T&P's please

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Lavender444's picture
Joined: 03/27/03
Posts: 1944
T&P's please

Hi Girls,

We're back from Mexico. I'll write about that later, but I wanted to ask for some thoughts and prayers for G's cousin. She went into the hospital the day before we left at 26 weeks pg with twin girls. They ended up having to deliver the babies the next day, on Friday. The girls were born at 1# 9oz and 1 lbs 2 oz. This morning Baby B passed away. this is such a heartbreaking loss for the entire family. They have another little girl who is almost 2 at home as well.

Please say some thoughts and prayers for their comfort and strength.

Joined: 06/10/07
Posts: 1692

I'm so very sorry, Amber. Definite thoughts and prayers for them and all of you. Can't even find the right words to type. :bighug:

Joined: 04/09/06
Posts: 1244

I am so very sorry. That is just heartbreaking. I am definitely saying prayers. Sad :bigarmhug:

Kayla1981's picture
Joined: 01/04/07
Posts: 1529

Prayers being said. How incredibly heartbreaking.

Cali26's picture
Joined: 02/01/07
Posts: 1040

OMG. I am heartbroken reading this. My thoughts and prayers are with your entire family. I'm so sorry.

mommyvolc's picture
Joined: 03/22/07
Posts: 1296

Oh Amber, I am so sorry. That is so sad. Prayers for you whole family, especially baby A and her parents and sister.
Nicole

a's girl's picture
Joined: 06/10/07
Posts: 1008

Oh my goodness! So sad!!!! I am so sorry!!!

alwayssmile's picture
Joined: 08/26/07
Posts: 14483

I'm so sorry to hear this. I can't imagine how devastated they are. Prayers being said. ((hugs))

AshnBill's picture
Joined: 11/06/06
Posts: 5333

Oh no, that is so heartbreaking. :bighug:

Lavender444's picture
Joined: 03/27/03
Posts: 1944

Thanks. It is very sad. I just feel so awful for them. Thankfully Baby A is doing well right now. She was able to come off the vent and was moved onto CPAP and has started to take a very small amount of breastmillk. So that is good. They were able to hold her for the first time yesterday.

How would you guys handle sending cards to the family? I want to honor both babies, but cannot think of a tactful way to do it. How do you celebrate the life of one, while mourning the loss of the other? And ideas?

mommyvolc's picture
Joined: 03/22/07
Posts: 1296

I would send them a card for each baby - but in the same envelope. I think that twins often end up with only one memory box, so I think its important to acknowledge them separately as well as together. I think a congratulations on the birth of you daughter card and a sympathy card is appropriate. When one of my bff's lost a baby, I bought a little engraveable star ornament and had the baby's initials and date inscribed in it. She put it in the nursery and now they hang it on their christmas tree. Its a little fairly discrete way of them acknowledging their lost child.

Nicole

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

After losing a baby, I agree an engraved ornament is very special. Every year at Christmas we can look at it and remember our son.

Joined: 04/09/06
Posts: 1244

I love the ornament idea. It is very sweet. You could also get them some type of tree that they can plant. Maybe a flowering tree to honor their memory of their little miracle. I also think you will need to send two cards.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

This stinks, you guys. I just can't seem to keep it together. I'm so devastated for them. I'm sad for the loss of Baby B, I'm sad for the future hurdles that are still yet to come for Baby A, I'm sad because this is bringing back how difficult Andrew's NICU stay was on me. My heart hurts. Sad

Tomorrow, I'm watching their other little girl while they spend the day at the hospital. I've already broke down with them on the phone, while they remained strong. I really hope I can hold it together tomorrow while they are here. I hope you don't mind me venting here so I can remain composed infront of them.

Joined: 06/10/07
Posts: 1692

Talk here anytime, Amber. That's what we are for. :bighug:

How is Baby A currently doing? I know a lot can change in one day and I don't want to make any assumptions.

I also like the ornament idea. I would probably get a sympathy card for the second baby and do the ornament or something similar. I would get a congratulations card for Baby A and also a thinking of you card for them. Maybe write to them in it and offer up some additional support as they remain in NICU and beyond. I don't know. Although they are twins I would acknowledge them both separately since they've had to say goodbye to one.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

The good news is Baby A is doing fantastic, for a 26 weeker. She at 1lbs 7 oz, which is 2 oz away from her birth weight. She was able to come off the vent and has been on CPAP for the last few days. They've started giving her very small amounts of breastmilk and she is tolerating that well. She is doing better than the doctors expectations.

When they dropped their older daughter off this morning, they said they got some of the autopsy reports back and Baby B's issues were all caused from the placenta not functioning properly. There were a lot of clots throughout the cord and placenta. THey have not looked at all her organs just yet, but they expect to find them all not functional and full of clots. They sent it to the best neonatal pathologist we have in hopes of fiiguring out what is causing the placenta issues (their older DD was born at 35 weeks with IUGR due to a faulty placenta as well). They would like to have a big family, so the hope is that they can find some sort of drug therapy that can help with future pregnancies .

I am just amazed at how well they are holding up. Their strength is just amazing.

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

I hesitate to recommend the tree/plant idea. When we lost our baby, we were send a plant from my work. We struggle to keep it alive, as if if we let it die we are failing all over again. I think cut flowers are better because nobody expects them to last forever.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

What do you guys think of a Mother's necklace? Something with all 3 girls names on them like this

Or maybe, like this. Something a little more discrete. So if she doesn't want to talk about it, it doesn't invoke as many questions.

CamelNoodle's picture
Joined: 07/28/04
Posts: 908

I love the first necklace. She may not want to talk about her lost child at first, but I think later she'll appreciate the opportunity to use this necklace as a conversation starter.

Kayla1981's picture
Joined: 01/04/07
Posts: 1529

I'm so bad with this sort of thing, I am glad others are more helpful. I just wanted to say that you can talk here anytime, you know that. It's so hard to hear of anyone loosing a child, especially when it hits close to home, for whatever reason. I'm also glad to hear that Baby A is doing well.

a's girl's picture
Joined: 06/10/07
Posts: 1008

I am so glad to hear that Baby A is doing well! So scary!! I love the necklace with all three names on it!

alwayssmile's picture
Joined: 08/26/07
Posts: 14483

Either necklace would be a wonderful gift. I love the name necklace I have with Aiden's name, but the nest is just so elegant looking!

:grouphug: I can only imagine all the memories this is bringing up for you.

Cali26's picture
Joined: 02/01/07
Posts: 1040

I can't imagine how you are feeling right now... all of your personal emotions and all of the emotions for your family.... My heart has been aching for your family since I initally read your post. I have tears in my eyes reading about the autopsy. I can't imagine the pain they must be feeling hearing that sort of news about their precious baby B Sad I'm glad they are so strong now and I'm sure they understand if you break down. They have got to be so overwhelmed with so many different emotions....

I like the idea of separate cards for each baby. I also like the ornament idea (I have one for each of my m/c and I appreciate looking at them on my tree every year). I do like the cut/fresh flower idea, too. The necklaces are beautiful. I do like the idea of the more subtle one; however, the name one is beautiful too. Sorry, I'm not much help in the suggestion department! I'm thankful that baby A is doing well and I will continue to keep your family in my prayers.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

I just wanted to give a little update.

Baby B's memorial was on Saturday. One Saturday, they also got back some pictures from Now I lay Me Down To sleep. Which is a group that has professional photographers come in and take high quality pictures of a baby in their last moments with their family. The pictures are so inredibley moving. In one picture, they put Baby B in with Baby A for the fist time since they were born. Baby A immediately grabbed Baby B's hand and held on tight. The photographer captured that moment. That single picture made me cry for hours. It's just amazing to see how much love and comfort these tiny babies had for each other.

It was a very tough weekend on the family. Not only was the memorial very emotionaly draining, but Baby A needed to have heart surgery the following day. She has been sedated since the surgery and they are starting to have her wake up today.

Her poor parents are just drained. I'm hoping that this surgery is a turning point for Baby A. I'm not sure how much more the parents can take. Sad

Kayla1981's picture
Joined: 01/04/07
Posts: 1529

Oh my goodness. Your description of that pictures is sweet but incredibly heartbreaking. My emotions have been running high lately with being pregnant and my friend's preterm baby so this hits all the closer to home right now. I just don't even know how parents endure this sort of thing. I hope they have a lot of support from family and friends.

Joined: 06/10/07
Posts: 1692

Wow. The picture you described, Amber. I can't even imagine. Some people have to be so darn strong in this life. :bighug: Keep us posted on how baby A is doing as they wake her up. T&P's are with everyone.

a's girl's picture
Joined: 06/10/07
Posts: 1008

Thank you for updating! Hopefully Baby A will recover well from her surgery! The picture you described is so sad...almost like Baby A will always have a part of her missing since her twin is gone. It is amazing at how strong people can truly be when faced with something like what they are going through! Your whole family is in my thoughts!

AshnBill's picture
Joined: 11/06/06
Posts: 5333

That is so sad. I can't even imagine what they are going through. Sad I hope that Baby A is doing well after her surgery. Give us an update when you get a chance. Smile

I think either necklace is perfect.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

Another little update.

They're having trouble getting Baby A off the oscillating vent. It was expected that after surgery her O2 needs would improve, but her lungs are really gunky and they are having to suction off some thick crud. They are worried that she may have an infection, so they're running some cultures. She also has some weight loss today. This far out from surgery, there should have been more improvements but we're still waiting. Poor little girl cannot catch a break. I hope tomorrow brings her a better day.

Their strength is just amazing. I have been falling apart frequently. But they have always been composed when around other people. They are hurting, you can see that. But the fact that they are functioning is amazing to me. I think they are getting a fair amount of support. I've been trying to do what I can by making meals and taking their older daughter so they can go to NICU. It sounds like people are already getting burned out a bit, which is really unfortunate since this is just the beginning of their long NICU stay. I think it's difficult to know how much help a NICU family needs unless you've had personal experience in that area. Thankfully I'm very close to them and I'm able and willing to help. I just want things to be stress free for them else where, since all they're seeing is the ugly side of NICU right now.

I did end up ordering them little gifts too. I found and Etsy seller with really nice handstamped keychains. I had all 3 girls put on there and got one for each parent. I wanted to make sure that the husband was included. I feel like everyone is focusing on the Mother, but not really making sure the Father is okay too. I hope they like it.

Ava is being amazing. I wasn't sure what to tell her about this all, so I decided to tell her the truth. We've been talking about why Baby B died, where she went and what is happening with Baby A. She asks a lot of questions and I answer them as honestly and age approperate as I can. Ava has been drawing pictures for the parents. After the first time we talked about it, she drew them a picture of all 3 girls. Right before the memorial she wrote their older daughter a letter. Her letters and books, which she likes to write often, are adorable. She draws those little squiggley lines to represent her words then reads you her story. She told me her letter said how special it is to have a sister on Earth and one in Heaven. And she said how much she loves Baby B, how special she is, and how much we miss her. It made me cry all over again.

Please keep them in your prayers.

Joined: 06/10/07
Posts: 1692

I love the necklace you described and how the father is included, too. They are all in my prayers. How completely sweet of Ava. What a nurturing little girl she is. Hugs for all of you. :bighug: Please continue to keep us posted on baby A. Can I ask how much she weighs?

alwayssmile's picture
Joined: 08/26/07
Posts: 14483

:grouphug: for you and for the family! I've been keeping up with your updates and it keeps breaking ME down. I just can't imagine what they're going through.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

Julie- She is 3 weeks old today, and weighs 1# 15oz. For a little while there she got above 2#.

They did restart her feedings, which is a good thing. When a NICU baby goes NPO they do still get nutrition through the IV. A form of TPN and lipids to help them grow. And they were able to decrease her pain medicine. She has been stable, just not willing to give up that vent. I hope today is a better day for her.

Kayla1981's picture
Joined: 01/04/07
Posts: 1529

"Lavender444" wrote:

Julie- She is 3 weeks old today, and weighs 1# 15oz. For a little while there she got above 2#.

They did restart her feedings, which is a good thing. When a NICU baby goes NPO they do still get nutrition through the IV. A form of TPN and lipids to help them grow. And they were able to decrease her pain medicine. She has been stable, just not willing to give up that vent. I hope today is a better day for her.

I don't know what NPO or TPN means. I've been hearing so many NICU terms and acronyms lately. Like Jackie said, these stories break me down too. I keep reading updates on my friend's baby, then there is your family and last night a friend posted a link to a woman who lost her twins at 19 weeks. It feels like there have been too many of these stories lately and it makes me so emotional.

I do like getting updates though. I will keep them in my prayers. It's so sad that people have to endure such sad things.

AshnBill's picture
Joined: 11/06/06
Posts: 5333

I'm glad she is stable. I hope she's been able to come off of the vent by now.

It sounds like you are doing an amazing job of being supportive, and I'm sure that means a lot to them! The gifts sound perfect, and Ava is such a sweetheart!!

Lavender444's picture
Joined: 03/27/03
Posts: 1944

Kayla- NPO means nothing by mouth. TPN- Total Parenteral nutrition. It's a complete nutrition given by IV.

Still on the vent today, but she was able to come off the oscillator which is fantastic! Hopefully she can get off the vent and back to CPAP in the next few days. She also got above the 2lbs mark again. Good day today. Biggrin

AshnBill's picture
Joined: 11/06/06
Posts: 5333

That is great news!!!

Joined: 06/10/07
Posts: 1692

I'm so glad to see a positive update. I hope today was another good day. :bighug:

Joined: 06/10/07
Posts: 1692

Amber - anything new to report?

Lavender444's picture
Joined: 03/27/03
Posts: 1944

She got another blood transfusion the other day (her 3rd or 4th) But then NICU was able to remove her Picc line and her extra IV. the parents were also able to dress her for the first time from clothes from home. I remember how special that was for me. So good news over all. Baby is still on the vent and is now 30 weeks gestation and almost a month old. Hopefully they can try CPAP again in the next day or two. She also hit the kilo marker in her weight (1000 gm, or 2 lbs 2oz). That's a nice milestone for a micropreemie. So, good news all around. Smile

Joined: 06/10/07
Posts: 1692

Oh good! :bighug:

Kayla1981's picture
Joined: 01/04/07
Posts: 1529

I'm so glad to hear another good update! I cannot believe how tiny she is. Even after all this time. So, after my friend's experience, I'm curious to know if they have been looking at her brain for bleeding?

Not to hijack, but today is the service for Micah Faith. One of my friends and I will be going.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

Kayla- She's been scanned twice for brain bleeds. She does have a grade 1 bleed, but they are not at all concerned about that and really consider it normal for a micropreemie. So they don't have plans to rescan her until 34 or 36 weeks.

I hope the memorial for Micah went well today and that her parents and family are holding up okay and have a lot of support.

Joined: 06/10/07
Posts: 1692

Kayla - :bighug: If you feel like talking about it, how was Micah's service?

Kayla1981's picture
Joined: 01/04/07
Posts: 1529

"Lavender444" wrote:

Kayla- She's been scanned twice for brain bleeds. She does have a grade 1 bleed, but they are not at all concerned about that and really consider it normal for a micropreemie. So they don't have plans to rescan her until 34 or 36 weeks.

I hope the memorial for Micah went well today and that her parents and family are holding up okay and have a lot of support.

That's really great to hear. I'm sure there are plenty of other concerns but it's great that it looks like one big hurdle for preemies will be avoided by her.

"Readyforbaby1" wrote:

Kayla - :bighug: If you feel like talking about it, how was Micah's service?

It was really emotional, but beautiful. I went to the viewing beforehand. Just seeing the tiny, white casket was heartbreaking alone. Micah was so tiny, she looked like a little porcelain doll laying there. Her mother stood up at the front of the room the entire time, hugging everyone who came. She was incredibly strong. It was truly amazing to watch. After that was the service at the cemetery. It was basically the same as a church service but was held in this sort of outdoor, covered chapel area at the entrance of the cemetery. It was one of the most beautiful cemeteries I've ever seen because it's buried back in a bunch of trees. A very peaceful place. A girl that we went to high school with opened the service by singing In My Daughter's Eyes. I don't think there was a single person who didn't cry. It was perfect though. The two older siblings of Micah released doves during the service as well. Yesterday was sort of bittersweet for me. I kept thinking about my friend and the sadness she had to endure on Mother's Day.

ETA: They changed two lines in the song. Instead of saying "And though she'll grow and someday leave, Maybe raise a family", it went ""And now she has grown her wings, she watches over her family".

Joined: 06/10/07
Posts: 1692

Wow, Kayla. What an emotional service. Sounds like it was beautiful though.

Lavender444's picture
Joined: 03/27/03
Posts: 1944

Kayla- I heard that song yesterday and it broke my heart for your friend. Parents just should not have to experience the loss of a child. Sad

Not too much new to report from my end. The baby is still on a vent and they are still hoping any day now it can come off. but the nurses said they feel like she has turned a corner. She doesn't scare them like she use to and they have actually talked about things that will happen once she goes home. Before they wouldn't even entertain that thought, just incase it never happened. So that is good. Mother's Day was a really difficult day for her Mom. I just wish I had the right words to say to her.

Joined: 04/09/06
Posts: 1244

Both of these families continue to be in my thoughts and prayers.

Amber--Sometimes all someone needs is an ear and a shoulder. No words are really necessary. It is hard though because our tendency is to want to provide something in response. Most people are just grateful for that person that let them talk, cry, scream, or whatever instead of offering kind words. :bigarmhug:

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