HE’S HERE—UPDATE When should I ask my mom to come? And other musings on my stress.

[East Coast Sue]

I’m praying for you and your beautiful baby boy 

[KSera]

34 minutes ago, Condessa said:

My blood pressure jumped up this morning, with nausea, headache, and flashing lights, so they gave me labetalol and started a magnesium IV.  It's stayed in an okay range since then.  I'm just kind of headachey and gross from the magnesium.  Ephraim is out of the NICU and back with me.  His breathing is looking good and he is doing pretty well with starting to breastfeed.

Ugh on the magnesium, but so glad Ephraim is back with you!  I hope the meds get your bp under nice control.

[Condessa]

Once he was out of the NICU and off all the monitors, we were able to wash his hair.

He has my cowlick.

Edited November 16, 2021 by Condessa

[melmichigan]

Congratulations!  He is adorable!

[TexasProud]

Congratulations!

[ktgrok]

Tell him all his hive aunties love him already! How can we not - look at that face!

I hate that you are still having issues, but am glad they are taking good care of you. 

[Lilaclady]

Congratulations!!!! Blessings on you both. 

[kbutton]

5 hours ago, Condessa said:

My blood pressure jumped up this morning, with nausea, headache, and flashing lights, so they gave me labetalol and started a magnesium IV.  It's stayed in an okay range since then.  I'm just kind of headachey and gross from the magnesium.  Ephraim is out of the NICU and back with me.  His breathing is looking good and he is doing pretty well with starting to breastfeed.

I am sorry that you're having to deal with BP issues, but I am glad it did this while you're still in the hospital! 

[Eos]

Thinking of you and your sweet baby @Condessaand wondering how you are doing.

[Condessa]

4 hours ago, Eos said:

Thinking of you and your sweet baby @Condessaand wondering how you are doing.

Very, very tired, but doing alright.  A check-in with the pediatrician on Friday showed that Ephraim had dropped a lot of weight and was down to 6 lbs. 7 oz., and he was also jaundiced.  So I went to feeding him every three hours or sooner, and supplementing with pumped milk by syringe after breastfeeding, and we got a bili blanket to help with the jaundice.  He has gained back 6 oz. since then and the jaundice is getting better.  Between nursing and pumping I am not getting much time for sleep.  My blood pressure is still high but under control with medication.  All in all, while I am nervous about managing once my mom goes home after this week, we are doing well.

[WildflowerMom]

My word, he is so snuggly.  🤗

praying he recovers quickly and that you get some much needed rest, C.  

[*****]

Thank you for sharing pictures of your adorable little one, what a bright sight to see this morning!  Sending good thoughts for your days...

[maize]

Thank you for sharing the pictures, he is so sweet.

I hope your blood pressure stays stable or, better yet, drops and then stabilizes, and that you get some rest soon.

[Condessa]

We're still struggling with weight gain here.  I took Ephraim in for a weight check on Friday, and he had dropped three ounces of what he had gained back again.  I think part of the issue is that I started turning off my alarm in my sleep.  I have tried hiding it from myself under things across the room, and I am still finding it and turning it off without waking up enough to remember doing so.  I wake up when the baby makes a noise, but he's going 4 or 5 hours between waking at night.  (Which would be wonderful, if he weren't dropping weight!)

The other part is that we got some bad news regarding Ri on Wednesday, and are waiting for them to get him in for moved-up MRIs to check for new tumor growth, and the pediatrician thinks that the calorie content of my milk is probably down from stress.  So on Friday they had me start adding formula to the pumped milk I'm supplementing with to get more calories into the baby.  But yesterday we had his two-week checkup, and he had gained almost nothing over the weekend.  He's still down almost 14 oz from his birth weight.

So at this point I'm waking him up to try to feed him every couple of hours during the day, and limiting nursing time to 10 minutes a side so he's not expending too much energy suckling inefficiently, and then he's taking somewhere between about 15 to 35 mL of fortified milk from a syringe afterwards.  He's such a snuggly, content baby.  He doesn't act like he's hungry.  He sleeps most of the time, but he's not just lethargic all the time.  He does have some alert periods.

[WildflowerMom]

Condessa, I am continuing to pray for your family.   Please keep us updated as you're able.   Many, many gentle hugs, mama.  💛💛💛

[freesia]

(((Hugs))) That's a lot.  I'm praying here for you.

[mommyoffive]

Sending out lots of prayers for Ri.

Thinking of Ephriam and hoping all the work you are doing leads to some gaining soon. 

[Eos]

2 hours ago, Condessa said:

The other part is that we got some bad news regarding Ri on Wednesday, and are waiting for them to get him in for moved-up MRIs to check for new tumor growth, and the pediatrician thinks that the calorie content of my milk is probably down from stress.

I'm so sorry to hear this.  I know it's probably the last thing you feel like doing, but I hope you're able to drink and eat a lot to compensate.  Good for you for setting your alarm and doing the every-two-hours feeding.  

[Drama Llama]

I am so sorry about the bad news.  I hope things look better after the MRI.

Formula sounds like a great plan.  Could you add a few all formula feedings at night so your DH could do some and you could get the sleep your body is clearly telling you it needs? 

[Condessa]

46 minutes ago, Baseballandhockey said:

I am so sorry about the bad news.  I hope things look better after the MRI.

Formula sounds like a great plan.  Could you add a few all formula feedings at night so your DH could do some and you could get the sleep your body is clearly telling you it needs? 

My dh is an extremely heavy sleeper.  It is unlikely that he could set an alarm that would wake him up without me waking up first.  

[Drama Llama]

Any updates?  I hope things are looking better!  Praying for you guys.

[Condessa]

On 12/22/2021 at 4:16 PM, Baseballandhockey said:

Any updates?  I hope things are looking better!  Praying for you guys.

Things are going very well.  Ri's MRIs came back looking good.  We don't know the cause of his sensation loss in his legs, but it wasn't tumor growth, and he has regained about half of the loss, so it will hopefully continue to come back.  Chemo drugs can cause peripheral nerve issues, but that is not common with the trial drug he is on. 

Ephraim is gaining well with lots of supplementing with pumped milk (no longer fortified), but he is also making gradual progress on getting more through nursing.  And Ri has also finally gained some weight, and is 1.5 lbs above his pre-surgery weight from 14 months ago.  They are talking about spacing out his oncology visits more in a few months, as he has remained stable for 9 months on this medication without severe side effects. 

We are all excited for the holiday, and baby is going 5 to 6 hours between feedings during the night.  I am feeling great, as the insomnia and nightmares I have struggled with since Ri's diagnosis are gone.  Four hours of deep, restful sleep between feedings feels amazing after going on little or very broken sleep for a year.

I hope you are doing well.  Merry Christmas!

[maize]

Merry Christmas to your family. I'm glad to read the positive updates.

I hope your Christmas is a time of peace and joy in being together.