Support for parents of preemies & NICU babies, #2 - Page 2

[tarakay]

Olivia - I envy your NICU/growing unit experience! Slinging nurses, full time LC for the NICU, massage, and babywearing classes? Amazing!

[etoilech]

I was pretty stunned myself. Since slings were new to me. : They gave me a copy of "The Baby Book" as a gift when we went home. I had other Dr. Sears books there and the nurses loved them (I left them in Erik's nightstand and told them if they were bored, to take a peak), so they chipped in and bought me that one. :LOL I just wish my experience was the norm and not the exception. I have a few girlfriends that had to go through HELL with the hospital and staff when their babies were in NICU.

Olivia

[mamatojade]

Originally Posted by eilonwy

Entirely differently! BooBah was born by emergency c-section at 39 weeks for a prolapsed cord. I had no labor at all, a completely pain free birth, and a very quick and easy recovery. BooBah was smaller than I expected her to be (6 lbs 13 rather than a solid 8) but I had also expected to carry her to 42 weeks (I just felt like I would ). She's got some kidney problems, but thus far it's nothing major. It's all good. She never went to the NICU, in fact she wasn't out of my sight at all after I got out of recovery. She'll celebrate her first birthday this month. She's petite (my kids are not huge) but not super tiny or anything, and she's growing well and fairly advanced in all of her milestones, so I don't worry much about her.

That is awesome!

[mamatojade]

Originally Posted by etoilech

Our hospital was extremely progessive. Using hammocks for the babies in the growing unit. They encouraged us to care for him from the beginning. Kangaroo care was immediate. The nurses carried fussy babies in slings once they were out of incubators. I walked in more times to a nurse with two wheeled bassinets next to her and an infant in a sling than I can count. Or they would just hold them while filling out paper work, etc. They did regular baby massage. Instructed us on how to do it. All babies had physiotherapy to improve lung function. We have the same physiotherapist that Erik has had since he was born. They also had baby wearing classes.

We had a full-time lactation consultant just for the NICU. We were given a Medela Symphony pump to pump with and were show how to use breast massage to help. We were also given hints to increase supply. They have their own milk kitchen which puts pumped milk into bottles and freezes excess milk for you. They also sterlize all the pumping equipment for use in the nursery. We also had many many pumps on wheels to pump in the nursery complete with sterile tubing, horns, membranes, and bottles. We had lables with our childs name and a spot to fill in the date and time the milk was pumped. You put the bottles in the milk fridge which was emptied several times daily by the milk kitchen. You also had 2 sterile bottles and a refrigerator box to take home to fill with milk given to you every evening when you left the nursery. They had great nursing pillows.

The nursery was open 24 hours a day 7 days a week to parents.

If I sound like I am bragging about our hospital, it's b/c I am proud that they have it the way it SHOULD be for all parents.

Olivia

This was the way that our NICU was as well. There were a total of seven full-time LC and OT to help with nursing challenges! They were so great.

BTW - do you post on MD as well?

[etoilech]

Originally Posted by mamatojade

BTW - do you post on MD as well?

:LOL Yep!

[crissei]

At 30 weeks I had an emergency cesarean due to Pre-E and HELLP syndrome.
Im currently looking over my shoulder every few minutes at my sons pulse-ox monitor. Juggling (battling) several specialists and all around losing my mind. . Anyone that needs to talk about dealing with an abbreviated pregnancy or any of the stresses associated with nicu stay ect. Mabye we can help support each other.
etoilech, your post makes me want to cry. I actually had to fight to breastfeed my baby at his bedside, a nurse said I couldn't EXPOSE myself in the PCN.
Sorry if this comes off as whiny. I know I've got alot of unresolved issues.
I would get therapy but that would just be one more doctor!

[etoilech]

Originally Posted by crissei

At 30 weeks I had an emergency cesarean due to Pre-E and HELLP syndrome.
Im currently looking over my shoulder every few minutes at my sons pulse-ox monitor. Juggling (battling) several specialists and all around losing my mind. . Anyone that needs to talk about dealing with an abbreviated pregnancy or any of the stresses associated with nicu stay ect. Mabye we can help support each other.
etoilech, your post makes me want to cry. I actually had to fight to breastfeed my baby at his bedside, a nurse said I couldn't EXPOSE myself in the PCN.
Sorry if this comes off as whiny. I know I've got alot of unresolved issues.
I would get therapy but that would just be one more doctor!

Oy, you had a rough ride. Expose yourself??!? She would have pooped her pants in our NICU. :LOL There was a lady accross from me that would totally remove her shirt to pump, which was a bit much. Especially since we were provided with comfy scrubs to pump if our shirts were not suited to pump/nurse. Then again, no one in the unit seemed to care or mind...

I do think there should be more attention paid to the whole abrievated pregnancy thing. I really wanted to be pregnant again SOON after having my son. I think mostly b/c I missed out on a WHOLE trimester of pregnacy, and your body and mind (at least mine was) is all screwed up in mourning of a pregnancy abruptly ending. It's only now that I'm over it to a certain extent.

I'm sorry you had such a rough time in your unit. I've heard NICUs can really vary in the USA, and it's mostly dumb luck if you get a good one. Have you thought about volenteering to help in your unit? It could help you work through your issues and help other mums too. Just a thought.

Olivia

[mamatojade]

Originally Posted by etoilech

:LOL Yep!

Thought so!

[lunamegn]

Is there a thread for current NICU parents???

I'm in the midst of our NICU stay. We probably won't be out for another 6-8 weeks. Joaquin was born at 35 1/2 weeks. He cried and breathed, but we could tell he was struggling so we took him to the hospital. If you want to read the full birth story it's over in the pregnancy section under the July due dates under the thread Joaquin Zion Rueben.

Now we are at Lucile Packards Children Hospital at Stanford. He's got big problems with his kidneys. One kidney does not work due to a blocked ureter and the other one had a partially blocked ureter which caused that kidney to be malformed and so far is showing little function. So we are looking at a transplant at a year.

Joaquin turns 2 weeks tomorrow and his whole life has been the NICU. I'm still mourning the loss of my "ideal" birth - but as my man says, it just goes to show that you can't plan anything. I never DREAMED that I would be going through all of this. It's like a constant rollercoaster ride and even reading the "Premature Baby" book is hard. My mom and I bought him some clothes yesterday, but it's like I don't want to do that because I don't want to jinx anything. It took me a while to really become attached to him because he's been so sick and I worried that we would lose him and my heart would break into a million pieces. It's hard not to be able to hold him and to leave him in the hospital and go home to our temporary home. It's hard not to do all the things i dreamed - like breastfeed, co-sleep, etc... I worry that he won't know me because we aren't able to have this special time together right after his birth. But he does know me because he always turns and respondese whenever I am there with him. And then I find that we can't take him home for another 5-7 weeks.

It's hard to take things each day at a time. I want my baby home RIGHT NOW. I want to wave my hands over him and magically fix all his problems. I want a normal life. I still cannot believe that this is all happening to us. I wake up and it's like we are in a nightmare. I mean, he's doing so well, but it's still a nightmare.

I'm sure that you can all relate to waht I'm saying. It's nice to just get it off my chest.

[Jillbob]

[Lousli]

Lunamegn,
I'm so sorry that you're going through all of this. I don't know if there's a thread for current NICU parents, but many of us were there not long ago, and can remember the feelings all too well. I wish I knew what else to say other than it is okay to grieve your birth and the ideal homecoming you thought you'd have. I hope that your son is home quickly and safely, and that he is able to recover from his kidney problems. Although you mention not wanting to buy his clothes you'll soon be putting those tiny clothes away in a drawer and saying, "do you remember?" I still have NICU nightmares, but remember that your baby does know you, and love you, and every second you spend with him is precious, even if it is in the hospital. Feel free to vent here, we're here to listen.
Hugs.

[eilonwy]

As far as I know, there is no thread for current NICU parents; I think it would be difficult to do as most babies are in NICU for a matter of days or weeks. We're all here for you, though.

[justmama]

Wow I had no idea this thread was here! My daughter is a 34 weeker due to PPROM. We not only had to deal with her prematurity problems and the grief of our birth experience, but since we are military and I delivered in a military hospital, things are that much more difficult. My dh almost wans't there for the birth, had to battle to get time to spend with our daughter the day of the birth, and had ot battle for time to take our older dd so that I could run in to nurse several times a day. And this is all not to mention the ridiculous army doctors and nurses to contend with daily. My Sara was 5lbs 3oz at birth with good lung function(due to a 4 day previous stay for me with antibiotics and steriod shots continuously) and apgars of 8 and 9. She seemed problem free, just needing NG feeds and an isolette for temperature reg until the day she was supposed to be released. She went septic and had to undergo several blood cultures, EKG's(tachycardic at 260), oxygen, lumbar puncture, iv feeds yet again, back to NG feeds, and then weaning back again to breast/bottle. I'll never forget her screams during the LP. It was horrific and brings me to tears still. And I'll never forget Specialist Martin, her nurse that day. He took me down to the cafeteria, bought me a hot meal, and sat with me to make sure i ate it. I hadn't eaten in days, hadn't slept in days(remember those around the clock pumping routines?????), and I was an emotional wreck. He saved my sanity! I'll never forget watching her brady on the monitor and silently willing it to go back up. But she made a full recovery and was released on an apnea monitor. Three weeks later we were back with RSV and on oxygen and albuterol and scalp iv feeds and chest percussion and that horrific agressive suctioning that made her scream, gag, throw up, turn blue, and choke. She's now a healthy, happy, fat little 5 1/2month old nursling weighing in at a whopping 16lbs. And older dd's waldorf dolls wear her tiny sister's preemie clothes!

Meg

[FancyD]

I was also back in the hospital for RSV, two weeks after ds's release and he is the same age as your dd! February was not a good month.

[happyblessedmama]

I'll go ahead and post to this thread...

My NICU baby was my third child, first daughter. She was born at the end of November 2004, 9 days after her (accurate) due date.

We didn't know there were any problems until my water broke at 10cm; it had meconium staining. It wasn't bad at first but once I was out of the water (I was at a birth center) they decided to transfer me right away. Worst car ride of my life (no time to do an ambulance).

Baby was born not breathing, heart rate less than 80 (according to her discharge papers - I was too overwhelmed with all the goings on to know these things personally at the time). Her apgars were 2 and 9. I got to hold her for about 5 seconds and she was gone to the NICU with my husband. Let me insert we both had the most awful stomach flu I'd ever had.

I stayed in the hospital postpartum ward to be close to my baby. She had meconium aspiration (most likely in utero, because they sure suctioned her out, and supposedly there was nothing below the vocal cords...) and was on a ventilator for 7 days. Developed PPHN due to the damage to her lungs and that caused her to retain fluid. Spent the remaining 5 days of her 12 day stay learning to nurse - we almost quit, but as I write this she's 7 months old, happy and nursing

The hardest parts for me were hearing the first night that there was a 20-30% chance she'd die. The doc even said "this is why we don't have babies at home" (which I protested, I wasn't trying to have her at home - long argument - and insisted they change the medical records, they had her in there as a failed homebirth - when I was at the birth center, 5 min. from the hospital). After that, it was being in the postpartum ward and hearing the other ladies' babies cry, and I would have to go wash up to see mine, and then I could not hold her or touch her because she became agitated with the ventilator tube if disturbed. I got to hold her again on day 7... what a special moment. Then it was pumping to try to bring in the milk, and the disappointment when she just shut down when I tried to nurse her - literally would go to sleep. Couldn't take something going in her mouth, and of course if she can't eat, she can't leave.

I moved into one of the NICU parent rooms at the hospital and would hold her for 12+ hours a day. It was awful.

I'm so glad it's over and that I have my baby girl... as much as I'm anti-induction and all that I don't think I'll be able to go "overdue" again without much mental fear. The NICU experience was one of the saddest things we've ever done... that my daughter is here is the only good thing out of it. And of course she's a big one... but the experience is still so fresh in my mind.

[wende]

My last two were born at 32 and 33 weeks. I'll post more later, I just want to put a reminder to myself here about the old man at the security counter, lol.

[tarakay]

Well, we made it through the first birthday! Unfortunately, she was sick for the first time ever with a 103.4 degree fever all day. She ran a fever for 3 days but never had any other symptoms - no cough, no runny nose, nothing! She didn't even pop a tooth through (although I didn't think teething would cause such a high fever). She's fine now, but she did have us worried and she was miserable for her party.

Now we're dealing with eating problems. She still won't take a sippy cup or a cup with a straw or a bottle or anything, and my milk supply is not what it used to be. She's not eating solids very well, either. The feeding team at our Children's Hospital can't get us in until July 19th. The past two days she has been thrilled with sweet potatoes, though, so I'm hoping it was just a phase? I don't know. We tried letting her feed herself and everything, but it's just not working.

We're moving across the state the 23rd of this month and I need to find a new pediatrician, new OT, new PT, and now try to get her in to see the feeding team in our new area. It's always something, you know?

I hope everyone else is well. Sorry for my poorly written post. It's late and I should be sleeping!

[bestla]

deleted post

[ErinEmily]

Originally Posted by etoilech

...Our hospital was extremely progessive. Using hammocks for the babies in the growing unit. They encouraged us to care for him from the beginning. Kangaroo care was immediate. The nurses carried fussy babies in slings once they were out of incubators. I walked in more times to a nurse with two wheeled bassinets next to her and an infant in a sling than I can count. Or they would just hold them while filling out paper work, etc. They did regular baby massage. Instructed us on how to do it. All babies had physiotherapy to improve lung function. We have the same physiotherapist that Erik has had since he was born. They also had baby wearing classes.

We had a full-time lactation consultant just for the NICU.
.... They had great nursing pillows.

The nursery was open 24 hours a day 7 days a week to parents.

If I sound like I am bragging about our hospital, it's b/c I am proud that they have it the way it SHOULD be for all parents.
...
Whew, now that was a book. I love reading your stories about your children. It helps me so much to know I'm not alone.

Olivia

I am so glad that there are good, friendly NICU's out there. I just wish they were here.

We had to argue for Kangaroo care. Our daughter was born at just over 30 weeks. She was 2 lbs 4 oz. Her birth story is here Our stay in the hospital was not so friendly as some I have read about here. She was 20 days old before I was alowed to hold her, that's when we started Kangaroo Care. Once I was allowed to start BF (after she proved that she could bottle feed) then we weren't allowed to Kangroo any more. This meant that my dh couldn't hold her because they only would let her out of the issolet for 30 min each time she wanted to nurse, because she "might" get cold. No bothering to check if she was or not just that she "might". AHHHHH!!


Also the hospital has only 2 LC only one at a time. For the whole hospital. Only place other than at home to have babies in the city!! How foolish.

Sorry about the rant I am still a little bitter about the whole thing.

DD is now about 19 weeks old. She was in the hosptial 8 weeks exactly.

Thanks for giving me hope that there are better hospitals out there.

[etoilech]

Originally Posted by ErinEmily

We had to argue for Kangaroo care. Our daughter was born at just over 30 weeks. She was 2 lbs 4 oz. Her birth story is here Our stay in the hospital was not so friendly as some I have read about here. She was 20 days old before I was alowed to hold her, that's when we started Kangaroo Care. Once I was allowed to start BF (after she proved that she could bottle feed) then we weren't allowed to Kangroo any more. This meant that my dh couldn't hold her because they only would let her out of the issolet for 30 min each time she wanted to nurse, because she "might" get cold. No bothering to check if she was or not just that she "might". AHHHHH!!

I'd be bitter too. 20 days old before you could hold her? That would have about killed me, as I am sure it did you. The nurses in the NICU told me that holding the baby skin to skin is the best way to regulate their tempurature. I can't believe how ignorant they were. Many hugs to you.

How is she doing now? Good I hope.

Olivia