new mom of preemie finally home - any tips on how to adjust?

Kelly - posted on 08/04/2011 ( 21 moms have responded )

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we finally have our 29 weeker home (almost been home for a month!). she is doing great - just has reflux and because of this is on an apena monitor. any other moms that had to deal with this? she is now 3 months old. i think she is doing better then me - with the NICU behind us i think i am still on that 'stress roller coaster' when does the worry end??

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Teresa - posted on 11/18/2011

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Mine came home with the apnea monitor and oxygen and another monitor (can;t remember exactly, I think a puls-ox of some sort) anyway the one that attatched to his chest we quit using almost immediately because they kept moving and the alarm went off ever few minutes. He stayed in our room a week and then we HAD to move him to his room so we could sleep. I think I after ouor first week at home we kind of relaxed. The first few years is always hard though, not as stressful as that first week.

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we came home on an apnea monitor and oxygen and had both for another 3 months. It's scary and exciting at the same time - it's normal to wish everything would just be the way a full-term baby would be, but it's not like that for us. My daughter is 16 yrs old and I still worry about how her disabilities will impact her ability to live a normal life, but I no longer worry about whether she is breathing! I guess I'm saying that you will always worry - all moms do - but you will also see the joys that a child brings as they grow. Take some deep breaths, find a parent support group or other moms' group and enjoy your child.

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Grace - posted on 11/12/2011

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My son who was born at 28 weeks weighting 2 pounds came home a month ago.he is almost 4 months & a little over a month corrected age.the best advice is wash your >hands< and keep hand sanatizer. Try to keep him in the house for the first few months.thank god my son dident need o2 or a apnea monitor. But just watch him because the machines do false alarms.good luck on your miracle.

Kelly - posted on 09/29/2011

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thanks all! we have gotten into a routine and things are going very well. no more apena monitor and her reflux is under control with Zantac. I can rest much easier!! appreciate all of the support!! she will already been 5 months (3 months adjusted) next week!!

Deanne - posted on 09/18/2011

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You will always worry, we are mommies, that is our job. It will get easier but the stress will never end. You made it home so celebrate every day and pat yourself on the back.

Mollie - posted on 09/18/2011

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I think it'll take a while for your "premie worry" to settle into "typical-parent worry", but I think you'll be SO much happier when that transition happens, so the sooner you can let it happen, the better. I would say to try to get to know as many mums and babies the same age as yours as possible (full term or premie). If theirs are full term, you may feel a bit like they don't understand all your concerns, etc, but the more time you spend with other babies, soon you'll see that even with full term ones, they're all different, they all start doing different things at different times, and after some months, you'll realise that your baby isn't really so different. As she gets older and starts being able to sit up and move by herself, you'll realise that she's stronger than you feared, and that everything is not so precarious as you've imagined. Try to relax and enjoy her. Mine was a bit slow to gain weight after we came home (I was intent on breastfeeding but didn't have a huge supply of milk, and my daughter didn't have a strong desire to eat, plus had reflux until shortly after she started on solids). My husband was constantly pressuring me about how well she'd eaten at every feeding, etc, etc. Now, at nearly age 3, she is big, strong, and healthy, but she still doesn't like mealtimes very much. I think our stress and anxiety about her weight gains and feeds rubbed off on her, and mealtimes for her are something a bit stressful. ...All this is just meant to say that it really is best to try to stay relaxed and calm as much as you can. They have sonar about your anxieties! Just try to enjoy her and love every hour that you get to spend with her. At this stage, it probably seems inconceivable that she will ever be two or three years old, but believe me, it FLIES by. ALSO, try to accept that you are doing the best you can, and that as long as she is having her physical needs met, plus getting lots of cuddles and being talked to, sung to, etc, she will probably thrive and feel loved (which goes SUCH a long way in encouraging their health and development). Even if your emotional states are not always what you'd like them to be, it's not so critical. Everyone has some wobbles now and then. The baby won't remember specific episodes (but chronic issues, like our excessive stress over meals, will perhaps stick with them, subconsciously). I think as parents, we will never stop worrying. As premie parents, we start off with even more to worry about, but in reality the more they are allowed to be normal, the happier they'll be. Good luck, and enjoy this time! You are so lucky to have a sweet little baby in your arms.

Tracey - posted on 09/12/2011

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My son is a 32 weeker. He is 22 months and he had all the usual premmie issues & spent almost 8 weeks in NICU/SCN. He had severe reflux for the first 9 months which caused obstructive apnoea but we slowly got used to dealing with it. Everything was elevated the bassinette, cot, change table etc, I expressed milk & fed him upright & kept him sitting upright for 20 minutes after. He seemd to keep more down that way. He was also medicated with omoprazole. It does get easier & the reflux will eventually settle but may seem like it never will. We do still have alot of issues with our son although no disabiliites. He basically still has no immune system so catches everything. He has had swine flu, coldsore virus, HFM and chronic ear infections (15+) since he was 7 1/2 months old. He has just had his 2nd general aneasthetic to put his 2nd lot of grommets in his ears and to remove his adenoids. Best thing you can do is keep your little girl at home, definately don't send her to daycare if you can help it, limit exposure to people incl family members particularly little kids, sterilise everything and I always had hand sanitiser in the house or in the nappy bag. Never feel bad for protecting your little girl and saying no to someone visiting or wanting to cuddle her. We also see a team of physio, occ health & speech path. He is alittle behind in his fine motor and speech bcus of hearing issues from the chronic infections but otherwise a normal, happy boy.

Theresa - posted on 09/12/2011

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My 26 weeker came home on oxygen and apnea monitor. She is 6 months now and been home for 3 months. The husband and I were nervous wrecks when she came home...I didn't sleep, he didn't sleep. But after we got into a routine, everything was good. She now is off the machines and meeting all her milestones.

When we left the hospital, we already had all her doc appts lined up. She sees a infant/toddler specialist every other week to monitor her development and give us"homework" on what to work on with her. She is so far meeting her 3 month adjusted milestones and some of her 6 month actual age milestones.

I think it made it easier for us when to talk to other parents of preemies (in our case micro-preemie) because they understood what we were going through. The ones taht had full term babies, didn't understand.

I worry about my little Kimmie all the time, and I think that will never change...

The stress of working about medical things on the preemie will go away...then the stress of raising a child kicks in :)

Sherry - posted on 09/07/2011

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my son is a former 29 weeker, he is now 17 month old. I still worry about him and he is perfectly healthy. I suggest you just take one day at a time, try not to look at tomorrow till tomorrow gets here. It is hard, but eventually you will not worry as much. Congrat's on fnaly bringing her home.

Bobbi - posted on 08/31/2011

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My preemie is 10, and I still worry about her. Even when I take her to the doctor now, I still mention she was a preemie as I believe some of her problems are related to that, eg, regular constipation or going for days with barely eating. I don't think it ever ends, but isn't that what being a mum is all about? My eldest is 19 and I still worry about him everyday :)

Megan - posted on 08/14/2011

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My son had to be on caffeine for apnea until he was 10 pounds. We have the reflux problem also. He is 9 months now. The apnea stress has ended for us but the reflux is still stressful to us. Im glad to find this website!

Lisa - posted on 08/09/2011

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i had my little girl at 30 weeks but she was the size of a 25 week she only weighed 1 pound 12 oz she is now five on the 27th of august she was in hospital till she was over three months old and it was very hard at the begining but it does get easier with time and belive me they are stonger than us i use to watch her so much at the start but as she got older i stopped worry as much so it just takes time chin up the hard part is over it will get easier from here and in

Fran - posted on 08/09/2011

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my 26 weeker is now 6 and i still check on him every night and put my hand near his mouth to check he's breathing. I think you will always worry, but it does get easier, especially once they start achieving "goal posts" but every so often something reminds you, and it always will, but you have an amazing baby to be proud of. Premmies are little fighters! Jim is unbelievably strong willed but we think thats what kept him alive. I still see the scares on his feet/wrists/shoulder blades from the lines but he is worth all the stress and heartache we went through to get him here. It does get easier. xxx

Deanne - posted on 08/09/2011

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Once you get into a routine things will settle down a bit and you will feel a little more relaxed. We brought our 25 weeker home after 178 days in the NICU and thought we were totally prepared but we lost our minds a little in the beginning. She was on O2 with a trach, had a feeding tube, and apnea monitor which was all different than what we had in the NICU. It takes a little adjustment, just like if you were to start a new job, you automatically don't know everything, you have a learning curve. Keep your chin up, and take it one day at a time. Our daughter is 18 months old now, still on O2 at night, still has the trach and feeding tube but is thriving. She smiles all the time, crawls and walks all over and chases our cat. Remember to celebrate little victories. Every day is a victory, they survived and are home so congratulate yourself, you are doing a good job.

Sarah - posted on 08/08/2011

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It gets better - but it never ever ends. My son was born at 28 weeks and weighed 2 lbs 10 ozs, and he will turn 6 in October - and I still worry about him. Mainly that he is scrawny and is a picky eater, because otherwise he is wonderful. You are a parent - it would be weird not to worry. Good luck!

Deb - posted on 08/08/2011

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Hi. I can totally relate to how you are feeling. My now 5yr old was a 24 weeker, weighed 1lb, 6oz. After her 11wk stay in the NICU we brought her home weighing 4.5lbs & on oxygen, which she remained on for the 1st couple months home. She also had the acid reflux, which casued feeding issues, as well as chronic constipation. Typically, preemies have some development issues that early intervention can help with, My daugher had EI until she was 3. In our case, my daugher was very lucky to only have the minor issues she has, including wearing glasses. I tried to focus on the fact that she was alive and that the situation could have gone the "other way" and she not have survived. They say most preemies "catch up" to their chronological age by the time they are 2. I'd say that is true, although I think when my daughter turned 3, we felt she was no different than any other 3yr old. She does still cont. to have reflux & constipation issues, which we handle w/meds. Because of these, we had a tough time w/potty training, but again, minor issues.
The best advice I can give you is to take it 1 day @ a time, just like when she was in the NICU. There will be some bumps in the road along the way, as well as LOTS of doctors appts! The hardest for me was comparing my daughter to "other chiclren" or other people constantly asking questions. It reminded me of the fact that my daughter wasn't "typical". As long as your doctors are happy with her progress & growth, then I would take a sigh of relief and just enjoy her. It does get easier as she grows and reaches another milestone, which for a preemie, are huge accomplishments.
Good luck!

Nira - posted on 08/07/2011

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Soon - ours was a 26 weeker! Now 31 years old - a major community organizer; National merit Scholar; Suma Cum Laude from college! We never stop worrying - but they do well! Blessings!

Cathy - posted on 08/07/2011

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My 29 weeker was 1lb 7oz.... He came home on o2 but has done amazingly well since! He us now 5 and entering kindergarten next month - he is amazing and you will see how strong and resilient these little babies can be. You will always worry though :-). Best of luck and try to take it one day at a time.

Kylee - posted on 08/07/2011

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My daughter who was born at 25 weeks,now 5 years old had come home on Apondea machine as well, the best thing is make sure you have hand wash and santizer and make sure no one comes in when sick, also if you take her shopping make sure you have a pram that fits Aponea machine on plus oxygen if she needs that, as my daughter did for alittle while. Make sure you have a Pram cover so no -one can breath on her. Thats my best advice as my daughter ended up in I.C.U in PMH perth in the same year she was born due to pnaemonia and made her lungs collapse, so be very careful with her. That is my best advice I can give you. Sorry if this scared you a little bit, I have two premature babies.http://www.facebook.com/groups/pbgaustra... for support and advice.

Ashley - posted on 08/06/2011

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My husband and I just brought our 29 weekers home(they are 38 weeks now)One of the twins came home a week and a half before the other came home.James came home without any asistance,meanwhile my other son has an apnea moniter as well as oxygen,plus he has to have a nurse come to the house 2 times a week due to the oxygen he is on.Ilike the fact that both of my boys are home,but am nervous stillbut I think that its normal.

Melissa - posted on 08/05/2011

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Hmmm, my former preemie is almost 3 and I still have not stopped worrying. :)



Seriously though, things do settle down once you start getting into a routine in your own home. I actually found that my baby blues kicked in once I brought our son home rather than right after he was born. I just had to keep reminding myself that he was healthy or they would not have sent him home with me and that I COULD take care of this little guy on my own.



Of course, we were very fortunate in that our son was only 7 weeks early and was out of the NICU in less than 3 weeks. I can only imagine how hard it was to have a little one come at 29 weeks! When you start feeling stressed, try to remind yourself of all that you and your little girl have already been through and how far she has come.



Don't be afraid to ask for help or to ask questions. I made sure we had a pediatrician who was willing to spend lots of time answering questions. I actually kept a magnetic notepad on the fridge and a list in my blackberry of questions for each doctor's visit. That way, I did not have to mentally keep track of all of my questions. If your pediatrician makes you feel silly for asking questions or rushes through the appointment, start looking for someone else.



Our NICU set us up with a Developmental Specialist before we were released. For me, it was comforting to go in every few months and have someone confirm that he was developmentally on schedule or give me tips on what to do to help him catch up.



I don't know how much help I will be, but feel free to message me if you have specific concerns or questions. If nothing else, I can at least sympathize with the trials of dealing with a preemie and reassure you that things do get easier. :)

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