Getting scared

[struckles]

Hi! I know I am not online much, but I do find a lot of comfort here when I come. My twins (3 mo old) are scheduled to have their surgery next Monday. I don't know if it is post partum depression, nerves, or still grief over the loss of our first twins, but I get more weepy every day. Can you talk me through the first hours post surgery? What should I be prepared for? Did anyone try to nurse post-surgery?

[Addy]

Hi I just wanted to say I'm going to pray for your twins and if you ever need to chat just pm me and I'll send you my email. God bless and I'm sure they will do wonderfully. ps I've also got twins boy/girl 22 mos

[Mom2William]

Hi-We will keep you in our prayers too. I can't help with your nursing question, my son was 3 yrs. old at surgery. But right after surgery, he looked so vunerable but I was so very very relieved to be able to see him and touch him. He was in the PICU overnight with a respirator and all the other tubes. They kept him sedated so he would not fight the respirator but they removed it the next morning. He just briefly woke up at times and I would talk to him and rub his arms, hold his hands and he would go back to sleep. He gradually would stay awake a little longer each time and would talk and drink. He would not eat at first either.
The first hours after surgery were the easiest on him, since he was still sedated and in the PICU. But I would talk to him and stroke him any time that he started moving a bit and he would immediately settle down. This part of the surgery was the hardest for me. I cried some during the surgery, but I was truly peaceful and calm with all the wonderful people praying for me/us. But I just sobbed and sobbed while he was in the picu, just because of a number of emotions, I guess.
I know this time is a roller coaster of emotions for you. My heart is with you and your twins. They will bounce back so quickly that you will be amazed! Please update us after surgery!

[Katie]

:hugg My thoughts and prayers are with you. Your getting more weepy each day is normal, I was the same way :hugg I can't help with the bfing part, but I think Jennifer was breastfeeding at surgery time.
the first few hours after surgers, the twins will probably be slightly sedated still. It will be very hard to see them at first, I won't sugar coat that. But, you will be surprised by how quickly you are able to hold them again, and how much they need your touch and voice. When Dillon was fussing, hearing and feeling either me or Doug would calm him right down.
They will do great! Please let us know how it goes when you can :hugg

[Jennifer]

Emily was 4 1/2months and breastfeed only. She was kept sedated the first 2 days- so there was alot of pumping involved. The hospital did help w/ storage bottles, labels and storing the milk. She finally nursed again the morning of day 3. I tried nursing on day 2- but she was still pretty sedated and really had no interest- as she was peaceful, I didn't really try to disturb her too much. Post-op we were contstantly at her bedside-- just holding her little hand and whispering to her.
Your emotions are completely understandable. This is an incredably scary time as a parent, plus them being just 3 months old- your still physically/emotionaly 'getting over' (not the right words?) the pregnancy.

They will amaze you. We will say our prayers from you and your babies. Please keep us posted and keep asking questions as you need! :hugg

[MikenAustinsMommy]

I think Austin nursed on day 3 as well. He did throw up his first 3 attempts at feeding because of the medicine. I had to feed him for no more than a minute then wait 5 minutes and repeat until he was full, if I didn't he would throw it up all over me. After day 3 he had absolutely no problems nursing.

Check out the messages under http://www.craniokids.org/support/forumdisplay.php?f=28
It has really helpful items to bring with you.

[mom2mykidos3]

I pumped too for the first hours. The hospital I was at did have the pump and the storage bottles available. I think you just have to ask. Miriam did nurse the night after surgery. She did throw it up. I think that is very normal. The medicines seem to be very hard on their little tummies.
I know for me I was just so afraid to hold her. I was really timid while feeding her. In fact, it was the nurse that said I could feed her. I never would have thought of feeding her that soon.
As far as what you are feeling, it is perfectly normal. We have all been there.

[Jules]

Weeping and sadness is pretty normal. I am a control freak by nature and the fact that I had little or no control during this time of my life was just a hard pill to swallow. I cried a lot the week leading up to Gabe's surgery. I don't want to scare you but I also think you should know exactly what to expect. When they come out of surgery they are pretty swolen. Their eyes will swell shut and there might be some bruising. Gabe had a reaction to the tape that held his tubes in place, which left marks around his mouth. Babies are harder to get IV lines into so they might have needle marks on both of their hands and feet. They will be fussy and their sleep patterns are going to be messed up for awhile. Gabe took pedialite three hours after surgery and had his first bottle of fomula the next day. I have read that skin to skin contact is very nurturing and healing for babies, so I would imagine that they will want you to breast feed as soon as it is possible. All of that said, your little ones are going to amaze you. You will be in our thoughts and prayers. Please keep intouch and let us know how things go.

Jules

[struckles]

Thank you all! So, do they eat at all the first day? Do they tube feed them or something?

[Jennifer]

Emily barely ate the first 2 days-I tried a bottle and I was lucky if she got an ounce down in the first 24 hours. She was hooked up to an IV and they were comfortable w/ what that was providing.

[craniomommynbaby]

I was breastfeeding at the time of Simon's surgery. The first night, he had IV fluids and was kept asleep. Any time he would start to stir, they would up the morphine to make sure he stayed asleep. I pumped that day, and they gave me bar coded labels to put on the bottles. The PICU nurses kept the milk in their fridge. The next morning, they had me give him PediaLyte first. Simon and I are unusual in that anesthesia does not bother us. I can basically jump up after being under the knife and eat a huge meal with no problems. He downed the fluid. After they watched him for about 20 minutes and saw that he was fine, they let me feed him. After that, it was back to normal for us. I let them use the bottles at night so that I could get some sleep. I had just returned to work from maternity leave and needed to catch up on sleep. (We only slept 1-1/2 hours the night before the surgery, and I worked that night too.) I do suggest that you bring any pillows that you normally use and then be prepared to prop yourself up even more. Their heads are really heavy, and it is like holding a really heavy newborn. They usually have lots of wires attached still, so it is a bit of a contortion act at first. By the end of the first day of it, you will probably be a pro. Just when you are getting used to it, the wires come off.
If you need another person to chat with, feel free to call. We can all relate to some of how you are feeling. It tears you up inside that you are about to put your kids through this, yet you know it is for the better.

[Matthews Mommy]

:hugg Everything will be okay I will send all my prayers and hugs your way.
Matthew was bottle fed he had latching problems, but after surgery was on an IV for the first 24 hours and then we tried small amounts of formula till he was able to eat his normal amount they wanted to make sure he would not vomit and he held all his food down. The only thing Matthew threw up a lot was the iron replacement.

[eden'smom]

Eden was 5 1/2 mos and took no bottles. I tried to get her to accept one once we found out about surgery, but she refused and I was so nervous about that. Her surgons had suggested trying to get her to take a bottle. The nurses, hoewver, were great at helping position her so that I could nurse her. They arranged all the wires and tubes and stuff and positioned her head, which felt so heavy to me. It felt so good to nurse her then--for her nad for me, too. I pumped in between, as she went nearly 24 hours w/o nursing. I would suggest either bringing a pump or seeing if the hospital has one. I bought my own in preparation for this. Good luck to you. I am sure she will do well and I do know how scary this time is.

[Kari]

Hi and ((Hugs))

I know what an unbelievably tough time this is. It sounds like you are dealing with a incredible amount being only 3 months postpartum and having two children going into surgery. I'm sorry to hear of your loss. It all must feel very overwhelming at times, but please continue to post here.
Everyone is wonderful and there are so many positive stories to draw strength from. This site has helped me a great deal as we wait for our surgery in April.
I will be thinking of you, your twins and your family Monday.
They will do great, and so will you!

[Lori]

My prayers are with you.

[Valerie]

Only 2 weeks ago I was in your position, my son was 13 weeks at the time of operation. First of all, I second most of what these wonderful ladies have already said.

It is utterly overwhelming and very difficult to see your little one(s) after the surgery. It is not easy to see the change from when you said your good-byes. Mine was on oxygen because the breathing tube really irritated his throat and he had difficulty breathing. They had given him steroids post-op to reduce the swelling in his throat and they were watching him closely.

Initially, he was on saline and sugar-water via IV. For me, they took off the IV once he had begun to nurse, no longer received morphine, and showed signs of being alert and looking to nurse. Until then, pump whenever you have to to keep your supply up. I didn't pump enough and it took me a few days to build it back up. And to ditto something said above, they may have trouble keeping food down at first and you may need to keep the feedings shorter.

I do want to encourage you to remember that you are still your babies' advocate when it comes to personal comfort. His surgeons had required that his bed be put on a 30 degree angle, but I was the one who made sure he stayed propped up comfortably with rolled blankets tucked in a little under his shoulder blades. I was also the one who thought to keep his mouth & lips moistened before he was ready to eat. They gave me swabs once I asked about it, but I brought it up.

I'm sure that's different at every hospital, and the nurses overall will treat them very well. And they are vital and often your best supporters, so treat them well, of course.

Don't be shy about bringing a few personal items for your babies. I carried a receiving blanket around my neck throughout the day before and had them keep in with him through surgery (hoping there would be some comforting smells on it) and even though he never willingly kept it in his mouth on his own, I had made it a habit to use a pacifier with him once in a while and it was a great asset before surgery and after. They even had him suck it when they initially put him to sleep (the nurse laison witnessed it and told me about it).

I also brought one of my own bed pillows to have on my lap for holding and nursing - I was very glad to have it.

Just know that the emotions at first seeing them are very hard to prepare for, I didn't hear anything that was being said around me except for what I wanted to hear, that they believed he had come through the anesthesia well and was going to be fine as far as they could tell (just looking at him didn't assure me). I do hope you have a strong support with you! My husband was invaluable. He actually paid attention to what was said and was a great help to me when I felt the walls closing in around me more than once through the recovery time. Thank goodness for cell phones. He could sit with our son while I got out of the hospital for an hour and the knowledge that he could call me if there was a problem allowed me to relax an itsy bit & renew my strength while I was out.

I am praying! Hang in there and give yourself room to be a bit "nonfunctional" this weekend. I know I was.

Blessings!

[struckles]

Thank you all for your words of wisdom and support. We have to be at the hospital at 6 am tomorrow. Both babies have had stuffy noses - I hope they are not getting sick. I'll go crazy if I have to wait for another surgery date! :crazy

I'll touch base after the surgery!

[Jennifer]

Good luck tomorrow! Hopefully they are well and the surgery goes as scheduled! Many :hugg's and :pray's going your way!

[Anna Webb]

crying is so normal. My lily had surgery 2 months ago and i have never cried so much in my life. I felt so traumatised by what was happening and it was like a worst nightmare that wouldnt go away, but we got through it. It was really hard for us at the hospital getting her ready for the surgery, but once i had let her go into theatre, i knew that was it and when she came out of theatre i was able to put all my energy into caring for her and being with her in those early days after the surgery. it wasnt as bad as i thought and she was smiling within a few days even though pretty swollen. My heart goes out to you but it will all soon be behind you. Dont think your going nuts because all those tears come with the territory. All the best and let us know how the recovery is going. You will be amazed at how well your baby will do!
anna

[Anna Webb]

Also, i soooo agree about being your babies advocate!! I stayed 24/7 with Lily and there were many little things that i picked up on with her care - bleeding after the surgery, not doing wees and her bladder becoming bloated, night doctor trying to take her off the morphene without checking with us. Nothing bad happened, but i knew there was purpose in me being at her bed side and i did annoy the nurses with my constant questionning - dont ever be afraid to stand up to medical people because mum knows best!!!

[mayashekhina]

We havent had the cranial surgery yet but with two major heart surgeries under our belt I can definitely say that you do indeed have to make sure the medical people know that you do have to be answered to- as you are the one that knows and loves your child the best.

The amounts of times I have had to put doctors and nurses straight on the kind of care we expect for our Betty Girl is no joke, kind of have to get over the awe and the shyness quick and become mother bear. I kind of see it now that if you dont you get trampled over (yes we did nearly get trampled till I put my foot down) as they are quite busy and so they often need reminding that there is a little person behind the presented medical problem and if they dont get it right mother bear has to be answered to.

We have been forgotten about too many times for comfort and if I hadnt stayed on their case our needs would never have been adequately met.