!!









Our first glimpse at her entire face-the C-PAP prongs were out for a nebulizer treatment...