Lots of activity at the NICU on Tuesday ... When we arrived Lucian was being extubated which was amazing and very unexpected news. So they were both breathing on their own with some assistance. Emma-Sky was being fed for the first time through the feeding tube - they gave her formula which did not make us happy at all since there's plenty of breastmilk stored there and we don't want them having formula at all. Emma was also getting a PICC line put in at the time Lucian was being extubated so we really couldn't see either of them for awhile. We figured we could talk with someone from the Chapel while we had to wait. We wanted to have them baptized while they're there since they will be there until almost there due date. (I had 4th of July in mind as a date that might be realistic for them to come home, Adam wants them home for his birthday - June 22nd.. The sooner the better of course. ;) Sister Therese came to talk to us. She was so very sweet and has been with St. Patrick's parish for 19 years, which is where I went to school and made my Communion and Confirmation. She informed us that Baptism is only done in critical situations but that she would bless them and she prays each day for pregnant women and the babies in the NICU.
Other good news - that little baby we were so worried about was there next to Lucian which was such a relief and really shows what they can do there. I pumped at the hospital today and the mom of that little baby was there. We chatted a bit - she had a boy and named him Max. They moved him, he's not next to Lucian anymore but she knew who our babies were. We congratulated each other and said we'd probably be seeing each other quite a bit in the coming months. She was due in June and Max weights 2 pounds 11 ounces. I was due July 20th.
Today when we got there Lucian was intubated again. He was extubated for a few hours but kept desaturating and they thought it best to re-intubate him. He was desaturating while we were there too but we have to know that this will happen - we'd just really prefer it didn't. They were both getting blood as well. They are not able to produce enough blood to compensate for all the blood drawn from them to check to see how they're doing and so they need "a boost" every now and again. Emma was doing well and being fed formula AGAIN. We were really unhappy about this and talked to the doctor and social worker to let them know this is absolutely unacceptable. So now they both have signs taped onto their incubators saying "breastmilk only - plenty in fridge/freezer". : /
Since Emma's not intubated anymore we heard her cry for the first time since she was born and there could not be a sweeter sound in the whole world. It really almost brought me to tears. Lucian started being fed breastmilk today for the first time too.
Keep your fingers crossed that tomorrow they are both getting breast milk because if we see formula again it's not going to be pretty. We also inquired about having them kept right next to each other, I feel bad that they're seperated and would love to be with both of them at the same time instead of having to leave one to be with the other. It seems to me that they're afraid to have them next to each other because they may confuse who gets what or something and having them seperated makes it easier to distinguish I guess. I feel like if that's the issue stop calling them by last name, A and B and just use their first names or I don't know, figure it out! So we'll see what happens with that.
We're still hoping the flap that should be closed on Lucian's heart closes on it's own. We talked to the doctor about it today and asked him to look over the echocardiograms to see what he thinks. We'll have to follow up with him tomorrow.
Tomorrow I am also having my staples taken out and have to have my blood checked. I was really tired today, lightheaded, short of breath and seeing spots at times - all things they kept asking me about when I was in the hospital but I never had. So that concerns us a bit.
I am taking my iron, vitamin, etc. thanks to Adam who makes sure I take everything I need to take every day. He's also on top of making sure we have everything we need before we go out - for example today we needed all the parts necessary for me to pump at the hospital and so he sterilized them and packed them into a bag. Basically all I have to think about is getting ready and having the bracelet that gets us into the NICU. He takes care of everything and I can just get into the car and look forward to seeing the babies. I may have mentioned how lucky I am but it could always be repeated. ;)
I also can't stress enough how much it means to us that our friends and family are reading the blog and leaving comments and clicking those ads. ;) Love you all!
Other good news - that little baby we were so worried about was there next to Lucian which was such a relief and really shows what they can do there. I pumped at the hospital today and the mom of that little baby was there. We chatted a bit - she had a boy and named him Max. They moved him, he's not next to Lucian anymore but she knew who our babies were. We congratulated each other and said we'd probably be seeing each other quite a bit in the coming months. She was due in June and Max weights 2 pounds 11 ounces. I was due July 20th.
Today when we got there Lucian was intubated again. He was extubated for a few hours but kept desaturating and they thought it best to re-intubate him. He was desaturating while we were there too but we have to know that this will happen - we'd just really prefer it didn't. They were both getting blood as well. They are not able to produce enough blood to compensate for all the blood drawn from them to check to see how they're doing and so they need "a boost" every now and again. Emma was doing well and being fed formula AGAIN. We were really unhappy about this and talked to the doctor and social worker to let them know this is absolutely unacceptable. So now they both have signs taped onto their incubators saying "breastmilk only - plenty in fridge/freezer". : /
Since Emma's not intubated anymore we heard her cry for the first time since she was born and there could not be a sweeter sound in the whole world. It really almost brought me to tears. Lucian started being fed breastmilk today for the first time too.
Keep your fingers crossed that tomorrow they are both getting breast milk because if we see formula again it's not going to be pretty. We also inquired about having them kept right next to each other, I feel bad that they're seperated and would love to be with both of them at the same time instead of having to leave one to be with the other. It seems to me that they're afraid to have them next to each other because they may confuse who gets what or something and having them seperated makes it easier to distinguish I guess. I feel like if that's the issue stop calling them by last name, A and B and just use their first names or I don't know, figure it out! So we'll see what happens with that.
We're still hoping the flap that should be closed on Lucian's heart closes on it's own. We talked to the doctor about it today and asked him to look over the echocardiograms to see what he thinks. We'll have to follow up with him tomorrow.
Tomorrow I am also having my staples taken out and have to have my blood checked. I was really tired today, lightheaded, short of breath and seeing spots at times - all things they kept asking me about when I was in the hospital but I never had. So that concerns us a bit.
I am taking my iron, vitamin, etc. thanks to Adam who makes sure I take everything I need to take every day. He's also on top of making sure we have everything we need before we go out - for example today we needed all the parts necessary for me to pump at the hospital and so he sterilized them and packed them into a bag. Basically all I have to think about is getting ready and having the bracelet that gets us into the NICU. He takes care of everything and I can just get into the car and look forward to seeing the babies. I may have mentioned how lucky I am but it could always be repeated. ;)
I also can't stress enough how much it means to us that our friends and family are reading the blog and leaving comments and clicking those ads. ;) Love you all!
Jane and Adam, as everyone has already said, you are in all of our thoughts and prayers. Since you cannot have the babies baptized yet, I'll make sure I get some more nuns praying for your two beautiful children. The two of you are the epitome of strength and love and Emma-Sky and Lucian are blessed to have you as parents.
ReplyDeleteGod Bless,
Terri
I'm glad the docs and social worker are listening to your concerns. The first few days can be fraught with so much anxiety. Let's hope the babies can both have breast milk ASAP.
ReplyDeleteJoe, Joseph and I returned to NY on Wednesday night. We are reading the blog and updates. Get some rest, mom.
(Also, it's striking how much you look like Dawn in the accompanying photo. Even the tilt to your head recalls her aspect. I had to look a few times to be sure. Then the hospital bracelet helped seal the deal.)
ReplyDelete