A week ago today, we weren’t sure what would happen during the day. I want to start by thanking you all for the warm wishes we have received through comments and emails – you are the best bunch of blog friends I could have ever hoped for! Thank you so much!
I thought I would tell you what has happened this past week, so this post may end up a bit long. However, as you know, we arrived at the hospital Monday morning, not knowing whether they would keep us or send us back home. Immediately upon our arrival, Frida coughed once, and a nurse who heard let us know that they almost certainly wouldn’t operate on her. However, after we had a doctor listen to her lungs, and examine her ears and throat, and after visits to several specialists, the conclusion was that she seemed alright, and they wanted to keep her until Tuesday to observe her health.
So after the examinations, Mads went home to get Ronja, and Frida and I passed the afternoon together in the hospital, playing, giving her a bath, and dressing her in hospital clothes. Later, Mads came back with Ronja to have dinner with us, and the girls were able to play for a while before Mads took Ronja home, and I went to put Frida to bed in our ward.
Early the following morning, Frida still wasn’t coughing much, and they decided to go ahead and do the operation at 8 am as planned. Frida wasn’t allowed to eat or drink, but because of the early hour, this wasn’t really a problem. She wore elma cream on her hands an hour and a half before the time of the operation to make sure she wouldn’t feel the needle they inserted for the anaesthetics. Just before leaving for the operating room, she had a drug to make her drowsy, to prevent her from feeling scared with everything that went on. I sure would have liked some of that as well – from the way Frida acted afterwards it must have been effective.
Mads and I went with her to the operating room all gowned up and wearing sterile hats. Frida sat on a kind of heat mat on the operating table, while she was connected to the surveillance equipment, and they gave her a polar bear teddy for comfort – everyone in the room was really great and acting totally professional.
When she was wired, we lay her down, and I sang her favourite song to her while she was falling asleep with a mask covering her nose and mouth. That was a pretty emotional moment for Mads and me, and I found it hard to leave her there – all vulnerable and in the power of people we didn’t know. After we left, they started to do their work – closing her cleft palate, and inserting ear tubes.
The hours passed – we had breakfast, I took a shower, we went to the hospital shop to get something for Frida, and we went back to the children’s ward to sit and wait. And walk around and wait. And then wait some more.
Finally, the surgeon came to let us know that her surgery went well, and that they were just waking her up when he left there. While I was talking to him, his phone rang and someone told him she was leaking a bit more blood than what they liked. He went down there to stop the leak, and everything went fine, but meant that she had to be drugged even more.
Finally they brought her up to us.
She was lying on her bed, breathing oxygen, and she wasn’t awake yet. We talked a lot to the kind nurse Karen while we were waiting for Frida to come round. When she did, she was very quiet, and with a sad look about her. One of the first things she said, was “Onja” (Ronja).
We spent the first hours just sitting with her, holding her, reading her books, giving her drinks of water that were flooded with blood in the first sip, and feeding her small portions of ice cream and yoghurt.
The first few hours were quiet, but afterwards she just kept on crying. The entire day, she had this look in her eyes that I will never forget – like she had been abandoned by the world.
Mads had to leave eventually – Ronja had been spending the day with his mom, and he had to go there to take her home to bed. I stayed in the hospital with a thoroughly unhappy little girl. She didn’t sleep properly until late in the evening, so at that time I had some dinner and went to bed.
Wednesday morning things were already a little better. Frida has to wear arm splints to prevent her from sticking her fingers in her mouth, and while she was sooo mad at those things the first day, she was already trying to get better at using them in the morning of the second day. We read books, cuddled, played a little, had some naps, and in the afternoon Mads and Ronja joined us to stay there for dinner and spend some time in the play room. Frida was thrilled to see her big sister!
The next few days we saw a lot of improvement. She started to be happier, play more, and eat more. The evenings were difficult though – she cried a lot during those evenings in the hospital.
We got back home Friday, and it definitely did Frida good. She has wounds at the corners of her mouth that need treatment, and she is wearing the arm splints, but the biggest challenges at the moment are actually her eating, and reestablishing some rhythm. She is only allowed to eat soft foods for a while, which means oat meal, yoghurt, soup, mashed potatoes – well, mashed you-name-it really. She is not allowed any kind of bread, which is a bit hard because Frida loves bread.
But hey, she is doing well. She clings to us a lot more than she usually does, but I believe that is natural. She also seems to cry a bit more, but I’m sure if any of us had the kind of surgery she did, we would find it rather unpleasant as well. Actually, we would probably complain more than she does.
If you wish to see more, the pictures are all found here.
This is Frida the first evening home – watching tv with Ronja, and they are wearing those night gowns that I mentioned what seems to be an eternity ago. We are all so glad that the operation is done with, and that we didn’t have to wait another couple of months. Now we can get on with our life as a family, and Frida can start learning to work with her new palate. So all is well – spring is here, and now I have three work days, then I’m off for Easter. Nice.
Jeg sidder her og mærker tårene trille. Billederne af Frida er så triste, helt anderledes end den glade pige der plejer at være på billederne. Samtidigt husker jeg kun alt for godt hvordan det er at lade lægerne gøre noget man som voksen ved er det eneste rigtige for barnet, men som samtidigt føles forkert fordi barnet selv er ulykkeligt. Det er så hårdt og I må allesammen være meget trætte nu. Men det værste er overstået nu og det hele gik godt. Tillykke. Masser af kærlige tanker fra Fejø
Sikken en lille sejg pige og hvor er det godt at operationen er vel overstået.
Rigtig god påske 🙂
Happy to hear that Frida is okay, it was quite a surgery. I know it’s hard to leave baby in operating room, even though they are professionals..
I’m pediatric nurse and was nice to see what hospital and kids ward looks like there and all other systems. I work at kids oncology ward and we’re wondering how to improve our play room 🙂
Hi Astrid, what a tender story. I’m so glad I never had to leave Pelle behind. But everyone seems to be so lovely for her. They really try to make it a comfortable as possible, don’t they.
Now she can recover and go on. I’m glad it’s over for you, too.
So glad the surgey went well and it is behind you now. Sounds like it was a very emotional week.
Jeg skrev til dig på flickr i går, men alligevel lige en lille hilsen for at fortælle, at jeg har tænkt på jer.
Hvor er det fint som i har fotograferet hele forløbet – det er jeg sikker vil være til gavn for alle – nu og senere hen i livet.
Jeg håber, at både Frida og Ronja har det godt…og at i er ved at samle kræfter til en dejlig påskeferie. :0)))
So glad to hear she’s well. Your story moved me to tears. It’s so hard when it’s your little baby! Hugs to you and Mads for getting through it. Once it’s all over that’s when it really hits you what a huge thing it was.
Thank you for sharing your experiences. Must be a great relief to have the worst over. Sending best wishes to you all especially Frida as she continues to heal.
oh astrid… thank you for sharing your story. the thought of leaving my baby in an operating room makes me teary eyed. the good news is she most likely will not remember those first few hours after surgery. the drugs, thankfully, give you a sort of amnesia. with such a loving family, she will soon put all of this behind her.
btw, your girls are stunningly beautiful.
I’m glad to hear that your sweet Frida made is home and happy. May the gracious Lord give her a speedy recovery.
I’m so glad that things went well. Thank you for sharing such a personal experience with us. Your daughter is definitely a trooper. What a brave and strong little girl!
Hvor er det godt at høre at Frida har det godt. Jeg må indrømme at tårerne også begyndte at trille her (jeg har dog undskyldningen at jeg er i hormonernes vold 🙂 )
Håber at alle har det godt – og nyder den kommende ferie.
Knus Katja
I’m so thankful she is alright and the surgery was successful. When I got to the “Onja” part, I totally started crying… what a sweet girl.
Oh Astrid, I so feel for you and Frida and Mads and Ronja. I cried throughout the entire story, because I know exactly how you feel. It was heartbreaking for me to see the little one on a hospital bed with tubes all over the place. Olivia was put in the hospital at 3wks of age. The first thing they did was a spinal tap. It took six nurses to hold her down, and she screamed for an hour. I could not stop crying because I felt so helpless. They did so many tests on her, and it was awful.
I am so happy to hear that she is doing fine, and that the surgery was a success. It seems that the hospital was very nice, and well equipped for taking care of you and the family. That is sooooo important.
Looking forward to more updates and sending big {{hugs}} to you and the family.
Jeannine
I’m so glad to hear that you all made it through. Thank you for sharing, it was such an emotional read.
I have never heard of the cream you mentioned to numb her hands, what a good idea. It was interesting seeing the hospital photos.
That made me weepy that she asked for “Onja”, how sweet. Glad you are all home safe and sound.
Happy to hear everythig is ok. Hugs.
I’m so happy that everyone made it through. Frida is a brave little girl! Sending get well wishes to her.
I’m happy to hear that Frida’s surgery went well. What a brave little patient! I know also how hard it is to leave the own vulnerable little child to the operating room. I’ve been in that situation also twice, although due to much smaller operations – and at the first time even my always so composed husband cried when we had to leave our baby girl.
Lot’s of hugs to your little patient, hopefully she’ll be back in business soon :).
Tusinde tak for at du delte jeres historie, jeg har siddet med tåre i øjnene hele vejen igennem.
Vi går til tjek med junior i den anden ende af gangen – og alle er bare SÅ søde deroppe på 8. – det er skønt at hospitalsvæsnet også kan være en god oplevelse
So glad to hear that Frida’s surgery went well and now it is behind her.
Thank you for sharing her story.
Hugs
Kære Astrid.
har tænkt på jer. har næsten dagligt være herinde på din blog for at se om der var noget nyt.
Er glad for at høre at alt er forløbet godt.
Hun er en sej lille pige.
Jeg håber I får en dejlig påske og nyde det gode vejr.
Oh, I’m so glad the surgery went well and that your sweetie is home and happier. What a hard thing to see your tiny child go through surgery. As always, beautiful pictures capturing the moments.
Thank-you so much for sharing your moving story. I felt so sad when I saw the photo where blood is coming out of her tiny little nose. Things must be very challenging for Frida with arm splints on – she must be so frustrated!! I’m so glad that it is now over for you and not always on your mind. Give a hug to brave little Frida for me.
Melinda
I am sooo glad Frida is well and the operation is over. I recently had to take my 3yr old, Rose, for dental surgery under anasthetic and can relate to that wierdness of being in a surgery theatre in robes etc. Happy Easter. Love to you all, Carla
Kære Astrid + familie.
Det var en meget bevægende fortælling. Godt at høre, at operationen gik godt – og godt, at Frida har en god familie her i efterforløbet.
God påske til jer alle, Karin.
Hi,
although I know most of the story already, tears were running down mij cheeks while reading it. I remember the first time that Marlinde got vaccinations, I had to cry with her. The way she was looking at me when she got the injections, I’ll never forget that. Seeing your own child having pain is not fun at all. However things can only get better for you now. Best wishes from Amsterdam!
So glad everything went well. What a trooper Frida is!
Nårh, det lille myr. Sikken en omgang! Håber I får hyggeniveauet op her i påsken!
Such sweet sisters. Frida is such a trooper. I am happy she is on the mend.
Oh Astrid, I am so glad she is healing well. What a little sweetheart Frida is. It about broke my heart when you wrote about leaving her there after singing her favorite song to her. She is so lucky to have such loving parents. And that is wonderful she and Ronja are so close. I hope the rest of the healing goes very smoothly.
my 2 years old went through a similar surgery 3 mothes ago. It was much as you described, including this betrayed look in her eyes, so I totally understand…
glad she’s healling now!
Hej Astid, sikke en trist læsning denne gang. Jeg synes virkelig at det er flot, at du deler den med alle os andre tilhængere af din side.. bliver helt rørt.. men dejligt at det gik godt.. Rigtig god påske til jer alle..
Vh Christina Skarø
Guys – I just don’t know what to say – you are the best! Biiiiig warm hug coming your way! So many beautiful words, and wonderful thoughts – THANK YOU!
Astrid, I must have been away from your blog for too long. Your story made me teary. I am so happy everuthing went well, but thinking of the ordeal you and your family went through, I feel myself lacking words. It must have taken so much of to keep so calm during all this, and I am deeply impressed. A ton of well-wishings from me, and a very happy easter.
X
J
Thanks so much for sharing your story. I can’t imagine how you must have been feeling. She’s been such a brave little girl! Glad that she’s recovering well.
Hi, i came across your website and I was wondering if I could ask you some questions regarding your little girls surgery.
My son was born a month ago and also has a cleft palate. We saw the surgeon and he is will be having surgery when he is 6 – 9 months.
I am, of course, super nervous about the surgery but reading how well Frida did, it makes me feel better. I know that it will be tough, the hospital, the surgery itself, and the recuperation.
How old was Frida when they operated? Also 6-9 months old?
How long did it take her to fully recover from the surgery?
Did she need any other operations?
How is she doing now? Is she having any issues with her speech?
Thanks so much for your story, it helps to know there are other people who have gone thru this that can help.
I hope Frida is fully recovered!
Janet
My daughter Miriam was born with a cleft lip and palate. It is not nice to have to put them through an operation, but it sounds like it went very nicely for her. Just wait until you see her bounce back (give her a month until she is completely over it).
My daughter was a bit smaller (3 months for her lip – 6 months for her palate) – now she is 3 years old and happy as anything.
Best wishes,
Alice