Auntie of a Preemie

Hi K.!

I am a 38 year old mom, and I was born at about 24 weeks gestation. I was 1 pound 15 oz at birth, and spent a few months in the NICU in an incubator. Medically so many advances have been made since I was born...And there is always room for MIRACLES!!! Think positively!!

My aunt gave birth at 27 weeks due to complications, this was 21 years ago now, my cousin (a girl) got down to 13 ounces and could be held in the palm of her fathers hand. She is now a thriving young woman who has graduated college and led a full life with dance lessons, violin playing and excellent grades in school. They can do so much for these babies and I believe that if they could save a child 21 yrs ago, they can do even more now!

i know its difficult when you have a preemie but i can tell you from the expirence of an auntie of a preemie my girlfriend delivered her daughter at 251/2 weeks of a baby that weighed barely one pound and was only 13 inches long it was a strugle at first but know you can barely tell that she was a preemie because she is a strong and vibrant 2 year old who is just a little behind on her speech but is walking and playing fine so yes there is hope at there so dont give up.

C.

Hi K...My story is about one year ago..My best friend Nikki was pregnant with triplets and gave birth at 22 weeks to all three. They were in the NICU at Hartford Hospital for a couple months, were treated wonderfully. My friend visited daily with her husband. It was difficult to see..but, always- keep your faith & hope. I'm sure the baby is in a fantastic NICU getting great care. The nurses and dr's in places like that are very warm, loving compassionate individuals. They know how hard it is for families.

The triplets just celebrated their one year old birthday...They are miracle babies!!

Your niece will get thru this..be strong for your sister and family. My friend's family lived out of state and she and her husband did it with limited support. Involve her friends, neighbors, for support.

My prayers are with you...
K.

Hi K.,

Our daughter was born 6 weeks early. She was 4lbs 10 oz at birth and dropped below that She was definitely stressed in the womb. 4 days after she was born she suffered a massive brain hemmorhage. She was rushed to Children's hospital in Boston where she stayed in the NICU for 6 weeks. She underwent 4 lumbar punctures (BIG needle put into the spinal cord and fluid drawn off the brain to relieve pressure.) The doctors told us that the gradation of brain bleeds was grade 1 was the least serious and grade 4 was the MOST serious. Our daughter had a grade 4! The doctors told us that she would NEVER escape this incident without some problems. They told us she would have Cerebral Palsey. They said she would never walk without braces, that her right side would be weak and that developmentally she would "maybe" get to High School but that would be it. She would never get to college.
I am so in awe of her. She will be 4 at the end of June. She runs, jumps, rides her bike, hops, scales stairs and rock-walls on our swingset in the yard. SHE IS AMAZING. A true miracle. She keeps up with her older brother (only 13 months older) and sometimes is more coordinated than he is. She swims plays soccer etc. She is reading already at the pre-k level! She recognizes all her letters, numbers, colors and when I teach them childrens chemistry lessons, she remembers the information better than her older brother.

The Dr. we had that last examined her and "dismissed" her from the Neurology dept at Children's said, that 50% of babies with the same level of severity as our daughter go on to be normal kids. The only thing he said is that he cannot tell you which 50% will turn out that way. He admitted that often, but not always, the children in better homes with love and support, and perhaps better educated, will have a better chance of turning out fine.
I will always be grateful to Early Intervention Program who worked with our daughter one-on-one every week for a year. My husband and I did a lot of work too on our own. We did 3 to 4 rounds of physical therapy on her EVERY DAY for the first year of life, until she started doing so much on her own, we didn't need to do it anymore.

We also have grown to love all of our NICU nurses. we still stay in touch with many of them. We bring our daughter back to Children's every year so they see how she is developing, so that they all have hope and can remember why they are doing this job that can sometimes be SOOOO hard.

Tell your sister there is HOPE for sure. Tell her to enjoy every step of the process, enjoy even the hard times now. If her daughter is still hanging in there, it is because she WANTS to be a part of your sister's family and lots of love and laughter, music, reading and activity will let her daughter know that she is special and has the support she needs to make it! Also, tell your sister to NOT lower her expectations of her daughter because of any of this. Still expect that she will be normal, and bright and she will be more likely to RISE to that expectation!

I wish you and her the best of luck. My heart and prayers go out to all of you.
C.

Just a quick note because I have to run, but wanted to let you know that my youngest son was born at 26 weeks, weighing 2 pounds 11 1/2 ounces. He was hospitalized for 8 weeks, then came home weighing 4 pounds 11 ounces. He's now 7, and he is a brilliant, gorgeous, spirited, energetic child. He's still small, but I think that has more to do with genetics than anything else, and he keeps up with everyone just fine. He excels at everything he does- his teachers are amazed when they hear how early he was.
The first year was tricky- issues with growing, etc. and always wondering what would come of him, but he's done great! I'm sure your new baby girl will do fantastic.
Oh, and the nurses always say that the girls do better than the boys- it wasn't so much of a relief when they told me (unaware that I actually had a boy), but seems to be true, nonetheless. LOL.
Hugs and prayers. Any time the baby can be held, I suggest it. The skin to skin contact really helps. Also, if she is planning on breastfeeding, that's a huge help. I pumped for 8 weeks, and by the end had practically nothing to give, but once he came home and we began to nurse full time, he went on to nurse until he was 14 months old.
Best wishes!!!!!!!!
There are some great yahoo groups available that really helped me while I was going through everything- I strongly suggest finding one online!!

I work in Early Intervention and we work with lots of preemies who are doing very well by the time they are a few years old. I would recommend she get involved with EI as soon as they are able to leave the hospital...there are so many great resources out there for preemie families now!

Hi K., Keep up your positive spirit. Our second child was born at 31 weeks and weighed 3 lbs 1 oz. He was 17" long and we could see through his skin. They tell you all the horrible things that can go wrong and all the risks involved with an infant in this condition and as a nurse, I found it horrifying to hear all of it. They told us several times that girls do better than boys, and statistically (?sp) that it correct. We spent one month in the NICU and he came home at 4 1/2 pounds. Other than being a little small for his age, he's doing great, plays sports and is a very bright child. Tell your sister to keep her faith and do all she can to take care of herself and her daughter and everything will work out. Miracles happen everyday, and your niece will someday be able to tell her story just like the other people in this post.

I also went into premature labor at 24 weeks, They managed to hold it off for 7 more weeks. Our daughter Isabella was 3lbs 2 oz at birth. She was in the nicu for 4 weeks but then came home. Today she is a healthy beautiful 9 year old. Prior to having our daughter we also had a son. He was born at 24 weeks at 1lb 2oz. Shortly after his birth they told us he couldn't reoxengenate his blood, did we want to hook him up to life support. he had a mark on his nose that they thought was a birth defect. they didn't think he would have any quality of life. We did not hook him up, and I regret it to this day. After an autopsie, it was found only to be a stratch and the reason for the preterm labor was an infection that I had passed on to him.
Please support your neice in any way you can. When I went into labor the second time, I was informed that a white baby girl has the best chance of all to make it as a premie. God Bless you, and may He watch over all of you.

Hi K.,
I am the Mom of a preemie as well. It has been along road, but I always tell myself it could have been much worse. I am a strong supporter for the March of Dimes and last year came in 3rd place for money raised in our region. If you go to the march of dimes website, there is a little girl you should read about....She is the 2008 National Ambassador for the March of dimes...She is quite an inspiration and her story offers hope! Just copy and paste the link below into your web browser and it should bring you to her page. Good luck, and I pray God will give you and your family strength.
Jen

http://search.marchofdimes.com/cgi-bin/MsmGo.exe?grab_id=...+

My son was born at 28 weeks and 6 days. Had Intercranial bleeding and other problems. Today he is a healthy 7 year old playing soccer and learning to read. He is really a delight and joy. However I would advise to prepare for the worse so when set backs come they wont be so devestating. Be positive be prayerful. We consider our son a miracle baby. We are blessed to have him but it has not been without it's challenges.

hi I am a mom of a 26 weeker now 8. My son had a ivh grade II(brain bleed) He is now in first grade and awesome. I would like to invite your sister to join my group ____@____.com I found this group of great help when my son was born. The original owner turned the group over to me. The group is a great online support for mom and dads of all aged preemies. If you have any spacific questions pleas feel free to email me. Best of luck L.

hello, I am a mother of preemie twins. They were born at 30 weeks and they were 1.5 klg each. they stayed in hospital for 1 month but I can assure you that doctors really manage do do miracles now days. My daughters are now 4 years old and they are fine, healthy and growing fast! Please do all think positive as much as you can especially to help your sister.

Coincidently I recently ran into an old friend. He told me his son was born very premature as well and also had the intercranial bleed. Fortunately, it stopped. He son is now 3 and doing well. He did say the first 10 months were very difficult. I hope your niece is as fortunate. I will keep her in my prayers.

I had a preemie at 34 weeks, I know thats a lot older than your sister's baby but our son had to be in the NICU for a little while. While our son didn't have any medical issues we made friends with a few parents who had children in there for more serious reasons. All the people we met had the most positive outlook and so much strength. I think that the best thing you can do is stay strong, believe that your niece will get better. Outside the doors to the NICU is a large wall filled with pictures of babies that started their lives inside the NICU. Some were born at 24 weeks and now are thriving, healthy 1 year olds! Love, hope, prayer and support are the most important things. I pray your niece gets better.

I have a friend who, after 2 very preterm births- at 19 and 21 wks- where both babies only lasted a few hours- had a daughter at 24 weeks. She was just over 2 lbs at birth and dropped to just below that after the first few days. She was in the hospital for 3 months and things were touch and go. Pneumonia and other lung problems.

I am happy to say, Riley is now a happy, healthy 5 year old (she'll be 6 in September). She has no learning, vision or other health problems. Miracles do happen. Hang in there and stay strong for your sis. Good luck!

Hi K. - I am sorry for this sad news, but there really is hope! My neighbor had her daughter at 26 weeks, and she weighed less than 3 lbs. She is now an absolutely beautiful toddler, walking and doing all of the things that she should be. You would never know what she went through. Developmentally preemies end up a little behind, but only because they lost all those weeks in the womb. By a certain age (I forget, maybe age 3?) they usually catch up and are fine.

I will keep your family in my prayers.

D.

Hi K.,
I gave birth to my daughter at 26 weeks gestation. She weighed 1 1/2 lbs. While she never had any intercranial bleeding, she had a lot of other problems. She just turned 10 this past February and besides being on the small side for her age, you would never know everything that she went through as a preemie. Please have hope for your new neice and continue to support your sister, they will both need a lot of help. Best wishes to all of you.

I knew an amazing child who was born at 24 weeks. I met him as an infant and had to say goodbye to him at age 2 because he was totally age appropriate in all his developmental milestones! These babies are truely amazing, they have strength most of us will never know and a fight in them that helps them conquor the odds. Get the family involved in Early Intervention services ASAP, it makes a difference for the child and for the family. The agency can help hook them up with other parents of preemies as well as provide services, even if the baby is not home yet. Just love that baby, do whatever you can to help the parents be with her as much as possible. Having her parents there will help her. The book "The Preemie Parents' Companion" by Susan Madden is a wonderful resource written by a mother of a preemie who's also run many support groups. My thoughts are with your neice and family.

Hello Auntie, I would like to offer you hope. First, to gain some support, ask around to learn if there are either volunteers or nurses there at the hospital that offer Reiki or healing touch. Many traditional allopathic hospitals do these days because there is no denying any longer the results they have witnessed by volunteers. Nurses are taking healing touch courses, which is a form of 'energy work'. I happen to be an energy worker. Amongst other modalities, I am a cranio-sacral therapist. (With cranial bleeding I do not reccommend CST,BTW) but I would reccommend hands off energy work which is Reiki and healing touch...and this can be done from outside the room where the child/mother is. If you're not comfortable with any of this, by all means have it done on YOU for the sole purpose of calming your soul some. Secondly, know that merely sitting in your home or while at the hospital with your sister, in a state of intended stillness while calm and present in meditation and/or prayer is the best medicine you can offer right now. Ask your higher guides to take 'worry and doubt and fear' out of your mind and replace it with unconditional love (as you have already expressed so naturally) and allow the light that is there within you to shine outward to your sister and to this baby. You are a living miracle Auntie, as are we all. We only need to access what we already have. Be Peace, and I will Shine On for you as well in my prayers today ...N
PS...so you know, I am a professional health care
practitioner of 23 years whom now practices alternative and complimentary therapies.

Auntie...

stay strong...you will be amazed at how resilient preemies can be...my daughter was 7 weeks early...completely unexpected, as my 1st daughter was a week late. We were transferred to the UCONN health center, here in CT and it was the most amazing hospital- Know that the knowledge doctors and nurses have about preemies is incredible! The tremendous medical advancements, combined with the exceptional level of skill these people have will carry your sister and her tiny baby through... The good news, and this came direct from the Docs and nurses, is that preemie girls do "better" than preemie boys. The doc explained it to me, but it is a medically documented fact. And at 3lbs, she's actually a pretty good size for a 28-weeker...believe it or not...continue to send your sis and her baby lots of prayers and good wishes...preemies need lots of time, which can be the hardest thing to give! Take care and god bless!

K.,

While this is scary, I know, there are amazing things the medical community can do with Preemies today. My twins were born at 31 weeks. Emily was 3 lbs, 14 oz and Andrew was 4 lbs 9 oz. They were born at Women and Brigham Hospital in Boston. Andrew was in the hospital 4 weeks and Emily was in for 8 weeks. We had a generally "easy" time, although there were complications with Emily once she started eating from a bottle.

This was emotionally wrenching for everyone. It's scary and awful. BUT there is very often a light at the end of the tunnel.

Does the hospital practice "kangarooing"? That's when you lay the naked baby directly on your skin for skin to skin contact (you both get all wrapped up in blankets). This was developed in 3rd world countries and increased the survival rate of preemies by something like 1/3. Since you don't get to hold a preemie that often during the day, this was the most precious bonding time we had. I just tried to soak them in and give them all my love in that 60-90 minutes a day I had with them. I would recommend looking into it if they are not doing it. It's good for mind, body and soul of both parent and child. You can find info by googling or going to the March of Dimes website.

My thoughts are with you and your family.

Beth

Well many prayers and blessings to the beloved angel and her caring angels,

This is a heavy message but........please do not apologize for reaching out!My son M was born at 26 weeks gestation. We had no alarms during my pregnancy then that fateful morning that my water simply broke. We sped to Anna Jacques to meet the OB. After confirming that my amniotic fluid was ruptured we asked to be transfered to Boston- Brigham and Women's/ Children's as AJ does not have the capabilities of managing a pro-found premie. We knew that if he was born alive he would require top NICU intervention.

Well our angel came into this world at 1lb 13 oz. He required immediate ventilation in that his lungs were not only immature but had begun to fill with fluid with gram negative pnemococcus setting in. He quickly went from a few minutes of stability to plummeting farther- if that was possible. The following days entailed diagnosis of broncho pulmonary dysplasia (his lungs were literally blowing apart from the pressure of the ventilation), he now had a fulminating septic infection, poor oxygenation even on full vent, a PDA (hole) in his heart amongst a host of other - less fatal (?) issues.

On Thanksgiving Day 1995 M was baptized and we were prepared by the heaven sent professionals at BW to hold our son, love him, thank him for gracing our lives and the world and encourage him to hold our hand's tightly and that we would never let go until the angels took his other hand and lifted him into their embrace. Needless to say I can not begin to write these words without profound emotion- of every sort.

As M was too ill and fragile to be placed in an incubator he was on what we call to this day, "a bun warmer". Not knowing what to do.... I rested my left hand on his back- my hand actually covered his little body completely from the top of his head to his tiny tucked feet. The connection we have with each other is beyond divine. I could sense M's pain, feel his tiny cries then miraculously feel him respond to my hand. Days turned into weeks, my husband pacing and I on my perch. My husband made spread sheets of M's microscopic weight, O2 rates etc... he did what he could do and I was encouraged to do what I felt right.

At 10 days post birth the hole in M's heart had to be repaired as it was now somehow a possibility that our miracle boy might make it. The hole in his heart was encumbering what circulation he did have. At 1 lb 11 oz. a Brizilian pediatric cario thorasic surgeon agreed to take M into his heart and gifted hands performing one of the first fibre optic microscopic heart repairs. Our neo-natologist Dr. Steven Ringer and Dr. Eric Eichenwald ( both sainted) accompanied M into the surgery along with a score of attending specialists. The surgical suite had to be heated to 101 degrees as M did not have the capacity to retain his own temperature let alone maintain it.

After three wrenching hours the blessed, sweaty, exhausted team emerged with a true glimmer of hope in their weary eyes.

Roller coaster after roller coaster we were coached and learned how to tryuly live in the moment- as thigs could change just as quickly. Every day presented a new worry, testing.... more worry. Just when we wnated to cry in relief for a hurdle passed ( M's lungs gained enough strength and mass that he was placed on a high freq. ventilator to limit the tissue destruction)

Then the inter-cranial bleed worries--- had a few initially but they thankfully remissed. However, no one can calculate the impact of Oxygen deprivation, inter-cranial bleed, treatment with antibiotics toxic to a healthy adult etc...
Then the apnea- premies stop breathing when stressed, tired or they forget--- it is the last on first off principle. Breating is the last skill learned only at birth therefore the first one to go under duress. We "kangaroo'd" him whenever he was stable enough- if we couldn't one of our beloved aunties, friends, so many ---would tuck him inside their shirt in a pouch and rock.

Going home was emotional for all. M's primary nurse MaryAnne, Dr. ringer, Dr eichenwald and so many more eyes all filled with tears------we were over joyed to be a family together. We were also thank fully prepared for potential hurdles to be faced during the next few years. The first year was a blur... M could not nurse- took too much energy- so I pumped, fortified the milk and patiently fed- 1 oz over an hour was worthy of a victory lap. I can not say enough for the care and befefit provided by the Early Intervention team that came to our home three days a week for 18 mos. There were other numerous cliff hanging moments- full arrest at home, life flight to Children's- etc....

We always said we would throw a party for the BW NICU and all of our support team (family, friends, previous strangers) when M's weight and or height made the piece of paper not even the chart that documented % for age. Well, that day came and a party we all had. Every day has been a blessing and deepening of the divinity of all life. M is now 5'7", 115 lbs, size 9 mens shoe, snowboards, golfs, plays lacrosse, basketball as well as holds scholastic honors now well into sixth grade.

He is emotionally mature, caring, secure, intelligent, physically strong and a joy beyond understanding. Please understand that he would be the same joy beyond understanding with any limitations physically, developmentally and or intellectually. The human is the only life form that has conceptualized "perfect". What does that mean? For this family of four-- perfect is simply that---
love
K.

Hi K.,
You are a very sweet to request help for your sister. I am sorry to hear the news that her baby passed away. I wrote you a reply and then read your update. I hope this one will replace the one that I wrote.
There are support groups for infant loss and grief. Your sister may need help locating these. There used to be a group called Resolve in Hartford. Also, check with the social worker at the hospital. Your sister may not want the information now. But, I would get the information and hang on to it. Then when she needs it, you have it.
I'm sorry for your family's loss.

My niece was born at 28 weeks and weighed less than 2 lbs. She was in an ICU incubator for the first couple months or more. You could hold her in one palm! She is now 26 years old and has two strapping girls of her own, shared with grandparents and the rest of us.

That was a long time ago and medicine has come even further. I pray that medical advances are with you and your sister's family. Who knows, this little one may some day be the mom to more strapping young children! You never know! Meanwhile, cherish the time you have with her. She is a precious little gift!

Hi K.,
I had my daughter only 2 weeks early, but she weighed only 4 lbs. Our focus was just had to keep her warm, until she had enough body fat on her, and to feed her every 2 hours. After a week in the hospital she came home (at 3lbs 5 ounces). She is now 17 months old, a little peanut, but very healthy and very happy!!
I will add, that a friend of mine just gave birth recently, and she was about 28 weeks along. The baby was abt 4 lbs, and she is still in the hospital (they usually go home abt the time of their expected birth)--so tell her not to focus on the time that she will spend in the hospital. My friend's baby was a little touch and go for the first few days, but everything is growing as it should, and she is doing great!!
---but Babies are so resilient, and they grow so quickly--so each day that your niece is in the hospital, she is getting the best medical attention, the best tender care, and good vibes from all the staff, and all the love you all have for her---she will do just fine---You would be amazed at how many people go through what your sister is going through right now---Tell her (and you too) to ask questions, talk to the doctors and nurses who are tending your niece. Ask what you can do--get hands on. Some insurance's (and Hospitals) will let your sister stay in the hospital until her daughter is out of the woods.
When I had my daughter---if she didn't go home when she did, the hospital was going to keep me in my room, until she went home. Insurance was going to cover this because I was breastfeeding (and pumping) and thought that is was very important for the baby for that to continue. The only thing I had to pay for was my meals, and my TV.
Look into that-----and if she can't breastfeed, right now--have her ask the doctors if she cn pump---then they can give it to the baby via a syringe--(Unless she can't or decides not to breastfeed) I hope everything goes well, I will send my prayers your way------K.

Hello,
I'm very sorry for the experience that you and your sister are going through. I do have a positive story though. My best friend gave birth to twins at 27 weeks gestation. They were both under 2 lbs at birth and were not expected to survive. After multiple surgeries on their tiny heart, lungs etc and 3 months in the hospital, they were released on breathing monitors. They are now beautiful 7 year old girls, with no lasting health problems! So keep in there and good luck! Hugs to your sister.

My newphew was born 11 weeks early at 2 lbs 13 oz. He had heart surgery at 4 days old, he has a shunt draining fluid from his head to his stomach and his appendix burst when he was in NICU at Children's Hospital. They gave my sister NO hope, wanted to take him off machines which she rejected. He's 2 1/2 now, although he learned to walk late at 21 months he's good as gold. He's a walking, talking, generally happy 2 1/2 year old. Other than being somewhat small for his age, you would never know what he went through in his early days. The only suggestion I have is after she's out of the hospital get Early Intervention involved as soon as humanly possible.

I have another friend who had a preemie Dec 28, and the baby came home from the hospital mid March. She wasn't due until March. She is doing fine as well.

Keep the hope alive, and have your local church add the family to their prayer list.

K.

I know it's scary, but try to stay positive and supportive! I was born between 28-30 wks gestation (they couldn't be exactly sure bc I wasn't planned, mom was irregular). I weighed 1 lb. 13 oz. This was 30+ years ago and I am here and I am fine. Things didn't look so good in the beginning, but they turned around with enough time and care! I will pray for the same for your niece.

I had a friend give birth to twin girls at 28 weeks. They are 6 years old today. They were less than 2 pounds each. It is a scary time, but the techonology they have today makes miracles happen. Stay positive, and I will keep you in my prayers.

Remember miracles happen everyday.

Sam
Mother of 3

K.- I just had my son's first birthday party yesterday. He was born 2 lbs 4 onces and now he's doing great. He did 48 days in the NICU. The start of a preemie's life is different then most mother's are expecting but they do catch up and the doctors are amazing! I look at the pictures of my little guy in the NICU and can hardly imagine all that happened now. My quick advice- I know you often feel like you can't do much while they are in the hospital but on April 20th there is a March of Dimes walk in Worcester. March for Babies...my husband and I told everyone at our son's party- no presents but we will take donations to the March of Dimes. We've raised over $500 through family, friends and work. I'm sure you can still sign up and it can help you and your sister. Many nurses, doctors and NICU graduates will be there- I can't think of better hope. Also, what helped me is I found a NICU journal online- I'm sure you can google it. It allowed me to keep track each day what the doctors said, the weight and my emotions...and there's some other good preemie books out there with stories of hope and/or information. Currently, I like, "Parenting your Premature Baby and Child- the Emotional Journey" by D. Davis- it nicely talks about what a mom goes through and the sense of loss of the anticipated birth experience. The NICU has a lending library too. Hope that helps and you are a great aunt for being there. I have great faith it will all work out.

Hi K.
I had a preemie at 29 weeks nearly 19 yrs ago. It was the most difficult time of my life! It seems like such a blur.
The only thing I wanted was to be with my baby. My car broke down on the way to the hospital, one of the days I was visiting him and I ended up walking in the rain (no cell phones then). I think anything you can do to help her with her 'everyday' stuff, grocery shopping, house work etc. is one less thing she has to think about, and more time she can spend with her little baby girl. I truely believe my son did so well because I was there every day, rubbing his back and talking to him. If you can offer her rides back and forth to the hospital, bring her meals, listen to her, don't let people tell her their horror stories. I'll pray for you all, it's a long and difficult road! Be patient with her. Please let us know how they do. Sincerely, S.

I will pray for you all.
I am a soon to be 36 yr old who was born in 1972 at 24/26 weeks (they could not fully determine the due date). I weighed 2lbs 7 oz. I hope and pray the bleeding resolves and that your little neice continues to fight on. She is such a trouper and so brave.
God Bless